International Review of RESEARCH IN MENTAL RETARDATION VOLUME 24
Board of Associate Editors Philip Davidson UNIVERSIT...
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International Review of RESEARCH IN MENTAL RETARDATION VOLUME 24
Board of Associate Editors Philip Davidson UNIVERSITY OF ROCHESTER MEDICAL CENTER
Michael Guralnick UNIVERSITY OF WASHINGTON
Linda Hickson COLUMBIA UNIVERSITY
Rathe Karrer UNIVERSITY OF KANSAS MEDICAL CENTER
William McIlvane E. K. SHRIVER CENTER
Glynis Murphy UNIVERSITY OF KENT AT CANTERBURY
Ted Nettelbeck UNIVERSITY OF ADELAIDE
Jean-Louis Paour « AIX-EN-PROVENCE UNIVERSIT E« DE PROVENCE A
Marsha M. Seltzer UNIVERSITY OF WISCONSIN
Jan Wallander CIVITAN INTERNATIONAL RESEARCH CENTER
International Review of RESEARCH IN MENTAL RETARDATION
EDITED BY
LARAINE MASTERS GLIDDEN DEPARTMENT OF PSYCHOLOGY ST. MARYÕSCOLLEGE OF MARYLAND ST. MARYÕSCITY, MARYLAND
VOLUME 24
San Diego San Francisco New York Boston London Sydney Tokyo
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Contents
Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
ix
Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
xi
Self-Determination and Mental Retardation Michael L. Wehmeyer I. II. III. IV. V.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Overview of Self-Determination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research in Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Models of Self-Determination and Mental Retardation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1 3 11 23 38 41
International Quality of Life: Current Conceptual, Measurement, and Implementation Issues Kenneth D. Keith I. II. III. IV. V.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conceptualizing Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Measuring Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Applying the Quality of Life Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
49 50 55 64 66 67
Measuring Quality of Life and Quality of Services through Personal Outcome Measures: Implications for Public Policy James Gardner, Deborah T. Carran, and Sylvia Nudler I. Introduction and History of the Council . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . II. Toward a ÒPerson-by-PersonÓApproach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . v
75 76
vi III. IV. V. VI. VII.
CONTENTS
A Social Context for Quality and Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Importance of Personal Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
77 78 80 83 97 99
Credulity and Gullibility in People with Developmental Disorders: A Framework for Future Research Stephen Greenspan, Gail Loughlin, and Rhonda S. Black I. II. III. IV. V.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . A Proposed Model For Explaining Gullible Behavior . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Real-World Manifestations of Credulity and Gullibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Locating Gullibility and Credulity in a Larger Scholarly Literature . . . . . . . . . . . . . . . . . . . . Gullibility and Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
101 104 111 119 129 132
Criminal Victimization of Persons with Mental Retardation: The Influence of Interpersonal Competence on Risk T. Nettelbeck and C. Wilson I. II. III. IV. V. VI.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Theories of Victimization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . An Application of SparksÕs Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Implications of Heightened Risk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
137 142 152 155 161 163 164
The Parent with Mental Retardation Steve Holburn, Tiffany Perkins, and Peter Vietze I. II. III. IV. V. VI.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Historical Trends and Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Demographic Trends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Parenting Adequacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Research Limitations and Suggestions for Future Research . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
171 173 177 184 199 201 204
vii
CONTENTS
Psychiatric Disorders in Adults with Mental Retardation Steve Moss I. II. III. IV. V. VI. VII. VIII. IX.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . DeÞning Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevalence of Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Pathway to Mental Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Diagnosis of Mental Health Problems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Service Organization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
211 212 215 220 222 230 233 234 234 235
Development and Evaluation of Innovative Residential Services for People with Severe Intellectual Disability and Serious Challenging Behavior Jim Mansell, Peter McGill, and Eric Emerson I. II. III. IV. V.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Providing High-Quality Services in the Community. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Achieving a Better Quality of Life . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Individual Illustrations of Placement Success and Failure . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
245 249 258 272 283 292
The Mysterious Myth of Attention Deficits and Other Defect Stories: Contemporary Issues in the Developmental Approach to Mental Retardation Jacob A. Burack, David W. Evans, Cheryl Klaiman, and Grace Iarocci I. The Myth of Attentional Problems: An Example of the Defect Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . II. Origins of the Developmental Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . III. Expanding the Study of Mental Retardation to Include Persons with Organic Etiology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . IV. Methodological Strategies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . V. Issues of Developmental Levels of the Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . VI. Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
300 303 305 309 313 316 317
viii
CONTENTS
Guiding Visual Attention in Individuals with Mental Retardation Richard W. Serna and Michael T. Carlin I. II. III. IV.
Discrimination Learning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guidance of Initial Observing Responses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Guiding Observing Responses: Matching-to-Sample Training . . . . . . . . . . . . . . . . . . . . . . . . Summary and Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
322 336 345 350 352
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
359
Contributors
Numbers in parentheses indicate the pages on which the authorsÕcontributions begin.
Rhonda S. Black (101), University of Hawaii at Manoa, Honolulu, Hawaii 96822 Jacob A. Burack (299), McGill University, Montreal, Quebec, Canada Michael T. Carlin (321), Shriver Center, University of Massachusetts Medical School, Waltham, Massachusetts 02452 Deborah T. Carran (75), Johns Hopkins University, Baltimore, Maryland 21218-2680 Eric Emerson (245), Institute for Health Research, University of Lancaster, Lancaster, United Kingdom David W. Evans (299), Bucknell University, Lewisburg, Pennsylvania 17837 James Gardner (75), The Council on Quality and Leadership, Towson, Maryland 21204 Stephen Greenspan (101), Health Sciences Center, University of Colorado, Denver, Colorado 80217-3364 Steve Holburn (171), The New York State Institute for Basic Research in Developmental Disabilities, Staten Island, New York 10314 Grace Iarocci (299), McGill University, Montreal, Quebec, Canada Kenneth D. Keith (49), Department of Psychology, University of San Diego, San Diego, California 92110-2492 Cheryl Klaiman (299), McGill University, Montreal, Quebec, Canada Gail Loughlin (101), University of Connecticut, Storrs-MansÞeld, Connecticut 06269 Jim Mansell (245), Tizard Centre, University of Kent at Canterbury, Kent, United Kingdom ix
x
CONTRIBUTORS
Peter McGill (245), Tizard Centre, University of Kent at Canterbury, Kent, United Kingdom Steve Moss (211), Institute of Psychiatry, KingÕs College London, London SE5 8AF, United Kingdom T. Nettelbeck (137), Department of Psychology, University of Adelaide, Adelaide, South Australia Sylvia Nudler (75), The Council on Quality and Leadership, Towson, Maryland 21204 Tiffany Perkins (171), The Graduate School and University Center of the City University of New York, and the New York State Institute for Basic Research in Developmental Disabilities, Staten, Island, New York 10314 Richard W. Serna (321), Shriver Center, University of Massachusetts Medical School, Waltham, Massachusetts 02452 Peter Vietze (171), The New York State Institute for Basic Research in Developmental Disabilities, Staten, Island, New York 10314 Michael L. Wehmeyer (1), Beach Center on Families and Disability, Schiefelbusch Institute on Life Span Studies, The University of Kansas, Lawrence, Kansas 66045 C. Wilson (137), Department of Psychology, University of Adelaide, Adelaide, South Australia
Preface
This current volume of the Review is eclectic, as have been almost all the volumes that precede it. Despite its breadth, however, there are a few themes that thread their way through several chapters connecting them by explicating issues that are common to their topics. The Þrst eight chapters demonstrate this interconnection. In each of them, the authors focus on adults with mental retardation. By comparison, in Volume 1 of the Review, published in 1966, none of the chapters focused on adults with mental retardation. This change should not be surprising because society has changed, as have the lives of people with mental retardation. Authors are writing about a contemporary Þeld that reßects this society and these lives. Another theme that links these Þrst eight chapters is a concern with the life circumstances of the adults with mental retardation. In Chapter 1, Michael Wehmeyer examines the meaning, models, and research relevant to self-determination in persons with mental retardation. His model of self-determination is comprehensive, incorporating characteristics of the individual and the environment, whereby capacity and opportunity interact with perception and beliefs to yield varying degrees of autonomy, self-regulation, and self-realization. Not surprisingly (at least for Western societies), greater self-determination is related to higher quality of life. Also, not surprisingly, the next two chapters in this volume deal directly with quality of life. In Chapter 2, Ken Keith takes on the Herculean task of reviewing the conceptual and scientiÞc underpinnings of quality of life. Some issues raised are inherent to all research. For example, even the simplest of concepts is fraught with multiple deÞnitions and failures to specify appropriate methods of measurement. In addition to these universal issues, however, the quality-of-life construct as applied to persons with disabilities has some problems that are speciÞc, if not unique, to it. One of them is the informant/proxy problem: When the person with mental retardation is unable to respond on his or her own behalf, a surrogate responds instead. Keith appropriately concludes that this issue is an important one and requires more research. Quality of life is also the primary focus of Chapter 3, coauthored by James Gardner, Deborah Carran, and Sylvia Nudler. Using analyses of a large data set, they were able to demonstrate that, whereas health and safety issues seemed independent of where people lived and which organization funded the residence, xi
xii
PREFACE
psychological characteristics such as identity, autonomy, afÞliation, and attainment were inßuenced by the environmental variables. Larger and more restrictive settings were associated with fewer outcomes relating to these psychological variables. Clearly, these Þndings have implications for public policy. The authors are cautious in pointing out the limitations of their current data, but certainly, their results should be an impetus for replication across other settings. Without doubt, the interaction of the person with the environment inßuences quality of life. One important person characteristic is the ability to assess the degree to which others in the environment are fair in their treatment, having help rather than mischief in mind. In their innovative chapter, Greenspan, Loughlin, and Black posit that people with developmental disabilities are likely to be more credulous and gullible than those without disabilities. They propose a multidimensional model in which personal competence factors mediate between environmental factors and social outcomes. This chapter and the proposed model are likely to be heuristic. Currently, the research on this topic is scanty. I predict that it will not be that way for long. In a less than perfect world, gullibility and credulity make victimization more probable. In Chapter 5, Ted Nettelbeck and C. Wilson spotlight criminal victimization with attention to prevalence, theories of victimization, and types of intervention that might reduce it. They conclude that persons with mental retardation are especially at risk for crimes against the person and examine what behaviors of the victim contribute to this higher risk. Interestingly, within the mental retardation range of functioning, it is interpersonal incompetence rather than lower intellectual functioning that seems to lead to greater victimization. Models of quality of life generally include choice, and one life choice for most adults is that of parenting. When the adult has mental retardation, however, there are societal values that question the wisdom of that choice. In Chapter 6, Holburn, Perkins, and Vietze review the research on parents with mental retardation. They conclude that although the research is plagued with methodological problems, some cautious conclusions are possible. Persons with mental retardation display a wide range of parenting skills; nonetheless, they almost always need extensive external supports in order to be adequate caregivers for their children. In this domain, perhaps more than any other, the quality of life of the adult with mental retardation must be counterbalanced with the welfare of the child that he or she is rearing. Adults with mental retardation sometimes have other disabilities that are critical to the kinds of lives they lead. In Chapter 7, Steve Moss summarizes what we know about adults with mental retardation who also have psychiatric disorders. Accurate diagnosis and treatment of these disorders is essential for the enhancement of the quality of life of the individuals themselves as well as those who are part of their community. Moss concludes that although considerable progress has been made
PREFACE
xiii
in case identiÞcation and diagnosis since the mid-1980s, we can claim many fewer advances in treatment and treatment evaluation. He cautions particularly about the need to consider the likelihood of treatment efÞcacy and level of intellectual functioning. The mental health behaviors and needs of those with severe and profound mental retardation are considerably different from those with higher levels of functioning. It is this population with severe intellectual disability as well as serious challenging behavior that is the focus for Jim Mansell, Peter McGill, and Eric Emerson. This population is especially difÞcult to serve in the community, and they frequently remain in institutional placement long after others leave. The project case study described in Chapter 8 provides a demonstration of both the successes that are possible as well as the difÞculties that will inevitably occur as programs deal with cost reduction, integration of specialist and generic services, reliance on longterm institutionalization as public policy, and other issues that are endemic to the context. The authors are wise in their reminder that from both a service delivery and research perspective, attention must be given not only to the characteristics of clients but also to the organizations serving these clients. In the Þnal two chapters, the eclectic nature of this volume reasserts itself. The coauthors of both chapters turn their attention to attention. In Chapter 9, Burack, Evans, Klaiman, and Iarocci challenge the view that there is an attentional deÞcit in persons with mental retardation. On the basis of their review of an approximately 40-year literature, they conclude that the empirical evidence does not support an overarching relation between attention deÞcit and mental retardation when appropriate comparisons are made among individuals functioning at the same general mental age level. Their conclusion, however, does not obviate that some speciÞc etiology groups may exhibit attention deÞcits, and they encourage etiology-focused research to address this issue. Finally, Richard Serna and Mike Carlin address attention quite differently, although they share some references with Burack et al. In their chapter, they are not concerned with whether stimulus discrimination problems in individuals with severe mental retardation are a reßection of a speciÞc deÞcit or part of an overall low level of intellectual functioning. Regardless, understanding why it occurs has important beneÞts for both theory and intervention. They review and summarize past research as well as describe their own ongoing program and conclude the following: With a variety of visual tasks, performance is modiÞable, and improving both observing and attending behaviors also improves performance on the task. As always, the breadth of expertise exempliÞed in a volume of the International Review is enormous. I rely on a multitude of others for that expertise. In addition to the Board of Associate Editors, especially Linda Hickson, Bill McIlvane, and Glynis Murphy, who were especially helpful in both soliciting and reviewing manuscripts for this volume, there were many other dedicated colleagues who
xiv
PREFACE
served willingly and ably as reviewers. SpeciÞcally, Ivan Brown, Tony Charman, Bob Cummins, Maurice Feldman, Eileen Furey, Stephen Greenspan, Bob Hodapp, Pat Howlin, John Jacobson, Janey McMillen, Chris Oliver, Rebecca Renwick, and Bob Schalock provided thoughtful and timely comments. Without their service, this volume, and the Þeld in general, would suffer. LARAINE MASTERS GLIDDEN
Self-Determination and Mental Retardation MICHAEL L. WEHMEYER BEACH CENTER ON FAMILIES AND DISABILITY SCHIEFELBUSCH INSTITUTE ON LIFE SPAN STUDIES THE UNIVERSITY OF KANSAS LAWRENCE, KANSAS
I.
INTRODUCTION
Self-determination is a construct with its historical roots in philosophy and the age-old debate concerning human determinism. Its meaning is draped in political calls for self-governance and independence, and its understanding is linked with issues of personal efÞcacy, human agency, and motivation. Since the perception of people with mental retardation as competent, able, and worthy of respect and dignity is a relatively recent occurrence, it is not surprising that discussions about self-determination have, by and large, excluded consideration of its application to people with mental retardation. In the past 2 decades, however, self-determination has become an important construct in disability services and advocacy circles, primarily in education and adult services. While the latter has focused on selfdetermination in a ÒcollectiveÓ sense (the rights of people or peoples to selfgovernance), efforts in special education have focused on the individual or personal use of the construct reßecting the historical debate in psychology concerning determinants of human behavior. As the construct has been applied to people with disabilities, including people with mental retardation, several models of self-determination as a personal construct have emerged within the disability literature. The purpose of this chapter is to introduce readers to the construct; overview research upon which conceptualizations of self-determination within mental retardation have been based, including research in personality, cognitive, developmental, social, experimental, and community psychology; describe the theoretical models themselves; and provide direction for future research. The term Òself-determinationÓhas two primary meanings, both which have a long history of use outside the disability Þeld. The American Heritage Dictionary INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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C 2001 by Academic Press. Copyright All rights of reproduction in any form reserved.
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of the English Language (1992) identiÞes self-determination as a noun and deÞnes it as: 1. Determination of oneÕs own fate or course of action without compulsion. 2. Freedom of the people of a given area to determine their own political status; independence. Both meanings are roughly synonymous with the term self-governing, an adjective that means (1) exercising control or rule over oneself or itself or (2) having the right or power of self-government (The American Heritage Dictionary of the English Language, 1992). The Þrst meaning of the construct is one of a personal self-determinationÑcontrolling oneÕs life and oneÕs fate. The second meaning refers to a national, political or collective self-determination, the right of a nation or a group of people to self-governance. A.
National, Political, or Collective Self-Determination
The national or political sense of the term seems to be Þrst widely used, or at least within American circles, during Woodrow WilsonÕs second presidential term. In 1918, as World War I drew to a close, Wilson formulated 14 points that would offer self-determination (as self-government) to the European nations involved in the war and pave the way for general disarmament. This usage remains the most common application of the term, primarily within the Þeld of political science. Although most frequently used to refer to the right of a nation or country to self-governance, the term has equal applicability to people whose group identity is deÞned by criteria other than geographic boundaries, including people self-identiÞed by cultural or racial characteristics (e.g., Native American selfdetermination), sexual orientation, gender, or disability status. Vaughan (1993), for example, refers to the Òstruggleof blind people for self-determinationÓ(p. i). In recent years there have been a number of efforts to implement systemic changes within adult-service delivery systems serving people with mental retardation or developmental disabilities that utilize strategies such as person-centered planning, vouchers, individual budgeting, and so forth to enable the recipients of these services to have greater control over the types and intensity of supports available to them (Nerney & Shumway, 1996). These efforts take as their starting point the right of people with mental retardation to self-determine their lives and the use of the construct within these efforts refers to this political or collective sense of the term. B.
Personal Self-Determination
The second use of the term, that of a personal construct, emerged in the early 1940s along with the development of the Þeld of personality psychology, although related debates around ÒdeterminismÓ(discussed subsequently) have been around
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for centuries. It is on this personal sense of the construct that the remainder of this chapter focuses, so a more thorough review of these issues follows in the next section. However, it is worth noting from the onset that there is often confusion associated with the term ÒdeterminationÓas it pertains to the construct self-determination. The noun ÒdeterminationÓhas multiple meanings, including (1) the act of making or arriving at a decision or the decision reached (e.g., the choice of a foster home was left to the court to determine) and (2) Þrmness of purpose or resolve (e.g., he was determined to succeed) (The American Heritage Dictionary of the English Language, 1992). The personal form of self-determination (e.g., determination of oneÕs own fate or course of action without compulsion) is not just adding the Òself-Óreferent to the Þrst meaning of determination, thus referring only to a decision one made. Nor is it synonymous with the second deÞnition (Þrmness of purpose or resolve), despite the tendency of many people to use self-determination in this manner. In fact, the meaning of ÒdeterminationÓin self-determination is synonymous with Òdeterminant,ÓdeÞned as Òan event or antecedent condition that in some way causes an eventÓ(Wolman, 1973, p. 97).
II.
OVERVIEW OF SELF-DETERMINATION
Theories of personal self-determination are, in essence, theories of how or why people become self-governing and exert control over their lives. With a few exceptions, the bulk of the theoretical work in this area has not used the term selfdetermination, per se, but instead focused on components that contribute to selfdetermination, including human control and causality, self-efÞcacy and outcome expectations, self-regulation, achievement, effectance and mastery motivation, interpersonal problem solving, goal setting and attainment, and so forth. The theories that explain and predict human behavior in these diverse areas include personality and motivation theories and theories of learning and cognition and have emerged from numerous disciplines. The remainder of this section examines historical understandings of self-determination, issues in deÞning the construct, and its link with disability. Subsequent sections examine research on self-determination and mental retardation and overview prevailing models of self-determination. The chapter closes with directions for research. A.
Historical Understandings of Self-Determination
1. DETERMINISM AND SELF-DETERMINATION As discussed previously, the construct ÒdeterminismÓrefers to the doctrine that all phenomena, including human behavior, are effects of preceding causes (Wolman, 1973). Determinants of human behavior (e.g., causes of human behavior)
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include physiological, structural, environmental, and/or organismic factors. In psychology and in education, the degree to which those determinants are external versus internal has been the basis for much contention. In fact, suggesting that self-determination has its roots in debates about determinism may seem contradictory. One dictionary deÞnition of self-determination is Òfreewill,Óyet the classic debate in psychology has pitted determinism against free will, as best exempliÞed, perhaps, by B. F. SkinnerÕs text Beyond Freedom and Dignity (1971). However, Bandura (1997) noted that in discussions of human agency, referents to the term ÒdeterminismÓimply the Òproductionof effects by events, rather than the doctrinal sense meaning that actions are completely determined by a prior sequence of causes independent of the individualÓ(p. 7). Bandura expanded on this, stating: Freedom is often considered antithetical to determinism. When viewed from a sociocognitive perspective, there is no incompatibility between freedom and determinism. Freedom is not conceived negatively as exemption from social inßuences or situational constraints. Rather it is deÞned positively as the exercise of self-inßuence to bring about desired results. This agentic causation relies heavily on cognitive self-regulation. (p. 7)
As the Þeld of personality psychology emerged in the 1930s, this distinction became the focal point for examination, as discussed in the following section. 2. PERSONALITY PSYCHOLOGY, INDIVIDUAL DIFFERENCES, AND SELF-DETERMINATION The earliest conceptualizations of self-determination within the personality literature used the term as it related to the determination of oneÕs own fate or course of action without compulsion. For example, in his early text titled Foundations for a Science of Personality, Angyal (1941) proposed that an essential feature of a living organism is its autonomy, where autonomous means self-governing or governed from inside. According to Angyal, an organism Òlives in a world in which things happen according to laws which are heteronomous (e.g., governed from outside) from the point of view of the organismÓ(p. 33). Angyal stated that Òorganisms are subjected to the laws of the physical world, as is any other object of nature, with the exception that it can oppose self-determination to external determinationÓ(p. 33). Angyal suggested that the important task for developing a science of personality was the identiÞcation of principle(s) of the biological total processÑthe movement of organisms from undifferentiated parts to an organized whole. He deÞned the Òbiologicaltotal processÓas a trend toward autonomy and argued that the science of personality is, in essence, the study of two essential components or determinants to behavior, autonomous determination (or self-determination), and heteronomous determination (other-determined). He noted that Òinthe realm of Ôorganismic happeningsÕwe Þnd neither entirely autonomous nor entirely heteronomous determinantsÓ(p. 21) and suggested a psychology of individual differences by noting that, within nature, there are marked variations in the importance and balance
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of autonomous and heteronomous determinants to behavior. Nonetheless, Angyal places primary importance for laying the foundation for a science of personality in the fact that a central process of an organism is the movement toward autonomous determination. He showed this by stating: It would probably be generally agreed that without autonomy, without self-government, the life process could not be understood. Selection, choice, self-regulation, adaptation, regeneration are phenomena which logically imply the autonomy of the organism. Selection, that is the search for certain environmental conditions, is only possible in a being capable of self-directed activity. (p. 34)
It is worth noting another corollary of AngyalÕs thesis of the centrality of selfdetermination to personality study; that is, behavior is neither exclusively internally nor externally determined. He noted: the autonomy of the organism is not an absolute one. Self-determination is restricted by outside inßuences which, with respect to the organism, are heteronomous. The organism lives in a world in which processes go on independent of it. The organism asserts itself against the heteronomous surroundings. (p. 38)
3. MOTIVATION AND SELF-DETERMINATION One theoretical perspective that addressed self-determination speciÞcally is the work of Deci and colleagues (Deci & Ryan, 1985), who proposed a theory of intrinsic motivation that incorporates a central role for self-determination. Based largely on WhiteÕs (1959) proposal of an innate, intrinsic energy source, referred to by White as effectance motivation and which was theorized to motivate a wide variety of human behavior, and also building on work by cognitive theorists on personal causation and perceived locus of causality (Heider, 1958; deCharms, 1958), Deci (Deci, 1975; Deci & Ryan, 1985) proposed that intrinsic motivation and self-determination were Ònecessaryconcepts for an organismic theoryÓ[of motivation] (Deci & Ryan, p. 7). In 1975 Deci forwarded a theory to explain empirical Þndings concerning the effects of external events on intrinsic motivation. This theory, called cognitive evaluation theory (Deci, 1975), contained three primary propositions: (1) people have an intrinsic need to be self-determining; (2) people have an intrinsic need to be competent and master optimal challenges; and (3) events relevant to the initiation and regulation of behavior have three aspects (informational, controlling, and amotivating) that are differentially salient to different people (Deci & Ryan, 1985, p. 62). Deci and colleagues (Deci & Ryan, 1985) later expanded their original conceptualization and this expanded theory is referred to as self-determination theory. Brießy, Deci (1992) summarizes self-determination theory as Òdistinguish[ing]between the motivational dynamics underlying activities that people do freely and those that they feel coerced or pressured to do. To be self-determining means to engage in an activity with a full sense of wanting, choosing, and personal endorsement. When self-determined, people are acting in
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accord with, or expressing, themselvesÓ(p. 44). Within self-determination theory, Deci and Ryan deÞne self-determination as: the capacity to choose and to have those choices, rather than reinforcement contingencies, drives, or any other forces or pressures, to be the determinants of oneÕs actions. But self-determination is more than a capacity, it is also a need [italics added]. We have posited a basic, innate propensity to be self-determining that leads organisms to engage in interesting behaviors. (p. 38)
DeciÕs research focused attention on the importance of student motivation and interest in learning, although a primary purpose of that research was to examine the putative detrimental effects of external rewards on motivation (Deci, 1975; Deci & Ryan, 1985). This line of research has provided strategies to increase student motivation in the classroom for students with and without disabilities (Deci & Chandler, 1986; Deci, Hodges, Pierson, & Tomassone, 1992) and has contributed to an understanding of the impact of teacher control orientation on student motivation and performance (Boggiano & Katz, 1991; Deci, Spiegel, Ryan, Koestner, & Kauffman, 1982; Flink, Boggiano, & Barrett, 1990). B.
Issues in Defining Self-Determination
One step in the theory development process is the production of both constitutive deÞnitions (e.g., deÞning a construct with other constructs) and operational deÞnitions (e.g, assigning meaning to a construct or variable by specifying the operations necessary to measure it). Given this, ÒdeÞningÓself-determination is a function of and contextually related to the theory development process and, as such, speciÞc deÞnitions will be left to discussion within the context of the four theoretical perspectives presented subsequently. However, there are some overall issues in deÞning self-determination that warrant consideration. Self-determination has been deÞned in a number of ways in the disability literature, particularly (a) as a basic human right, (b) as a speciÞc response class, and (c) as based on functional properties of the response class. DeÞning self-determination as a basic human right is largely associated with the political or collective sense of the term and not dealt with in the context of this chapter. DeÞning a construct as a speciÞc response class means to deÞne it by a set of behaviors, and this has been the dominant means of deÞning the construct in relation to disability. Many instructional activities ÒdeÞneÓself-determination based on a description of how Òself-determinedÓ people act, and this may or may not be sufÞcient depending on the scope and intent of the activity. That is, deÞning self-determination as making decisions and choices may be adequate if the instructional materials are designed only to teach decision-making and choice-making. However, when one more closely considers deÞnitions based on a response class, the difÞculty of this approach to deÞning self-determination becomes readily apparent. It is well and good to say that people who are self-determined set goals for themselves, make decisions, speak up for
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their rights and so forth, since many times that is an apt description of the behavior of someone who is self-determined. However, if self-determination means assuming control over oneÕs life and destiny, then virtually any behavior could be an attempt to exert control. The fact that some challenging behaviors exhibited by people with signiÞcant disabilities have a communicative intent illustrate at least one example where behaviors not typically listed in response-class deÞnitions are, seemingly, attempts to take greater control over oneÕs life. The obvious drawback to such an approach is that a deÞnition of self-determination based on a response class or a speciÞc set of behaviors would, by necessity, need to expand to include virtually any behavior. A second problem with deÞning self-determination as a response class is that such a listing of behaviors must include both the occurrence and nonoccurrence of a given behavior or action. For example, there are times when speaking up and being assertive are the best course of action if one is acting in a way that best achieves oneÕs goals and objectives, while there are other times where it is best to be quiet and acquiescent. Thus, even something as seemingly fundamental as ÒbeingassertiveÓcannot really capture the sense of taking control over oneÕs life inherent in the term self-determination. Two other issues are problematic when deÞning self-determination as a response class. First, such activities are tautologicalÑwe know someone is self-determined because he or she does the things by which we deÞne the construct (e.g., sets goals and makes decisions). Second, deÞning self-determination as a response class ignores cross-cultural differences in what is or is not socially valued and acceptable. While being assertive may be a way to exert control in one culture, in another culture it might just be disrespectful and inappropriate. The alternative to deÞning self-determination as a response class is to deÞne it based on the function of the speciÞc response-classÑthat is, based on the function (purpose) of the behavior. People are self-determined based not on what they do, but on the purpose or function of their action (to take control over their lives, live the way they want, etc.). Other constructs within psychology and the social sciences rely largely on functional deÞnitions and, indeed, one deÞnition of mental retardation itself has moved to a more functional approach (Luckasson et al., 1992). There have been a number of misinterpretations of self-determination within the Þeld of mental retardation that contribute to confusion in deÞning the construct. One such misinterpretation is that self-determination is identical to the independent performance of behaviors or, more simply, just means doing things for yourself. When self-determination is interpreted strictly to mean Òdoingit yourself,Óthere is an obvious problem for people with mental retardation, many of whom may have limits to the number and types of activities they can perform independently. However, the capacity to perform speciÞc functions is secondary in importance in becoming self-determined to whether one has control over the outcomes such functions are implemented to achieve. Control is deÞned as Òexercising authoritative
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or dominating inßuence overÓ(American Heritage Dictionary, 1992) and is synonymous with the verb ÒdirectÓ,meaning ÒtomanageÓ.[For deÞnitional purposes, however, the term ÒcontrolÓis preferable to either ÒdirectÓor ÒmanageÓ(e.g., selfdetermination is directing oneÕs life) because ÒcontrolÓis also synonymous with ÒpowerÓand retains the emphasis on empowerment inherent in the use of the term within the disability community discussed subsequently]. Self-determination is not just the independent performance of behaviors. People who have signiÞcant physical disabilities can employ a personal assistant to perform routine activities and, if such functions are performed under the control of that person (e.g., person with disability), it is really a moot point whether the person physically performed the activity. Likewise, a person with a signiÞcant cognitive impairment may not be able to ÒindependentlyÓ(e.g., alone and with no support) make a complex decision or solve a difÞcult problem. However, to the extent that supports are provided to enable that person to retain control over the decisionmaking process and to participate to the greatest extent in the decision-making or problem-solving process, he or she can be self-determined. Second, there is a tendency to equate self-determination with only one aspect of its expression, making choices. There are numerous problems with elevating choice as the ultimate value, both in conceptualizing self-determination and structuring efforts to promote self-determination. Making choices is only one aspect of being self-determined, and to take it out of the broader context can be problematic. Ferleger (1994) noted circumstances of: deprivation or denial of services, or violation of rights, of people with mental retardation based on invocation of ÒchoiceÓas a guiding principle. For example, people are denied individual habilitation planning or even a case manager because they are said to have chosen to give up such assistance. People are denied a job or meaningful activity because they are said to choose otherwise. PeopleÕs homes and bedrooms, and daily life choices, are barren and devaluing, all based on what is said to be ÒchoiceÓ.(p. 70)
Ferleger noted that Òsomewriters, perhaps enamored of the philosophical connections between ÔchoiceÕand ÔfreedomÕor perhaps connecting liberation from institutions with some notion of freedom, seem to extol ÔchoiceÕ as a value supreme to othersÓ(p. 69). Referring to the role of choice in service provision, Ferleger stated Òelevation of choice above other elements of normalization inevitably shortchanges the people who we serveÓ(p. 90). C.
Self-Determination and Disability
Among the Þrst, if not the Þrst, use of the term within the disability literature occurred in a chapter by Nirje (1972) in WolfensbergerÕs (1972) now-classic text on the principle of normalization. Nirje (1972) titled his chapter ÒTheRight to Self-DeterminationÓand in the opening paragraph stated:
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One major facet of the normalization principle is to create conditions through which a handicapped person experiences the normal respect to which any human being is entitled. Thus the choices, wishes, desires, and aspirations of a handicapped person have to be taken into consideration as much as possible in actions affecting him. To assert oneself with oneÕs family, friends, neighbors, co-workers, other people, or vis-`a-vis an agency is difÞcult for many persons. It is especially difÞcult for someone who has a disability or is otherwise perceived as devalued. But in the end, even the impaired person has to manage as a distinct individual, and thus has his identity deÞned to himself and to others through the circumstances and conditions of his existence. Thus, the road to self-determination is both difÞcult and all important for a person who is impaired. (p. 177)
NirjeÕs use of the term suggests, at the least, familiarity with the usage of selfdetermination as a personality construct. His use of the term, while still pertaining to the rights of a particular group of people (people with mental retardation), is nonetheless a call for personal self-determination or self-governance. His is a call for a wide range of actions that enable people to control their lives and their destinies, including choice over personal activities, control over education, independence, participation in decisions; information upon which to make decisions and solve problems, and so forth. Nirje clearly articulated the importance of this personal self-determination for all people, not excluding people with mental retardation or other signiÞcant disabilities. Throughout the chapter Nirje equates self-determination with the respect and dignity to which all people are entitled. More so, Nirje recognized that people deÞne themselves, and others deÞne them, by the circumstances and conditions of their existence. This recognition that self-determination is fundamental to attaining respect and dignity and to perceiving oneself as worthy and valued is a major reason people with disabilities have been unequivocal and consistent in their demand for control in their lives. An analysis of NirjeÕs chapter to determine the types of actions, beliefs, and opportunities that describe self-determination reßects the same breadth and scope seen in the literature today. Nirje (1972) identiÞed making choices, asserting oneself, self-management, self-knowledge, decision making, self-advocacy, selfefÞcacy, self-regulation, autonomy, and independence (although often not using those terms) as the salient features of personal self-determination. NirjeÕs chapter appeared in the same book in which Perske (1972) called for the opportunity for people with mental retardation to experience the Òdignityof riskÓ: The world in which we live is not always safe, secure and predictable . . . . Every day that we wake up and live in the hours of that day, there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the way the real world is. We must work to develop every human resource within us in order to prepare for these days. To deny any person their fair share of risk experiences is to further cripple them for healthy living. (p. 199)
These two important calls to action emphasized the universality of the desire for control in oneÕs life and oneÕs destiny and over decisions and choices that impact oneÕs life and oneÕs quality of life and illustrate the important link in the
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use of the term Òself-determinationÓas it pertains to people with disabilities with empowerment. 1. SELF-DETERMINATION AS EMPOWERMENT Within the context of the disability rights and advocacy movement, the construct as a personal characteristic has been imbued with the empowerment and ÒrightsÓ orientation typically associated with the sense of the term as a national or political construct. Empowerment is a term usually associated with social movements and typically is used, as Rappaport (1981) stated, in reference to actions that Òenhance the possibilities for people to control their livesÓ(p. 15). Individuals with disabilities (Kennedy, 1996; Ward, 1996) have been unequivocal in their understanding of self-determination as a form of empowerment. In a speech at the National Conference on Self-Determination, an event organized in 1989 by the U.S. Department of EducationÕs OfÞce of Special Education Programs (Ward, 1996), Robert Williams (1989) effectively captured this link between self-determination and empowerment, stating: But, without being afforded the right and opportunity to make choices in our lives, we will never obtain full, Þrst class American citizenship. So we do not have to be told what self-determination means. We already know that it is just another word for freedom. We already know that selfdetermination is just another word for describing a life Þlled with rising expectations, dignity, responsibility, and opportunity. That it is just another word for having the chance to live the American Dream. (p. 16)
It is evident from WilliamsÕremarks, and from the comments of other people with disabilities, that for many people in the disability community the use of the term is as a call for the right to personal self-governance; more related, perhaps, to the meaning of the term as the right of a nation to self-governance than as a motivational or personality construct. Like NirjeÕs call from 20 years earlier, however, the use of the term as a ÒrightÓmixes both the meaning of the term as a national or political right and a personal characteristic. D.
Summary
Self-determination has a rich history as a personal construct. Its usage in relation to disability dates to the 1970s, when it was a central tenet in the emergence of the normalization principle and its application to services for people with mental retardation in the United States. With the subsequent success of the Independent Living movement during the 1970s and 1980s (Ward, 1996), the construct emerged as the theme for empowerment for people with disabilities in the 1990s. This hybrid understanding of the construct, as both a personal characteristic and a political ideal, led in turn to increased attention to (and funding for) efforts to promote self-determination within disability policy and practice, as discussed subsequently.
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Yet, while this prominence has brought focus to the importance of enabling and allowing individuals with mental retardation to take greater control over their lives, only a limited amount of that focus has been on research to better understand, conceptualize, and deÞne the construct. The following sections review the extant literature base and introduce theoretical frameworks upon which future research could be based.
III.
RESEARCH IN MENTAL RETARDATION
Like most complex, multidimensional constructs, the Þrst level of deÞning or understanding the construct is to develop a constitutive deÞnition, one which deÞnes the construct by, and in relationship to, other constructs. Theories of selfdetermination, such as those discussed subsequently, often rely on such constitutive deÞnitions to describe the relationship between similar constructs and to examine the contribution of one construct to another. Although operational deÞnitions are important for applied efforts to promote outcomes related to a particular construct, constitutive deÞnitions are equally important in theory development. There are a number of psychological constructs that are closely related to the self-determination construct, some of which may be antecedents or contributors to self-determination, others which may be consequent to or outcomes of increased self-determination, and still others that are strongly correlated but not necessarily antecedent or consequent to self-determination. For example, autonomy, selfregulation and human or causal agency are constructs that have been postulated to contribute to self-determination. Quality of life, resiliency, and social inclusion are examples of constructs to which self-determination has been hypothesized to contribute. Because the literature base that explores issues of self-determination as they apply speciÞcally, and not just peripherally, to people with mental retardation is limited, it is necessary to review the literature beyond just global self-determination and mental retardation and to include an overview of mental retardation and its relationship to some of the constructs constitutively related to self-determination. In so doing, however, one risks providing short shrift to any given topic, particularly since each such review could likely become a chapter in and of itself. The following sections examine the extant literature pertaining to self-determination and mental retardation and then provide a cursory examination of mental retardation and several closely related constructs, including self-regulation, choice and decision making, and problem solving. The intent of these brief explorations is not to provide an exhaustive treatment of that research, other than that which pertains speciÞcally to mental retardation and self-determination, but instead to highlight general Þndings in and knowledge about these areas and their potential to contribute to our broader understanding of self-determination and mental retardation.
12 A.
Michael L. Wehmeyer Research on Self-Determination and Mental Retardation
As introduced in a previous section, among the Þrst uses of the term selfdetermination within the disability literature occurred in a chapter by Nirje (1972) in WolfensbergerÕs (1972) text on the principle of normalization. It is signiÞcant to note that this call was in reference to the experience of people with mental retardation, primarily because there remains considerable confusion or misinformation that lead people to conclude that people with mental retardation cannot be Òself-determined.ÓFor example, Wehmeyer, Agran, and Hughes (2000) recently surveyed teachers working with students with mental retardation or learning disabilities to determine their beliefs about the importance of self-determination and to examine the degree to which they translate those beliefs into instructional opportunities. While virtually all teachers believed that teaching self-determination was important to their students, teachers working with students with mental retardation were much less likely to do so. When asked to identify why they might not teach students to become more self-determined, these respondents indicated that they believed that, due to cognitive limitation, their students could not beneÞt from such instruction. Thus, despite Nirjes plea to the contrary, the applicability of the construct self-determination in the lives of individuals with mental retardation is of recent vintage. There are, however, a few studies that describe the relative self-determination of individuals with mental retardation. 1. HOW SELF-DETERMINED ARE PEOPLE WITH MENTAL RETARDATION? While there are a growing number of book chapters, articles, and position papers that extol the virtues of promoting the self-determination of individuals with mental retardation (Bambara, Cole, & Koger, 1998; Brown, Gothelf, Guess, & Lehr, 1998; Wehmeyer, 1992, 1996, 1998), there are few data-based explorations of the relative self-determination of individuals with mental retardation. There are multiple factors that account for this circumstance, among them the previously mentioned assumption that people with mental retardation are not or cannot become self-determined and difÞculties in measurement, including both the lack of reliable, valid measures of this complex construct and issues pertaining to threats to reliability and validity inherent in assessment with individuals with mental retardation. Wehmeyer and Metzler (1995) examined the self-determination of over 4500 adults with mental retardation by analyzing data from a national survey of the independence, productivity, and integration of Americans with developmental disabilities. Findings from this study illustrate the degree to which most adults with cognitive disabilities lack opportunities to assume control in their lives and speak to the relative self-determination of this population. From this sample, only 33% of respondents indicated that they had a choice regarding where they currently
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lived; 12% had a voice in hiring the staff or attendant who worked with them; 21% chose, either with or without assistance, their roommate; 44% chose their job or day activity; 26% indicated they had the opportunity to pay their own bills; and 42% indicated they did any banking on their own. The overall picture provided by this study suggested that too many people with mental retardation lack opportunities to control their lives and their destinies. Wehmeyer and Metzler (1995) noted several trends from the data. First, they observed that the probability that people with mental retardation would be allowed to participate in decisions and make choices that affected their lives seemed to be related to the relative importance of such decisions and choices. That is, individuals were more likely to have control over minor choices and decisions, such as what clothes they wore or the leisure activity in which they were engaged, but were not likely to be involved in weightier decisions, such as choosing their roommates or providing consent for medical treatment. Second, they noted that the choices that individuals with mental retardation had the opportunity to make tended to be limited in scope and variety. Third, Wehmeyer and Metzler suggested that adults with mental retardation were, by and large, not assuming roles and engaging in activities that serve to deÞne an individual as an adult, like getting married, raising a family, working competitively, or living independently. Wehmeyer,Kelchner, and Richards (1995,1996) examined the self-determination of 408 adults with mental retardation to determine relative self-determination status using an expansion of the survey analyzed by Wehmeyer and Metzler (1995). They conÞrmed the Þndings from the previous study indicating that people with mental retardation experience limited self-determination and also identiÞed the environments in which persons lived as contributing to self-determination status. 2. FACTORS INFLUENCING AND IMPORTANCE OF SELF-DETERMINATION TO PEOPLE WITH MENTAL RETARDATION Wehmeyer and Bolding (1999) conducted a matched-samples study to more explicitly examine the role of environment on relative self-determination. Twohundred seventy-three individuals with mental retardation were recruited based on the degree to which they worked or lived in one of three environments hypothesized to limit or promote self-determination: (1) community-based (e.g., independent living or competitive employment), (2) community-based congregate (e.g., group home or sheltered employment), and (3) non-community-based congregate (e.g., institution or work activity program). Participants in each environmental group were matched with one other person in each other group based on IQ score (within 5 points), and, when possible, by age (within 8 years) and gender. This resulted in 91 matched triplets in which individuals differed only by environment in which they lived or worked. Analysis of variance by group for scores from measures of self-determination and autonomy yielded signiÞcant differences by setting on both
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measures. Post hoc analyses of autonomy scores indicated signiÞcant differences between people living or working in community-based settings and both people living or working in community-based congregate settings (group homes or sheltered workshops) and people living or working in non-community-based congregate settings (institution, nursing home, or day program), with community-based group scores signiÞcantly more adaptive than the other two groups. Groups also differed signiÞcantly on self-determination scores with post hoc analyses indicating significant differences between people living or working in community-based settings and people living or working in community-based congregate settings and in noncommunity-based congregate settings (institution, nursing home, or day program; p = .045). There were no signiÞcant differences between the congregate settings on either measure. Analysis of variance by settings on a measure of opportunity to make choices in residential settings indicated highly signiÞcant differences by group, with post hoc analysis showing signiÞcant differences between people who lived in communitybased settings and both people who lived in more restrictive settings and who lived in the most restrictive settings but no differences between people who lived in either congregate setting. Since many people with mental retardation live and work in congregate settings, this study suggests that the restricted self-determination may be a function of more than just limited capacity, but instead of the environments that people access. Tossebro (1995) came to a similar conclusion about the impact of the size of facilities, in terms of number of residents and staff density, on the relative self-determination of people with mental retardation. After moving from a work or living environment that was more restrictive to one which was community-based and less restrictive, research participants showed statistically signiÞcant gains in self-determination and autonomous functioning and reported they had more choice opportunities. A potential confound with both of these studies is that people who are more self-determined are more likely to end up in favorable circumstances. To examine this issue, Wehmeyer and Bolding (2000) measured the self-determination of 31 individuals with mental retardation who were transitioning from a more restrictive to less restrictive setting (e.g., group home to supported living and sheltered workshop to competitive employment). Data were collected 6 months prior to and 6 months after the move. Paired-sample t tests examining pre and postmove differences on self-determination and autonomy for all participants indicated signiÞcant differences on both measures and, in both cases, mean scores were more adaptive after the person transitioned to the new living or work environment. There were similar Þndings on a measure of choice in residential settings for individuals who made a living-related move. Wehmeyer and Schwartz (1998) measured the self-determination of 50 adults with mental retardation residing in group homes and also collected data on individual quality of life. Higher self-determination scores were predictive of more
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positive quality of life scores. Similarly, Wehmeyer and Schwartz (1997) measured the self-determination of adolescents with mental retardation (in addition to adolescents with learning disabilities) and found that 1 year after graduation from high school, students who were more self-determined had achieved more favorable adult outcomes, particularly in securing paid employment. Additionally, Sands, Spencer, Gliner, and Swaim (1999) found that student self-determination was one predictor of active student involvement in educational planning and decision making. In summary, the existing research base related to self-determination and mental retardation suggests that greater self-determination contributes to more active involvement in educational planning and decision-making for youth with mental retardation, is predictive of more positive adult outcomes when these young people exit school, and results in a higher quality of life for adults with mental retardation. Yet despite these beneÞts, it appears that most adults with mental retardation are not self-determined and have limited opportunities to assume greater control over their lives and that while teachers value self-determination, most students with mental retardation are not receiving targeted instruction to enhance this outcome. B.
Research on Self-Regulation in Mental Retardation
Self-regulation is, like self-determination, a multidimensional construct. Ridley, Schutz, Glanz, and Weinstein (1992) identiÞed three Òprimarydimensions of selfregulation: (a) developing metacognitive awareness about self, environment, and situation; (b) establishing, clarifying and using goals based on that awareness; and (c) implementing and monitoring actions for the purpose of achieving these goalsÓ (p. 294). Whitman (1990) deÞned self-regulation as Òacomplex response system that enables individuals to examine their environments and their repertoires of responses for coping with those environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessaryÓ(p. 373). Schunk (1994) identiÞed self-regulation, within the speciÞc context of self-regulated learning, as Òtheprocess whereby students activate and sustain cognitions, behaviors, and affects that are systematically oriented toward the attainment of goalsÓ(p. 75). Mithaug (1993) noted that all organisms self-regulate and that while intelligence may not be necessary for self-regulation, as evidenced by the self-regulation of single-cell organisms, self-regulation is, conversely, necessary for intelligence. ÒThemore complex the organismÕs central nervous system,ÓMithaug noted, Òthemore adaptive is its self-regulatory capacityÓ (p. 43). Given the relationship between self-regulation and adaptive behavior, it is not surprising that deÞcits in self-regulation have been identiÞed as a function of level of intellectual functioning. Whitman (1990) proposed that mental retardation was, fundamentally, a self-regulatory disorder and should be reconceptualized as such
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and not as a disorder of intelligence. Whitman argued that Òself-regulation is a complex skill, but nevertheless a skill, that develops like less complex behaviorÓand that Òself-regulation is basically a linguistically guided process and that children with retardation because of their linguistic deÞciencies are delayed in developing this skillÓ(p. 349). That Whitman would forward the suggestion that mental retardation is a selfregulatory disorder speaks to the presumption that people with mental retardation do not self-regulate their behavior, a presumption that has been adequately conÞrmed in research (Litrownik, Cleary, Lecklitner, & Franzini 1978; Meichenbaum, 1990; Whitman, 1990). There is a voluminous literature that examines the degree to which people with mental retardation can learn and apply some of the fundamental self-management strategies that enable one to self-regulate behavior, including self-monitoring (Ackerman & Shapiro,1984; Litrownik, Freitas, & Franzini, 1978; Lovett & Haring, 1989; Misra, 1992; Schloss & Wood, 1990; Sowers, Verdi, Bourbeau, & Sheehan, 1985) and self-evaluation (Agran, 1987; Horner & Brigham, 1979; McCarl, Svobodny, & Beare, 1991). This research body provides abundant evidence that individuals with mental retardation can learn and apply self-management strategies that enable them to more effectively selfregulate their behavior. Such self-regulation is critical to promoting autonomy, self-sufÞciency and self-determination. C.
Research on Problem Solving and Decision Making in Mental Retardation
Previous reviews of problem solving in the International Review of Research in Mental Retardation (Ferretti & Cavalier, 1991; Short & Evans, 1990) provide extensive overviews of issues in cognitive and social problem solving and mental retardation, and readers are referred to these comprehensive reviews for detailed information. Brießy, however, the research examining problem solving and mental retardation has suggested that people with mental retardation are often not strategic in their approach to a problem and exhibit a largely inßexible pattern of problem-solving skills (Ellis, Woodley-Zanthos, Dulaney, & Palmer, 1989; Ferretti & ButterÞeld, 1989; Ferretti & Cavelier, 1991; Short & Evans, 1990). This pattern, labeled cognitive rigidity by Gestalt psychologists, Òischaracterized by repetition of past strategies to solve current problems without adapting to new stimuli or new task demandsÓ(Short & Evans, 1990, p. 95). Ferretti and Cavalier (1991), in reviewing literature pertaining to the constraints on problem solving for people with mental retardation, concluded with the following: 1. People with mental retardation are sometimes strategic. They produce strategies when the task is not too difÞcult, when they understand the task requirements, and when they have the knowledge needed to design strategies. Each of these, in turn, is impacted by functional working memory capacity.
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2. People with mental retardation sometimes transfer strategies. While people with mental retardation often do not use strategies outside of a particular situation in which they were learned, teaching them self-management strategies can produce some successful strategy transfer across situations, given that individuals have extended practice with multiple exemplars. In their review of studies examining cognitive problem solving of people with mental retardation, Short and Evans (1990) identiÞed three primary differences between problem-solving strategies of people with and without mental retardation: (1) the ability to represent the problem, (2) the ßexible use of strategies, and (3) the utilization of background knowledge on well-deÞned tasks. Inßexibility is also evident in social problem-solving situations. Wehmeyer and Kelchner (1994) examined the social problem-solving skills of adults with mental retardation and found that this group generated fewer potential solutions to social problems and that a greater proportion of solutions generated were irrelevant. Historically, however, research on problem-solving capacity and mental retardation was yoked to the examination of problem-solving as a dependent variable to measure variances in cognitive, linguistic, or other domains in children with and without disabilities instead of being in and of itself the focal point of research. For example, Gruen and Korte (1973) used problem-solving tasks to test hypotheses related to theories about cognitive development for children with mental retardation. Early exceptions to this trend appear when problem solving is the means to an end, such as verbal problem solving to improve math achievement for students with mental retardation (Cruickshank, 1948; Finley, 1962; Schenck, 1973). More recently, there have been studies reversing these trends and examining the degree to which individuals with mental retardation can acquire effective problem-solving strategies as an end unto itself. Castles and Glass (1986) found that training improved social problem-solving skills of youth with mild and moderate mental retardation. Browning and Nave (1993) used an interactive, video-based curriculum to teach social problem-solving skills to youth with mild mental retardation and learning disabilities. Alper (1985) found that teacher questioning strategies could increase the problem-solving capacity of students with mental retardation. Additionally, research conÞrms that problem-solving is an important skill to acquire. Healey and Masterpasqua (1992) examined the social problem-solving of elementary school students with mental retardation as a function of their adjustment to regular education classrooms. These researchers hypothesized that strong social problem-solving skills would be related to more positive peer relations and behavioral adjustment in the classroom. They found that this was indeed the case and that classroom adjustment could be predicted by interpersonal cognitive problemsolving skills. Park and Gaylord-Ross (1989) compared social skills training without problem-solving training to a general social program that incorporated problem-solving training for youth with developmental disabilities. They found
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that the social problem-solving training procedure increased generalization and maintenance of the targeted social behaviors. Wehmeyer, Mithaug, and others (Gilbert, Agran, Hughes, & Wehmeyer, in press; Mithaug, Wehmeyer, Agran, Martin, & Palmer, 1998; Wehmeyer, Palmer, Mithaug, Agran, & Martin, 2000) have developed a model of teaching to enable educators to promote self-regulated problem-solving skills of youth with disabilities, including students with mental retardation. Through this model of teaching, educators enable students to pose a series of 12 questions which, in groups of four, enable students to solve a problem and set a goal, develop an action plan, and implement and evaluate this plan to achieve self-selected goals. Wehmeyer et al. (2000) showed that students with mild mental retardation who received instruction with the model achieved educationally important transition goals and also showed enhanced self-determination and goal-directed behavior. Gilbert and colleagues (in press) showed that students with more severe mental retardation also beneÞted from instruction with the model, improving behaviors related to participation in the general education class signiÞcantly over baseline. There have been relatively few efforts to examine the decision-making capacity of people with mental retardation, but over the past Þve years Hickson and Khemka have conducted a series of studies to provide more information about decision making and people with mental retardation and to provide a model for enhancing decision-making skills (Hickson & Khemka, 1999). Khemka (1997) compared two decision-making training approaches and their impact on decision-making related to three types of abusive situations (physical, sexual, or verbal abuse). One was a standard decision-making approach providing instruction in the use of a speciÞc decision-making strategy incorporating alternative solution generation and consequential thinking. The second was a self-directed decision-making approach. She found that participants in the self-directed decision-making group provided signiÞcantly more independent decision-making responses, showed enhanced perceptions of control, and reduced decisional avoidance responding when compared with peers who received training using the standard instructional approach. Summarizing, it is evident that individuals with mental retardation have deÞcits in areas of problem solving and decision making. However, there have been an increased research interest in determining the degree to which people with mental retardation can increase their problem-solving and decision-making skills, and this research indicates that given adequate opportunities to do so, individuals are successful and also beneÞt from the experience. D.
Research on Choice Making
Perhaps the one element of self-determined behavior that hasnÕt been overlooked as it pertains to individuals with mental retardation is that of choice making. There have been training programs developed to teach choice-making and
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increase choice-making behaviors (Gothelf, Crimmins, Mercer, & Finocchiaro, 1994; Parsons, McCarn, & Reid, 1993; Reid, Parsons, & Green, 1991; Warren, 1993), efforts to increase the diversity of choices for people with disabilities (Brown, Belz, Corsi, & Wenig, 1993), discussions about the importance to people with disabilities of making choices (Ficker-Terrill & Rowitz, 1991; Guess, Benson, & Siegel-Causey, 1985; Shevin & Klein, 1984; West & Parent, 1992), procedures developed to assess individual preferences and choices (Mithaug & Hanawalt, 1978; Stancliffe, 1995), and research efforts to determine the degree to which people with disabilities express choices and preferences (Houghton, Bronicki, & Guess, 1987; Kishi, Teelucksingh, Zollers, Park-Lee, & Meyer, 1988; Stancliffe & Wehmeyer 1995; Wehmeyer et al., 1995; Wehmeyer & Metzler, 1995). There is also a signiÞcant research body examining basic aspects of choice making. Fisher and Mazur (1997) provide a comprehensive examination of basic and applied studies from the applied behavior analysis perspective, with ÒbasicÓstudies being those Òinwhich the primary goal is to elucidate the variables that determine how individuals allocate their responding or time across available optionsÓ(p. 388). Once again, space limitations prohibit a detailed discussion of this literature and readers are referred to Fisher and Mazur (1997) for such a discussion. Making a choice consists of two primary actions: (1) identifying a preference among two or more options and (2) communicating that preference. Wehmeyer, Sands, Doll, and Palmer (1997) noted that these elements appear very early in child development and that by 6 to 8 months of age, children can communicate preferences through basic communicative efforts and by the onset of language development; typically between 14 and 18 months of age, children have all the fundamental prerequisites to make choices. Wehmeyer (1998), discussing issues of self-determination for individuals with signiÞcant cognitive disabilities, noted that all persons express preferences and that while people with severe disabilities may need support and intervention to enable them to communicate those preferences more effectively, or the people in their lives may need to employ more sophisticated means of assessing and determining those preferences, they can, nonetheless, make choices that inßuence their lives. Choice making is also important in that it is one step in the decision making process. Thus, although some individuals with signiÞcant cognitive disabilities may not be able to make independent decisions, all people can participate in the decision-making process by making choices and can likely beneÞt from instruction in making decisions. 1. OPPORTUNITIES TO MAKE CHOICES AVAILABLE TO PEOPLE WITH MENTAL RETARDATION The scientiÞc literature base addressing choice making and mental retardation has emphasized several aspects. First, studies have examined the degree to which people with mental retardation had the opportunity to make choices and express preferences. Stancliffe and Wehmeyer (1995) reviewed the literature related to
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choice making by people with mental retardation and developmental disabilities and concluded that individuals had few opportunities to make meaningful choices. Similarly, Wehmeyer, Kelchner, and Richards (1995) found that in a sample of more than 400 members of self-advocacy groups a large percentage made few choices in their lives. For example, 30% of the group indicated they did not choose where they lived and only 15% indicated they had selected where they live unassisted. Comparatively, Kozleski and Sands (1992) used the same survey with adults without disabilities and found that only 10% indicated they had no choice in where they lived and 13% had no choice in their roommates. Kishi, Teelucksingh, Zollers, Park-Lee, and Meyer (1988) compared the everyday choice and choice-making opportunities of individuals with mental retardation living in group homes with adults without mental retardation. They found that the adults with mental retardation had signiÞcantly fewer opportunities to make choices across a wide array of circumstances, from what to wear or eat to how to spend free time. Stancliffe and Abery (1997) conducted an examination of opportunities available to people with mental retardation to make choices as a function of where they lived by comparing choices made by individuals who had moved from an institution to the community with choices by people who had stayed in the institution instead of moving. People who moved had signiÞcantly more choice opportunities after the move even though the groups did not differ at baseline, and these differences were not a function of level of intellectual impairment. Stancliffe and Abery noted, however, that the absolute level of choice-making opportunities available to all persons in the study was very low. Stancliffe (1997) found that the size of a personÕs residence signiÞcantly inßuenced the opportunities that person has to make choices, with adults with mental retardation who lived in small settings, that is community-based settings in which there were fewer staff and fewer other residents, had signiÞcantly more opportunities to make choices. These studies provide a sampling of the growing literature base that indicates that people with mental retardation have limited opportunities to make choices and express preferences. This is in spite of multiple beneÞts to doing so discussed subsequently. 2. ASSESSING PREFERENCES AND PROMOTING CHOICE-MAKING SKILLS Perhaps the most important action to be taken to enable people with mental retardation to express preferences and make choices is to simply provide such opportunities. Thus, Brown, Belz, Corsi, and Wenig (1993) provided suggestions to teachers regarding how to infuse choice-making opportunities into instructional activities throughout the school day. There are, however, some individuals who need more targeted instruction on how to appropriately communicate their preferences, and a number of studies have provided evidence that this can be readily accomplished. Similarly, the technology around assessing preferences of people
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with signiÞcant disabilities has become more sophisticated. Lohrmann-OÕRourke and Browder (1998) and Hughes, Pitkin, and Lorden (1998) provided recent reviews of assessment activities. Strategies identiÞed in these reviews included assessing responses using microswitches, observing approach-behavior, recording verbalizations and gestures associated with the presentation of options, measuring time-on-task or engagement time, and so forth. Such assessment activities have been applied to a wide array of settings, from examining vocationally related task preferences of adults with mental retardation (Mithaug & Hanawalt, 1978; Parsons, Reid, & Green, 1998) and leisure preferences (Nietupski et al., 1986; Nozaki & Mochizuki, 1995) to promoting community-based instruction (Cooper & Browder, 1998). There are numerous studies describing procedures to teach choice making to individuals with mental retardation and signiÞcant disabilities. Bambara and Ager (1992) used cards that contained pictures or words that described leisure activities to help three adults with moderate disabilities choose leisure activities in which they wished to engage Participants learned to use the cards to choose and schedule weekly leisure activities. Several studies have investigated teaching people with signiÞcant disabilities to exercise choice at mealtimes. Parsons and colleagues (Parsons & Reid, 1990; Parsons et al., 1993) provided adults with mental retardation opportunities to choose between one of two food or drink items throughout a meal. Participants were prompted to choose an item if they did not do so independently. Upon choosing a particular item, the item was immediately provided to the participant. Findings of both studies revealed that providing access to a choice immediately following a choice response resulted in increases in choice-making by all participants. Gothelf, Crimmins, Mercer, and Finocchiaro (1994) used a similar method to teach mealtime choice making to students who were deaf, blind, and had multiple disabilities. Tactile cues and physical guidance were provided to accommodate for the studentsÕsensory impairments and, upon choosing a sample of an item, students were provided with a full portion of the chosen food. Studies that have investigated the development of choice-making skills stress the importance of systematically providing contingent consequences to emerging choice responses (Dattilo & Mirenda, 1987; Sigafoos & Dempsey, 1992). Sigafoos and Dempsey argued that behaviors such as approaching or reaching for a preferred item could be shaped as choice-making responses by systematically providing access to the chosen item after the response has been made. For example, to teach students to make choices by manipulating electronic microswitches, Dattilo and Mirenda used computers to provide immediate access to a chosen item following a studentÕs activation of a microswitch. Similarly, Kennedy and Haring (1993) taught four students with multiple disabilities to use a microswitch communication system to request changes in leisure activities in which they were engaged with a partner. Prompting and reinforcement procedures were used to teach students to press a microswitch that activated a tape-recorded message that requested a
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change in activities (e.g., ÒCanwe do something else?Ó).Choice-making training resulted in increases in diversity of activities chosen, time engaged in activities, and interactions with social partners. 3. CHOICE MAKING AND PROBLEM BEHAVIORS A third body of literature around choice making and mental retardation involves research examining the link between expressing preferences and making choices and problem behaviors. Dunlap and colleagues (1994) summarized the research around choice making as a management strategy. They concluded that making choices can lead to enhanced and more adaptive forms of responding, including improved social behavior and task performance, and can help reduce problem behaviors. Munk and Repp (1994) identiÞed allowing students to choose tasks as an instructional variable that served as a nonaversive intervention for problem behaviors, and making choices is a key component of positive behavioral support (Carr et al., 1999). As one example of the utility of choice making as an instructional tool, Umbreit and Blair (1996) showed that providing a student with mental retardation who engaged in several problematic behaviors with the opportunity to engage in preferred activities and make choices resulted in the virtual elimination of all problem behaviors. E.
Summary
This overview of self-determination and mental retardation and cursory examination of constructs conceptually related to self-determination indicates that the predominant experience of most people with mental retardation is that they have limited control over or do not self-regulate their lives, too infrequently participate in decisions that impact their lives, have limited opportunities to express preferences and make choices, and do not engage in problem-solving actions. This circumstance is a function of behavioral and cognitive limitations associated with the condition of mental retardation, limited opportunities and experiences that promote self-determination, and low or limited expectations for positive outcomes in the lives of people with mental retardation. The research also suggests that just as self-determination, self-regulation, problem-solving and decision-making capacity, and choice-making opportunities are important to people without mental retardation, so too are these beneÞcial to individuals with cognitive and developmental disabilities. Because the emergence of self-determination as a construct applied to people with mental retardation is a recent event, the previous Þndings are not particularly surprising, nor should it be surprising that theory development in this area is in its early stages. Because of the complexity of the construct and its potential importance in the lives of individuals with mental retardation, it is important to lay a solid foundation in theory development so that more applied efforts can
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proceed based on a knowledge of the construct, its development and emergence, and what individual and environmental variables inßuence this emergence. The Þnal section of this chapter addresses four theoretical models that may provide such a foundation.
IV.
MODELS OF SELF-DETERMINATION AND MENTAL RETARDATION
This section examines four theoretical frameworks within which the construct of self-determination has been deÞned and applied to the lives of people with mental retardation. These four models, AberyÕs ecosystems model, MithaugÕs selfregulation model, PowersÕmotivation model, and WehmeyerÕs functional model, do not constitute the only models of self-determination, even within the disability Þeld. There are several frameworks within which the term Òself-determinationÓ has been deÞned and operationalized (Abery, 1993; Brown & Gothelf, 1996; Field,1996; Field & Hoffman,1994; Mithaug, 1996; Powers et al., 1996; Wehmeyer, 1996; Wehmeyer, Kelchner, & Richards, 1996). There are a larger number of programmatic efforts to promote self-determination that, implicitly, deÞne the construct by the types of activities and interventions introduced and implemented (Agran, 1997; Carter-Ludi & Martin, 1995; Martin & Marshall, 1996; Serna & LauSmith, 1995; Van Reusen, Bos, Schumaker, & Deshler, 1994). The work of Field and colleagues (Field, 1996; Field & Hoffman, 1994) has, for example, provided a model of self-determination as the basis for instructional and curricular approaches. These four models were selected, however, based on their potential utility in fostering the understanding of self-determination as it pertains to individuals with mental retardation, including people with the most severe cognitive impairments. Other models may, by assumptions inherent in the model, exclude people with mental retardation as being able to become self-determined or, more frequently, have just not addressed the application of their model to people with mental retardation. Each of these four have, at least to some extent, applied model development activities to people with mental retardation. In addition, they have both deÞned the construct and have hypothesized about its categorization and Þt within other theoretical frameworks. A.
An Ecosystems Model of Self-Determination
Motivation researchers, primarily Deci and colleagues (Deci & Ryan, 1985), conceptualized self-determination as an internal need contributing to an individualÕs performance of intrinsically motivated behaviors. Self-determination is, in their conceptualization, Òtheinnate, natural propensity to engage in oneÕs interests and exercise oneÕs capacities, and in so doing, to seek and conquer optimal
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challengesÓ(Deci & Ryan, p. 43). Abery (1994) conceptualized self-determination as Òanintrinsic drive to be the primary determiner of oneÕs thoughts, feelings, and behaviorsÓ(p. 2) and thus shares DeciÕs focus on the innate nature of selfdetermination. SpeciÞcally, Abery views self-determination as a process, Òdriven by the intrinsic motivation of each of us to be the primary determiner of our thoughts, feelings, and behavior (Abery & Stancliffe, 1996). Consistent with the conceptualization of self-determination as essentially an innate or intrinsic drive, AberyÕs work has focused primarily on the role of environment, stating that Òbyfocusing primarily on the individual, many models have not adequately acknowledged the important role of environmental factors in the self-determination processÓ(p. 113). Abery (1993) proposes an ecological framework for conceptualizing and understanding self-determination in which Òself-determinationcan be conceptualized as a product of an ongoing interaction between individuals and the multiple environments within which they functionÓ(Abery & Stancliffe, 1996, p. 114). He notes that this perspective does not mitigate or abrogate the importance of personal characteristics, but views self-determination within an environmental context; an ecosystem. Figure 1 illustrates AberyÕs model of self-determination. This analysis begins with personal characteristics important to self-determination, composed of selfdetermination related skills, knowledge, and motivation bases, and expands to examine the inßuences on self-determination at four ecological levels, the microsystem, the mesosystem, the exosystem, and the macrosystem. Abery identiÞes several individual factors or characteristics that impact self-determination and which comprise the self-determination skills base of his model. The majority of these, Abery states, ÒentailspeciÞc social skills that enhance an individualÕs ability to exert personal controlÓ(p. 353) and include personal choice and decisionmaking skills, self-management and regulation skills, personal advocacy skills, and problem-solving skills. Additional personal factors identiÞed include the individualÕs knowledge base, social and communication skills, sense of self-efÞcacy, and attributions for success and failure.The second level of individual factors involve those in the self-determination knowledge base. This, according to Abery, involves a working knowledge of the environment in which functioning will occur as well as knowledge about oneÕs own competencies and skills. These include declarative knowledge, deÞned as the factual knowledge one possesses about oneÕs environment, and procedural knowledge about how to engage oneÕs environment. The third knowledge type within this base is self-knowledge, deÞned as oneÕs awareness of and ability to accurately assess his or her competencies and skills. The third individual factorÕs base is the self-determination motivational base, which include the constructs of self-efÞcacy, locus of control, and attributions for success and failure.
FIG. 1. Abery s process model of self-determination. (From Institute on Community Integration, University of Minnesota. Reprinted with permission)
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AberyÕs ecosystem model of self-determination proposes that the development of self-determination occurs as a result of interactions between these individual factors and the environments within which that person functions. That environment is described in an ecosystem perspective as representing the microsystem, mesosystem, exosystem, and macrosystem levels. Brießy, the microsystem level refers to analysis of the impact of the immediate settings in which persons typically function, including home and family, community, schools, and peer groups, on self-determination. Such interactions do not occur in isolation, so the mesosytem inßuences refer to the interactions between and among entities within the microsystem analysis. To what degree do skills and behaviors learned in one environment generalize to others? How does the interaction between home and school impact both of these environments and, consequently, student self-determination? At the exosystem level of analysis one takes into account the impact of settings in which people do not directly participate, but which nonetheless inßuence selfdetermination. Abery (1993) noted that the training a teacher receives in college or in other settings will inßuence how that teacher runs his or her classroom, which in turn will impact studentsÕopportunities for choice making, decision making, and so forth. At the Þnal level of analysis, the macrosystem, one examines the beliefs, attitudes, and values held by a culture and its members and considers the impact of these on self-determination. AberyÕs ecological model was the basis for the development of assessment and curricular materials to promote self-determination which have been evaluated with students with mental retardation. Abery, Rudrud, Arndt, Schauben, and Eggebenn (1995) developed a multicomponent competency-building curriculum for use with students and a companion program for families. The classroom competencybuilding modules were (a) self-awareness, (b) self-esteem, (c) enhancing perceptions of personal control, (d) values, (e) goal setting, (f ) assertive communication, (g) choice making, (h) realizing your vision, (i) problem solving, and ( j) personal advocacy. Assessment instruments included the Self-Determination Observation Skills Evaluation Scale (SDSES: Abery & Eggebeen, 1992a), a behavior rating scale designed to assess the degree to which raters have observed various skills and behaviors related to self-determination over a 3-month period, and the Opportunity and Exercise of Self-Determination Scale (OESDS; Abery & Eggebeen, 1992b), a self-report indicator of opportunities to exercise personal control. A Þeld test of the curriculum with adolescents with mental retardation, using the assessments, found that students beneÞted from instruction, making improvements in areas of choice making, problem solving, self-regulation, and assertiveness/self-advocacy. B.
Self-Determination as Mastery Motivation and Efficacy Expectations
Powers et al. (1996a, 1996b) conceptualized self-determination as a function of mastery motivation (characterized by perceived competence, self-esteem,
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maintenance of an internal locus of control, and internalization of goals and rewards) and self-efÞcacy expectations. Self-determination is deÞned as referring to Òpersonalattitudes and abilities that facilitate an individualÕs identiÞcation and pursuit of goalsÓ(p. 292). The promotion of self-determination, within this model, results from experiences and efforts that reduce learned helplessness and promote mastery motivation and self-efÞcacy expectations. Quite speciÞcally, in this model self-determination is viewed as antithetical to learned helplessness and an outcome of promoting mastery motivation and self-efÞcacy expectations (Powers et al., 1996b). Powers et al. (1996b) deÞned learned helplessness (Seligman, 1975) as an Òacquiredbehavioral disposition characterized by passivity, self-denigration and internalization of devalued social status, perpetuated through permanent, pervasive, internalized negative self-attributionsÓ(pp. 259Ð260). Learned helplessness is reinforced by Òenvironmental factors that encourage passivity by (1) providing little opportunity for an individual to actively make choices and generate successful responses, (2) communicating expectations of non-involvement or failure, or (3) reinforcing failure or not reinforcing strivingÓ(p. 260). Powers and colleagues identify factors that promote learned helplessness as including overprotection and economic, academic, or social deprivation. Comparatively, self-determination might be construed as an acquired behavioral disposition characterized by self-directed, goal-oriented behavior. This disposition is the outcome of mastery motivation and self-efÞcacy appraisals and expectations. The former draws from research by Harter (1981), examining how youth acquire a generalized positive disposition toward achievement and striving. Mastery motivation is Òcharacterizedby perceived competence, self-esteem, maintenance of an internal locus of control, and internalization of goals and rewardsÓ(Powers et al., 1996b; p. 294). Self-efÞcacy expectations derive from BanduraÕs (1977, 1986) theory of self-efÞcacy which, according to these researchers, Òprovides a detailed framework for understanding speciÞc inßuences on the development of self-determinationÓ(Powers et al., 1996b, p. 294). Brießy, self-efÞcacy theory postulates two components, outcome expectations (belief about whether a particular behavior will lead to a particular consequence) and personal efÞcacy expectations (a personÕs expectations regarding his or her capability to realize a desired behavior within a speciÞc context). Self-efÞcacy appraisals are impacted by four speciÞc sources: (1) enactive attainment, derived from repeated performance accomplishments; (2) vicarious experiences, observing otherÕs success and effective management of challenges; (3) social persuasion, including encouragement, evaluative feedback, reinforcement, or challenge; and (4) physiological feedback. While PowersÕtheory that self-determination is an acquired behavioral disposition that is the outcome of mastery motivation and self-efÞcacy expectations is a testable model, to this date most research on the model has taken place as part of an overall intervention effort. Powers and colleagues have developed and Þeldtested a programmatic effort drawing from the conceptual foundations of mastery motivation and self-efÞcacy theory, called the ÒTAKE CHARGEÓmodel, which
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is designed to promote adolescent development of self-determination through four primary components: skill facilitation, mentorship, peer support, and parental support. This programmatic effort has been shown to be effective with a wide array of students at risk for learned helplessness, including students with mental retardation (Powers et al., 1996b). Sowers and Powers (1995) applied this approach to increase the participation and independence of students with severe disabilities in performing community activities. C.
Self-Determination as Self-Regulated Problem Solving
Mithaug suggested that Òself-determinationis a special form of self-regulationÑ one that is unusually effective and markedly free of external inßuenceÓ(Mithaug, Wolman, & Campeau, 1992) in which people who are self-determined regulate their choices and actions more successfully than others. Through a series of chapters and articles (e.g., Mithaug 1991, 1993, 1996a, 1996b, 1998), Mithaug has described a model of self-determination as self-regulated problem solving; that is, self-determination as a special form of self-regulation. Mithaug (1993) suggested that individuals are often in ßux between actual or existing states and goal or desired states. When a discrepancy exists between what one has and what one wants, an incentive for self-regulation and subsequent action may be operative. With the realization that a problem or discrepancy exists, the individual may set out to achieve the goal or desired state. Because of a history of failure or a sense of powerlessness or learned helplessness, however, individuals with disabilities may do little to change their situations. They may set expectations that are too low or, in some cases, too high. As Mithaug noted, negative feelings produce low expectations. Inaccurate self-assessments may produce unrealistic or unfeasible expectations. To promote success, individuals need to enhance or increase their expectations. The ability to set appropriate expectations is based on the individualÕs success in matching his or her capacity with present opportunity. Capacity is the individualÕs assessment of existing resources (e.g., skills, interests, and motivation), and opportunity refers to the aspects of the existing situation that will allow the individual to achieve the desired gain. Mithaug referred to optimal prospects as ÒJust-rightÓmatches in which individuals are able to correctly match their capacity (i.e., skills and interests) with existing opportunities (e.g., potential jobs). The experience generated during self-regulation Òisa function of repeated interaction between capacity and opportunity over timeÓ(Mithaug, 1996, p. 159). As Mithaug noted, Òthemore competent we are, the fewer errors we make, and the less time we take, the greater the gain we produceÓ(p. 156). Mithaug (1993) summarized self-regulation theory as stating that Òwemaximize progress toward goals when (1) past gains match expectations, (2) present expectations are the maximum possible, (3) choices are the best possible, and (4) followthrough on choice is as effective and efÞcient as possible. Such circumstances
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optimize adjustment to maximize gain for the individual. Self-determination is a Òvariant of self-regulated behaviorÓ(Mithaug, 1993, p. 61) that Òinvolves selfregulated problem solving to get what you need and want in lifeÓ (Mithaug, Wehmeyer, Agran, Martin, & Palmer, 1998). Mithaug further describes selfdetermination as: solving a sequence of problems in order to construct a means-ends chainÑa causal sequenceÑ that moves us from where we areÑan actual state of not having our needs and interests satisÞedÑ to where we want to beÑa goal state of having those needs and interests satisÞed. It [e.g., selfdetermination] is problem solving to reduce or eliminate this discrepancy between what we want and what we have. (italics added) (p. 303)
According to this analysis, Òself-determinationis more than solving one problem in order to get what one needs and wants in life. It is solving many problems that are connected in a meansÐendchain or chains. Consequently, it requires the regulation of many problem solving activities to connect needs and wants with actions and resultsÓ(pp. 303Ð304). MithaugÕs work has theoretically addressed the distinction between personal self-determination and corporate or political self-determination by postulating that the latter (self-determination as a right or a political ideal) refers to the conceptÕs social component, while the former (personal or individual self-determination) refers to the conceptÕs psychological component (Mithaug, 1998). Thus, instead of addressing these as two differing meanings of the construct, Mithaug proposes two components of the same concept. In 1996, Mithaug proposed Equal Opportunity Theory to address the discrepancy between the right to and experience of selfdetermination, the social and psychological components of the concept, suggesting that such discrepancies are common experiences for people with disabilities and other disenfranchised people. MithaugÕs Equal Opportunity Theory Òlocatesthe cause of this discrepancy in lack of capacity and opportunity among individuals whose personal, social and economic circumstances are beyond their controlÓ (1996b, p. 160). Further, Mithaug states that Òtheoptimal prospects solution [e.g., optimizing prospects for self-determination among the less fortunate by improving their capacity for autonomous thought and action and by improving opportunities for them to make choices and take action] seeks to embody equal opportunity theory by justifying social redress on behalf of people who are least well situated in societyÓby claiming the following: 1. All persons have the right to self-determination. 2. Psychological and social conditions of freedom cause some individuals and groups to experience unfair advantages in determining their future. 3. Declines in prospects for self-determination among the less fortunate are due to social forces beyond their control. 4. As a consequence of these declines, there is a collective obligation to improve prospects for self-determination among least well-situated groups.
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Mithaug (1998) also noted that Òself-determinationalways occurs in a social contextÓ(p. 42). Mithaug suggested that the social nature of the concept is worth reviewing because Òthedistinction between self-determination and other determination is nearly always in play when assessing an individualÕs prospects for controlling their life in a particular situationÓ(p. 42). Mithaug explored this further, stating: The focus on the social nature of the concept directs our attention to the interaction between a personÕs capacity to choose and act and the social environment that mediates opportunities for those choices and actions. It alerts us to the variation in capacityÐopportunityinteractions that enhance or inhibit the empowerment experience. (p. 42)
As discussed in the previous section on problem solving, Mithaug and colleagues (Mithaug et al., 1998; Wehmeyer et al., 2000) have applied aspects of this theoretical framework to develop an instructional model that enables teachers to increase student self-determination by preparing students to become selfregulated problem solvers. This application of both MithaugÕs self-regulation theory and my functional model (below) has been used successfully with students with mild (Wehmeyer et al., 2000) and severe (Gilbert et al., in press) mental retardation. D.
A Functional Model of Self-Determination
Emphasizing the fact that self-determination cannot adequately be deÞned by a response class and, as such, must be operationalized as a construct pertaining to the function of a personÕs behaviors (see previous discussion regarding deÞning the construct), Wehmeyer (1996, 1998) deÞned self-determination as Òacting as the primary causal agent in oneÕs life and making choices and decisions regarding oneÕs quality of life free from undue external inßuence or interferenceÓ (Wehmeyer, 1996, p. 24). Self-determined behavior refers to actions that are identiÞed by four essential characteristics: (1) the person acted autonomously, (2) the behavior(s) are self-regulated, (3) the person initiated and responded to the event(s) in a psychologically empowered manner, and (4) the person acted in a self-realizing manner. These four essential characteristics describe the function of the behavior that makes it self-determined or not. People who consistently engage in Òself-determinedbehaviorsÓcan be described as self-determined, where Òself-determinedÓrefers to a dispositional characteristic. Dispositional characteristics involve the organization of cognitive, psychological, and physiological elements in such a manner that an individualÕs behavior in different situations will be similar (though not identical). Eder (1990) described dispositional states as frequent, enduring tendencies that are used to characterize people and are used to describe important differences between people. As such,
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people can be described as Òself-determinedÓbased on the functional characteristics of their actions or behaviors. The concept of causal agency is central to this theoretical perspective. Broadly deÞned, causal agency implies that it is the individual who makes or causes things to happen in his or her life. An agent is a person or thing through which power is exerted or an end is achieved. Causal agency, as opposed to implying strictly that the individual caused something to happen, implies that something was purposeful or performed to achieve an end. Bandura addresses these issues when describing the nature of human agency. He stated: People can exercise inßuence over what they do. Most human behavior, of course, is determined by many interacting factors, and so people are contributors to, rather than the sole determiners of, what happens to them. In evaluating the role of intentionality in human agency, one must distinguish between the personal production of action for an intended outcome, and the effects that carrying out that course of action actually produce. Agency refers to acts done intentionally. (Bandura, 1997, p. 3)
A causal agent is, then, someone who makes or causes things to happen in his or her life. Self-determined people act as the causal agent in their lives. They act with intent to shape their futures and their destiny. Wehmeyer framed causal agency, and self-determination, within the concept of quality of life. Quality of life is a complex construct which has gained increasing importance as a principle in human services. Schalock (1996) suggested that quality of life is best viewed as an organizing concept to guide policy and practice to improve the life conditions of all people and proposed that quality of life is composed of a number of core principles and dimensions. The eight core principles forwarded by Schalock emphasize that quality of life is composed of the same factors and is important for all people (independent of disability status), is experienced when a personÕs basic needs are met, and is enhanced by integration and by enabling individuals to participate in decisions that impact their lives. The core dimensions of quality of life include (a) emotional wellbeing, (b) interpersonal relations, (c) material well-being, (d) personal development, (e) physical well-being, (f) self-determination, (g) social inclusion, and (h) rights. As Angyal (1941) noted, human beings are not completely autonomous or independent but are interdependent; our lives intermingle with the lives of many others, seen and unseen. For all people, choices are frequently constrained and rarely represent optimal options. We are dependent upon numerous others in our decisions, from close relatives and spouses, to medical professionals or Þnancial advisors. In short, self-determination does not reßect an absence of inßuence or even interference. Instead, it reßects choices and decisions made without undue interference or inßuence. As such, this deÞnitional framework proposes that people
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Michael L. Wehmeyer Development
Learning
Capacity
Environment
Perception/ Belief
Opportunity
Experience
Supports
Autonomy
SelfRegulation
Psychological Empowerment
SelfRealization
Relative Self-Determination
FIG. 2. WehmeyerÕs functional model of self-determination.
are causal agents in their lives, free from ÒundueÓinterference or inßuence, where the term ÒundueÓremains intentionally subjective and contextual, since what may be perceived by one individual to be an acceptable level of inßuence may appear to another as an unacceptable level of interference. This varies both within individuals and within cultures. Self-determination emerges across the life span as children and adolescents learn skills and develop attitudes that enable them to become causal agents in their own lives. These attitudes and abilities are the component elements of selfdetermination, and it is this level of the theoretical framework that drives instructional activities. The model is depicted graphically in Fig. 2. 1. ESSENTIAL CHARACTERISTICS OF SELF-DETERMINED BEHAVIOR People who are self-determined act autonomously, self-regulate their behavior, and are psychologically empowered and self-realizing. The term Òessential characteristicÓimplies that an individualÕs actions must reßect, to some degree,
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each of these four functional characteristics. Age, opportunity, capacity, and circumstances may impact the degree to which any of the essential characteristics are present and, as such, the relative self-determination expressed by an individual will likely vary, sometimes over time and other times across environments. Nonetheless, these essential elements need to be presentÑeach characteristic is a necessary but not sufÞcient characteristic of self-determined behavior. a. Behavioral Autonomy. The link between self-determination and autonomy spans back to the earliest use of the term in personality psychology. My use of the term draws from two primary sources: autonomy as synonymous with individuation from the developmental psychology literature and functional or behavioral autonomy as roughly synonymous with independence, drawn primarily from intervention focused literature. Developmental psychologists view the process of individuation, or the formation of the personÕs individual identity (Damon, 1983), as a critical component of social and personality development. Much of the literature in child development describes this process of individuation and the relationship between individuation and socialization. More concretely, Sigafoos, Feinstein, Damond, and Reiss (1988) deÞned individuation as Òaprogression from dependence on others for care and guidance to self-care and self-directionÓ(p. 432), the outcome of which is autonomous functioning or, when describing the actions of individuals achieving this outcome, behavioral autonomy. Behavioral autonomy, therefore, is the outcome of the process of individuation, and encompasses, fundamentally, actions in which people act (a) according to their own preferences, interests and/or abilities and (b) independently, free from undue external inßuence or interference. b. Self-Regulated Behavior. Self-regulation was deÞned earlier as Òacomplex response system that enables individuals to examine their environments and their repertoires of responses for coping with those environments to make decisions about how to act, to act, to evaluate the desirability of the outcomes of the action, and to revise their plans as necessaryÓ(Whitman 1990; p. 373). Self-regulated behaviors include the use of self-management strategies (including self-monitoring, self-instruction, self-evaluation, and self-reinforcement), goal setting and attainment behaviors, problem-solving and decision-making behaviors, and observational learning strategies (Agran, 1997). c. Psychological Empowerment. The inclusion of psychological empowerment and self-realization as essential characteristics of self-determined behavior illustrates the importance of both cognitive and behavioral contributions to this theoretical framework. As Bandura (1977) noted, a Òtheoryof human behavior cannot afford to neglect symbolic activitiesÓ (p. 13). Similarly, Agran (1997) noted the importance of cognitive behaviors in achieving self-regulation, including the use of metacognitive, self-instruction, self-reinforcement, and observational learning strategies. Psychological empowerment is a construct emanating from the
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Michael L. Wehmeyer
community psychology literature and referring to the multiple dimensions of perceived control, including its cognitive (personal efÞcacy), personality (locus of control), and motivational domains (Zimmerman, 1990). Community psychology involves theory, research, and practice relevant to the reciprocal relationships between individuals and the social system which constitute the community context. Zimmerman (1990) proposed a model in which positive perceptions of control (psychological empowerment) are an outcome of Òlearned hopefulness.ÓHe deÞnes learned hopefulness as the Òprocessof learning and utilizing problem-solving skills and the achievement of perceived or actual controlÓ(p. 72). ZimmermanÕs model of learned hopefulness Òsuggeststhat experiences that provide opportunities to enhance perceived control will help individuals cope with stress and solve problems in their livesÓ(pp. 72Ð73). Zimmerman and Rappaport (1988) forwarded the construct of psychological empowerment to account for the multidimensional nature of perceived control, which, according to these authors, had been previously treated as if it were a univariate construct. Zimmerman (1990) found that the three elements of perceived control [e.g., cognitive (selfefÞcacy), personality (locus of control), and motivation (motivation to control)] formed a single discriminant function which distinguished between individuals who scored low or high on a measure of hopelessness or alienation, including indicators of powerlessness and social isolation. Thus, according to Zimmerman, through the process of learning and using problem-solving skills and achieving perceived or actual control in oneÕs life (e.g., learned hopefulness), individuals develop a perception of psychological empowerment which, in turn, enables them to achieve desired outcomes such as social inclusion and involvement in the community. d. Self-Realization. The term Òself-realizationÓwas originally used by Gestalt psychologists to refer to the intrinsic purpose in the life of the person, but also has more global meaning related to the Òtendency to shape oneÕs life course into a meaningful wholeÓ(Angyal, 1941, p. 355). Though not frequently used any longer in the psychology literature, the term captures some nuances or ÒessenceÓ of self-determination missed by other conceptualizations. Basically, this essence is that self-determined people know what they do well and act accordingly. The two most frequently mentioned alternatives to the term Òself-realizationÓare selfactualization and self-awareness, but both have limited utility. Self-actualization, as conceptualized by Maslow (1943), adequately captures the essence of a selfdetermined personÕs actions as capitalizing his or her best assets and becoming all that one is capable of becoming. However, in addition to problems with MaslowÕs deÞnition and theoretical underpinnings of self-actualization (see, for example, Heylighen, 1992), Maslow conceptualized self-actualization as being reached only when all other needs are fulÞlled, and, in fact, attained by a small proportion of people. Conceptualizing self-determination within the construct of self-actualization implies that only a select number of individuals become
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self-determined, and people with disabilities are, almost certainly, not among that select group. Alternatively, the construct of self-awareness fails to capture the sense that self-determined people act on their knowledge about themselves to capitalize on their strengths. As such, people who are self-determined are self-realizing in that they use a comprehensive, and reasonably accurate, knowledge of themselves and their strengths and limitations to act in such a manner as to capitalize on this knowledge. This self-knowledge and self-understanding forms through experience with and interpretation of oneÕs environment and is inßuenced by evaluations of signiÞcant others, reinforcement, and attributions of oneÕs own behavior. 2. COMPONENT ELEMENTS OF SELF-DETERMINED BEHAVIOR As mentioned previously, Wehmeyer and colleagues identiÞed a set of component elements of self-determination. The essential characteristics that deÞne self-determined behavior emerge through the development and acquisition of these multiple, interrelated component elements. Table I lists these elements. Although not intended as an exhaustive taxonomy, these component elements are particularly important to the emergence of self-determined behavior. A complete discussion of each of these component elements is not feasible within the context of this chapter (see Agran, 1997; Wehmeyer, Agran, & Hughes, 1998; or Wehmeyer, 1997 for such a description). However, describing the component elements is important for two reasons. First, it is at this level which instruction occurs. That is, there are instructional strategies, methods, materials, and supports
TABLE I COMPONENT ELEMENTS OF SELF-DETERMINED BEHAVIOR Choice-making skills Decision-making skills Problem-solving skills Goal setting and attainment skills Independence, risk taking and safety skills Self-observation, evaluation, and reinforcement skills Self-instruction skills Self-advocacy and leadership skills Internal locus of control Positive attributions of efÞcacy and outcome expectancy Self-awareness Self-knowledge
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Michael L. Wehmeyer
which enable educators to ÒteachÓself-determination by enhancing student capacity in each of these areas. Wehmeyer, Agran, and Hughes (1998) identiÞed literally hundreds of instructional strategies and supports to promote these component elements. Second, each of these component elements has a unique developmental course or is acquired through speciÞc learning experiences and it is by describing the development of each of these component elements that we can describe the development of self-determination (Doll, Sands, Wehmeyer, & Palmer, 1996; Wehmeyer, Sands, Doll, & Palmer, 1997). The development and acquisition of these component elements is life-long and begins when children are very young. Some elements have greater applicability for secondary education and transition, while others will focus more on elementary years. As such, promoting self-determination as an educational outcome will require not only a purposeful instructional program, but one that coordinates learning experiences across the span of a studentÕs educational experience. Identifying the component elements and describing the development of these elements has promoted the design of instructional efforts to promote self-determination. Wehmeyer developed a student self-report measure of self-determination (Wehmeyer, 1996b) using the essential characteristics as domain areas, which enables students to self-assess instructional needs in self-determination and provides a vehicle for studentÐteacher discussions about self-determination. Other applied efforts included the identiÞcation of instructional strategies teachers can use to teach the component elements (Agran & Wehmeyer, 1999; Wehmeyer, Agran, & Hughes, 1998) and the development materials to enable students to self-direct learning related to their transition planning process (Wehmeyer & Lawrence, 1995) as well as the development of the Self-Determined Learning Model of Instruction (Wehmeyer, Palmer, Mithaug, Agran, & Martin, 2000) discussed earlier. 3. EMPIRICAL VALIDATION OF THE FUNCTIONAL MODEL The theoretical model was initially derived from focus groups of people with mental retardation and developmental disabilities (Wehmeyer, 1992b) and a comprehensive review of the pertinent literature (Wehmeyer, 1992a). To empirically test the theory, Wehmeyer and colleagues conducted a series of structured interviews with individuals with mental retardation in order to examine the contribution of essential characteristics of self-determined behavior to the achievement of behavioral outcomes closely associated with self-determination (Wehmeyer, Kelchner, & Richards, 1996). These interviews were conducted with more than 400 adults with mental retardation using a self-report measure of self-determined behavior (Wehmeyer, Kelchner, & Richards, 1995) and measures of each of the essential characteristics (Wehmeyer, Kelchner, & Richards, 1996). Upon completion of data collection activities, the sample was divided into two groups: people who scored high on the indicator of self-determination and those who scored low.
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These groups were then compared based on their self-determination scores on measures of each essential characteristic using multiple discriminant function analysis. Scores from measures of each of the four essential characteristics differed signiÞcantly based on relative self-determination grouping. In each case, individuals who were in the high self-determination group held more positive beliefs or exhibited more adaptive behaviors. In essence, the study indicated that each of the four essential characteristics were predictive of self-determination status. Measures of behavioral autonomy and self-regulation were particularly potent predictors of self-determination status. 4. RESEARCH USING THE FUNCTIONAL MODEL Research driven by this model has resulted in a wide array of Þndings with relation to self-determination and people with mental retardation. One line of research has provided evidence that adults with mental retardation and developmental disabilities are less self-determined than their peers without disabilities (Wehmeyer & Kelchner, 1994, 1995; Wehmeyer, Kelchner, & Richards 1995; Wehmeyer & Metzler, 1995; Wehmeyer & Palmer, 1997). As suggested in Fig. 1, the emergence of self-determination is based upon the enhancement of individual capacity as well as environments and supports that emphasize choice and autonomy. Another line of research has examined the impact of self-determination on the lives of individuals with mental retardation. Wehmeyer and Schwartz (1998) examined the link between self-determination and quality-of-life for adults with mental retardation. This research showed that self-determination status predicted membership in the higher quality-of-life group. Wehmeyer and Schwartz (1997) measured the self-determination of youth with learning disabilities or mental retardation prior to their graduation from high school, and their level of self-determination at that time predicted higher levels of independence, higher employment rates, and increased earnings one year out of high school. Additional research has linked self-determination issues with more effective career decision making for youth with cognitive disabilities (Wehmeyer, 1993). Third, this research has used the model to develop materials, methods, and strategies to promote self-determination, This includes a description of the development of self-determination (Doll, Wehmeyer, Sands, & Palmer, 1996; Wehmeyer, Sands, Doll, & Palmer, 1998), intervention in promoting student involvement in educational planning and decision making (Wehmeyer & Sands, 1998; Wehmeyer & Lawrence, 1995), and efforts to teach students to become more self-determined (Wehmeyer, 1995; Wehmeyer & Agran, 1999; Wehmeyer, Agran, & Hughes, 1998; Wehmeyer et al., 2000). E.
Summary
It is fair to say that, as a Þeld, we are in the early stages of understanding the construct of self-determination and its implications for individuals with mental
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Michael L. Wehmeyer
retardation. Across all four of the above cited models there is a need for additional research to provide validation of the model. As mentioned subsequently, the funding stream for research in this area has focused on model and curriculum development and there has been limited funding for research to establish a foundational knowledge. One common aspect of each model is that it applies to understanding self-determination for all individuals, not just people with mental retardation or, more accurately, not to the exclusion of people with mental retardation.
V.
RESEARCH DIRECTIONS
Research in self-determination as a personal construct is still quite limited, particularly when compared with the proliferation of instructional materials to promote this as an outcome. The rapid accumulation of such materials was a direct outcome of a 4-year funding program through the U.S. Department of EducationÕs OfÞce of Special Education, which funded a total of 26 model demonstration projects, Þve projects to develop assessment procedures in self-determination, and two projects to conduct research in student involvement in educational planning and decision making. This national effort brought the issue of self-determination to the forefront of disability policy and practice. In emphasizing model demonstration projects, however, this effort placed the proverbial cart before the horse in many ways. That is, curricular and material development proceeded without a solid foundation based on theory and research. Bruner (1966) deÞned instruction as [simply] Òaneffort to assist or to shape growthÓand theories of instruction as theories of Òhow growth and development are assisted by diverse meansÓ(p. 1). To achieve this, educators need (1) an understanding of theories of instruction and models of teaching that can drive our design of instructional techniques and educational supports and (2) an understanding of self-determination and its development and growth. It appears to be the case that in too many circumstances, we have begun curriculum and instruction design with an adequate understanding of the Þrst (instructional techniques) but an insufÞcient understanding of self-determination and its development and growth. The four models described previously can, however, serve as viable theoretical bases for future research upon which to build subsequent attempts to promote the self-determination of individuals with and without mental retardation. Almost across the board, however, there is a need to conduct additional research on the hypotheses and theoretical formulations that derive from these models overall and as they apply to people with mental retardation. Thus, there is the need to conduct research to empirically validate and test these models and the hypotheses they generate. In so doing, we can better understand both the model itself, and the putative relationships between self-determination, as conceptualized in that model, and related constructs, including quality of life, resilience, autonomy,
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self-regulation, and so forth. In addition, such research can and should begin to examine and clarify the contributions of factors outside the individual on the emergence of self-determination. Such research should examine the impact of a variety of environmental conditions on self-determination, explore the role of families on the development of self-determination, and identify instructional variables that promote or inhibit self-determination, to name just a few. A signiÞcant issue in further research is one of measurement. Currently there are a few measures of self-determination (Abery & Eggebeen, 1992a, 1992b; Wehmyer & Kelchner, 1995; Wolman, Campeau, Dubois, Mithaug, & Stolarski, 1994), yet none of these was designed to nor purports to measure all aspects of self-determination. Measurement in self-determination should share common features with empowerment evaluation, measurement in quality of life, and measurement in transition. Fetterman (1996) deÞned empowerment evaluation as Òthe use of evaluation concepts, techniques, and Þndings to foster improvement and self-determinationÓ(p. 4). Whereas many traditional assessment orientations mandate that the evaluator maintain impartiality and distance, Òempowerment evaluation has an unambiguous value orientationÑit is designed to help people help themselves and improve their programs using a form of self-evaluation and reßectionÓ(p. 5). In such a manner, assessment in self-determination will need to have a value orientation that respects and supports the role of self-evaluation and reßection. Within an empowerment evaluation framework, assessment becomes a collaborative effort, combining the input of the student and other signiÞcant parties and incorporating an evaluation of the environment. In other words, in empowerment evaluation, the focal point is individual self-evaluation and self-directed interpretation of assessment Þndings. Individuals work collaboratively with signiÞcant others to identify strengths and limitations and to chart a course for intervention. Like self-determination, quality of life is a multidimensional construct, and like measurement in quality of life, assessment will need to draw from multiple measurement techniques to best capture a valid snapshot of relative self-determination. For example, Schalock (1996) identiÞed three measurement techniques that would be needed to adequately depict a personÕs quality of life: (1) participant observation, (2) performance-based assessment, and (3) standardized instruments. Participant observation techniques involve data collectors observing what people do, listening to what they say, and frequently participating in their daily activities to get a better sense of their lives (Schalock, 1996, p. 12). This also involves use of subjective indicators, like self-report measures. Performance-based assessments refer to using objective indicators of quality of life, such as material or physical wellbeing. Standardized assessments are those that try to measure ÒglobalÓquality of life. So too will such multimethod approaches be necessary to accurately measure and describe self-determination. Current measurement tools provide too few ways
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of measuring this construct and can only provide limited information. Finally, assessment in transition, like measurement in quality of life, involves multiple approaches or techniques to assessment, including the use of standardized tests, interviews, direct observation, and criterion-referenced assessment. In addition, however, valid transition measurements are those that use multiple methods across multiple environments, including school, community, employment settings, and so forth. Measurement in self-determination should include such a cross-environment focus. Clearly this is a tall order. Some aspects of measurement in self-determination will be more important to program planning and implementation, while others are more relevant to research. However, for both research and practice in selfdetermination to move forward, we need to match the complexity of the construct with the complexity of the assessment process used to measure self-determination. Such advances should be both a part of and framed within empirically validated theoretical models of self-determination and should place increased emphasis on measurement validity and reliability. With the previous steps in place, the Þeld will be better equipped and prepared to implement services and supports that enable individuals with mental retardation to achieve enhanced self-determination and to assume greater control over their lives and destinies. However, as a Þeld we must not marginalize self-determination as a disability-only issue. That is, self-determination is a construct that has equal applicability to individuals with and without disabilities. All four of the models described earlier are applicable to understanding self-determination as a function of the human experience and condition, not just as part of the experience of disability. There is an urgent need to conduct tightly controlled and well-designed research in self-determination that does not exclude individuals with mental retardation, but examines it within the broader context of psychology and educational theory. This will be difÞcult because, historically, there has been limited application of theories pertaining to persons with mental retardation to the general population. In fact, it is of recent vintage that theories derived in typical psychology were even applied to understanding individuals with mental retardation. Switzky (1997) observed that conceptions of personality and motivational processes in persons with mental retardation prior to the 1960s Òwereonly loosely related to theoretical models derived from mainstream psychological thought, and virtually none of the available knowledge was based on any sustained systematic study of mentally retarded personsÓ(p. 343). This is certainly true of self-determination as a psychological construct which has existed for the better part of Þfty years, but has only been applied to understanding people with mental retardation in the past Þve years. However, because of the salience of self-determination and its importance to people with disabilities, it seems evident that this is an area in which research applied to mental retardation, if conducted in the context of understanding human behavior in general, might inform mainstream psychology.
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Vaughn, C. E. (1993). The struggle of blind people for self-determination: The dependencyrehabilitation conßict; empowerment in the blindness community. SpringÞeld, IL: Charles C. Thomas. Ward, M. J. (1996). Coming of age in the age of self-determination: A historical and personal perspective. In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 1Ð16).Baltimore, MD: Paul H. Brookes. Warren, B. (1993). The right to choose: A training curriculum. New York: New York State OfÞce of Mental Retardation and Developmental Disabilities. Wehmeyer, M. L. (1992a). Self-determination and the education of students with mental retardation. Education and Training in Mental Retardation, 27, 302Ð314. Wehmeyer, M. L. (1992b). Self-determination: Critical skills for outcome-oriented transition services. The Journal for Vocational Special Needs Education, 39, 153Ð163. Wehmeyer, M. L. (1993). Perceptual and psychological factors in career decision-making of adolescents with and without cognitive disabilities. Career Development for Exceptional Individuals, 16, 135Ð146. Wehmeyer, M. L. (1995). A career education approach: Self-determination for youth with mild cognitive disabilities. Intervention in School and Clinic, 30, 157Ð163. Wehmeyer, M. L. (1996a). Self-determination as an educational outcome: Why is it important to children, youth and adults with disabilities? In D. J. Sands & M. L. Wehmeyer (Eds.), Self-determination across the life span: Independence and choice for people with disabilities (pp. 15Ð34).Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L. (1996b). A self-report measure of self-determination for adolescents with cognitive disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 31, 282Ð293. Wehmeyer, M. L. (1997). Self-determination as an educational outcome: A deÞnitional framework and implications for intervention. Journal of Developmental and Physical Disabilities, 9, 175Ð 209. Wehmeyer, M. L. (1998). Self-determination and individuals with signiÞcant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps, 23, 5Ð16. Wehmeyer, M. L., Agran, M., & Hughes, C. (1998). Teaching self-determination to youth with disabilities: Basic skills for successful transition. Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L., Agran, M., & Hughes, C. (2000). A national survey of teachersÕpromotion of self-determination. Journal of Special Education. 34, 58Ð68. Wehmeyer, M. L., & Bolding, N. (2000). Enhanced self-determination of adults with mental retardation as an outcome of moving to community-based work or living environments. Manuscript submitted for publication. Wehmeyer, M. L., & Bolding, N. (1999). The impact of living and working environments on the self-determination of adults with mental retardation. Mental Retardation, 37, 353Ð363. Wehmeyer, M. L., & Kelchner, K. (1994). Interpersonal cognitive problem-solving skills of individuals with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 29, 265Ð278. Wehmeyer, M. L., & Kelchner, K. (1995). Measuring the autonomy of adolescents and adults with mental retardation: A self-report form of the Autonomous Functioning Checklist. Career Development for Exceptional Individuals, 18, 3Ð20. Wehmeyer, M. L., & Kelchner, K. (1995). The ArcÕs Self-Determination Scale. Arlington, TX: The Arc of the United States. Wehmeyer, M. L., Kelchner, K., & Richards, S. (1995). Individual and environmental factors related to the self-determination of adults with mental retardation. Journal of Vocational Rehabilitation, 5, 291Ð305.
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Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behaviors of adults with mental retardation and developmental disabilities. American Journal on Mental Retardation, 100, 632Ð642. Wehmeyer, M. L., & Lawrence, M. (1995). Whose future is it anyway? Promoting student involvement in transition planning. Career Development for Exceptional Individuals, 18, 69Ð83. Wehmeyer, M. L., & Metzler, C. A. (1995). How self-determined are people with mental retardation? The National Consumer Survey. Mental Retardation, 33, 111Ð119. Wehmeyer, M. L., & Palmer, S. B. (1997). Perceptions of control of students with and without cognitive disabilities. Psychological Reports, 81, 195Ð206. Wehmeyer, M. L., Palmer, S., Agran, M., Mithaug, D., & Martin, J. (2000). Promoting causal agency: The Self-Determined Learning Model of Instruction. Exceptional Children, 66, 439Ð453. Wehmeyer, M. L., & Sands, D. J. (1998). Making it happen: Student involvement in education planning, decision making and instruction. Baltimore, MD: Paul H. Brookes. Wehmeyer, M. L., Sands, D. J., Doll, B., & Palmer, S. B. (1997). The development of self-determination and implications for educational interventions with students with disabilities. International Journal of Disability, Development, and Education, 44, 212Ð225. Wehmeyer, M. L., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A followup study of youth with mental retardation or learning disabilities. Exceptional Children, 63, 245Ð255. Wehmeyer, M. L., & Schwartz, M. (1998). The relationship between self-determination, quality of life, and life satisfaction for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3Ð12. Werner, H., & Kaplan, B. (1965). Symbol formation. Hillsdale, NJ: Erlbaum. West, M. D., & Parent, W. S. (1992). Consumer choice and empowerment in supported employment services: Issues and strategies. Journal of the Association for Persons with Severe Handicaps, 17, 47Ð52. White, R. W. (1959). Motivation reconsidered: The concept of competence. Psychological Review, 66, 297Ð333. Whitman, T. L. (1990). Self-regulation and mental retardation. American Journal on Mental Retardation, 94, 347Ð362. Williams, R. R. (1989). Creating a new world of opportunity: Expanding choice and self-determination in lives of Americans with severe disability by 1992 and beyond. In R. Perske (Ed.), Proceedings from the National Conference on Self-Determination (pp. 16Ð17).Minneapolis, MN: Institute on Community Integration. Wolfensberger, W. (1972). Normalization: The principle of normalization. Toronto: National Institute on Mental Retardation. Wolman, B. B. (1973). Dictionary of behavioral science. New York: Van NostrandÑReinhold. Wolman, J., Campeau, P., Dubois, P. A., Mithaug, D. E., & Stolarski, V. S. (1994). AIR SelfDetermination Scale and User Guide. Stanford, CA: American Institutes on Research. Zimmerman, M. A. (1990). Toward a theory of learned hopefulness: A structural model analysis of participation and empowerment. Journal of Research in Personality, 24, 71Ð86. Zimmerman, M. A., & Rappaport, J. (1988). Citizen participation, perceived control, and psychological empowerment. American Journal of Community Psychology, 16, 725Ð750.
International Quality of Life: Current Conceptual, Measurement, and Implementation Issues KENNETH D. KEITH DEPARTMENT OF PSYCHOLOGY UNIVERSITY OF SAN DIEGO SAN DIEGO, CALIFORNIA
I.
INTRODUCTION
A decade ago, Schalock (1990a) predicted that quality of life would become Òthe issue of the 1990sÓ(p. x) in the Þeld of intellectual disability, despite reservations of the sort expressed by Luckasson (1990), who feared the quality-of-life movement would prove dangerous and perhaps lead to denial of basic life necessities for people with disabilities. Research on the topic subsequently expanded rapidly: Cummins (1995) reported that over 100 deÞnitions exist for quality of life; Antaki and Rapley (1996) found 1400 references to quality of life in the psychological literature from 1992 to 1995; and Hughes, Hwang, Kim, Eisenman, and Killian (1995) identiÞed more than 1000 individual measures of various aspects of quality of life. Certainly, researchers responded to LandesmanÕs (1986) challenge to address the issues of deÞnition and measurement of quality of life, and the notion has shown a degree of persistence and acceptance that prompted Luckasson (1997) to say ÒIam beginning to change my mind: The phantom of quality of life/happiness, as a guide to good, may be absolutely appropriate, and maybe even a right.Ó(p. ix). This is not to say that questions about the utility of the construct of quality of life do not remain (Hatton, 1998), but there can be no doubt that Schalock (1990a) was right in predicting its importance as an issue for the decade. Fears regarding the utility of the concept of quality of life and the wisdom of its widespread study and use were not without foundation. For example, economic rationalism, with a focus on costÐbeneÞtrelationships and an effort to quantify the value of a more or less healthy life, might lead to denial of medical treatment to INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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individuals with disabilities (The Association for Persons with Severe Handicaps, 1984; Parmenter, 1996). Taylor and Bogdan (1996) reported a study (Gross, Cox, Tatyrek, Pollay, & Barnes, 1983) embodying a formula to determine quality of life for decision making in treatment of infants with disabilities, and Brown (2000) described the relationship between quality-of-life values and economic rationalism as a collision course. To date, however, the effect of such efforts to quantify the value of life seems limited to the Þeld of medical economics and has in fact been opposed by advocates for people with disabilities (Parmenter, 1996). Goode (1997) advocated an approach to policy making that would exclude use of quality of life as a mechanism for determining eligibility for treatment or services and noted agreement among researchers that the study of quality of life of people with disabilities should not be separated from that of individuals without disabilities. With regard to the latter point, a number of commentators (e.g., Goode & Hogg, 1994, 1997; Keith, 1990; Kozleski & Sands, 1992; Schalock & Keith, 1993) have discussed the importance of connecting quality of life of persons with developmental disabilities to that of other citizens in an effort to assure integration and enjoyment of community life by individuals with disabilities. In this context of increasing acceptance, proliferating research, and widespread use of the quality of life construct, I discuss an emerging international consensus on conceptualization, measurement, and application. Clearly, quality of life is an idea that is increasingly recognized as culturally divergent, international in scope, and multidimensional in its nature. Thus, its deÞnition and measurement have been, as Landesman (1986) expected, replete with disagreement and difÞculty. Nevertheless, some agreement has gradually formed around its key dimensions, some principles (and problems) underlying its measurement are broadly accepted, and some trends and themes likely to inßuence future application and understanding of quality of life can be identiÞed.
II.
CONCEPTUALIZING QUALITY OF LIFE
DeÞning and conceptualizing quality of life has been, and remains, a complex process that presents numerous technical and philosophical problems. This state of affairs prompted Schalock (1996) to suggest that we are better off not with a deÞnition of quality of life, but rather with an agreement to think of quality of life as an organizing conceptÑa notion that might give guidance to service development and to evaluation of core dimensions associated with itÑand Parmenter (1992) voiced the fear that quality of life might lose its true meaning in the search to operationalize it and make it into public policy. Goode (1997) presented seven exemplary deÞnitions chosen from worldwide literature and observed that they had in common three characteristics noted earlier by Schalock, Bartnik, Wu, Konig, Lee, and Reiter (1990): general feelings of well-being, opportunities to fulÞll
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potential, and feelings of positive social involvement. Goode (1997) also noted, however, the tendency of some researchers to believe that quality of life cannot be precisely deÞned or measured. Currently, researchers are less likely to attempt to speciÞcally deÞne quality of life than to study its various facets and factors, although it must be acknowledged that this effort also inevitably imposes a de facto working deÞnition of the concept. A.
The Objectivity–Subjectivity Question
A long history of traditional belief held that objective factors, and in particular elimination of poverty through improved economic status, would enhance personal well-being (Campbell, Converse, & Rodgers, 1976). However, for general populations the correlation between income and sense of well-being is modest (Myers, 1992, 2000), and in the Þeld of intellectual disabilities the best evidence seems to suggest that the individual experience of quality of life involves both the objective conditions to which an individual is exposed and the subjective perceptions of the person in interpreting those objective factors (Keith, 1996). Recognition of this fact led Campbell et al. (1976) to observe that ÒThereis not much doubt that the central issue confronting any examination of the perceived quality of life involves the relationship between subjective and objective indicators of well-beingÓ (p. 474). Edgerton (1996), though, questioned the nature of the relationship between objective and subjective factors and cautioned that, at least for some people, the subjective perception of well-being may not be closely linked to objective standards of quality. The nature of the relationship between the objective and the subjective, Edgerton asserted, is a rather difÞcult empirical question. Goode (1997) proposed a conceptual model for research that might link objective and subjective approaches via a cooperative qualitative-quantitative framework, while noting that although the idea is good, Òthedevil is in the detailsÓ(p. 217). Parmenter (1992) reviewed several studies that could be interpreted in support of EdgertonÕs (1996) view, revealing variable and often low correlations between objective and subjective indicators of quality of life. There is no clear objective standard by which to assess quality of life, and researchers seem agreed that subjective assessment of individual perceptions of life experiences in such areas as relationships, community activity, physical and material well-being, and personal development (Flanagan, 1978; 1982), as well as subjective views of satisfaction and happiness (Abbey & Andrews, 1986; Myers, 1992), must also be taken into account. On the other hand, there are some potentially serious problems with current efforts to assess subjective quality of life (Hatton, 1998), and researchers must take these concerns seriously. Hatton identiÞed three major problems with assessment of subjective aspects of quality of life: the difÞculty in interviewing individuals who lack communication skills; the different meanings attributed to quality of life interviews by different individuals; and the concern, expressed previously by
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Edgerton (1990, 1996), that subjective well-being may be as much a product of individual disposition or personality as of discernible changes in life circumstances. Felce (1996; Felce & Perry, 1996) proposed a three-part model that attempts to integrate objective description of life conditions and subjective assessment of satisfaction with a third dimensionÑpersonal values and aspirations. The importance of personal values was previously recognized by Flanagan (1978); more recently by Renwick, Brown, and Raphael (2000); and in the weighting of ratings of life experience in generic populations by Campbell, Converse, and Rodgers (1976) and among people with disabilities by Cummins (1993). One could argue, of course, that such inßuences as personal values are simply another feature of the subjective dimension, just as Rapley (2000) asserted the contribution of social relationships to estimates of subjective well-being. Perhaps the key point of consensus here is that no current writer fails to include a subjective dimension in any formulation of quality of life, and typical models (e.g., Cummins, 1999) present subjective quality of life as their central outcome. B.
The Search for Core Dimensions
In an effort to move beyond the objectiveÐsubjective debate, Schalock (1996) suggested a move to consensus on core quality of life dimensions that might be measured in various ways (e.g., participant observation, performance-based assessment, and standardized instruments). However, the concept of quality of life exists in an increasingly cross-cultural psychological environment (Heal, Schalock, & Keith, 1992; Keith, 1996; Keith, Yamamoto, Okita, & Schalock, 1995) in which important dimensions of human experience are linked closely to cultural inßuences (Markus & Kitayama, 1991). There is thus potential for broad (but possibly unfounded) cross-cultural generalization (Brislin, 1993) in identiÞcation of core dimensions, and values, an important foundation for quality of life, mightÑlik e other psychological conceptsÑv ary signiÞcantly from one culture to another (Feather, 1994). Keith, Heal, and Schalock (1996) investigated the possibility of cross-cultural agreement on the meaning of critical quality of life concepts by asking persons working in the Þeld in seven different cultures (Australia, England, Finland, Germany, Japan, Taiwan, and the United States) to evaluate aspects of the meaning of 10 such concepts. The concepts were selected by review of literature reßecting opinions of people with disabilities, accreditation standards, and world literature on quality of life measurement. The 10 concepts were (1) rights, (2) relationships, (3) satisfaction, (4) environment, (5) economic security, (6) social inclusion, (7) individual control, (8) privacy, (9) health, and (10) growth and development. A semantic differential technique similar to that used by Osgood, May, and Miron (1975) was used to ask participants to rate the concepts on dimensions
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(value, potency, and activity) that were found by Osgood et al. to be near-universal across 22 languages. Keith et al. found a surprising level of agreement in the ratings of the 10 concepts across the seven countries. All the countries (except Japan) showed similar patterns in the ratings, and all the countries (including Japan) assigned positive ratings (on at least some dimensions) to all the concepts. These quality of life concepts were sufÞciently robust and universal to receive strong cross-cultural validation by a diverse group of persons working in the Þeld. Further, in a different, but related, effort, Heal (1996) analyzed the contents of GoodeÕs (1994) book on international perspectives and issues in quality of life and found that these concepts were addressed by numerous writers from a variety of cultural backgrounds. The central importance of the individual perspectives of people with disabilities (and other nonresearchers) has been recognized by a wide variety of workers (e.g., Felce, 1996; Goode & Hogg, 1994; Keith, 1990; Renwick & Brown, 1996; Renwick, Brown, & Raphael, 2000; Taylor & Bogdan, 1996), in several countries, and major projects have been undertaken to solicit the input and participation of nonresearchers in conceptualizing and measuring quality of life (e.g., Bonham et al., 1998; The ARC of Nebraska, 1998). Felce (1996) proposed that the structure of quality of life domains should meet two criteria: (1) in recognition of the complexity of life they must reßect the possibility of a multielement, multifocal approach to assessment; and (2) they must generally reßect a broad knowledge of those things important to us all. Felce went on to suggest six possible domains: physical well-being, material well-being, social well-being, productive well-being, emotional well-being, and rights or civic well-being. Felce acknowledged the overlap of this list with domains proposed by others and noted the considerable level of agreement among researchers on this point. Internationally, consensus has developed (e.g., Carbonell, 1999; Felce, 1996; Hatton, 1998) around a model proposed by Schalock (1996), conceptualizing quality of life in terms of eight core dimensions: (1) emotional well-being, (2) interpersonal relations, (3) material well-being, (4) personal development, (5) physical well-being, (6) self-determination, (7) social inclusion, and (8) rights. Schalock (1996) argued that these dimensions were both empirical and experiential, that they would lend themselves to multiple approaches to measurement, that each could be examined via multiple exemplary indicators, and that such an approach would help to break down the distinction between objective and subjective indicators of quality of life. Hughes et al. (1995), in a comprehensive review of literature, proposed a somewhat lengthier list of dimensions for a consensus model of quality of life. However, when speciÞc social indicators (employment, recreation, supports, etc.) are separated (as they are in the Schalock model), the remaining dimensions overlap virtually totally with SchalockÕs (1996) list. I should note that, while certain of these dimensions (e.g., self-determination and
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rights) might not have been seen as central in traditional work on quality of life and well-being of people without disabilities (e.g., Flanagan, 1978), recent work (e.g., Diener & Suh, 1999; Ryan & Deci, 2000) sheds new light on the generic nature of their contribution. C.
Quality of Life as Construct
Quality of life has been construed by some as an Òinner senseÓ (Taylor & Bogdan, 1996); as a correlate of temperament or personality (Edgerton, 1996); as a construct sensitive to anthropological, sociological, and psychological inßuences (Brown, 2000); and as an interactional product of person and environment (Rapley, 2000). The nature of the quality of life construct, as opposed to a simple deÞnition, is important in the research literature for a central compelling reason: If, as Edgerton (1996) has suggested, Ò. . .features of a personÕs environment are less important in bringing about a sense of well-being than are aspects of that personÕs personality or temperamentÓ (p. 88), the response of the Þeld might be quite different than if Schalock (1997a) was correct when, in identifying the best predictors of quality of life, he noted that these Ò. . .are factors that programs can do something aboutÓ(p. 252). And Edgerton (1996), despite his caution that environmental change may not change quality of life, nevertheless identiÞed a list of improvements (e.g., housing, health care, employment, recreation) that any society should provideÑa list very much like quality of life predictors enumerated by Schalock (1997a). Thus, while there may be disagreement on the relative weight of individual versus environmental contributors to quality of life, the importance of improving environmental situations for individuals with disabilities is not in dispute. Meanwhile, research continues in areas aiming to illuminate the relationship between personal disposition and various aspects of personal well-being. Although estimates of the genetic contribution to well-being (as seen in personality) vary, it seems reasonable to conclude that it may account for roughtly 50% of the variance (cf. Diener, Suh, Lucas, & Smith, 1999). As efforts are made to improve the situation of people with disabilities, quality of life is viewed in at least three important ways (Keith & Schalock, 2000): (1) as a sensitizing notion that provides reference and guidance, with focus on the individual and the individualÕs environment; (2) as a social construct useful in improving individualsÕperceived well-being; and (3) as a unifying theme providing a systematic framework within which to view work aimed toward improving the lives of individuals. This conception is consistent with the understanding of quality of life as rooted in individual perspectives, encompassing perception of disability and the role of service delivery (Brown, Brown, & Bayer, 1994), and with the notion that quality of life provides a useful context for planning and evaluation of services (Dennis, Williams, Giangreco, & Cloninger, 1993).
INTERNATIONAL QUALITY OF LIFE
III.
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MEASURING QUALITY OF LIFE
The complexity of the problem of deÞning and conceptualizing quality of life foreshadows an equally difÞcult challenge in measurement. Efforts to measure quality of life go back as least as far as Thorndike (1939), and the number of studies published in the area of disabilities has increased in recent years (Hughes et al., 1995). The concept is elusive (Felce & Perry, 1995), multifaceted (Parent, 1992), and fraught with problems (Campbell et al., 1976). A variety of objective measures has been employed in estimating quality of life of individuals with intellectual disabilities (Perry & Felce, 1995), and many researchers have used interviews or questionnaires of various sorts (e.g., Brown et al., 1994; Hughes et al., 1995; Koide et al., 1996; Ouellette-Kuntz, 1990; Schalock & Keith, 1993). SpeciÞc techniques have included multidimensional scales, ethnographic studies of individual lives, discrepancy analysis, and direct behavioral data collection efforts. I brießy review representative work utilizing each of these approaches, and then go on to comment on signiÞcant measurement issues noted by Raphael (1996). A.
Multidimensional Scales: Examples, Issues, and Challenges
As I have shown earlier in this chapter, investigators are agreed that quality of life is an entity constructed of multiple dimensions. This fact has prompted writers (Brown et al., 1994; Heal, Borthwick-Duffy, & Saunders, 1996; Schalock, 1996) to recognize the utility of multifactored approaches to assessment, and these approaches have of course been accompanied by a number of measurement issues and challenges associated with such procedures. 1. EXAMPLES OF SCALES Although efforts to assess quality of life of other populations predated development of instruments for use in intellectual disabilities, Heal and Chadsey-Rusch (1985) produced an early multidimensional scale (The Lifestyle Satisfaction Scale) for such use. The Lifestyle Satisfaction Scale had four subscales: Community Satisfaction, Friends and Free Time Satisfaction, Satisfaction with Services, and General Satisfaction. The Scale was later revised and expanded to include such additional dimensions as job satisfaction, recreation and leisure, and satisfaction with interpersonal interactions (Harner & Heal, 1993; Heal, Rubin, & Park, 1995), and speciÞc adaptations have been developed for particular purposes (e.g., Hawkins, Kim, & Edlund, 1995). Keith, Schalock, & Hoffman (1986) developed the Quality of Life Questionnaire (QOL.Q), an early instrument that measured individual responses in three factors: Environmental Control, Community Involvement, and Social Relations.
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The QOL.Q was subsequently revised, with the most recent revision (Schalock & Keith, 1993) incorporating four scales: Satisfaction, Productivity, Empowerment, and Social Belonging. Another early effort to produce a multidimensional quality of life scale was that of Cummins (1991), who developed the Comprehensive Quality of Life ScaleÑ Intellectual Disability (ComQol-ID), an instrument with seven scales: Material Things, Physical Well-Being, Productivity, Intimacy, Safety, Place in Society, and Emotional Well-Being. This instrument has also been revised several times (e.g., Cummins, 1997). Both the QOL.Q and the ComQol-ID have been widely used in several countries by researchers investigating quality of life of people with intellectual disability, and tentative efforts have been made to study the crosscultural utility of such instruments (e.g., Keith, 1996; Keith, Yamamoto, Okita, & Schalock, 1995; Rapley & Lobley, 1995). A multidimensional instrument developed to assess quality of life of individuals with severe developmental disabilities is the Quality of Life Interview Schedule (QUOLIS) (Oullette-Kuntz & McCreary, 1996). The QUOLIS was designed to utilize proxy respondents as informants on behalf of people who cannot themselves participate directly in an interview and samples 12 life domains: health services, family guardianship, income maintenance, education-employment, housing and safety, transportation, social-recreational, religious-cultural, case management, advocacy, counseling, and aesthetics. There are, of course, other multidimensional instruments developed to measure quality of life. Schalock (1996), for example, compiled a list of such assessment instruments, including work by the researchers cited here (Cummins, 1993; Harner & Heal, 1993; Schalock & Keith, 1993) as well as additional scales by Brown, Bayer, and McFarlane (1989); Evans, Burns, Robinson, and Garrett (1985); Halpern, Nave, Close, and Nelson (1986); and Keith and Schalock (1995). 2. MEASUREMENT ISSUES AND CHALLENGES Psychometric instruments purporting to measure quality of life must, of course, meet appropriate psychometric criteria (reliability, validity, and standardization) (Cheng, 1988; Harner & Heal, 1993; Hawkins, Kim, & Eklund, 1995; OulletteKuntz, 1990; Schalock, 1996). However, additional issues are perhaps even more fundamentally challenging to measurement in this realm. Some of these include the problems arising (1) when individuals cannot respond on their own behalf to questionnaires or interviewing procedures (Borthwick-Duffy, 1990; Campo, Sharpton, Thompson, & Sexton, 1996; Dennis et al., 1993), (2) when personal values might indicate the need for individual weighting of the components of measured quality of life (Felce & Perry, 1995), and (3) when the central notion of measurement of quality of life is called into question (Taylor, 1994). a. The Informant/Proxy Problem. A number of researchers, including Brown, Brown, and Bayer (1994); Campo et al. (1996); Felce and Perry (1995); Keith and
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Schalock (1995); Oullette-Kuntz and McCreary (1996); and Schalock and Keith (1993) have recognized the difÞculty inherent in obtaining individual quality of life data or views from individuals with severe or profound intellectual disabilities or other conditions inhibiting communicative capacity. Family members, advocates, or other individuals well acquainted with the life of the target individual have sometimes been enlisted as proxy informants, and some instruments (e.g., Keith & Schalock, 1995; Keith, Schalock, & Hoffman, 1986; Schalock & Keith, 1993) have been calibrated, reporting interrater agreements between informants and individuals with disabilities who are verbal. However, these writers, as well as numerous others (Brown, Brown, & Bayer, 1994; Cummins, 1992; Felce & Perry, 1995; Goode & Hogg, 1994; Hatton, 1998; Rapley & Beyer, 1996) have recognized the difÞculties and dangers inherent in entrusting judgments about quality of life to surrogates, proxies, or other informants. Second-party ratings may not accurately reßect the views of the individual (Goode & Hogg, 1994; Heal & Sigelman, 1990; Stancliffe, 1995), and agreements tend to be lower for those domains that require more subjective judgments (Schalock, Keith, & Hoffman, 1990). Nevertheless, at least one instrument, the QUOLIS (Ouellette-Kuntz & McCreary, 1996), relies heavily upon proxy reports in assessing quality of life of individuals whom the authors feel cannot be interviewed, despite acknowledging the advice of Patrick and Erickson (1993) against the practice, particularly in subjective domains. The proxy problem remains a dilemma, and it requires more research. While interviews with individuals with signiÞcant intellectual disabilities are difÞcult and of questionable reliability (Felce & Perry, 1995), the research on informants is also problematic (Cummins, 1992). Useful investigation in this area will likely include study of characteristics of informants that might make them better ÒwitnessesÓ(Cummins, 1992), and investigation of more nearly objective quality-oflife dimensions such as direct observation of engagement in meaningful activity (Felce, 2000). At any rate, as Ouellette-Kuntz and McCreary (1996) argued, ÒTo do nothing because of uncertainty will not advance our understandingÓ(p. 273). b. The Role of Personal Values. In development of the ComQol-ID, Cummins (1991) highlighted the hierarchical nature of human needs, suggesting that qualityof-life domains should be ordered in importance by each individual in a manner consistent with personal values. Renwick and Brown (1996), in a discussion of assumptions underlying their conceptual model of quality of life, also advocated the importance of taking into account the values (along with cognitions, beliefs, and interests) of the individual. As I noted brießy earlier, Felce (1996), in elaborating a quality-of-life model, included not only the subjective and objective dimensions, but also a dimension incorporating personal values and aspirations (deÞned as the relative weights given by the individual to the objective and subjective factors)Ñ which, when added to the subjective and objective factors, would produce overall well-being (quality of life).
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However, not all multidimensional measures of quality of life attempt to weight personal values in a systematic way. For example, neither the QOL.Q (Keith, Schalock, & Hoffman, 1986; Schalock, Keith, & Hoffman, 1990; Schalock & Keith, 1993) nor the QUOLIS (Ouellette-Kuntz, 1990; Ouellette-Kuntz & McCreary, 1996) refer explicitly to the role of personal values, except to the extent that personal views are reßected in responses to subjective questionsÑa procedure different from the actual assignment of differential weights to domains based upon the individualÕs perception of their importance. This is not to say, however, that these writers are not concerned with values. In fact, although researchers have taken different paths with regard to the role of personal values and their weight in quality of life measurement, there seems to be no disagreement on the importance of fundamental values and principles to quality of life research in the Þeld of intellectual disabilities. Raphael (1996) provided a particularly cogent discussion of this issue, pointing out that while quality-of-life researchers in some Þelds have attempted to create theoretical models devoid of value statements, those working in developmental disabilities have nearly always made explicit statements of underlying values. These statements generally indicate the importance of meeting individual needs; the similarity of quality of life for individuals with and without disabilities; the role of personal opportunity associated with home, work, and community; and the need for personal growth and development (Raphael, 1996). Thus, researchers studying quality of life of people with developmental disabilities, perhaps unlike some (e.g., the economic rationalists) studying it in other realms, would seem to agree with Edgerton (1991a) in his assertion that individuals concerned with the well-being of those with mental retardation Ò. . .should recognize that what they value in their lives has an intrinsic worth and do what we can to protect their freedom to choose or maintain what they valueÓ(p. 273). Still, the question remains whether either objective or subjective measures of quality of life have meaning and are interpretable without knowledge of the value placed on them by the individual in his/her particular context (Felce & Perry, 1995), and efforts continue (e.g., Cummins, 1997) to make personal values a meaningful factor in quality of life measurements. c. Viability of Measurement. Taylor (1994) made a distinction between Òquality of lifeÓas a sensitizing concept and ÒQOLÓas a deÞnitive concept. Taylor quoted Blumer (1969) in pointing out that a sensitizing (unlike a deÞnitive) concept, rather than providing a clear deÞnition, simply offers general guidance or direction for study. In transforming quality of life to QOL, Taylor suggested, it may be reduced to precision at the expense of meaning and may produce a Òtyranny of QOLÓthat prescribes lifestyles and limits personal freedom and satisfaction. ÒThe good life,Óhe concluded, Òshouldnot be reduced to the good life scaleÓ(p. 264). Edgerton (1990) sounded a similar warning in criticizing the ÒAmerican passion for reducing complex qualitative concepts to simple scalar instrumentsÓ(p. 150). EdgertonÕs concerns, like those of Taylor (1994), included the fear that quality
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of life scales might result in measures that would prompt imposition of speciÞc life standards or expectations on the lives of individuals. Edgerton went on to describe examples of people living quite happily in circumstances that others might, according to some quality of life Òstandard,Óconsider unacceptable or even deplorable. These issues raise the kinds of moral questions about implications of quality-of-life measurement that prompted Wolfensberger (1994) to suggest rejection of quality of life as a ÒhopelesstermÓ(p. 285). In a discussion of problems associated with assessment of quality of life, Hatton (1998) articulated the inherent tension existing between quality-of-life theory that focuses on the individualized nature of the concept and the need, for measurement purposes, to produce standardized measures of quality of life. Key aspects of this paradox were laid out in great detail by Antaki and Rapley (1996) in their discussion of the inconsistency between speciÞc, formal, ÒofÞcialÓstandardized quality-of-life assessment and the more general, informal, nonpsychometric approaches that might be more often used to simply ask people whether they are happy with their lives. Researchers may be well advised to consider the likelihood that quality of life should be more broadly (rather than narrowly) conceptualized, that it is a multidimensional construct, that it is reßected in multiple indicators and measurement techniques, and that it is interpreted in individual (not normative) experience (Schalock, 1996). B.
Ethnographic Studies
Edgerton (1990) and his colleagues have carried out a long-running program of longitudinal research aimed toward naturalistic, unobtrusive observation and understanding of the lives of people with mental retardation in natural contexts and through their own eyes. This work has been conducted by anthropologists and has not utilized the kinds of psychometric or interview techniques described in the previous sections (Edgerton, 1991b). Edgerton (1996) has advocated prolonged contact with people in the context of their ongoing lives and at more or less unpredictable intervals, all with the aim of enhancing a richer, fuller understanding of the reality of life satisfaction. This approach has produced detailed personal accounts of the lives of individuals, often reported in the voices of the people themselves (e.g., Edgerton & Gaston, 1991). Although their methods were somewhat different from those of Edgerton and his colleagues, Taylor and Bogdan (1984) demonstrated the utility of qualitative approaches to the study of individual lives in natural settings. While their visits with people have perhaps been less extensive than those of EdgertonÕs group, these researchers have given intensive focus to the lives of individuals, sometimes spending several days studying their life circumstances and the perceptions of those around them in an effort to illuminate their relationships and life circumstances (Bogdan & Taylor, 1989).
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These qualitative studies have raised interesting questions about the nature of quality of life as a construct and as a dimension of personal experience. Is it, for example, as Edgerton (1990, 1996) suggested, as much a function of temperament as of environment? How does it relate to morality, duty, social responsibility, and other aspects of ongoing social life (Taylor, 1994)? Does a sense of stability of general life satisfaction occur naturally with age and maturity (Edgerton, 1996)? Questions like these will continue to be important as research on quality of life continues; a variety of research methods will be useful in their exploration, and approaches that immerse investigators in the reality of ongoing lives will be essential to a meaningful understanding. C.
Discrepancy Analysis
However it is measured or conceptualized theoretically, a critical aspect of quality of life is the goodness of Þt between individual needs and personal satisfaction of those needs (Heal et al., 1996; Schalock & Jensen, 1986) or, to put it another way, the nature of the personÐenvironment Þt (Parmenter, 1992). Earlier writers (e.g., Land & Spilerman, 1975; Liu, 1976; Milbrath, 1979) suggested the potential utility of quality-of-life measures in identifying unmet needs among various populations, with the implication that resource allocation might be inßuenced by such data. The implicit assumption, of course, is that a better personÐenvironment Þt would indicate better quality of life (Schalock, Keith, Hoffman, & Karan, 1989). More recently, Heal et al. (1996) emphasized not only the goodness-of-Þt criterion in their discussion of a discrepancy model, but also the role of personal competence, choice, and control as key aspects of satisfaction and quality of life. Thus, while quality of life may be inßuenced by the personÐenvironment Þt, a key part of that Þt may be the ability of the environment to support the skills and personal control required for the individual to minimize discrepancies between needs and aspirations (Heal et al., 1996). This view is consistent with the Þndings of Wehmeyer and Schwartz (1998), who found quality-of-life scores positively correlated with self-determination scores among 50 adults living in community group homes. It is also consistent with the assertions of Felce (1996) and Parmenter (1992) that personal values and aspirations must be a part of the quality-of-life equation. At least one model (Murrell & Norris, 1983) has been proposed that would make quality of life the essential criterion for determining the personÐenvironment Þt. This perspective, if individual values and aspirations are truly honored, would seem to avoid the so-called Òtyranny of QOLÓ(Taylor, 1994) and might have signiÞcant implications for social policy (Dennis et al., 1993; Schalock et al., 1989). Qualityof-life policy, in this context, could aim to minimize the gap between individual perceptions of life conditions and desired conditions (Goode, 1997), and it should be reßected in a public philosophy that recognizes that quality of life for citizens with disabilities is linked to that of all a nationÕs citizens (Turnbull & Brunk, 1997).
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D.
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Direct Behavioral Measures
In addition to the various measures of quality of life that I have noted in the previous sections, some writers have used a number of approaches to behavioral observation as an indicator of quality of life. McGill, Emerson, and Mansell (1994), for example, reported changes in challenging behaviors as an indicator of improved quality of life for individuals moving from institutional to community settings. Rawlings (1985) also reported direct observations of a number of behaviors, including engagement in ÒappropriateÓactivity and social interactions, as correlates of such entities as personal freedom and autonomy in community homes. Generally similar Þndings were reported by Rapley and Hopwood (1997), who found signiÞcant correlations between quality of life measures and the Index of Participation in Domestic Life (Raynes, Sumpton, & Pettipher, 1989). In recognition of the importance of support services as contributors to lifestyles (Felce & Perry, 1996), Jones et al. (1997) investigated the effects of staff training in active support in community housing. Active support involves staff members in a planning process directed toward allocating their time and effort toward involving consumers with disabilities in meaningful activities and in being responsive to the activity preferences of individuals. Such activity is, of course, subject to systematic observation and has been shown to contribute to quality of life of people with significant developmental disabilities (Felce, 2000), as have other programmatic changes associated with improved adaptive behavior (Felce, Lowe, & de Paiva, 1994). Perhaps the greatest challenge facing researchers using behavioral measures as an indicator of quality of life will be to chart a course that demonstrates the distinctive contribution of such measures to an understanding of quality of life. This will be necessary in order to avoid the traps described by Wolfensberger (1994) in his criticism of uses of the term Òqualityof lifeÓthat are so generic and indiscriminate as to become meaningless.
E.
Critical Measurement Issues
This brief review of some of the key points of view taken by researchers attempting to measure quality of life provides a taste of the variety of approaches and the complexity of the resultant problems that exist in the Þeld. Raphael (1996) presented a cogent discussion of 11 ÒdebatesÓthat arise in the context of quality of life measurement: (1) sociological versus psychological perspectives; (2) positivist, idealist, and realist approaches; (3) naturalistic versus positivist methodologies; (4) quantitative versus qualitative methods; (5) values-based versus values-free approaches; (6) social policy versus basic research orientations; (7) system versus individual data collections; (8) objective versus subjective measurements; (9) selfreports versus reports by others; (10) traditional versus participatory approaches; and (11) critical (activist) approaches.
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The ways in which researchers articulate and use (or ignore) these issues will deÞne future work in quality of life. I have discussed some of them in the foregoing sections and comment brießy here on some others. While continuing to focus on the interests and the rights of individuals, quality of life work in developmental disabilities nevertheless seems to be increasingly sociological (i.e., group-oriented) and social policy-oriented. For example, one recent edited volume (Schalock, 1997b) contains major sections on organizational change, public policy, and culture. As Raphael (1996) noted, much quality-oflife work has been generally positivist in nature, focusing on relatively detached data-collection procedures; however, a number of recent examples in developmental disabilities suggest a movement toward naturalistic approaches, including personal narratives (e.g., Groulx, Dor« e, & Dor« e, 2000; Halle, 2000; Ward, 2000). Recent research tends to be value-based, often explicitly addressing such topics as ÒhealthpromotionÓ(Brown, Renwick, & Nagler, 1996), Òfacilitating relationshipsÓ (Snell & Vogtle, 1997), or ÒsocialintegrationÓ(Anderson, Lakin, Hill, & Chen, 1992); and researchers clearly intend that their work have implications for social policy (Goode, 1997; Turnbull & Brunk, 1997). There are important examples of interactive or participatory research (Edgerton & Gaston, 1991) and research with signiÞcant activist agendas (e.g., Antaki & Rapley, 1996). In short, research on measurement of quality of life in developmental disabilities is rich, diverse, and multifaceted, and we would do well, as Raphael (1996) suggested, to examine it carefully within the framework he proposed. F.
Measurement Outcomes: Typical Findings
The evolution of progressive service ideologies over the past quarter-century or more began with the aim of improving the life conditions of people with developmental disabilities (Menolascino, 1977), and Edgerton (1996) seems to have been right in asserting that most individuals with mental retardation, when given opportunity to live in the community, have managed with reasonable success. But it is also true that people continue to live and work in a variety of settings, that those people are possessed of differing personal and intellectual characteristics, and that the aims of community integration and personal satisfaction are not always achieved. Some individuals living in the community are lonely and Òlive on the fringes of societyÓ(Donegan & Potts, 1988, p. 21) and many people continue to reside in congregate, segregated facilities (Anderson, Prouty, & Lakin, 1999). It is natural for individuals, their advocates, and researchers to raise questions about quality of life in these various circumstances. 1. PEOPLE WITH DISABILITIES Measured quality of life has been shown to correlate with a wide range of personal characteristics, life conditions, and perceptions and attitudes of signiÞcant
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others (Schalock, 1994), though not with age (in the range of 15Ð55years) or sex (Schalock & Keith, 1993), for people with developmental disabilities. Analysis of data from nearly 800 individuals (Keith, Schalock, & Hoffman, 1986) indicated an inverse relationship between quality-of-life scores and individual need levels (the greater oneÕs level of need, the lower the measured quality of life). In a separate sample of 312 people, IQ was signiÞcantly correlated with quality-oflife scores (Schalock & Keith, 1993), although the effect in this study was more pronounced for an Empowerment/Independence scale than for other quality-of-life scales (Satisfaction, Competence, and Social Belonging). However, in groups of 455 (Keith, Schalock, & Hoffman, 1986) and 552 (Schalock, Keith, & Hoffman, 1990) individuals, quality-of-life differences were found among those served in different residential and employment models, even within need-level groups; the general pattern indicated higher quality-of-life scores as the service models more nearly approximated ÒnormalÓliving and working environments. Similar trends were found by Heal and Chadsey-Rusch (1985) for measures of life satisfaction of apartment dwellers and residents of a 58-person intermediate care facility; by Harner and Heal (1993) in a study of 149 people with mental (2000) for retardation living in six different types of residence; and by Otrebski ֒ 57 Polish people living in community and institutional settings. Generally similar quality-of-life patterns are found for people with mental illness, where symptom severity and program restrictiveness have been shown to be related to quality of life (Greenley, Greenberg, & Brown, 1997). 3. COMPARISONS WITH PEOPLE WITHOUT DISABILITIES The importance of connecting quality of life of people with developmental disabilities to that of other citizens has been noted by numerous writers (e.g., Cummins, McCabe, Romeo, Reid, & Waters, 1997; Keith, 1990; Kozleski & Sands, 1992; Williams & Schoultz, 1982). However, most of the data collected to date suggest that many people with disabilities do not enjoy the same quality of life as others living in the same communities. Kixmiller, Keith, and Schalock (1991) analyzed responses of 44 people with mental retardation and 57 of their neighbors, living in community settings in two towns, to three questions: How do you like this town? How do your neighbors treat you? and How often do you talk to your neighbors? Although there was no signiÞcant difference in the responses to the question asking how they liked their towns, the individuals with disabilities reported signiÞcantly less interaction with neighbors and less favorable treatment by their neighbors. In a community study of 86 people with disabilities and 131 without disabilities, Sands and Kozleski (1994) found that those with disabilities reported generally good life satisfaction, but were less likely to enjoy a number of other key quality of life indicators (e.g., independence; community, recreation, and leisure activity; and self-determination). The latter Þndings are consistent with earlier work by Kishi, Teelucksingh, Zollers, Park-Lee, and Meyer (1988), who
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found that adults with mental retardation receiving community-based services had signiÞcantly fewer opportunities to make a variety of important personal decisions, and by Wehmeyer and Schwartz (1998), who reported a signiÞcant relationship between measures of self-determination and quality of life. Recently, in a large statewide study, Keith and Ferdinand (2000) compared quality-of-life data collected from 2699 people with mental retardation residing in 37 Nebraska communities and 442 without mental retardation in the same towns. Data were collected on nine quality-of-life dimensions (satisfaction, productivity/competence, empowerment/independence, social belonging, rights, relationships, economic security, growth/development, and overall perception of well-being), and for all dimensions the statewide averages for citizens with developmental disabilities were signiÞcantly lower than those of people without disabilities. Exceptions to this pattern were most likely to occur in the productivity/competence and growth/development dimensions, for which 11 of the communities showed nonsigniÞcant differences between the groups with and without disabilities. The largest discrepancies were found on the dimensions of rights and empowerment/independence, and the differences on these dimensions were statistically signiÞcant for all of the cities and towns studied. The scores for overall perception of well-being were signiÞcantly higher for citizens without disabilities in all the towns but 1. The Þndings of these studies suggest, on the one hand, that some gains have been made: The quality of life gap has narrowed for some dimensions, and in the occasional community overall perceptions of well-being are similar for individuals with and without disabilities. However, most reported measures continue to show signiÞcant differences between these groups, especially in two areasÑrights and empowermentÑthat are of particular concern to people with disabilities and their advocates (Bach & Rioux, 1996; Ward & Keith, 1996).
IV.
APPLYING THE QUALITY OF LIFE CONCEPT
Landesman (1986), in her landmark editorial, set the stage for application of the quality of life concept in services for individuals with developmental disabilities. Once quality of life was deÞned, she argued, Òserviceproviders and families will be better able to pursue innovative programs to achieve these outcomes; social scientists can focus on developing strategies to measure speciÞc, sensitive outcomes; and administrators and policymakers can adopt more reasonable and effective means for monitoring their programs on a regular basisÓ(p. 142). Thus, the potential utility of quality-of-life measures for program evaluation was recognized, and in the same year Keith, Schalock, and Hoffman (1986) reported quality-of-life data for individuals receiving services in a number of different service delivery models. Soon thereafter, Schalock (1990b) articulated a set of value-based service delivery
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principles that might be implied by the quality-of-life agenda. These principles were as follows: 1. Quality of life is enhanced by satisfying basic needs and fulÞlling responsibilities in regular life settings. 2. Quality of life is enhanced by empowering persons with disabilities and their families to participate in decisions that affect their lives. 3. Quality of life for any given individual is intrinsically related to the quality of life of persons in his or her environment. 4. Quality of life is enhanced by the acceptance and full integration of persons with disabilities and their families into their local communities. 5. Quality of life has both objective and subjective components, but it is primarily the subjective view of the individual that determines the quality of life he or she experiences. 6. Quality of life variables should occupy a prominent role in overall program evaluation (p. 239). It may be seen that program evaluation was envisioned early on as an important application for quality-of-life research in developmental disabilities and that the guiding principles in the Þeld, perhaps unlike those in some other qualityof-life research arenas (cf. Raphael, 1996), were value-driven from the beginning. The possibilities for program evaluation were noted in work on community integration (Keith, 1990), rehabilitation (Fabian, 1991; Roessler, 1990), work life (Parent, 1992), residential services (Bellamy, Newton, LeBaron, & Horner, 1990), aging (Brown, 1989), and transition from secondary education to adult life (Halpern, 1993). At least two American states, Maryland (Bonham et al., 1998) and Nebraska (The ARC of Nebraska, 1998), have used quality-of-life measures in efforts to judge effectiveness of statewide community service systemsÑe xamples of applications that Schalock (1994) has called impact studies (evaluation of the impact of services on quality of life). Beyond speciÞc applications in program evaluation, a number of writers have set forth agendas for use of the quality-of-life concept in determination of public policy. Turnbull and Brunk (1997) presented a view that advocates public policies consistent with, and dedicated to enhancement of, quality of life. Turnbull and Brunk described the relationship between quality of life of citizens with disabilities and those without and concluded by arguing that the means to develop and enhance that relationship Ò. . .is both a public policy issue and the central issue in the lives of those affected by disabilityÓ(p. 208). Goode (1997) expanded the discussion of public policy into the international arena, illustrating the relationship of quality-of-life issues to policies in Europe and within the United Nations. In 1993, the United Nations General Assembly adopted the Standard Rules on the Equalization of Opportunities for Disabled Persons, seeking to provide guidelines
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for governmental efforts to further opportunities for equal participation of persons with disabilities in all aspects of society. These 22 Rules represent potentially practical tools to improve quality of life and well-being of individuals with disabilities in such areas as education, employment, medical care, economics, religion, and policy making. More recently, the World Health Organization (1997) has supported development of efforts to assess quality of life internationally. The policy implications of cautions issued by such writers as Edgerton (1990), Taylor (1984), and Hatton (1998)Ñthat measurement may trivialize quality of life, that the importance of individual subjective experience must be recognized, and that imposition of a quality of life model might unduly control peopleÕs livesÑ must be taken seriously. If, however, policy formulations are based on principles deriving from equity, home, community, and personal empowerment, quality of life is likely to continue to be a signiÞcant factor in evolution of social policy. It seems important, for example, for decision makers to be aware that, across several cultures, measured quality of life has been shown to increase as individuals live and work in more culturally typical environments (Keith, Schalock, & Hoffman, 1986; Otrebski, 2000; Schalock, Bartnik, Wu, Konig, Lee, & Reiter, 1990; Verdugo, ֒ Canal, & Bermejo, 1997); that in poor countries expensive programs may not be necessary if low-cost approaches to social inclusion can improve quality of life by taking sensible advantage of the resources of family, friends, and neighborhood (McConkey & OÕToole, 2000); and that efforts have been made to connect quality of life of people with disabilities to that of other citizens (Kozleski & Sands, 1992; Sands & Kozleski, 1994).
V.
CONCLUSION
Research on quality of life of people with developmental disabilities has proliferated, perhaps more than anyone would have imagined, during the past decade. It was indeed, as several observers predicted at the beginning of the decade, a central issue for the 1990s. It was an issue at once full of promise and fraught with fear. Its potential for misuse in a variety of situations, some of them life-or-death circumstances, made some observers skeptical: Quality of life, after all, has been used at times to justify denial of access to important services, including medical care. To date, researchers studying quality of life of people with disabilities seem to have avoided the worst of these pitfalls and in fact have explicitly embedded their work in a backdrop of values and concern for personal aspirations of individuals. There remain, however, other legitimate concerns about the direction of work in this area. Just as previous concepts (e.g., normalization), in the hands of enthusiastic proponents, ran the risk of becoming templates or programmatic prescriptions at the expense of individual freedom or aspirations, so too could the construct of
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quality of life. This concern is of particular importance in the context of continued controversy over the measurement of quality of life. Reasonable consensus seems to have been achieved on the general dimensions of quality of life, but its multifaceted nature has made agreement on measurement difÞcult to attain. Some of this disagreement has stemmed from technical measurement problems (interview techniques, concerns about acquiescence, validity of various scales versus observation, etc.), and some has arisen from more fundamental questions about the nature of quality of life (as a product of environment or of personal temperament) and whether it can or should be measured at all. I take these differences and concerns to be a good sign. They are likely to produce enough variety of investigation and practice to prompt evolution of new and improved perspectives, and they arise from programs of research that are likely to produce sufÞcient data to allow for a self-corrective function as the work continues. Quality of life research is here to stay, at least for the foreseeable future, and it may prove especially crucial in developing countries and in those in political crisis, where quality of life of individuals with disabilities will be inexorably linked to broader quality of life issues. It is likely also to be tied increasingly to the selfadvocacy/empowerment movement and to a widening concern for mainstream cultural quality of life. These issues present sufÞcient challenges to take the qualityof-life research agenda well into the new millennium. ACKNOWLEDGMENTS I am grateful to Robert A. Cummins, Laraine M. Glidden, and Rebecca Renwick for their helpful comments on an earlier version of this chapter; and to Robert L. Schalock for 30 years of collaboration, collegial support, and friendship, without which my own work on quality of life would not have been possible.
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Bach, M., & Rioux, M. H. (1996). Social well-being: A framework for quality of life research. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 63Ð74).Thousand Oaks, CA: Sage. Bellamy, G. T., Newton, J. S., LeBaron, N. M., & Horner, R. H. (1990). Quality of life and lifestyle outcomes: A challenge for residential programs. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 127Ð137).Washington, DC: American Association on Mental Retardation. Blumer, H., (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: PrenticeHall. Bonham, G. S., Pisa, L. M., Marchand, C. B., Harris, C., White, D., & Schalock, R. L. (1998). Ask Me! The quality of life of Marylanders with developmental disabilities receiving DDA funded supports. Annapolis, MD: The ARC of Maryland. Borthwick-Duffy, S. A. (1990). Quality of life of persons with severe or profound mental retardation. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 177Ð189).Washington, DC: American Association on Mental Retardation. Brislin, R. (1993). Understanding cultureÕs inßuence on behavior. Fort Worth, TX: Harcourt Brace Jovanovich. Brown, I., Renwick, R., & Nagler, M. (1996). The centrality of quality of life in health promotion and rehabilitation. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 3Ð13).Thousand Oaks, CA: Sage. Brown, R. I. (1989). Aging, disability and quality of life: A challenge for society. Canadian Psychology, 30, 551Ð559. Brown, R. I. (2000). Quality of life: Challenges and confrontation. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 347Ð362).Washington, DC: American Association on Mental Retardation. Brown, R. I., Bayer, M., & McFarlane, C. (1989). Rehabilitation programmes: Performance and quality of life of adults with developmental handicaps. Toronto: Lugus Productions. Brown, R. I., Brown, P. M., & Bayer, M. B. (1994). A quality of life model: New challenges arising from a six year study. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline. Campbell, A., Converse, P., & Rodgers, W. L. (1976). The quality of American life: Peceptions, evaluations, and satisfactions. New York: Russel Sage Foundation. Campo, S. F., Sharpton, W. R., Thompson, B., & Sexton, D. (1996). Measurement characteristics of the Quality of Life Index when used with adults with severe/profound disabilities. American Journal on Mental Retardation, 100, 546Ð550. Carbonell, E. (Ed.). (1999). El constructe de qualitat de vida. [The quality of life construct]. Barcelona, Spain: Coordinara de Tallers per a Minusv`alids Ps«õquicsde Catalunya. Cheng, S. (1988). Subjective quality of life in the planning and evaluation of programs. Evaluation and Program Planning, 11, 123Ð134. Cummins, R. A. (1991). The Comprehensive Quality of Life ScaleÑIntellectual Disability: An instrument under development. Australia and New Zealand Journal of Developmental Disabilities, 17, 259Ð264. Cummins, R. A. (1992). Comprehensive Quality of Life ScaleÑIntellectual Disability (3rd ed.). Melbourne, Australia: Deakin Univ. Press. Cummins, R. A. (1993). Comprehensive Quality of Life ScaleÑIntellectual Disability (4th ed.). Melbourne, Australia: Deakin Univ. Press. Cummins, R. A. (1995). Assessing quality of life. In R. I. Brown (Ed.), Quality of life for handicapped people (pp. 102Ð120).London: Chapman & Hall. Cummins, R. A. (1997). Comprehensive Quality of Life ScaleÑIntellectual Disability (5th ed.). Melbourne, Australia: Deakin Univ. Press.
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Cummins, R. A. (1999, May). A new model of quality of life. Paper presented at the annual convention of the American Association on Mental Retardation. New Orleans, LA. Cummins, R. A., McCabe, M. P., Romeo, Y., Reid, Shelley, & Waters, L. (1997). An initial evaluation of the Comprehensive Quality of Life Scale-Intellectual Disability. International Journal of Disability, Development and Education, 44, 7Ð19. Dennis, R. E., Williams, W., Giangreco, M. F., & Cloninger, C. J. (1993). Quality of life as context for planning and evaluation of services for people with disabilities. Exceptional Children, 59, 499Ð512. Diener, E., & Suh, E. M. (1999). National differences in subjective well-being. In D. Kahneman, E. Diener, & N. Schwarz (Eds.), Well-being: The foundations of hedonic psychology (pp. 434Ð 450). New York: Russell Sage Foundation. Diener, E., Suh, E. M., Lucas, R. E., & Smith, H. L. (1999). Subjective well-being: Three decades of progress. Psychological Bulletin, 125, 276Ð302. Donegan, C., & Potts, M. (1988). People with mental handicap living alone in the community. The British Journal of Mental Subnormality, 35, 10Ð21. Edgerton, R. B. (1990). Quality of life from a longitudinal research perspective. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 149Ð160).Washington, DC: American Association on Mental Retardation. Edgerton, R. B. (1991a). Conclusion. In R. B. Edgerton & M. A. Gaston (Eds.), ÒIÕ ve seen it all!Ó(pp. 268Ð273).Baltimore, MD: Paul H. Brookes. Edgerton, R. B. (1991b). Preface. In R. B. Edgerton & M. A. Gaston (Eds.), ÒIÕ ve seen it all!Ó (pp. viiÐx).Baltimore, MD: Paul H. Brookes. Edgerton, R. B. (1996). A longitudinal-ethnographic research perspective on quality of life. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 83Ð 90). Washington, DC: American Association on Mental Retardation. Edgerton, R. B., & Gaston, M. A. (Eds.). (1991). ÒIÕ ve seen it allÓBaltimore, MD: Paul H. Brookes. Evans, D. R., Burns, J. E., Robinson, W. E., & Garrett, O. J. (1985). The Quality of Life Questionnaire: A multi-dimensional measure. American Journal of Community Psychology, 13, 305Ð322. Fabian, E. S. (1991). Using quality-of-life indicators in rehabilitation program evaluation. Rehabilitation Counseling Bulletin, 34, 344Ð356. Feather, N. T. (1994). Values and culture. In W. J. Lonner & R. Malpass (Eds.), Psychology and culture (pp. 183Ð189).Boston: Allyn & Bacon. Felce, D. (1996, July). DeÞning and applying the concept of quality of life. Paper presented at the World Congress of the International Association for ScientiÞc Study of Intellectual Disabilities, Helsinki, Finland. Felce, D. (2000). Engagement in activity as an indicator of quality of life in British research. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 173Ð190). Washington, DC: American Association on Mental Retardation. Felce, D., Lowe, K., & de Paiva, S. (1994). Ordinary housing for people with severe learning disabilities and challenging behaviours. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviours (pp. 97Ð118).London: Chapman & Hall. Felce, D., & Perry, J. (1995). Quality of life: its deÞnition and measurement. Research in Developmental Disabilities, 16, 51Ð74. Felce, D., & Perry, J. (1996). Exploring current conceptions of quality of life. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 51Ð62).Thousand Oaks, CA: Sage. Flanagan, J. C. (1978). A research approach to improving our quality of life. American Psychologist, 33, 138Ð147. Flanagan, J. C. (1982). Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation, 63, 56Ð59.
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Goode, D. (1997). Quality of life as international disability policy: Implications for international research. In R. L. Schalock (Ed.), Quality of life. Volume II. Application to persons with disabilities (pp. 211Ð221).Washington, DC: American Association on Mental Retardation. Goode, D. (Ed.). (1994). Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline. Goode, D., & Hogg, J. (1994a). Towards an understanding of holistic quality of life in people with profound intellectual and multiple disabilities. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 197Ð207).Cambridge, MA: Brookline. Greenley, J. R., Greenberg, J. S., & Brown, R. (1997). Measuring quality of life: A new and practical survey instrument. Social Work, 42, 244Ð254. Gross, R. H., Cox, A., Tatyrek, R., Pollay, M., & Barnes, W. A. (1983). Early management and decision-making for the treatment of myelomeningocele. Pediatrics, 72, 450Ð458. Groulx, R., Dor« e, R., & Dor« e, L. (2000). My quality of life as I see it. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 23Ð28). Washington, DC: American Association on Mental Retardation. Halle, S. (2000). Quality of life: A personal perspective from Finland. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 29Ð32). Washington, DC: American Association on Mental Retardation. Halpern, A. S. (1993). Quality of life as a conceptual framework for evaluating transition outcomes. Exceptional Children, 59, 486Ð498. Halpern, A. S., Nave, G., Close, D. W., & Nelson, D. J. (1986). An empirical analysis of the dimensions of community adjustment for adults with mental retardation. Australia and New Zealand Journal of Developmental Disabilities, 12, 147Ð157. Harner, C. J., & Heal, L. W. (1993). The Multifaceted Lifestyle Satisfaction Scale (MLSS): Psychometric properties of an interview schedule for assessing personal satisfaction of adults with limited intelligence. Research in Developmental Disabilities, 14, 221Ð236. Hatton, C. (1998). Whose quality of life is it anyway? Some problems with the emerging quality of life consensus. Mental Retardation, 36, 104Ð115. Hawkins, B. A., Kim, K., & Eklund, S. J. (1995). Validity and reliability of a Þve dimensional life satisfaction index. Mental Retardation, 33, 295Ð303. Heal, L. W. (1996). [Review of the book Quality of life for persons with disabilities: International perspectives and issues]. American Journal on Mental Retardation, 100, 557Ð560. Heal, L. W., Borthwick-Duffy, S. A., & Saunders, R. R. (1996). Assessment of quality of life. In J. W. Jacobson & J. A. Mulick (Eds.), Manual of diagnosis and professional practices in mental retardation (pp. 199Ð209).Washington, DC: American Psychological Association. Heal, L. W., & Chadsey-Rusch, J. (1985). The Lifestyle Satisfaction Scale (LSS): Assessing individualsÕ satisfaction with residence, community setting, and associated services. Applied Research in Mental Retardation, 6, 475Ð490. Heal, L. W., Rubin, S. S., & Park, W. (1995). Lifestyle Satisfaction Scale. Champaign-Urbana, IL: Transition Research Institute, Univ. of Illinois. Heal, L. W., Schalock, R. L., & Keith, K. D. (1992, July). Cross-cultural attributions of meaning to quality of life concepts made by mental retardation professionals. Paper presented at the World Congress of the Internatonal Association for the ScientiÞc Study of Mental DeÞciency. Brisbane, Australia. Heal, L. W., & Sigelman, C. K. (1990). Methodological issues in measuring the quality of life of individuals with mental retardation. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 161Ð176).Washington, DC: American Association on Mental Retardation. Hughes, C., Hwang, B., Kim, J., Eisenman, L. T., & Killian, D. J. (1995). Quality of life in applied research: A review and analysis of empirical measures. American Journal on Mental Retardation, 99, 623Ð641.
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Jones, E., Perry, J., Lowe, K., Felce, D., Toogood, S., Dunstan, F., Allen, D., & Pagler, J. (1997). Opportunity and the promotion of activity among adults with severe learning disabilities living in community housing: The impact of training staff in active support. Cardiff: Univ. of Wales College of Medicine. Keith, K. D. (1990). Quality of life: Issues in community integration. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 93Ð100).Washington, DC: American Association on Mental Retardation. Keith, K. D. (1996). Measuring quality of life across cultures: Issues and challenges. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 73Ð82).Washington, DC: American Association on Mental Retardation. Keith, K. D., & Ferdinand, L. R. (2000). Project to compare quality of life of Nebraskans with developmental disabilities and citizens without disabilities. Lincoln: GovernorÕs Planning Council on Developmental Disabilities. Keith, K. D., Heal, L. W., & Schalock, R. L. (1996). Cross-cultural measurement of critical quality of life concepts. Journal of Intellectual and Developmental Disability, 21, 273Ð293. Keith, K. D., & Schalock, R. L. (1995). Quality of Student Life Questionnaire. Worthington, OH: IDS. Keith, K. D., & Schalock, R. L. (2000). Cross-cultural perspectives on quality of life: Trends and themes. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 363Ð380).Washington, DC: American Association on Mental Retardation. Keith, K. D., Schalock, R. L., & Hoffman, K. (1986). Quality of life: Measurement and programmatic implications. Lincoln, NE: Region V Mental Retardation Services. Keith, K. D., Yamamoto, M., Okita, N., & Schalock, R. L. (1995). Cross-cultural quality of life: Japanese and American college students. Social Behavior and Personality, 23, 163Ð170. Kishi, G., Teelucksingh, B., Zollers, N., Park-Lee, S., & Meyer, L. (1988). Daily decision-making in community residences: A social comparison of adults with and without mental retardation. American Journal on Mental Retardation, 92, 430Ð435. Kixmiller, J. S., Keith, K. D., & Schalock, R. L. (1991). Views on town and neighborhood: Adults with mental retardation and their neighbors. Nebraska Journal of Psychology, 1, 18Ð22. Koide, S., Ozaki, Y., Katsura, K., Saito, K., Suzuki, T., Tachi, A., Nakatsubo, K., Nagoya, T., Honma, H., & Miyatake, H. (1996). Report on employment and life of the mentally retarded. Tokyo: The NHK Health, Welfare, and Cultural Foundation. Kozleski, E. B., & Sands, D. J. (1992). The yardstick of social validity: Evaluating quality of life as perceived by adults without disabilities. Education and Training in Mental Retardation, 27(2), 119Ð131. Land, K., & Spilerman, S. (Eds.). (1975). Social indicator models. New York: Russell Sage Foundation. Landesman, S. (1986). Quality of life and personal life satisfaction: DeÞnition and measurement issues. Mental Retardation, 24, 141Ð143. Liu, B. C. (1976). Quality of life indicators in U.S. metropolitan areas: A statistical analysis. New York: Praeger. Luckasson, R. (1990). A lawyerÕs perspective on quality of life: In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 211Ð214).Washington, DC: American Association on Mental Retardation. Luckasson, R. (1997). Foreward. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. viiÐx).Washington, DC: American Association on Mental Retardation. Markus, H., & Kitayama, S. (1991). Culture and the self: Implications for cognition, emotion, and motivation. Psychological Review, 98, 224Ð253. McConkey, R., & OÕToole, B. (2000). Improving the quality of life of people with disabilities in
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least afßuent countries: Insights from Guyana, South America. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 281Ð290).Washington, DC: American Association on Mental Retardation. McGill, P., Emerson, E., & Mansell, J. (1994). Individually designed residential provision for people with seriously challenging behaviours. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviours (pp. 119Ð156).London: Chapman & Hall. Menolascino, F. J. (1977). Challenges in mental retardation: Progressive ideology and services. New York: Human Sciences Press. Milbrath, L. W. (1979). Policy relevant quality of life research. Annals of the American Academy of Political and Social Science, 444, 33Ð45. Myers, D. G. (1992). The pursuit of happiness: Who is happy and why. New York: William Morrow. Myers, D. G. (2000). The funds, friends, and faith of happy people. American Psychologist, 55, 56Ð67. Osgood, C. E., May, W. H., & Miron, M. S. (1975). Cross cultural universals of affective meaning. Urbana: Univ. of Illinois Press. Otrebski, W. (2000). Quality of life of people with mental retardation living in two different environ֒ ments in Poland. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 83Ð92).Washington, DC: American Association on Mental Retardation. Ouellette-Kuntz, H. (1990). A pilot study in the use of the Quality of Life Interview Schedule. Social Indicators Research, 23, 283Ð298. Ouellette-Kuntz, H., & McCreary, B. (1996). Quality of life assessment for persons with severe developmental disabilities. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation (pp. 268Ð278).Thousand Oaks, CA: Sage. Parent, W. (1992). Quality of life and consumer choice. In P. Wehman (Ed.), ADA mandate for social change (pp. 19Ð41).New York: Academic Press. Parmenter, T. R. (1992). Quality of life of people with developmental disabilities. International Review of Research in Mental Retardation, 18, 247Ð287. Parmenter, T. R. (1996). The use of quality of life as a construct for social and health policy development. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 89Ð103).Thousand Oaks, CA: Sage. Patrick, D. L., & Erickson, P. (1993). Assessing health-related quality of life for clinical decisionmaking. In S. R. Walker & R. M. Rosser (Eds.), Quality of life assessment: Key issues in the 1990Õs (pp. 11Ð63).London: Kluwer. Perry, J., & Felce, D. (1995). Objective assessments of quality of life: How much do they agree with each other? Journal of Community & Applied Social Psychology, 5, 1Ð19. Raphael, D. (1996). DeÞning quality of life: Eleven debates concerning its measurement. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 146Ð165).Thousand Oaks, CA: Sage. Rapley, M. (2000). The social construction of Òqualityof lifeÓ:The interpersonal production of wellbeing revisited. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 155Ð172).Washington, DC: American Association on Mental Retardation. Rapley, M., & Hopgood, L. (1997). Quality of life in a community-based service in rural Australia. Journal of Intellectual & Developmental Disability, 22, 125Ð141. Rapley, M., & Lobley, J. (1995). Factor analysis of the Schalock & Keith (1993) Quality of Life Questionnaire: A replication. Mental Handicap Research, 8, 194Ð202. Rawlings, S. (1985). Behaviour and skills of severely retarded adults in hospitals and small residential homes. British Journal of Psychiatry, 146, 358Ð366. Raynes, N. V., Sumpton, R. C., & Pettipher, C. (1989). The index of community involvement. Manchester, UK: The University Department of Social Policy and Social Work. Renwick, R., & Brown, I. (1996). The Centre for Health PromotionÕs conceptual approach to quality
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of life: Being, belonging, and becoming. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation: Conceptual approaches, issues, and applications (pp. 75Ð86).Thousand Oaks, CA: Sage. Renwick, R., Brown, I., & Raphael, D. (2000). Person-centered quality of life: Contributions from Canada to an international understanding. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life. Washington, DC: American Association on Mental Retardation. Roessler, R. T. (1990). A quality of life perspective on rehabilitation counseling. Rehabilitation Counseling Bulletin, 34, 82Ð90. Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. American Psychologist, 55, 68Ð78. Sands, D. J., & Kozleski, E. B. (1994). Quality of life differences between adults with and without disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 29, 90Ð101. Schalock, R. L. (1990a). Preface. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. ixÐxii).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1990b). Where do we go from here? In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 235Ð240).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1994). The concept of quality of life and its current applications in the Þeld of mental retardation/developmental disabilities. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 266Ð284). Cambridge, MA: Brookline. Schalock, R. L. (1996). Reconsidering the conceptualization and measurement of quality of life. In R. L. Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 123Ð 139). Washington, DC: American Association on Mental Retardation. Schalock, R. L. (1997a). Can the concept of quality of life make a difference? In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 245Ð267).Washington, DC: American Association on Mental Retardation. Schalock, R. L. (Ed.). (1997b). Quality of life: Volume II. Application to persons with disabilities. Washington, DC: American Association on Mental Retardation. Schalock, R. L., Bartnik, E., Wu, F., Konig, A., Lee, C. S., & Reiter, S. (1990, May). An international perspective in quality of life: Measurement and use. Presented at the annual meeting of the American Association on Mental Retardation, Atlanta, GA. Schalock, R. L., & Jensen, C. M. (1986). Assessing the goodness-of-Þt between persons and their environments. Journal of the Association for the Severely Handicapped, 11, 103Ð109. Schalock, R. L., & Keith, K. D. (1993). Quality of life questionnaire. Worthington, OH: IDS. Schalock, R. L., Keith, K. D., & Hoffman, K. (1990). 1990 Quality of Life Questionnaire standardization manual. Hastings, NE: Mid-Nebraska Mental Retardation Services, Inc. Schalock, R. L., Keith, K. D., Hoffman, K., & Karan, O. C. (1989). Quality of life: Its measurement and use. Mental Retardation, 27, 25Ð31. Snell, M. E., & Vogtle, L. K. (1997). Facilitating relationships of children with mental retardation in schools. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 43Ð61).Washington, DC: American Association on Mental Retardation. Stancliffe, R. J. (1995). Assessing opportunities for choice-making: A comparison of self- and staff reports. American Journal on Mental Retardation, 99, 418Ð429. Taylor, S. J. (1994). In support of research on quality of life, but against QOL. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 260Ð265). Cambridge, MA: Brookline. Taylor, S. J., & Bogdan, R. (1984). Introduction to qualitative research methods (2nd ed.). New York: Wiley. Taylor, S. J., & Bogdan, R. (1996). Quality of life and the individualÕs perspective. In R. L.
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Schalock (Ed.), Quality of life: Volume I. Conceptualization and measurement (pp. 11Ð22). Washington, DC: American Association on Mental Retardation. Thorndike, E. L. (1939). Your city. New York: Harcourt Brace. Turnbull, H. R., III, & Brunk, G. L. (1997). Quality of life and public policy. In R. L. Schalock (Ed.), Quality of life: Volume II. Application to persons with disabilities (pp. 201Ð209).Washington, DC: American Association on Mental Retardation. Verdugo, M. A., Canal, R., & Bermejo, B. G. (1997, May). Enhancing residential services for persons with mental retardation and extensive support needs. Paper presented at the meeting of the American Association on Mental Retardation, New York, NY. Ward, N. (2000). The universal power of speaking for oneself. In K. D. Keith & R. L. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 33Ð36).Washington, DC: American Association on Mental Retardation. Ward, N. A., & Keith, K. D. (1996). Self-advocacy: Foundation for quality of life. In R. L. Schalock (Eds.), Quality of life: Volume I. Conceptualization and measurement (pp. 5Ð10).Washington, DC: American Association on Mental Retardation. Wehmeyer, M., & Schwartz, M. (1998). The relationship between self-determination and quality of life for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities, 33, 3Ð12. Williams, P., & Shoultz, B. (1982). We can speak for ourselves: Self-advocacy by mentally handicapped people. London: Souvenir Press. Wolfensberger, W. (1994). LetÕs hang up Òquality of lifeÓ as a hopeless term. In D. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 285Ð321). Cambridge, MA: Brookline. World Health Organization (1997). Measuring quality of life: The World Health Organization quality of life instruments. Geneva, Switzerland: Author.
Measuring Quality of Life and Quality of Services through Personal Outcome Measures: Implications for Public Policy JAMES GARDNER THE COUNCIL ON QUALITY AND LEADERSHIP TOWSON, MARYLAND
DEBORAH T. CARRAN JOHNS HOPKINS UNIVERSITY BALTIMORE, MARYLAND
SYLVIA NUDLER THE COUNCIL ON QUALITY AND LEADERSHIP TOWSON, MARYLAND
I.
INTRODUCTION AND HISTORY OF THE COUNCIL
The Council on Quality and Leadership in Supports for People with Disabilities (The Council) developed from the efforts of the American Association on Mental DeÞciency (AAMD) in publishing the Standards for State Residential Institutions for the Mentally Retarded in 1964. In 1966, AAMD, the National Association for Retarded Citizens (ARC), the Council for Exceptional Children (CEC), and United Cerebral Palsy Associations, Inc. (UCPA) formed the National Planning Committee on Accreditation of Residential Centers for the Retarded. In 1969, The Joint Commission on Accreditation of Hospitals (JCAH) invited the National Planning Committee to develop an accreditation council within the administrative structure of JCAH.
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As one of the Councils of JCAH during the 1970s, the Accreditation Council for Facilities for the Mentally Retarded (ACFMR) developed accreditation standards and performed accreditation reviews of facilities providing services to people with mental retardation. In 1979, ACFMR reorganized as an independent nonproÞt organization, The Accreditation Council on Services for Mentally Retarded and other Developmentally Disabled Persons (ACMRDD). During the decades of the 1970s and 1980s The Council played a national leadership role in the design and dissemination of accreditation standards. The Council developed its standards by forging a consensus in meetings with professionals, representatives from federal and state governments, service providers, and families of people with disabilities. Organizations became accredited by demonstrating that their practices were not inconsistent with the organizational requirements set forth in the standards. The Council measured quality in services by the extent of compliance with the prescribed organizational process requirements. The Council led the nation in the development of standards in legal rights, behavior intervention, habilitation planning, and interdisciplinary team process. Many of The CouncilÕs standards have been enacted into federal and state legislation including the Health Care Financing Administration (HCFA) regulations and standards for the Intermediate Care Facility/Mentally Retarded (ICF/MR) Program. In the early 1990s, however, The Council on Quality and Leadership in Supports for People with Disabilities (The Council) began to develop an alternative quality performance measurement system. Successive editions of the standards (1984, 1987, 1990) stressed professional deÞnitions of practice rather than the beneÞts or impact of the service on service recipients themselves. In addition, there was no science connecting the prescribed organizational processes with the diverse variables that inßuence quality of life and quality of services for people with disabilities. Many organizations achieved accreditation status by maintaining the proper audit trails, the right documentation, and the designated policies and procedures.
II.
TOWARD A “PERSON-BY-PERSON” APPROACH
In 1991 the Board of Directors of The Council adopted four criteria to guide the design and development of a new set of generic quality measures. The new measures had to be outcome based, concise, applicable to people with different disabilities, and applicable to a wide range of services and supports in different environments. With grant funding from the Illinois Department of Mental Health and Developmental Disabilities and the Illinois Planning Council on Developmental Disabilities, The Council in 1992 conducted individual and focus group interviews with people with a wide range of disabilities to identify the outcomes
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they expected from services and supports. The responses were incorporated in a Preliminary Outcome Based Performance Measures manual (The Accreditation Council, 1992) and pilot tested at four sites in Illinois and Maryland. During 1992 and 1993, The Council continued to reÞne the 30 outcome measures. A Field Edition of the Outcome Based Performance Measures (The Council, 1992) was compiled and used as the Þrst instrument to conduct 10 Þeld tests in the United States and Canada. This resulted in the Þrst edition of the Outcome Based Performance Measures (The Council, 1993). The Council then began to use the Outcome Based Performance Measures as the criteria for measuring quality in conducting international accreditation, service, and education and training conferences. With the support from the HCFA, an initial database was constructed from 447 individuals interviewed during accreditation reviews with the Outcome Based Performance Measures. These interviews were conducted at 54 organizations in 16 states throughout the United States and included individuals with a range of developmental disabilities (The Council, 1995). Based upon the factor analysis (Gardner, Nudler, & Chapman, 1997), the Outcome Based Performance Measures were revised as the Personal Outcome Measures (The Council, 1997) containing 25 outcome items under seven domains. QualiÞcation and methodology for applying the Personal Outcome Measures has been widely discussed (The Council 1993, 1997; Gardner, Nudler, & Chapman, 1997). The major methodological point in the results on this speciÞc instrument development has been that these personal outcomes have no norm. Each person interviewed identiÞes his or her own meaning for each of the 25 outcome items. As such, there are no standardized deÞnitions for any of the 25 outcome items (i.e., choosing work, performing different social roles, or remaining connected to natural support networks). Each individual interviewed describes his or her own deÞnition of the answer to each outcome item. The measurement of the outcomes requires a determination around the dichotomous variable of ÒyesÓor ÒnoÓin answer to the question, ÒIsthe outcome, as deÞned by the individual, present or absent?Ó The key to this body of research has been personal outcomes, as deÞned by each individual with developmental disabilities, rather than a standardized deÞnition of personal outcomes. Personal outcomes become indicators to evaluate quality of life for individuals with disabilities.
III.
A SOCIAL CONTEXT FOR QUALITY AND OUTCOMES
As society has changed across time, so too has the deÞnition of quality. In an examination of the deÞnitions of quality, Reeves and Bednar (1994) concluded that there were Òmultipleand often muddled deÞnitionsÓ(p. 419) of the term. In
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the mass production of factory goods, quality was most frequently deÞned as conformance with speciÞcations. Widgets must all be standardized and uniform, each having been compared against a ÒgoldstandardÓcriterion. In contrast, a service economy deÞnes quality in terms of a customer value paradigm with personal outcome as the indicator (Albrecht, 1992; Peppers & Rogers, 1993; Reeves & Bednar, 1994). In this paradigm, the indicator for customer value is the consumerÕs judgment of the quality (Zeithaml, Parasuraman, & Berry, 1990). This shifting deÞnition of quality also generalizes to services for people with disabilities (Bradley, Ashbaugh, & Blaney, 1994; Gardner, 1999). Human service organizations have reorganized services around individuals rather than have merely assigned people to program slots (Dillon, 1993). Emphasis on individual judgement of design and quality appears in Quality of Life research which includes person-centered planning, self-determination, and personal outcomes (Gardner & Nudler 1999; Goode, 1994; Schalock, 1996; Taylor & Bogdan, 1990;Wehmeyer & Schwartz, 1998). DeÞning quality in personal terms is evident in the numerous person-centered planning models. Person-centered planning is critical for individuals with disabilities if they are to be assimilated into the community (Mount, 1994). Different methods and formats for person-centered planning include (a) Individual Service Design (Yates, 1980); (b) Functional Lifestyle Planning (Green-McGowen, 1985); (c) Personal Futures Planning (Mount and Zwernik, 1988, OÕBrien, 1987); (d) McGill Action Planning Systems (Forrest & Snow, 1987); (e) Essential Lifestyle Planning (Smull & Harrison, 1992); and (f) Personal Outcome Planning (The Council, 1999). The focus on planning the program around the individual has also fostered a shift in the evaluation of the program. The CouncilÕs activities in accreditation of programs for people with developmental disabilities, prior to 1992, centered on record keeping of criterion guidelines for health and safety and written documentation of delivery of services. Changing to the measurement system of Personal Outcome Measures (1997) mandated a change of indicators for evaluation of outcomes. This change parallels the recent trend in the measurement of personal outcomes for individuals with developmental disabilities (McLoughlin, Garner, & Callahan, 1987; Schalock, 1995; Walls & Tseng, 1987). Parmenter (1994), quoting from the work of Flanagan (1978), noted that Òtheeffects on each individualÕs quality of life should be evaluated in terms of his or her personal values and needsÓ(1994, p. 251).
IV.
THE IMPORTANCE OF PERSONAL OUTCOMES
Personal outcomes are important because they provide both a systematic process of planning for people as well as a valid and reliable system for measuring
PERSONAL OUTCOMES
79
quality of life and quality of services. The Personal Outcomes have three signiÞcant applications contributing to person-centered planning: r Learning: Employees use the Personal Outcome Measures to learn about people receiving services and supports. The organizationÕs staff discover the personÕs own meaning for each of the 25 Personal Outcome Measures. r Facilitating: Once the organization has learned a personÕs deÞnition of the outcomes, it may then organize resources and coordinate the services and supports that facilitate these outcomes. Sometimes organizations and teams have to try several different ways to facilitate an outcome. Learning from different approaches often leads to the most practical mixture of supports and services for facilitating an outcome. r Measuring: After the organization aligns services and supports to facilitate personal outcomes, it may then reevaluate to determine if the person has achieved the outcome he or she previously deÞned. The organization then aggregates the individual determinations to form a picture of how well the organization is performing. An evaluation of personal outcomes can serve both formative or summative purposes as well as be used as a self-assessment performed internally or by an independent third-party evaluator. The use of the Personal Outcome Measures for learning, facilitating, or measuring leads organizations into four signiÞcant changes as follows: 1. The organizational focus shifts from compliance to responsiveness; attending to the personal outcomes of people served. 2. The transition from a product to a market focus. This became evident as The Council developed its personal outcome measures in response to the individual and focus group responses of people with disabilities. 3. The measurement of outcomes replaces the measurement of organizational processes. 4. There is a shift from detailed complexity to dynamic connections as organizations begin to understand the connection and relationships among outcomes and how organizational processes facilitate those outcomes. The use of personal outcomes to evaluate programs serving individuals with disabilities presents new opportunities for both individuals with disabilities and their providers. The greatest strides in the application of outcomes measurement have been made in the Þeld of developmental disabilities (Burwell & Jackson, 1999). The growing popularity of person-centered planning and personal outcome evaluation raises central questions about the current design and implementation of community services such as the following:
80
J. Gardner, D. T. Carran, and S. Nudler
r The Þrst question relates to the promotion of personal outcomes at the expense of basic protections. What structure and organizational process requirements are necessary to promote and protect health, safety, and welfare? Do proscriptive requirements for habilitation planning and services promote or inhibit personal outcomes? What regulatory requirements could be eliminated and what organizational process requirements are needed to promote personal outcomes? r A second question addresses the relationship between cost of services and outcomes. Holding other variables equal, do expensive services and supports facilitate a greater number of personal outcomes than less costly services? In terms of Þnancing services, are more restrictive (and more expensive) residential and day settings needed for people with more severe disabilities? r The growing popularity of person-centered planning raises the third question of what variable or set of variables maximize personal outcomes in people with different characteristics. Are there differences in Þnancing and funding of services, size of organizations, type of residential settings, and level of disability that inßuence attainment of personal outcomes? The answers to these questions and an examination of the relationships among variables and personal outcomes can provide valuable information for the design and implementation of future community based services and supports. With the introduction of the Personal Outcome Measures in 1993, The Council recognized the need and obligation to collect data and information on personal outcomes and individual and organizational variables to better address public policy, service design, and Þnancing questions. Individual with disabilities can identify the personal outcomes they expect from services and supports. Individuals with disabilities and their families, as well as taxpayers, are asking for effective and efÞcient services and supports that facilitate outcomes. Public policy makers and service and support providers should be aware of the interplay of organizational and individual variables that promote outcomes.
V. A.
METHOD
Subjects
Subjects for this study were a subsample (n = 1372) from the larger National Outcomes Database (N = 1851). The subsample represented the three largest disability groups surveyed: (a) individuals with Severe and Profound Mental Retardation (MR P/S), (b) individuals with Mild and Moderate Mental Retardation (MR M/M), and (c) individuals with chronic Mental Illness (MI). All disability groups are represented in the database; however, the three disability groups selected
81
PERSONAL OUTCOMES
TABLE I SELECTED DEMOGRAPHIC CHARACTERISTICS FOR SUBJECTS BY DISABILITY GROUPS MR S/P N (%)
MR M/M N (%)
MI N (%)
Total N (%)
Gender Male Female
275 (55.9) 217 (44.1)
384 (55.3) 310 (44.7)
125 (59.0) 87 (41.0)
784 (56.1) 614 (43.9)
Age group <6 6Ð18 19Ð65 >65
1 (0.2) 35 (7.2) 427 (87.7) 24 (4.9)
3 (0.4) 38 (5.5) 609 (88.8) 36 (5.2)
5 (2.4) 7 (3.3) 178 (85.2) 19 (9.1)
9 (0.7) 80 (5.8) 1214 (87.8) 79 (5.7)
Information source Self Staff member Family member Other
61 (12.3) 280 (56.3) 147 (29.6) 9 (1.8)
414 (59.0) 186 (26.5) 89 (12.7) 13 (1.9)
112 (52.1) 83 (38.6) 19 (8.8) 1 (0.5)
587 (41.5) 549 (38.8) 255 (18.0) 23 (1.6)
Variable
comprise 74% of the sample. Table I presents the demographic characteristics for this subsample and Table II presents selected organizational characteristics. B.
Variables
1. DEPENDENT VARIABLES The instrument used for this analysis was the 25-item Personal Outcome Measures (see Gardner, Nudler, & Chapman, 1997 for validity and reliability). This instrument is used during a personal interview format for an individual with disabilities and scored by a trained interviewer. Items are scored in a dichotomous format using standardized administration procedures as ÒYes,Óthe speciÞc outcome is determined to be present for the individual, or ÒNo,Óthe speciÞc outcome is not present. The interview usually takes between 1.5 and 2 hours per individual. The individual may be the source of the information for the interview or staff or family may respond (see Table I). Items are scored individually by the interviewers using pencil-and-paper forms and the data are sent to The CouncilÕs main ofÞce to be entered into a database and checked for accuracy. The 25-item Personal Outcome Measures have been validated using factor analysis and load on seven domains (see Table III). Since there are no norms for this instrument and the population represents varying degrees of disability, a total instrument score may not be as informative as the separate domain scores. For this
82
J. Gardner, D. T. Carran, and S. Nudler TABLE II SELECTED ORGANIZATIONAL CHARACTERISTICS FOR SUBJECTS BY DISABILITY GROUPS MR S/P N (%)
MR M/M N (%)
MI N (%)
Total N (%)
Primary Funding ICF/MR1 HCBW2 State Private
225 (62.3) 115 (28.1) 38 (9.3) 1 (0.2)
117 (23.2) 260 (51.6) 120 (23.8) 7 (1.4)
21 (15.3) 56 (40.9) 55 (40.1) 5 (3.6)
393 (37.4) 431 (41.0) 213 (20.3) 13 (1.2)
Living Arrangement Natural Family Foster Family Supervised Living Supported Living Independent Living
33 (7.5) 9 (2.0) 382 (86.6) 16 (3.6) 1 (0.2)
74 (12.1) 21 (3.4) 321 (52.5) 145 (23.7) 50 (8.2)
18 (9.6) 4 (2.1) 119 (63.3) 30 (16.0) 17 (9.0)
125 (10.1) 34 (2.7) 822 (66.3) 191 (15.4) 68 (5.5)
Size of Organization <50 51Ð100 101Ð200 201Ð500 >500
58 (14.5) 68 (17.0) 102 (25.6) 109 (27.3) 62 (15.5)
114 (21.7) 88 (16.7) 121 (23.0) 152 (28.9) 51 (9.7)
19 (23.5) 13 (16.0) 25 (30.9) 18 (22.2) 6 (7.4)
191 (19.0) 169 (16.8) 248 (24.7) 279 (27.7) 119 (11.8)
Variable
Note. 1ICF/MR: Intermediate Care Facility for Mentally Retarded. 2 HCBW: Home and Community Based Water Program.
reason, the seven domain scores have been used for the dependent variables in this study. 2. INDEPENDENT VARIABLES Variables selected for analysis are organizational characteristics which are (a) individualÕs primary funding source, (b) living arrangement for the individual, and (c) size of the organization serving the individual (see Table II). For analysis of primary funding source the category of private pay was dropped due to the small number of individuals with that primary funding source and similarly the category of independent living for living arrangement was dropped due to the limited number of individuals with severe and profound mental retardation in this cell. C.
Data Analysis
For these data, there is not a single dependent variable or outcome to predict. Instead, there are multiple dependent variables, the seven factor scores. Such data require multivariate analysis used for purposes of supervised investigative
83
PERSONAL OUTCOMES
TABLE III FACTORS AND OUTCOME ITEMS OF THE PERSONAL OUTCOME MEASURES Factors
Outcome
Identity
People choose personal goals. People choose where and with whom to live. People choose where they work. People have intimate relationships. People are satisÞed with services. People are satisÞed with their personal life situations.
Autonomy
People choose their daily routines. People have time, space, and opportunity for privacy. People decide when to share personal information. People use their environments.
AfÞliation
People participate in the life of the community. People interact with other members of the community. People perform different social roles. People have friends. People are respected. People live in integrated environments.
Attainment
People realize personal goals. People choose services.
Rights
People exercise rights. People afforded due process.
Health
People are free from abuse and neglect. People have the best possible health. People experience continuity and security.
Safeguards
People remain connected to natural support networks. People are safe.
exploration. Such techniques also statistically reduce the risk of Type I errors in subsequent univariate analyses. Multivariate Analysis of Variance (MANOVA) are used for the inferential statistics. VI.
RESULTS
Level of disability (MR S/P, MR M/M, and MI) was crossed with selected organizational characteristics of funding source, living arrangement, and size of organization. Descriptive statistics are presented for the sample for average percentage of outcomes reported by disability (see Table IV) and the average factor score reported by disability (see Table V). These descriptive statistics indicate how
84
J. Gardner, D. T. Carran, and S. Nudler TABLE IV AVERAGE PERCENTAGE OF OUTCOMES REPORTED BY DISABILITY LEVELa Disability MR Profound/Severe MR Mild/Moderate Mentally Ill Total
N
Mean % Outcome
(SD)
484 684 204 1372
60.04% 71.87% 67.88% 67.10%
(0.17) (0.17) (0.18) (0.18)
a
Twenty-Þve possible outcomes.
MR S/P have the lowest percentage of outcomes for the three disability groups, 10% lower than the MR M/M. Average factor scores appear similar among groups but warrant further investigation. The MANOVA for the seven dependent variables of outcome factor scores was performed for the three organizational characteristics. Three separate MANOVAs were run using SPSS General Linear Model investigating Disability × Funding Source, Disability × Living Arrangement, and Disability × Size of Organization. Results are presented for each MANOVA, followed by integrated univariate analyses for each of the seven factors. A.
Funding Source
WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 1988) = 6.353, p < .001] and Funding Source [F(14, 1986) = 9.194, p < .001] but not to the interaction [F(28, 3581.735) = 1.228, p > .05]. The effects of Disability and Funding Source TABLE V AVERAGE FACTOR SCORES, REPORTED BY DISABILITY LEVEL Disability
Identity M (SD)
MR S/P MR M/M MI Total
3.07 (1.37) 3.08 (1.47) 3.45 (1.61) 3.44 (1.48)
Autonomy AfÞliation Attainment M (SD) M (SD) M (SD) 2.98 (1.12) 3.45 (0.85) 3.50 (0.81) 3.29 (0.98)
2.53 (1.46) 3.79 (1.46) 3.53 (1.59) 3.31 (1.59)
1.12 (0.67) 1.36 (0.63) 1.22 (0.62) 1.26 (0.65)
Rights M (SD)
Health M (SD)
Safeguards M (SD)
0.48 (0.78) 0.64 (0.85) 0.52 (0.85) 0.57 (0.83)
2.43 (0.68) 2.47 (0.69) 2.32 (0.75) 2.43 (0.69)
1.57 (0.55) 1.62 (0.55) 1.57 (0.59) 1.59 (0.56)
Note. MR S/P = Mentally Retarded Severe/Profound; MR M/M = Mentally Retarded Mild/ Moderate; MI = Mentally Ill.
85
PERSONAL OUTCOMES
TABLE VI MANOVA UNIVARIATE TESTS OF DISABILITY AND FUNDING SOURCE AND THEIR INTERACTION Independent Variable
Dependent Variable
df
Univariate F
Disability
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
2, 999 2, 999 2, 999 2, 999 2, 999 2, 999 2, 999
9.68∗∗∗ 9.26∗∗∗ 34.23∗∗∗ 4.92∗∗ 2.28 2.16 0.28
Funding Source
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
2, 999 2, 999 2, 999 2, 999 2, 999 2, 999 2, 999
22.96∗∗∗ 20.75∗∗∗ 36.23∗∗∗ 18.61∗∗∗ 11.83∗∗∗ 1.61 1.86
Disability × Funding Source
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
4, 999 4, 999 4, 999 4, 999 4, 999 4, 999 4, 999
4.08∗∗ 0.72 0.99 0.69 2.99∗ 1.69 0.16
∗p
< .05. < .01. ∗∗∗ p < .001.
∗∗ p
were further investigated using univariate tests. Results of these analyses are summarized in Table VI. SigniÞcant univariate main effects were found among Disabilities for the outcome factors of Identity, Autonomy, AfÞliation, and Attainment. SigniÞcant univariate main effects were also found among Sources of Funding for the outcome factors of Identity, Autonomy, AfÞliation, Attainment, and Rights. SigniÞcant univariate interactions were found only for the outcome factors of Identity and Rights.
B.
Living Arrangement
WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 2228) = 3.136, p < .001] and Living Arrangement [F(21, 3199.357) = 8.086, p < .001] and to the interaction
86
J. Gardner, D. T. Carran, and S. Nudler TABLE VII MANOVA UNIVARIATE TESTS OF DISABILITY AND LIVING ARRANGEMENTS AND THEIR INTERACTION Independent Variable
Dependent Variable
df
Univariate F
Disability
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
2, 1120 2, 1120 2, 1120 2, 1120 2, 1120 2, 1120 2, 1120
4.05∗ 2.96∗ 29.71∗∗∗ 1.73 2.43 1.31 0.39
Living Arrangements
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
3, 1120 3, 1120 3, 1120 3, 1120 3, 1120 3, 1120 3, 1120
21.75∗∗∗ 8.20∗∗∗ 27.54∗∗∗ 12.23∗∗∗ 22.76∗∗∗ 0.54 3.24∗
Disability × Living Arrangements
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
6, 1120 6, 1120 6, 1120 6, 1120 6, 1120 6, 1120 6, 1120
1.51 1.48 2.28∗ 0.57 3.71∗∗ 0.36 0.87
∗p
< .05. < .01. ∗∗∗ p < .001.
∗∗ p
[F(42, 5228.575) = 1.45, p < .05]. The effects of the interaction of Disability × Living Arrangement was further investigated using univariate tests. Results of these analyses are summarized in Table VII. SigniÞcant univariate main effects between Disability were found for the outcome variables of Identity, Autonomy, and AfÞliation. SigniÞcant univariate main effects between types of Living Arrangements were found for all outcomes except Health. SigniÞcant univariate interactions were found for the outcome factors of AfÞliation and Rights.
C.
Size of Organization
WilkÕs criterion indicated that the combined seven outcome factor scores were signiÞcantly related to Disability [F(14, 1946) = 14.785, p< .001] and Size of Organization [F(28, 3509.624) = 3.457, p < .001] and to the interaction
87
PERSONAL OUTCOMES
TABLE VIII MANOVA UNIVARIATE TESTS OF DISABILITY AND SIZE OF ORGANISATION AND THEIR INTERACTION Independent Variable
Dependent Variable
df
Univariate F
Disability
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
2, 979 2, 979 2, 979 2, 979 2, 979 2, 979 2, 979
22.05∗∗∗ 36.88∗∗∗ 92.95∗∗∗ 16.35∗∗∗ 4.92∗∗ 1.78 1.11
Size of Organization
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
4, 979 4, 979 4, 979 4, 979 4, 979 4, 979 4, 979
3.78∗∗ 6.20∗∗∗ 2.41∗ 4.02∗∗ 5.43∗∗∗ 7.74∗∗∗ 1.10
Disability × Size of Organization
Identity Autonomy AfÞliation Attainment Rights Health Safeguards
8, 979 8, 979 8, 979 8, 979 8, 979 8, 979 8, 979
1.54 5.97∗∗∗ 2.14∗ 3.42∗∗ 1.11 1.99∗ 0.72
∗p
< .05. < .01. ∗∗∗ p < .001.
∗∗ p
[F(56, 5245.076) = 2.283, p < .001]. These Þndings were further investigated through univariate tests. Results of these analyses are summarized in Table VIII. SigniÞcant univariate main effects between Disability were found for the outcome variables of Identity, Autonomy, AfÞliation, Attainment, and Rights. SigniÞcant univariate main effects between Size of Organizations were found for all outcomes except Safeguards. SigniÞcant univariate interactions were found for the outcome factors of Autonomy, AfÞliation, Attainment, and Health. Integrated univariate results from the MANOVAs are presented for each outcome factor. 1. IDENTITY This factor was formed from questions reßecting client choices (see Table III). Results of the MANOVA analysis found SigniÞcant a signiÞcant interaction for
88
J. Gardner, D. T. Carran, and S. Nudler
Funding (see Fig. 1) and main effects for Living Arrangement and Size of Organization. Funding shows that regardless of disability, HCBW-funded individuals report signiÞcantly higher identity scores than ICF/MR-funded individuals. State funding, however, is different. State funding is also related to higher identity scores for MR M/M and MI, but not for MR S/P. MR S/P in state-funded organizations scored lower than those in HCBW but higher than ICF/MR. For Living Arrangement MR M/M had signiÞcantly higher identity scores than the other groups and Supervised Living has signiÞcantly lower identity scores than the other arrangements. For Size of Organizations, main effects were found, with signiÞcantly lower identity scores for MR S/P and for organizations with more than 500 clients. These Þndings suggest that MR S/P have fewer choices than the other two disability groups. Further, MR S/P choices were signiÞcantly limited in ICF/MRfunded agencies, supervised living facilities, and organizations serving more than 500 clients. 2. AUTONOMY This factor reßects the individualÕs privacy and intimate decision making. Results of the MANOVAs found the main effect of Disability to be signiÞcant for Funding and Living Arrangement and an interaction for Disability Size of Organization (refer to Fig. 1). SigniÞcant main effects resulted from the signiÞcantly lower Autonomy scores for MR S/P compared to the other disabilities. Across Disabilities, Autonomy was signiÞcantly lower in ICF/MR-funded and in supervised living sites. The interaction reßects the signiÞcantly lower score for MR S/P in organizations with more than 500 clients. These results reßect the lack of autonomy in ICF/MR organizations and supervised living facilities. These results suggest lower autonomy for MR S/P individuals in large organizations serving more than 500 individuals. 3. AFFILIATION This factor reßects the social community integration for individuals with disabilities. Univariate results indicated main effects for funding and interactions for Living Arrangements and Size of Organization (see Fig. 2). The main effect of disability for funding again indicates lowest within-group afÞliation scores for ICF/MR funding and also for the MR S/P. The interaction of Disability Living Arrangement indicates lowest afÞliation scores for MR S/P in family settings, unlike the MR M/M and MI, but all disabilities reported lower afÞliation scores in supervised living sites. Supported Living had higher afÞliation scores for both MR groups but not for MI. The interaction of disability by size resulted from the MR S/P having lower afÞliation scores as the size of the organization increased. This was in contrast to that reported for the MI group who had better afÞliation scores in larger organizations.
89
PERSONAL OUTCOMES 4.0 3.6 3.2 2.8
Mean AUTONOMY
2.4 2.0
Disability
1.6 1.2
MR P/S (M=2.97)
.8 MR M/M (M=3.46)
.4 0.0
MI (M=3.61)
> 0 (M =2 3 .3 )
)
5 .4
)
8 .3
=3
=3
(M
(M
0
0
50
20
1-
50
20
1-
)
0 .4
9 .3
=3
=3
(M
(M
00
50
-1
10
51
<
)
Size of Organization 4.0 3.6 3.2 2.8 2.4
Mean AUTONOMY
2.0 1.6
Disability
1.2 .8
MR P/S (M=2.89)
.4
MR M/M (M=3.41)
0.0
MI (M=3.55)
ICF/MR (M=2.74)
HCBW (M=3.52)
State (M=3.53)
Primary Funding Source 4.0 3.6 3.2
Mean AUTONOMY
2.8 2.4 2.0
Disability
1.6 1.2
MR P/S (M=2.93)
.8 MR M/M (M=3.4) .4 0.0
MI (M=3.45) Su
Su
or
pp
rv
tL
)
4)
.7
=3
7 .0
=3
(M
(M
iv
v
Li
)
5)
.4
1 .4
=3
=3
(M
(M
m Fa
am rF
l ra tu
te
pe
s Fo
Na
Living Arrangement
FIG. 1. Results of disability by Funding Source, Living Arrangement, and Size of Organization for the factors Identity and Autonomy.
90
J. Gardner, D. T. Carran, and S. Nudler 4.5 4.0 3.5 3.0
Mean IDENTITY
2.5 2.0
Disability
1.5 MR P/S (M=3.1) 1.0 MR M/M (M=3.74)
.5 0.0
MI (M=3.65)
> 0 (M .9 )
=3 .5 2)
9)
1)
.6
.5
9)
=3
(M
=2
0
(M
.4
=3
=3
(M
0
50 1-
50
20
20 1-
0
(M
0 -1
50
10
51
<
Size of Organization 4.5 4.0 3.5 3.0 2.5
Mean IDENTITY
2.0
Disability
1.5 1.0
MR P/S (M=3.04)
.5
MR M/M (3.6)
0.0
MI (M=3.29)
ICF/MR (M=2.79)
HCBW (M=3.62)
State (M=3.78)
Primary Funding Source 4.5 4.0 3.5 3.0
Mean IDENTITY
2.5 2.0
Disability
1.5 MR P/S (M=3.07) 1.0 MR M/M (M=3.58)
.5 0.0
MI (M=3.2)
Su
Su
pp or tL 2)
.0
)
2 .0
FIG. 1. (Continued)
=4
(M
=3 (M
iv
v
Li
)
2)
.1
5 .1
=4 (M
=4 (M
m Fa
am rF
rv
te
pe
s Fo
al ur at N
Living Arrangement
91
PERSONAL OUTCOMES 5.0 4.5 4.0 3.5
Mean AFFILIATION
3.0 2.5
Disability
2.0 1.5
MR P/S (M=2.49)
1.0 MR M/M (M=3.82)
.5 0.0
MI (M=3.88)
> 50 0
1-
(M =2 1 .4 )
)
6 .2
)
5 .4
=3
=3
(M
(M
0
0
50
20
)
1 .4
3 .6
=3
=3
(M
(M
00
1-
-1
50
20
10
51
<
)
Size of Organization 5.0 4.5 4.0 3.5 3.0
Mean AFFILIATION
2.5 2.0
Disability
1.5
MR P/S (M=2.41)
1.0
MR M/M (M=3.7)
.5 0.0
MI (M=3.43)
ICF/MR (M=2.28)
HCBW (M=3.7)
State (M=3.72)
Primary Funding Source 5.0 4.5 4.0
Mean AFFILIATION
3.5 3.0 2.5
Disability
2.0 1.5
MR P/S (M=2.52)
1.0 MR M/M (M=3.68)
.5 0.0
MI (M=3.27)
pp
Su or
rv
tL
Li
2)
.3
8)
.7
=4
(M
=2 (M
iv
v
1)
4)
.8
.9
=3
=3
(M
(M
m Fa
am rF
al ur
te
pe
Su
s Fo
at
N
Living Arrangement
FIG. 2. Results of disability by Funding source, Living Arrangement, and Size of Organization for the factors AfÞliation and Attainment.
92
J. Gardner, D. T. Carran, and S. Nudler 1.8 1.6 1.4
Mean ATTAINMENT
1.2 1.0 .8
Disability
.6 MR Prof/Sev (M=1.14)
.4
MR Mod/Mild (M=1.40)
.2 0.0
MI (M=1.36) > 50 0 =1 .0 7)
8)
4)
.8
.3
=1
=1
(M
(M
0
(M
50
0 2)
3)
.4
.4
=1
=1
(M
(M
00
20
1-
1-
-1
50
20
10
51
<
Size of Organization 1.8 1.6 1.4 1.2
Mean ATTAINMENT
1.0 .8 .6
Disability
.4
MR Prof/Sev (M=1.11)
.2
MR Mod/Mild (M=1.33)
0.0
MI (M=1.2)
ICF/MR (M=1.01)
HCBW (M=1.37)
State (M=1.36)
Primary Funding Source 1.8 1.6 1.4
Mean ATTAINMENT
1.2 1.0 .8
Disability
.6 MR P/S (M=1.11) .4 MR M/M (M=1.31)
.2 0.0
MI (M=1.12)
Su
Su
or
pp
rv
tL .4 8)
1)
.1
FIG. 2. (Continued)
=1
=1
(M
(M
iv
v
Li
2)
1)
.4
.4
=1
=1
(M
(M
m Fa
am rF
al ur
te
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s Fo
at
N
Living Arrangement
PERSONAL OUTCOMES
93
These results reinforce the restrictions faced by MR S/P individuals, especially in family settings, larger organizations (>500), and those funded by ICF/MR. 4. ATTAINMENT This factor reßects outcomes of choice and realization of goals. MANOVA Þndings for funding indicated signiÞcant main effects for both Funding and Living Arrangements, with an interaction for Size of Organization (see Fig. 2). Funding again shows signiÞcantly lower mean attainment scores for individuals funded by ICF/MR and also for individuals with MR S/P. Living Arrangement demonstrated that supervised living had signiÞcantly lower mean attainment scores than the other living arrangements. Size of Organization did not affect attainment scores for MR M/M. However, as the size of the organization increased above 100 clients, scores for MR S/P signiÞcantly declined. These results, again, emphasize the disadvantage that MR S/P individuals face in large ICF/MR facilities. 5. RIGHTS This factor reßects an individualÕs experience of his or her legal rights. Results from the MANOVA analysis found a signiÞcant interaction for Funding and also for Living Arrangement (see Fig. 3). SigniÞcant main effects were found for size of organization. HCBW funding had highest mean rights scores for all disabilities. However, MR M/M and MI individuals reported lowest rights scores in ICF/MR-funded agencies. In contrast, MR S/P individuals reported similar rights in ICF/MR and state-funded agencies. Living Arrangements showed that MR S/P and MR M/M scored similarly across disability levels with lowest scores found in supervised living. For the MI, significantly lower scores were found to be in sites other than the natural family. For Size of Organization, MR S/P reported signiÞcantly lower Rights than MR M/M and MI. Regardless of disability, organizations serving between 100 and 500 had the highest Rights ratings. These results support earlier Þndings. Overall, MR S/P reported signiÞcantly lower Rights regardless of funding. The other disability groupings, MR M/M and MI, did report lower Rights in the ICF/MR-funded facilities. Both MR groups reported fewer Rights in supervised living facilities, but larger organizations were reported to provide more Rights to their clients. 6. HEALTH The factor Health measured not only an individualÕs medical health but also his or her protection. Results from the MANOVA found no signiÞcant differences among Funding levels or among Living Arrangements. A signiÞcant interaction was found, however, for Size of Organization (see Fig. 3). Individuals with a
94
J. Gardner, D. T. Carran, and S. Nudler 1.4 1.2 1.0
Mean RIGHTS
.8 .6
Disability
.4
MR P/S (M=0.51)
.2
MR M/M (M=0.7)
0.0
MI (M=0.72) > 50 0 =0 (M
0
6)
.3
.6 8)
8)
9)
.7
=0 (M
=0 (M
.5
4)
.5
=0 (M
0
50 1-
20 1-
0
=0 (M
0 -1
50
20
10
51
<
Size of Organization 1.4
1.2
1.0
.8
Mean RIGHTS
.6
Disability .4 MR P/S (M=0.46) .2 MR M/M (M=0.59)
0.0
MI (M=0.39)
ICF/MR (0.31)
HCBW (M=0.69)
State (M=0.53)
Primary Funding Source 1.4 1.2 1.0
Mean RIGHTS
.8
Disability
.6 .4
MR P/S (M=0.49)
.2
MR M/M (M=0.6)
0.0
MI (M=0.4)
or pp Su tL 2)
.8
7)
.3
=0
(M
=0 (M
iv
v
Li
8)
1)
.0
.8 =0
=1 (M
(M
m Fa
m Fa
l ra
er
u at
rv pe Su
st Fo
N
Living Arrangement
FIG. 3. Results of disability by Funding Source, Living Arrangement, and Size of Organization for the factors Rights and Health.
95
PERSONAL OUTCOMES 2.8 2.4 2.0
Mean HEALTH
1.6 1.2
Disability
.8
MR P/S (M=2.44)
.4
MR M/M (M=2.48)
0.0
MI (M=2.31)
> 0
50 1-
50
20
(M .3 3)
4)
7)
.5
)
.5
=2
=2
(M
=2
0
(M
.3
4)
.3
=2
=2
(M
0
0
(M
20 1-
50
0 -1
10
51
<
Size of Organization 2.8
2.4
2.0
1.6
Mean HEALTH
1.2
Disability .8 MR P/S (M=2.43) .4
MR M/M (M=2.49)
0.0
MI (M=2.34)
ICF/MR (M=2.44)
HCBW (M=2.47)
State (M=2.4)
Primary Funding Source 2.8 2.4 2.0
Mean HEALTH
1.6
Disability
1.2 .8
MR P/S (M=2.42)
.4
MR M/M (M=2.46)
0.0
MI (M=2.3)
at
ur al
rF am
(M
rv
3)
6)
tL
iv
(M
=2
.2
.4
or
Li
v
(M
=2
=2
pp
pe
te
Fa m
Su
Su
Fo s
N
.4
1)
Living Arrangement
FIG. 3. (Continued)
(M
=2
.4
8)
96
J. Gardner, D. T. Carran, and S. Nudler 2.0 1.8 1.6 1.4
Mean SAFEGARDS
1.2 1.0
Disability
.8 .6
MR P/S (M=1.59) .4 MR M/M (M=1.64)
.2 0.0 <
50
10
51
00
=1
2)
1-
20
0
(M
=1
.6
>
20
1-
-1
(M
0
(M
=1
.5
(M
=1
(M
.5
=1
.6
9)
MI (M=1.61) 50
0
50
)
.7
2)
)
Size of Organization 2.0 1.8 1.6 1.4 1.2
Mean SAFEGARDS
1.0 .8
Disability
.6
MR P/S (M=1.55)
.4
MR M/M (M=1.61)
.2 0.0
MI (M=1.62)
ICF/MR (M1.55)
HCBW (M=1.58)
State (M=1.67)
Primary Funding Source 2.0 1.8 1.6
Mean SAFEGARDS
1.4 1.2 1.0
Disability
.8 .6
MR P/S (M=1.55)
.4 MR M/M (M=1.6) .2 0.0
MI (M=1.6)
or
pp
Su tL 2)
.6
=1
5)
.5
=1
(M
(M
iv
v
Li
)
6 .7
1 .4
=1
=1
(M
(M
m Fa
am rF
rv
pe
Su
e st Fo
al ur
at
N )
Living Arrangement
FIG. 4. Results of disability by Funding Source, Living Arrangement, and Size of Organization for the factor Safeguards.
97
PERSONAL OUTCOMES
disability of MI, reported the lowest Health scores in organizations serving less than 100. 7. SAFEGUARDS This factor reßects an individualÕs perception of his or her safety within an organization. Results of the MANOVA analysis found no effect for Funding and no effect for Size of Organization. There was a signiÞcant interaction for Living Arrangement (see Fig. 4). For MR M/M and MI, individuals in foster care reported signiÞcantly lower mean scores for the Safeguards factor than the other arrangements. MI individuals were also low in Supported Living. The MR groups reported the higher outcomes for Safeguards in natural family and supported living.
VII.
DISCUSSION
The data for this inquiry were drawn from interviews conducted during accreditation reviews by The Council on Quality and Leadership in Supports for People with Disabilities from 1993 to 1997. Organizations participating in the accreditation program included (a) organizations required to be accredited by The Council, (b) organizations required to be accredited by a national accrediting body who selected The Council, and (c) organizations that chose to be accredited as part of an internal quality enhancement process. This is a specialized data set and the Þndings should not be generalized to any other universe of service and support providers or people with intellectual disabilities or mental illness. Summary of results indicated that people with signiÞcant intellectual disability achieved fewer personal outcomes, on average, than did people with mild intellectual disability or people with mental illness. This was generally true across residential settings and sources of funding. In certain residential settings the differences were minimal. In other instances, differences in size, type of setting and source of funding showed signiÞcant difference in the attainment of outcomes. For example, outcomes of afÞliation, autonomy, and attainment for people with severe intellectual disability decrease signiÞcantly as the size of the whole organization (not the size of the living unit) increases from 200 to 500 people. An analysis of these data reveals three general themes. The Þrst is that outcomes in the area of health and safeguards were generally not inßuenced by the variables of Disability, Size of Organization, primary Funding Source, or type of Living Arrangement. Organizations participating in The CouncilÕs accreditation program provided a range of services and supports that facilitated outcomes in the areas of health and safeguards. This is consistent with the quarter-century of regulatory concern for health, safety, and welfare. Across different living arrangements, people of all three disability groupings had similar outcome scores in the areas of health and safeguards.
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Second, in contrast to the patterns in the categories of Health and Safeguards, scores in the outcome areas of Identity, Autonomy, AfÞliation, and Attainment did generally vary with the size of the organization, source of funding, and living arrangement. This reßects the traditional concern with obvious and critical outcomes related to health and safeguards. Unfortunately, little emphasis has been placed on outcomes associated with making choices, participating in the community or choosing life goals. The larger, and more restrictive, settings facilitated relatively fewer outcomes than organizations of smaller size or organizations with fewer regulation and prescriptive process requirements. Hence, fewer outcomes associated with identity, autonomy, attainment, and afÞliation were found in the residential settings funded through the heavily regulated ICF/MR program. Services funded through the HCBW, though less regulated and less costly than those of the ICF/MR program, facilitated signiÞcantly more outcomes at less cost in the areas of identity, autonomy, afÞliation, and achievement. Third, while general trends in the data are present, important differences do emerge that deserve the attention of public policy analysts, governmental regulators and funders. For living arrangements and source of funding, there was a signiÞcant Þnding for rights. Within disability groups, the highest rights scores were reported in mid-size organizations. Fewer outcomes related to rights were found in smaller and larger organizations. In addition, people with severe and profound intellectual disability achieved the highest number of outcomes in foster care settings while people with mental illness achieved the lowest number of outcomes in foster care settings. There is also some indication that foster care has a negative impact upon people with mental illness in the areas of autonomy, identity, rights, and safeguards. Finally, there is some evidence that the size of organizations does negatively inßuence outcomes when the number of people served and supported ranged between 201 and 500. This is particularly true for people with severe and profound intellectual disabilities in the areas of afÞliation, autonomy, and attainment. In contrast, for the areas of health and safeguards, increased size had little impact on the three groups. The implication of these data for managers in behavioral health care and in services for people with intellectual disabilities is that the variables of disability, organizational size, type of funding, and type of living arrangement produce differential patterns of outcomes for individuals with disabilities. This analysis reinforces the urgent need for the continued individualization in the planning and individualization of services and supports. People with disabilities, their families, service providers and governmental representatives must promote and support services that facilitate outcomes in the areas of identity, autonomy, achievement, and afÞliation without surrendering the progress made in the past quarter-century in promoting health care and providing
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basic safeguards for people with disabilities. Health and safeguards are important outcomes which must be maintained and monitored. In addition, the data from the Personal Outcomes database indicate that the outcomes of identity, autonomy, afÞliation, attainment, and rights were inßuenced by organizational characteristics and disability type. These Þndings support the need for future research with these variables. REFERENCES Accreditation Council for Facilities for the Mentally Retarded (ACF/MR). (1971). Standards for residential facilities for the mentally retarded. Chicago: Joint Commission on the Accreditation of Hospitals, The Council. Accreditation Council for Facilities for the Mentally Retarded (ACF/MR). (1973). Standards for community services agencies serving persons with mental retardation and other developmental disabilities. Chicago: Joint Commission on the Accreditation of Hospitals, The Council. Accreditation Council for Services for Mentally Retarded and Other Developmentally Disabled Persons (ACMRDD). (1984). Standards for services for developmentally disabled individuals. Washington, DC. The Council. Accreditation Council on Services for People with Developmental Disabilities (ACDD). (1987). Standards for Services for people with developmental disabilities. Boston: The Accreditation Council. Accreditation Council on Services for People with Developmental Disabilities. (1990). Standards for services for people with developmental disabilities. Landover: The Accreditation Council. The Accreditation Council on Services for People with Disabilities. (1992). Outcome based performance measures, Þeld review edition. Landover: The Accreditation Council. The Accreditation Council on Services for People with Disabilities. (1992). Preliminary outcome based performance measures. Landover: The Accreditation Council. Albrecht, K. (1992). The only thing that matters: Bringing the power of the customer into the center of your business. New York: Harper Business. American Association on Mental DeÞciency. (1964). Standards for state residential institutions for the mentally retarded. SpringÞeld: Illinois Department of Mental Health. Bradley, V. J., Ashbaugh, J. W., & Blaney, B. (Eds.). (1994). Creating individual supports for people with developmental disabilities: A mandate for change at many levels. Baltimore, MD: Paul H. Brookes. Burwell, B., & Jackson, B. (1999). Personal outcomes measurement in home and community-based services programs for persons with severe disabilities. (Draft Final Report, October 1999). Cambridge, MA: The MEDSTAT Group. The Council on Quality and Leadership in Supports for People with Disabilities. (1993). Outcome based performance measures. Landover, MD: Author. The Council on Quality and Leadership in Supports for People with Disabilities. (1995). Quality assurance measures database Þnal report. Towson, MD: Author. The Council on Quality and Leadership in Supports for People with Disabilities. (1997). Personal outcome measures. Towson, MD: Author. The Council on Quality and Leadership in Supports for People with Disabilities. (1999). Planning with personal outcomes. Towson, MD: Author. Dillon, M. (1993). Morality and freedom: Challenges to a Þeld in transition. Mental Retardation, 31, iiiÐviii. Flanagan, J. C. (1978). A research approach to improving our quality of life. American Psychologist, 33, 138Ð147.
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Forest, M., & Snow, J. (1987). The MAPS process. Toronto: Frontier College. Gardner, J., Nudler, S., & Chapman, M. (1997). Personal outcomes as measures of quality. Mental Retardation 35, 295Ð305. Gardner, J. F., & Nudler, S. (Eds.). (1999). Quality performance in human services: Leadership, values, and vision. Baltimore, MD: Paul H. Brookes. Goode, D. A. (1994). The national quality of life for persons with disabilities project: A quality of life agenda for the United States. In D. A. Goode (Ed.), Quality of life for persons with disabilities: International perspectives and issues (pp. 138Ð175).Campbridge, MS: Brookline Books. Green-McGowen, K. (1985). Functional life planning. Peachtree City, GA: KMG Seminars. Health Care Financing Administration (HCFA). (June 3, 1988). Medicaid program: Conditions for intermediate care facilities for the mentally retarded; Final rule: Federal Register, 53(107), 20448Ð 20505. Washington, DC: Health Care Financing Administration. McLoughlin, C. S., Garner, J. B., & Callahan, M. (1987). Getting employed, staying employed. Baltimore, MD: Paul H. Brookes. Mount, B. (1994). BeneÞts and limitations of personal futures planning. In V. J. Bradley, J. Ashbaugh, & B. Blaney, Creating individual supports for people with developmental disabilities. Baltimore, MD: Paul H. Brookes. Mount, B., & Zwernik, K. (1988). ItÕs never to early, itÕs never to late. St. Paul, MN: Metropolitan Council. Parmenter, T. R. (1994). Quality of life of people with developmental disabilities. International Review of Research in Mental Retardation, 18, 248Ð287. Peppers, D., & Rogers, M. (1993). The one to one future: Building relationships one customer at a time. New York: Doubleday. Reeves, C. A., & Bednar, D. A. (1994). DeÞning quality: Alternatives and implications. Acadamy of Management Review, 19, 419Ð445. Schalock, R. L. (1996). Reconsidering the conceptualization and measurement of quality of life. In R. L. Schalock (Ed.), Quality of life: Vol. 1. Conceptualization and measurement (pp. 123Ð139). Washington, DC: American Association for Mental Retardation. Schalock, R. L. (1995). Outcome based evaluation. New York: Plenum. Smull, M., & Harrison, S. (1992). Supporting people with severe reputations in the community. Alexandria, VA: National Association of State Mental Retardation Program Directors. Taylor, S. J., & Bogdan, R. (1990). Quality of life and the individualÕs perspective. In R. L. Schalock (Ed.), Quality of life: Perspectives and issues (pp. 27Ð40).Washington: American Association on Mental Retardation. Walls, R. T., & Tseng, M. S. (1987). Measurement of client outcome in rehabilitation. In B. Bolton (Ed.), Handbook of measurement and evaluation in rehabilitation (2nd ed., pp. 183Ð202).Baltimore, MD: Paul H. Brookes. Wehmeyer, M., & Schwartz, M. (1998). The relationship between self-determination and quality of life for adults with mental retardation. Education and Training in Mental Retardation and Developmental Disabilities 33(1), 3Ð12. Yates, J. (1980). Program design sessions. Stoughton, MA: Author. Zeithaml, V. A., Parasuraman, A., & Berry, L. L. (1990). Delivering quality service: Balancing customer perceptions and expectations. New York: The Free Press.
Credulity and Gullibility in People with Developmental Disorders: A Framework for Future Research STEPHEN GREENSPAN HEALTH SCIENCES CENTER UNIVERSITY OF COLORADO DENVER, COLORADO
GAIL LOUGHLIN UNIVERSITY OF CONNECTICUT STORRS-MANSFIELD, CONNECTICUT
RHONDA S. BLACK UNIVERSITY OF HAWAII AT MANOA HONOLULU, HAWAII
I.
INTRODUCTION
Recent efforts to redeÞne mental retardation (MR) have been based on the belief that invented scientiÞc criteria, e.g., IQ and adaptive behavior, are insufÞcient to diagnose a disorder which over the centuries was diagnosed on the basis of intuitive prototypes (Greenspan, 1997). In this chapter, we argue that a central aspect of the MR prototype which has been largely overlooked in recent conceptualizations is a tendency toward unusual credulity and gullibility. In our view, it is credulity and gullibility, as much or more than deÞciencies in daily living skills, which cause people with MR (and, for that matter, other forms of cognitive impairment) to be
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C 2001 by Academic Press. Copyright All rights of reproduction in any form reserved.
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viewed as ÒdisabledÓand, perhaps, in need of protections such as conservatorship arrangements. Credulity may be described as a tendency to believe something, usually a highly questionable statement or claim, despite scanty evidence. Gullibility may be described as a vulnerability to being tricked or manipulated. The two constructs are related in that a manipulator typically takes advantage of a victimÕs credulity to bring about a gullible outcome. Although, in line with our long-standing interest in social intelligence (Greenspan, 1979; Greenspan & Love, 1997), we have given central emphasis to the role of credulity (social intelligence deÞcit in processing false claims), it is obvious that many other factors, contextual (e.g., presence or absence of supports) and personological (e.g., need for social approval), contribute to gullible outcomes as well. People with MR or other developmental disabilities may be particularly gullible because they lack the content knowledge or cognitive processing ability to evaluate false claims and, also, because they typically have made personality adaptations (e.g., an ÒexternalÓmotivational orientation) which cause them, even more than is typically the case, to base their behavior on the cues provided by others. While such a tendency to be imitative and trusting is generally a good thing, survival in the social world requires an ability to discriminate those occasional situations in which compliance or agreement may result in failure or even danger. A good example of how credulity and gullibility contribute to victimization and exploitation of people with MR can be found in the notorious Glen Ridge (New Jersey) rape case, in which a female high school student, known to all in her neighborhood as someone with mild MR, was vaginally violated, with a broomstick and baseball bat, on a stage-like setting before an audience of several cheering ÒnormalÓyoung men. The best account of this case can be found in a book by Lefkowitzk (1997), which reportsÑin line with most cases of sexual abuse of people with MRÑthat the young woman was coerced through psychological rather than physical means. At the heart of such psychological coercion is the making of false promises (in that case, to get her a date with a brother of one of the perpetrators) and false threats (to tell her parents if she didnÕt cooperate) which served to confuse the victim and, to use a legal term, caused her Òwillto be overborne.ÓHer credulity lay in her uncritical acceptance of such false threats and promises, and her gullibility lay in the ease, akin to Òtakingcandy from a baby,Ówith which she could be tricked into going along with an action which was not in concert with her wishes (she reportedly resisted going with the young men) or well-being. Sexual abuse, pernicious and reprehensible as it is, is but one example of how credulity and gullibility place people with MR at increased risk of being exploited by others. Such exploitation can take many forms, including being the butt of practical jokes, getting involved in fraudulent or dubious get-rich-quick schemes, being recruited into cults, giving false confessions to interrogators, being talked into using drugs, being unwilling participants in criminal acts, placing oneÕs own
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child in the care of untrustworthy persons, and not being able to say ÒnoÓto phone solicitors. Researchers (e.g., Wilson & Brewer, 1982) have established that individuals with MR are more likely to be victims of property crime, crimes against the person, assault, and sexual assault, but we are not aware of a current body of literature linking such vulnerability to social-cognitive processes such as credulity or gullibility. Victimization by exploiters using ruses is, of course, by no means limited to people with MR, and such victimization is likely affected by a host of factors, including personality characteristics, such as timidity, other than cognitive limitations. But ÒcoercionscenariosÓundoubtedly pose cognitive challenges to the targeted individuals, and people with cognitive limitations are probably less able to see through the fog of deceitful promises and threats used as part of a predatorÕs bag of tricks. The gullibility of people with MR is likely multiply determined, however, in that a lifetime of failure in complex situations makes one less conÞdent in oneÕs ability to persevere and more likely to passively follow the suggestions of others (Switzky, 1997). Thus, the gullibility of people with MR is likely a function of the interaction of primary cognitive limitations (e.g., credulity, or na¬ õve belief in deceptive claims, promises, or threats) and of secondary personality factors (e.g., external motivational orientation and low interpersonal self-efÞcacy). Criminal justice researchers, reßecting their sociological, i.e., context-oriented, training have tended to pay greater attention to group situational factors, such as victimizer behaviors, than to individual personological factors (such as victim characteristics) which contribute to, or protect against, victimization. However, there is research suggesting that victim characteristics are important predictors of victimization. Sparks (1982) described six victim characteristics which increase oneÕs likelihood of being victimized: (a) ÒprecipitationÓ(comments or actions which are likely to provoke an offender), (b) ÒfacilitationÓ (behaviors which expedite an offense), (c) ÒvulnerabilityÓ(actions which place one in harmÕs way), (d) ÒopportunityÓ(a failure on the part of the victim to recognize and avoid the danger in a situation), (e) ÒattractivenessÓ(a characteristic of the victim which makes him a good target, such as having money which can be stolen), and (f) ÒimpunityÓ(a characteristic of the victim which lowers likelihood of being caught, such as a victimÕs inability to be an effective or willing witness). All six of these victim characteristics, with the possible exception of attractiveness (although people with MR increasingly live independently and possess exploitable resources), are typically present in people with MR. Many of these, somewhat overlapping, characteristics involve social-cognitive limitations (e.g., poor perspective-taking skills) as well as temperamental characteristics (e.g., timidity) that are commonly found in persons who have MR. Although Sparks (1982) did not frame these characteristics in terms of how they relate to the speciÞc demands of a victimization scenario, it is not much of a stretch to argue that credulity and gullibility are involved in most of these.
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It must be acknowledged, however, that the role of credulity and gullibility in the victimization and everyday vulnerability of people with MR is anything but an established fact. Our belief in the importance of credulity and gullibility stems mainly from personal experiences as well as from conversations with knowledgeable service providers and family members. In fact, there is essentially no empirical literature on credulity and gullibility in persons with MR or related disorders, or at least we have been unable to locate such a literature. The situation with respect to the normative social sciences literature is a little better, however, with several investigations of gullibility but with almost no research speciÞcally dealing with credulity. Most of the research on gullibility has focused on the social psychology of gullibility, as exempliÞed by the so-called ÒBarnumeffectÓ(Layne, 1979), in which people portraying themselves as scientists will usually be able to trick others into believing bogus statements. There has been an almost complete absence of research into individual difference aspects of gullibility, however. This is somewhat surprising, given the extent to which the term is used in everyday parlance to describe individuals. In fact, one would be hard-pressed to think of another commonly used personality construct where the gap between frequency of everyday use and frequency of scientiÞc citation is so large. Given the relative absence of research on gullibility and credulity in persons with developmental disorders, or as an aspect of individual variation, this chapter is more of a propadeutic, and less of a research review, than we would wish it to be. In the pages that follow, we shall attempt to do the following: (a) present a comprehensive theoretical model of social adaptation, which integrates cognitive, motivational and contextual variables, and which can be used to explain why people with developmental disorders are more likely to demonstrate gullibility in the face of manipulative ploys; (b) discuss the various ways in which credulity and gullibility manifest themselves in the everyday world; (c) locate gullibility and credulity in current scholarship about cognition and personality; and (d) discuss possible future applications of this model for the study of people with MR and related disorders.
II.
A PROPOSED MODEL FOR EXPLAINING GULLIBLE BEHAVIOR
It is our belief that gullible behavior is multiply determined and thatÑin line with the principle of equiÞnality (Ford & Lerner, 1992)Ñone can achieve a gullible outcome through different pathways and through different causes (or a combination of causes). In keeping with our view that MR is a category deÞned (or, more accurately, which we believe should be deÞned) largely on the basis of social
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intelligence deÞcits (Greenspan, 1997), we have given central prominence to the role of credulity. However, it is obvious that people with MR (and many people without disabilities) are at risk for being exploited for any number of reasons, including secondary personality adaptations (such as compliance) that are commonly found in many people with MR. This chapter builds on previous writings by the Þrst author on aspects of social competenceÑparticularly social intelligenceÑin people with MR and related disorders (Greenspan, 1979, 1981; Greenspan & Driscoll, 1997; Greenspan & Love, 1997). Central to those writings is a comprehensive model of Òpersonal competenceÓwhich incorporates a wide range of ability domains that contribute to successful or unsuccessful adaptation to various everyday challenges. Two related deÞciencies of this model have been pointed out by Oppenheimer (1991), GranÞeld (1998), and others: (a) there is no speciÞc place in it for the role of situational factors and (b) it is essentially a static factorial model that describes people in terms of general traits or competencies/deÞcits and does not allow for the description or understanding of how people cope with speciÞc challenges or classes of challenges. In two related articles, initially in a book on adaptive behavior (Greenspan, 1999a) and more fully in a forthcoming book on motivational and personality processes in MRDD (Greenspan, in press), the model was changed from a static trait format to a dynamic ßow-of-behavior format. Essentially all of the major elements in the earlier model are contained in the current version, but (a) they are depicted in a linear rather than hierarchical fashion, with microsituations as inputs and speciÞc adaptations/maladaptations as outcomes; and (b) the model, although having implications for a broad range of social actions, is formulated here in terms especially relevant to understanding exploitative situations and gullible outcomes. A revised version of the (Greenspan, in press) formulation is portrayed in Fig. 1. Because of space considerations, the model is described only brießy here. This model is an adaptation of a similar model proposed by Martin Ford (1992) in a book on human motivation. However, the elements in FordÕs model have been modiÞed to make the model more relevant to depicting social/interpersonal outcomes and situations. FordÕs model was presented in a quasimathematical form, with an action outcome (such as compliance) portrayed as the sum or product of situational and personal elements, including ability level and motivational tendencies. The motivational piece in FordÕs model, which is an elaboration on BanduraÕs work on self-efÞcacy, has been kept largely intact in Fig. 1. A difference between Fig. 1 and an earlier depiction (Greenspan, 1999a) as well as FordÕs approach is that it is now portrayed as something approaching a PATH model, with variables connected linearly through arrows rather than through plus or multiplication signs. The elements in the model, with emphasis on how they contribute to an understanding of credulity and gullibility, especially in people with MRDD, is discussed brießy below.
FIG. 1. Proposed action model for explaining vulnerability to exploitation.
CREDULITY AND GULLIBILITY
A.
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Environmental Factors
Central to the developmental-contextualist metamodel in which we are operating is an appreciation of the importance of the social context to an understanding of how a social behavior comes to be adaptive or maladaptive. In the recent past, when people with MRDD lived and worked almost exclusively in highly staffed and segregated settings, victimization mainly occurred at the hands of staff or other consumers. Without meaning to downplay the horrors of such victimization, there are far more opportunities for victimization, particularly victimization that is targeted at oneÕs gullibility, in a time when people with MRDD are functioning quasiindependently in community settings. As indicated in Fig. 1, environmental factors have three elements: (a) the microsituation itself (e.g., someone being interrogated by the police); (b) factors that increase the likelihood of a gullible/compliant outcome (e.g., an interrogator being very insistent and/or using deceptive tactics, etc.) and (c) factors that minimize a gullible/compliant outcome (e.g., having another person, whether a lawyer, a disability advocate, or a family member, around to intervene or to advise the person of his/her rights).
B.
Intellectual Factors
In this chapter we make a distinction between gullibility as a social outcome (on the right side of the Þgure) and credulity as a cognitive tendency which contributes to that outcome. Credulity is portrayed as a component of a box titled Òeveryday intelligence,ÓwhichÑin line with earlier writings by the Þrst author (Greenspan & Driscoll, 1997)Ñconsists of two content domains: social intelligence (e.g., understanding of people and social processes) and practical intelligence (e.g., understanding of physical objects and processes). Although social intelligence is obviously more relevant than practical intelligence to understanding a social outcome such as gullibility, practical intelligence also contributes to gullibility, as deceptive exploiters often attempt to take advantage of a victimÕs limited understanding of physical phenomena. Thus, someone with no understanding of the physiology of breathing would be more likely to be credulous in response to a fake guru labeling certain symptoms as unique to spiritual enlightenment rather than a common sign of hyperventilation (Singer, 1995). We have adopted CattellÕs dichotomy of ÒßuidÓand ÒcrystallizedÓintelligence into the portrayal of everyday intelligence, an extrapolation suggested in an article by Jones and Day (1997). Fluid everyday, especially social, intelligence involves mainly what Greenspan (1979) labeled social sensitivity, i.e., the ability to accurately identify the state or meaning of a personal state or situation. There is no shortage of data suggesting that people with MRDD have limitations in social sensitivity. For example, they are poorer at perspective taking and thus may have difÞculty recognizing nonverbal or contextual cues which identify a situation as
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one involving deception or manipulation. Credulity (believing the unbelievable) comes into this model as an aspect of what Greenspan (1979) termed social insight (understanding of social processes or institutions). In Cattellian terms, this may be seen as a function of limitations in crystallized (experience-based) social intelligence. While people with MRDD are especially limited in ßuid social intelligenceÑa reßection of what Spitz (1988) termed the thinking as opposed to learning nature of MRÑthe y also have marked limitations in crystallized social intelligence in part because of limited opportunities for broad social experience (Zigler, 1961). Credulity comes into play in making people with MRDD more gullible in that they lack the content sophistication to recognize a lie as such. An example of this would be an interrogator threatening to put oneÕs wife in jail if one refused to cooperate or implying lenient treatment if one produced a confession. Limited understanding of the legal system would contribute to the tendency to believe such implausible statements, and limited understanding of how interrogators work (i.e., the central role of deception in inducing confessions) would make one more vulnerable to such tactics when they are used. C.
Physical Factors
While limited social intelligence is, we would argue, a universal characteristic of people with MRDD, physical impairments are often, but not always, found. Such impairments, when present, can contribute to gullible outcomes. For example, people with signiÞcant hearing loss are more easily manipulated socially, as reßected in the fact that Texas (a state not noted for concern for the rights of criminal suspects) has outlawed interrogation of people with hearing impairments without the presence of an advocate. Physical limitations, even when not severe enough to be considered disabling, do contribute to compliant outcomes in other ways, however. For example, interrogation sessions are often endurance contests, and someone who tires easily or is quite sensitive to hunger or other discomfort states, might be less able to persevere in a contest where sleep deprivation and creation of discomfort are often used to break down oneÕs will to resist. D.
Communicative Factors
In an earlier review of the literature on social intelligence (Greenspan, 1979), ÒsocialcommunicationÓwas included as one of three domains, along with Òsocial sensitivityÓand Òsocialinsight.ÓSocial communication involves particular social skills, such as referential communication, social problem-solving and assertiveness behaviors. In his multidimensional model, Ford (1992) treats such skills as separate from intelligence. Further reßection on the nature of social intelligence (Greenspan & Love, 1997) has convinced us that it is best to make a clear distinction between social intelligence as a cognitive, information-processing
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construct and social communication, including social skills, as an aspect of behavior or (pragmatic) language. Certainly, this distinction is supported in the behavior modiÞcation literature in which much of the work on social skills is grounded. In that literature, social skills are deÞned as socially valued behaviors, such as making eye contact or emitting a greeting, with little or no emphasis on social-cognitive underpinnings of such behavior. Social communication is, therefore, listed as a separate element in Fig. 1. One who possesses an extensive repertoire of social communicative skills and who can call on these skills with ease and ßuency has certain obvious advantages in dealing with novel social ploys of the kind used by coercive manipulators. In the absence of such skills and ßuency, one is more likely to give up and comply rather than to resist or divert. The relative absence of social communicative ßuency in people with MRDD likely contributes to those feelings of hopelessness and low social self-efÞcacy which are discussed below. E.
Motivational Factors
Switzky (1997) has argued that an ÒexternalÓand compliant motivational style is so universal a feature of children and adults with MR that it should be incorporated into the deÞnition. Even if one feels, as we do, that incorporating personality characteristics into a deÞnition of MR is likely to further muddle the meaning of an already muddled disability category, one cannot deny the argument that possessing a low IQ causes one to have a plethora of educational and social failure experiences and that these contribute to a tendency to seek guidance for how to behave from situtional cues which are typically ÒsocialÓin that they are derived from modeling the behavior of others. Such a motivational style, even if a secondary adaptation to, rather than a primary deÞning characteristic of, MR, obviously places one at risk of being credulous and gullible in socially coercive situations. The motivational piece of FordÕs model, which we have imported intact into our own, contains three components, which are reviewed brießy below. In translating the Þrst authorÕs static formist model of personal competence into a dynamic contextualist one, the Þrst two elements (goals and efÞcacy beliefs) are related to the earlier personality construct of Òcharacter,Ówhile the third element (affect/attention) is related to Òtemperament.Ó 1. GOALS/NEEDS One obvious motivator of a particular mode of action involves labeling or experiencing a situation as one in which that mode of action is appropriate or necessary. Thus labeling a situation as an informal socializing event calls for cooperation and agreeableness while labeling it as a socially coercive or dangerous situation calls for evasion and self-protection. Because people with MRDD are often lonely and socially needy, situations which are coercive often bring forth inappropriate
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cooperation responses. In terms of the work of Swizky (1997), Zigler (1961), Reiss (1999) and other motivation theorists, the high need of people with MR to seek social approval contributes obviously to gullible outcomes. 2. EFFICACY BELIEFS This element could also be termed, as Ford (1992) did, Òpersonalagency beliefs.Ó It refers both to the lack of conÞdence in oneÕs ability to carry out a particular task, similar to BanduraÕs notion of self-efÞcacy, as well as to the lack of conÞdence in the likelihood that a particular setting will respond to anyoneÕs efforts, no matter how skilled they might be. EfÞcacy beliefs are conceptualized fairly narrowly rather than as a general personality trait. Thus, Òsocialself-efÞcacyÓÑthe belief that one possesses the ability to be successful in inßuencing the actions of othersÑis the aspect of personal agency that is particularly relevant to the topic of gullibility. People with MR typically have a low sense of their own social self-efÞcacy and may also have a view that others are not likely to be inßuenced by social efforts. These beliefs are likely to contribute to a sense of hopelessness and resignation in coercive social situations. In other words, since resistance is likely to be futile, why not just give the other what he/she wants? 3. AFFECT/ATTENTION Coping with a coercive situation can be both cognitively and affectively challenging. Even if one labels a situation accurately as coercive, calls up various appropriate behavioral schemas, and believes in oneÕs own ability to cope with the situation, one must attain some degree of regulatory control over oneÕs emotional and attentional state if one is likely to prevail. People with a variety of emotional and behavior disorders have difÞculty with such self-regulatory processes, a problem whichÑbecause of neurological conditions or deviant upbringingsÑis also found in many people with MRDD. The terror that is created in coercive situations is disabling to many so-called ÒnormalpeopleÓand undoubtedly accounts for some of the compliant and gullible behavior of many people with MR. Affect also contributes to gullible outcomes in other ways. One way is when the exploiter knowingly taps a particular affective schema of the victim, as in a false confessorÕs fear of being executed (a common interrogative ploy) or in a fraud victim being inßuenced by a feeling of greed. People with disorders of the Òwill,Ó as in those who are chronically depressed, also are vulnerable to coercive efforts. Berrios and Gili (1995) provide a historical overview of the central role of ÒwillÓin pre-20th-century conceptions of psychopathology. They argue convincingly that the current emphasis on unconscious or involuntary aspects of mental disorder, and the consequent ignoring of the notion of impaired will, has deprived psychiatry of a powerful explanatory construct. In line with the general ignoring of gullibility in the psychiatric literature, Berrios and Gili (1995) do not speciÞcally mention gullibility as a behavioral outcome. However, it is not much of a leap from notions
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such as ÒabouliaÓ(weak, paralyzed, or depressed will) to the idea that people with psychiatric, particularly affective, disorders are less able to assert themselves in coercive or manipulative kinds of social encounters.
III.
REAL-WORLD MANIFESTATIONS OF CREDULITY AND GULLIBILITY
In this section, we explore various social phenomena, some of them pathological, in which excessive credulity and gullibility appear to play a role. These phenomena all involve varieties of victimization. Although these real-world manifestations of gullibility and exploitation affect people of varying levels of intelligence, a brief mention is made at the end of each subsection of case examples or literature pertaining to people with MRDD. This discussion lays the groundwork for an understanding of the possible role of credulity and gullibility as factors in human incompetence and the mechanisms which may contribute to that incompetence, particularly in individuals with developmental disorders. Space limitations, as well as lesser relevance to people with disabilities, prevent us from exploring a number of social phenomena which depend to some extent on credulity and gullibility. Among the topics which are not covered include political and commercial advertising (Van der Linden, 1991), therapist gullibility toward clients (Miller, 1986), therapist and client gullibility toward questionable therapies (Dawes, 1994), rumor transmission (Rosnow, Esposito & Gibney, 1988), tabloid journalism [especially of the kind sold at supermarket checkout counters (Hamilton, 1998)], and belief in quack medical treatments (Morawski & Hornstein, 1991). A.
Sexual Abuse
To understand why children, as well as many adults, become coerced into enduring or tolerating unwanted sexual relationships, it is necessary to examine the phenomenon at the level of the Òseductionscenario.ÓTo some extent this theme pervades this chapter, in that we believe that credulity and gullibility can be best understood by focusing on the speciÞc demand characteristics of actual exploitative situations. Such a microscopic approach is most likely to shed light on the inter- and intrapersonal challenges facing the targeted individual. The value of such an approach is illustrated in a somewhat related area, namely the study of risky sexual behaviors among teenagers. Byrne and Fisher (1983) found that nonuse of contraceptives by teens reßects their intrapersonal need to construe the sexual transaction in terms of externally imposed passion, e.g., ÒIgot carried away and couldnÕt stop,Órather than as an intentional and rationally deliberated action. Credulity enters in as well, as in the belief by teenagers in various peer-transmitted
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folk myths, such as that pregnancy cannot result from Þrst-time liaisons or when having sex standing up. ElkindÕs (1967) ÒpersonalfableÓnotion, i.e., the egocentric belief by adolescents in their own uniqueness and invulnerability, helps to explain such behavior as well. In terms of persons who are molested, the challengeÑe xcept in cases of physical forceÑis mainly interpersonal and often involves the need to deal with various false threats, inducements, and other psychological ploys. Inability to see through and know how to deal with these ploysÑin other words credulityÑis a likely major contributor to a sexually exploitative outcome. Hickson and Khemka (1999) explore the vulnerability of persons with MR to sexual and other forms of exploitation in light of limitations in Òdecision-makingÓcapability. Their work has particular relevance for development of preventative/innoculative interventions. Interventions aimed at inoculating children or disabled adults against molestation are usually aimed at a fairly global level, i.e., ÒdonÕ t get in a car with a stranger.Ó But seduction scenarios, like most interpersonal situations, are more complex and ambiguous, and molesters are usually quite skilled in the ruses that they use. Thus, a recent TV special showed children of widely varying ages getting in a car with a friendly stranger, an experimental confederate, who used the common ploy ÒIÕm looking for my dog and he will only come to me if a child calls his name.ÓWhen asked afterward by her mother why she got in the car, a 9-year-old girl, who had been warned repeatedly not to do such a thing, replied Òbut he was only looking for his dog.ÓAs with other inoculative interventions involving children, it is important to consider the limiting role of developmentally based social-cognitive processes. The basic credulousness of young children toward adults and their communicationsÑwhich Dawkins (1993) explains as an evolutionary mechanism through which cultural ÒmemesÓare transmittedÑthus ensures that they will always be vulnerable to sexual and other forms of exploitation by predatory adults. There is increasing evidence that sexual exploitation of people with MRDD is much more prevalent than has been realized. Although much of the literature has focused on physically coerced sexual assault (Furey, 1996), it is possible that psychologically coerced sexual assault is an even bigger problem. In a qualitative study involving women with mild and moderate MR, Black (1999) found evidence that a large percentage of respondents had been tricked or pressured into unwanted sexual contact. Reis (1998), in a study of young adult women with Williams syndromeÑa chromosomal disorder associated with mild or borderline MRÑ found that virtually 100% of them had been sexually abused by male peers or workers. Dykens (1998), conÞrming this Þnding, has attributed it to the extreme need to please which is an aspect of the Williams syndrome behavioral phenotype. While such affective and motivational factors undoubtedly are very important (see the multidimensional model depicted in Fig. 1), it should not be assumed that social-cognitive factors, such as credulity, are irrelevant. There is considerable research (Dykens & Hodapp, 1998; Rourke, 1995) suggesting that social deÞcits
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in people with various syndromes are typically more signiÞcant than their academic deÞcits. Furthermore, the tendency to think of social competence primarily in terms of agreeableness may blind observers to the very real social intelligence deÞcits of individuals (such as most people with Williams syndrome) who are extremely affable and verbally facile. B.
Humor and Practical Jokes
Listener credulity is a requirement for many forms of humor, particularly practical jokes. The Þrst author, for example, falls almost every year for the ÒApril FoolsÓstories on National Public RadioÕs ÒAll Things ConsideredÓpartly because of the consummate skill with which these are done and partly because it is in his nature to want to believe people (and partly because he usually is unaware of what day it is). Credulity, like other psychological variables, exists on a continuum in that even someone as gullible as the Þrst author thinks he has more sense, and background knowledge, than to have believed the NPR story about Mel Brooks discovering he was a Christian raised in a Jewish family. Sometimes, credulity toward humor has serious consequences. For example, the rebellion on the slave ship Amistad was apparently triggered by a macabre joking comment by the captain to the effect that he was fattening his human cargo up in order to cook and eat them. The slaves, in a highly anxious state and lacking linguistic and cultural understanding of such humor, took the joke literally and killed the captain and several crew members in the process of winning their eventual freedom (Pesci, 1997). In part because of their social intelligence deÞcits (and related inability to see through ruses) and in part because they may be starved for attention by higher status peers (and thus very responsive to such ruses), persons with cognitive impairments appear to be frequent targets of practical jokes. That this can have serious consequences was shown by an experience the Þrst author had while visiting an elementary school. The visit was a consulation around a 9-year-old child with Dandy-Walker syndrome, a congenital brain malformation associated with hydrocephalus and loss of cerebellar tissue (Greenspan, 1998). While the boy had relatively adequate academic skills, in line with his borderline IQ, the main threat to his integrated educational placement came from the ceaseless practical jokes to which he was subjected by the other third-graders. To quote his teacher, he was Òthemost gullible child I have ever laid eyes onÓand this gullibility made him an attractive target for practical joking by peers. C.
Cult Membership
The cult phenomenon, particularly the HeavenÕs Gate tragedy, in which 38 apparently competent adults were persuaded by their leader, Marshall Applewhite,
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to commit suicide in order that they could be picked up by a spaceship, has triggered a new interest in credulity and the problem of excessive gullibility. Journalist Timothy Ferris (1997) put this well when he wrote Òstrippedto its essentials, the question of what happened at Rancho Sante Fe looks less like a psychopathological riddle and more like an object lesson in the hazards of living a life innocent of empirical rigor. ItÕs hard to avoid the reßection that the mass suicide might have been averted had just one of the observers declared ÔGee,the evidence fails to support our belief. Maybe the belief is wrongÓÕ(p. 31). Related to the problem of cult membership (because many cults have a therapeutic component organized around certain magical beliefs) is the popularity of various ÒNew AgeÓpractices which run counter to traditional rational or scientiÞc beliefs. These cover a wide range of topics including paranormal phenomena (e.g., psi and ESP), alternative health therapies (e.g., homeopathy and ÒnotouchÓ massage), Eastern spiritual practices (e.g., transcendental meditation and use of crystals), and psychotherapeutic mysticism (e.g., Jungian analysis and repressed memory). Credulity is of central importance in explaining adherence to these beliefs both in that (a) participants are usually recruited by charismatic advocates and (b) these practices typically lack either adequate rationales or convincing evidence of efÞcacy. As reßected in the late-19th-century book Credulities Past and Present (Jones, 1880/1968), concern about susceptibility of naive individuals to magical beliefs is hardly restricted to current times. For every current credulity, an ancient parallel can be found. Thus cold fusion can be compared with alchemy, homeopathy with therapeutic bleeding, and so on. The difference, of course, is that we now live in an age where three earlier conditions that encouraged magical beliefs are greatly reduced (at least for scientiÞcally literate people): (a) anxiety about pervasive untreatable disease and likelihood of early death, (b) ignorance of natural biological or physical processes, and (c) lack of methods for systematically evaluating treatment outcomes. For a variety of reasons, however, there are many people who are highly credulous toward dubious New Age beliefs in both their benign (noncultish) or malevolent (cultish) forms. These reasons (which are discussed more fully later) include (a) ignorance, either because of youth or naivite, about what is known about natural processes; (b) limitations in ÒreadingÓor understanding manipulative intentions of others; (c) limited capacity or willingness to use logic in evaluating ßawed claims; (d) dependent and easily suggestible personalities; and (e) preexisting tendencies toward superstition and magical thinking. One could, of course, ask the questions ÒdoesnÕ t credulity also underlie mainstream religious beliefsÓ(such as the belief in Heaven which pervades most modern religions) and Òwheredoes one draw the line between normal and pathological varieties of religious credulityÓ?For example, the HeavenÕs Gate cult members referred to their commune as a Òmonastery,Óconsidered their leader to be a messiah,
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and shared many devotional practices (such as sexual abstinence and a spartan lifestyle) with more mainstream religious sects. It was even pointed out by Chauncey (1997) that the practice of castration among some HeavenÕs Gate members has parallels in Christianity, most notably in the early great church leader Origen. Were it not for their self-destructive ending, and such other features as isolation from family and past relationships, what basis would there be for differentiating this group from more traditional forms of religious practice? More to the point, why is a religion organized around belief in UFOs any more incredible, and more demanding of credulity, than a religion organized such equally unveriÞable ideas as belief in God and the various miracles attributed to God by mainstream religions? One obvious difference between Heavens Gate and, say Christianity, is that credulity about an afterlife for Christians isÑas pointed out by the philosopher Blaise PascalÑa safe bet in that one has everything to gain from believing in it if it is true and nothing to lose from believing in it if it is untrue. Acting on that belief, as in the mass suicide of Heavens Gate members, however, is anything but a safe bet and requires an extraordinary degree of uncritical trust. With the exception of religions based on philosophical or ethical systems and which lack a magical/mystical core, all religious belief, as opposed merely to practice based solely on habit, involves a partial suspension of skepticism and a demonstration of some degree of credulity, i.e., blind faith, toward core assumptions and beliefs. The idea that credulity underlies both cultic and mainstream religious belief was stated strongly by Dawkins (1993), when he wrote ÒIhave already alluded to the programmed-in gullibility of a child, so useful for learning language and traditional wisdom, and so easily subverted by nuns, Moonies and their like...Ó(p.18). DawkinsÕideas about the evolutionary and epidemiological processes which make people susceptible to exploitative religious and other ideas are explored more fully in a later section. Interestingly, the idea of credulity as a problem for believers is inherent in Christian notions of the devil, a notion which resulted in the Þrst compulsory education legislation in America in the Massachusetts Bay Colony with the ÒSatan the Great Deceiver ActÓ (Starkey, 1973). Initially, the main purpose of public education in America was, thus, not to prepare people for the practical challenges of adult life but rather to make them less gullible in the face of the devilÕs lies and temptations. The notion of the devil as one who preys on the gullible and credulous is still very much alive, as in the preachings of fundamentalist Christians such as the Reverend Jerry Fallwell. In spite of efforts, such as postings on various electronic bulletin boards, we have been unable to identify either a body of literature or case examples suggesting that cult membership is a signiÞcant problem for people with MR. This is obviously different, however, for people with mental illness (or perhaps less obvious developmental disorders, such as severe learning disabilities), as there is a substantial
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literature suggesting that large numbers of cult members have borderline personalities and lack intellectual sophistication (Singer with Lalich, 1995). The relative absence of cult participation by people with MR may reßect situational factors, such as being less attractive to cults, or the presence of paid or natural benefactors in protective roles rather than the personal factors that are being emphasized in this chapter. It may also be that because participation in dubious New Age practices is becoming so prevalent in the popular culture that this is an aspect of risk where people with MRDD do not look particularly deviant or deÞcient. D.
Scams and Frauds
Perhaps the most common social pathology associated with credulity and gullibility involves the use of various sales ploys, some legal and others fraudulent, intended to separate people from their money. Particular interest in this problem has been shown by gerontologists concerned about the vulnerability of elderly adults to such schemes and the extent to which, because they often live alone and often have considerable money and other valuables, they are targets of such exploitation (Kosberg, 1983; Pillemer & Wolf, 1986; Quinn & Tomita, 1986). Almost one-third of crime victims are elderly, with fraud being one of the largest crime categories, according to late Congressman and elder advocate Claude Pepper (1983). Examples of such fraud abound. For example, in a recent case in Connecticut, an executor was settling the estate of an elderly woman and discovered that the decedent had subscribed to dozens of magazines that she could barely afford and that covered topics in which she was not known to have any interest. Such magazine subscriptions are often sold as part of Sweepstakes promotions, which use misleading advertising practices (such as statements giving an impression that one is guaranteed a payoff if one subscribes) that pose a challenge to naive and trusting persons. In extreme cases, such as another Connecticut case which we learned about recently, elderly persons have been defrauded of tens of thousands of dollars in bogus subscription schemes run by conÞdence artists. Such fraud can take other forms, such as home repair scams run by bands of crooks who prey on older home owners. Malicious fraud can take many forms, however. Two such examples known personally to us involved an elderly man in NebraskaÑlater found to have AlzheimerÕsÑwho was talked by a neighbor into selling the family farm for a pittance (rather than leave it, as planned, to his children) and an elderly woman in Florida who was talked into loaning family heirlooms (never to be seen again) to a stranger who promised to return them after having them appraised. The legal deÞnition of fraud involves Ò. . . depriving another of his personal property by trick, deceit, stealth, or false representation with intent to keep the money thus obtained and convert it to oneÕs personal useÓ(Pepper, 1983, p. 69). One plausible explanation for the vulnerability of elderly people to fraud is the
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possibility that they become increasing credulous as they enter old age. In line with the antipathology, and particularly antipsychology, bias of gerontology scholars and policy makers, this potential source of fraud vulnerability has been largely ignored. Explanatory emphasis, as in the paper by Block (1983) on the vulnerability of elderly women, has been mainly on contextual factors such as lack of social supports (e.g., departed spouses and peers), existence of targetable resources (e.g., life insurance proceeds), and cohort differences (e.g., having grown up in a more trusting time). Without denying the importance of contextual factors to any particular gullibility outcome, an analysis of the various fraud scenarios that we have observed or read about suggests a strong credulity component. This, in itself, is not speciÞc to aging people, as successful fraud and deception, regardless of a victimÕs age group, always requires some degree of credulity, except in (less common) cases of physical or psychological terrorization. Thus, for some aging persons, extreme credulousness may have been a life-long pattern rather than something that emerged in old age. Even if data suggested the average aging person does not become more credulous, however, it is probably the case that there is a sizeable subgroup of aging persons, perhaps the most victimized, who are more credulous as a result both of age-related decline in cognitive capacity as well as of possible secondary personality changes, such as adoption of a submissive style, that are adaptations to that decline. Because persons with MR typically are poor, and often live in congregate arrangements, they are less likely than are older ÒnormalÓpeople to be targeted by scam artists. However, people with MR increasingly live in their own homes with minimal supports, and it is our experience that inability to say ÒnoÓboth to legitimate phone solicitors (for example, selling newspaper subscriptions) and to small-scale exploiters (e.g., tricking a woman into using her SSI check to pick up a large tab at a restaurant) can cause serious problems for such individuals. One poignant example involved a married couple, both of whom had mild MR, who had their children taken away from them in part because the father was tricked into putting all of their money into a questionable money-making scheme. E.
False Confessions
Credulity has great relevance for understanding false confession in that interrogation sessions typically involve multiple forms of deception (Ofshee & Leo, 1997). False claims and threats can take many forms, such as that physical evidence points to oneÕs guilt, others have implicated one, confession will result in lenient treatment, lie detector evidence suggests that one committed a crime even in the absence of conscious memory, failure to confess will cause removal or incarceration of oneÕs children or family members, and so on. Highly credulous
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people, including many people with developmental disabilities, are at increased risk for giving false confessions because of their difÞculty in seeing through such deceptions and in dealing with the pressures and anxieties associated with being interrogated. Although there is a long-standing literature on false confession under extreme conditions, such as prisoner-of-war camps (Meerloo, 1956), recent psychological literature has focused on false confession in more routine circumstances, such as in typical police interrogations (Kassin, 1997). This phenomenon has been studied from the standpoint of clinical assessment (Gudjonsson, 1992) and as a social psychological phenomenon (Ofshe & Leo, 1997). From either standpoint, there has been alarm expressed at the extent to which people lacking serious psychopathology are vulnerable to falsely confessing, with emphasis on those personal characteristics (e.g., dependency, hypnotic or general suggestibility, and lower intelligence) that make people particularly vulnerable (Clare & Gudjonsson, 1995). There has been much attention paid to the physical (e.g., sleep deprivation) and emotional (e.g., terror-induction) demands of interrogation situations (Gudjonsson, 1992) as explanations for false confession. However, perhaps paralleling the general overemphasis on noncognitive aspects of social functioning (Greenspan, 1981), there has been relatively little attention paid to the intellectual challenges involved in coping with the threats and inducements that one faces in an interrogation situation. Gisli Gudjonsson, a psychologist who was formerly a police detective, is probably the leading investigator into the phenomenon of false confessions. He has devised a ÒsuggestibilityÓmeasure that taps the ease and extent to which one changes an account of a listened-to story in response to increasing pressure from an examiner. Several studies using this measure have noted that people with even mild intellectual impairments (IQs in the 80s) are more suggestible, a result which Gudjonnson believes places them at increased risk of being coerced into giving false confessions in real-life interrogation situations. Several notable cases have been described by Perske (1991) and others involving people with mild MR who were convicted of murder, in a few cases such as that of Missouri resident Johnny Lee Wilson, which were later overturned on the basis of probable innocence. Suggestibility is approached by Gudjonsson as a personality construct, related to but different from hypnotic suggestibility. It is viewed as an indictor of oneÕs degree of conÞdence in oneÕs ideas or perceptions and oneÕs willingness to resist having oneÕs ideas or perceptions challenged. People with intellectual limitations are more suggestible in a complex situation such as a police interrogation (or being tested on his scale), according to Gudjonsson, because of a kind of fatigue factor involved in dealing with social or intellectual complexity. In this sense, suggestibility might be considered to have more in common with motivational constructsÑsuch as BanduraÕs (1997) notion of self-efÞcacy or Roy BaumeisterÕs (1993) notion of selfÑthan with a social-cognitive construct like credulity. Without
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denying the role of motivation in gullible actions such as false confession (see Fig. 1), it may be that there is a major social information-processing component to the Gudjonnson suggestibility scale (GSS). This possibility is indicated by the Þndings of a study by Driscoll (2000) in which adolescents with MR and with autism were signiÞcantly impaired in their ability to make sense of videotaped portrayals of young people being interrogated, and making suggestible changes, in a manner similar to that shown by people taking the GSS. Thus, individuals with developmental disabilities are doubly handicapped when interrogated because they have difÞculty understanding the ploys being used and because they have a motivational style characterized by compliance and reliance on external cues.
IV.
LOCATING GULLIBILITY AND CREDULITY IN A LARGER SCHOLARLY LITERATURE
In this section, we discuss various psychological or sociological processes that are directly or indirectly relevant to understanding credulity and gullibility in persons with or without developmental disabilities. Many of the subtopics covered in this section can be integrated into the proposed conceptual model of gullibility which was presented earlier in this chapter. A.
Gullibility as a Form of Trust
Because gullibility involves a fair amount of interpersonal trust, it is likely that people who are very trusting might be more gullible than people who tend to be suspicious of the motives and statements of others. Because highly intelligent people appear to be less gullible than people of lower intelligence, it has been argued that intelligence and interpersonal trust are negatively correlated, with brighter people being less trusting. Julian Rotter (1980) one of the leading researchers interested in trust, believed this to be an oversimpliÞcation, and set out to demonstrate experimentally that gullibility is less a function of trust per se than of the interaction between high trust and low social intelligence. In one experiment conducted by Rotter, subjects categorized as high or low on trust, according to their scores on RotterÕs interpersonal trust scale, were asked to manipulate a piece of equipment which appeared to be throwing off sparks. The experimenter did an unconvincing job of Þxing the machine and assured the subjects, again unconvincingly, that it was Þxed and safe to use. In that situation, bright people who in more ambiguous situations might have given the confederate the beneÞt of the doubt were likely to say Ònoway.Ó For Rotter (1980) gullibilityÑin this situation, being talked into handling an apparently unsafe deviceÐisnot an index of trust per se but rather of ÒfoolishÓor ÒnaiveÓtrust. He noted that Òwhengullibility is deÞned as naivet« e or foolishness
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and trust is deÞned as believing others in the absence of clear-cut reasons to disbelieve, it can be shown over a series of studies that high trusters are not more gullible than low trustersÓ(Rotter, 1980, p. 1). For Rotter, naivit« e or foolishness refers to something very much like what we are calling credulity, namely a tendency to believe in a person or event even when there is sufÞcient reason to exhibit healthy skepticism. While foolish trust could, obviously, be attributed to social cognitive limitations (in the experiment described above, failing to pick up on relevant danger signs), it is also possible that gullible people have an affectively-based need to cooperate that is so strong that it overrides or short-circuits their social-cognitive processes. Rotter (1980) suggested such an explanation when he argued that there is some evidence that gullible people score quite high on measures of ÒdependencyÓand on other related indicators, such as having an external locus of control. B.
A Piagetian Formulation of Gullibility
Although Rotter makes a case for viewing gullibility as a form of foolishness (i.e., credulity), he does not provide an explanation for the sources of such credulity. In the context of the experimental paradigm that he used, a ÒgullibilityscenarioÓ might be analogized to a Piagetian conservation experiment, where (in this case) the task is to conserve oneÕs perception of a situation as unsafe or unsavory against those affective forces, e.g., respect and trust of people in lab coats, fear of offending or being punished, and desire to live up to oneÕs commitments, which pull for a reluctant Òok.Ó This scenario is found in other social psychology experiments involving deception, most notoriously in the famous Yale obedience study conducted by Stanley Milgram (1963). The Milgram experiment differs from the Rotter experiment in three ways: (a) the danger was to an (unseen) other person rather than to the subject; (b) the subject was told that the person would be shocked, but the assurance was that he would not be harmed (rather than given shaky assurances that the device was safe); and (c) pressure was put on the subject to continue participating even after reluctance to do so was expressed. This last factor, paired with the fact that the experimenters in the Milgram study acted in an authoritative and conÞdent, rather than uncertain and bumbling, manner made the conservation task (saying ÒnoÓ)in the Milgram study more difÞcult for subjects. The Milgram experiment, thus, engineered a more ecologically valid model of the gullibility of even smart people in the face of authoritatively carriedout conÞdence scams. Because the violation of trust was so blatantly analogous to real-world exploitation and because of the gross insensitivity to the wishes and well-being of subjects, the Milgram study has been widely condemned as unethical, even by researchers who do not have a problem with the use of deception (Baumrind, 1964). Social psychology experiments such as MilgramÕs (1963) are
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designed to demonstrate a contextual effect (the ease with which most people can be coerced into acting badly) and no effort was made, to our knowledge, to understand why a few heroic individuals were ÒsmartÓenough to walk out of the Yale study. Such a question, if addressed, would have made the study much more interesting and worthwhile as a means to understanding the factors which make for strength, as well as vulnerability, in the face of deceptive violations of trust. Interestingly, in one of his only articles dealing with affective development, Piaget (1981) wrote of ÒcharacterÓ(e.g., a youth doing his homework while tempted to go outside and join his friends) as analogous to a conservation situation in which the task is to conserve a long-term goal (e.g., getting into a good college) in the face of short-term temptations (e.g., playing with friends). Such an analogy would appear relevant to the challenge of resisting the psychological ploys used in most gullibility situations. C.
Credulity as an Evolutionary Mechanism
Biologist Richard Dawkins (1993) proposes an evolutionary mechanism to explain the phenomenon of vulnerability in the face of exploitative communications. Using the concept of ÒmemesÓ(socially transmitted beliefs) as postulated in his earlier work (Dawkins, 1989), Dawkins argues that credulity is a preprogrammed mechanism, shaped by evolution, enabling a child to soak up language, information, and essential cultural practices. Dawkins argues that this wired-in mechanism, so essential for socialization of human beings, leaves the immature person highly susceptible to invasion by the toxic memes transmitted by leaders of cults and fanatic religious groups. Dawkins uses the analogy of viruses, of both the biological and computer variety, to explain how malignant memes can take over and subvert a credulous person. He identiÞes Ò. . . two qualities that a virus, or any sort of parasitic replicator, demands of a friendly medium. These qualities are, Þrstly, a readiness to replicate information accurately, perhaps with some mistakes that are subsequently reproduced accurately; and, secondly, a readiness to obey instructions encoded in the information so replicatedÓ (1983, p. 19). DawkinsÕs view of cultish memes as Òvirusesof the mindÓis explored further in a recent popular book with that title (Brodie, 1996). Dawkins argues that human brains, while not as perfect duplicators as biological cells or electronic computers, nevertheless are Òpretty good, perhaps about as faithful as an RNA virus, though not as good as DNA . . .Ó(p. 19). Willingness of humans to follow coded instructions, although also imperfect (as reßected in resistance of many to toxic memes) is still substantial, as reßected in such things as (a) the speed at which Òcrazes,Ósuch as wearing a baseball cap backward, spread; (b) the fact that the vast majority of people follow the religions of the culture in which they were raised; and (c) the fact that the cult phenomenon is so widespread.
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Writing of the PeoplesÕTemple cult, where extreme exploitation of followers by its leader, Jim Jones, such as the ßagrant use of both male and female followers as sexual objects, culminated in the suicide-murder of 900 followers in ÒJonestown,Ó Guyana, Dawkins notes that Òwhatis remarkable about the Reverend Jim Jones is not his own self-serving behavior but the almost superhuman gullibility of his followers. Given such prodigious credulity, can anyone doubt that human minds are ripe for malignant infection?Ó(1993, p. 24). Dawkins argues that Òhumanminds, especially perhaps juvenile ones, have the qualities that we have singled out as desirable for an informational parasite. At the very least the mind is a plausible candidate for infection by something like a computer virus, even if it is not quite such a parasiteÕs dream-environment as a cell nucleus or an electronic computerÓ (1993, p. 20). As a broad framework theory, DawkinsÕformulation is quite interesting. However, it lacks a developmental perspective, particularly any discussion of the likelihood that development of skepticism, particularly after the critical rapid early meme-acquisition period, is an equally, if not more important, evolutionary mechanism. Such a mechanism, we would argue, is necessary for the survival of mature organisms in a modern world in which danger is more likely to come from psychological than physical threats to oneÕs well-being. D.
Credulity as a Specific Learning Disability
Stanovich (1993) has argued that a logical consequence of using IQ achievement discrepancy as the basis for deÞning learning disabilities (LDs) is that any newly identiÞed deÞcit that is incongruent with oneÕs IQ can be used to form the basis for a new form of LD. To illustrate his point, he coined the term ÒdysrationaliaÓto cover individuals of normal IQ who are highly credulous in their willingness to believe nonsense. Examples of dysrationalia given by Stanovich are (a) that two former schoolteachers in Illinois who, believing claims that the Holocaust never happened, sent 6000 letters (presumably one for every 1000 mythical murdered Jews) to local parents to protest the requirement that the Holocaust be discussed in the history curriculum; (b) that a signiÞcant percentage of members of the Canadian Mensa society (a club whose membership requirement is a high IQ score) revealed in a survey that they believe in astrology, biorhythms, and extraterrestrial visitors; (c) that German philosopher Martin Heidegger, who, despite being a world-renowned intellectual, was a Nazi apologist who signed his correspondence ÒHeilHitlerÓ; and (d) that famed British physician and detective writer Arthur Conan Doyle, who, despite portraying Sherlock Holmes as a paragon of reason, was Òanotorious dupe for mediumsÓ(p. 504), etc. Stanovich acknowledges that such a learning disability should be diagnosed only when irrationality is a stable trait rather than a momentary state ßuctuation. While causes of dysrationalia, like other LDs, may not be known, possible mechanisms
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suggested by Stanovich involve such processes as Òprematureclosure, belief perseverance, lack of motivation for generating alternative explanations, and absolutist orientation toward knowledge, resistance to new ideas, dogmatism about beliefs, and lack of reßectivenessÓ(p. 504). Sternberg (1993), in a response to Stanovich, argues that what Stanovich thinks of as illogic, he prefers to think of as low practical intelligence. Stanovich, while arguing that illogic is broader than practical intelligence, responds to Sternberg by essentially saying, ÒÞne,letÕs call the LD ÔdyspracticaliaÕ if that will make you happy.ÓStanovichÕs article has a tongue-incheek quality and is used to cast doubt on the LD concept, particularly when based on IQ achievement discrepancy formulas, more than to make a serious case for what we might term Òdyscredulia.Ó Nevertheless, it is probably the case that persons with certain kinds of LDs are more than usually credulous and gullible. The term Ònonverbal learning disabilitiesÓ(NLD) refers to persons with normal verbal skills who have deÞcits in nonverbal areas such as arithmetic calculation, Þne motor coordination, and social skills. It has been proposed that many early brain syndromes or conditions (such as hydrocephalus) place children at high risk for NLD, even when overall IQ is normal (Rourke, 1995). It has even been proposed (Semrud-Clikeman & Hynd, 1990) that autisticlike disorders represent a point on a broad continuum of NLD conditions. Although considerable concern has been expressed about the poor social outcomes of individuals with NLDÑparticularly their lack of friends, marginal employment success, and resulting depression (Rourke, 1995), there has been little attention paid to the speciÞc nature and sources of such social incompetence. There is considerable case evidence, however, suggesting that low social intelligence, and speciÞcally high credulity and gullibility, may lie at the heart of the poor social outcomes of children and adults with NLD (Greenspan & Love, 1997). Two cases illustrating the unusual credulity and gullibility in persons with NLD are (a) a young adult with Asperger-like NLD whose obsessive newspaper collecting was becoming a problem for his parents, with whom he was living. Although this young man has a normal IQ (and some college credits), he unquestionably accepted highly implausible lies (e.g., Òthey were eaten by paper mitesÓor Òthey spontaneously combusted and were thrown out by the Þre departmentÓ)when he questioned his parents after they secretly threw out some of his newspaper collection; and (b) a recent tragic Pennsylvania case involving an adolescent girl described in the newspapers as having a Òsevere learning disabilityÓÑin our experience, a euphemism for being a Òslow learnerÓor having NLD. This girl, who lacked friends, was suddenly befriended by a group of older adolescents who suspected her of having snitched to the police about their drug use. They lured her to a wooded area, where they suggested that it would be fun to reenact a scene in a movie where someone was hanged. Each of the group members put the rope (tossed over a tree) around their neck and took it off. When it was the gullible
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victimÕs turn to put the rope around her neck, some of the group members then pulled the rope tight, causing the young womanÕs death.
E.
Credulity as a Form of Psychopathology
Schumaker (1990), building on the work of Kallman (1981), suggests that highly credulous people, particularly those who hold various paranormal beliefs, suffer from a form of psychopathology which Kallman dubbed Òmonoideistic.ÓAccording to Schumaker (1990), these disorders involve Òproblemsof misdirected suggestibilityÓ(p. 109), which Ò. . . are best understood in the context of our ÔtheologicalÕnaturesÓ(p. 109). This is related to BeckerÕs (1973) notion that some forms of mental illness can be understood as a form of private or substitute religion that serves to make reality narrower and more manageable. For Becker, such a constriction of reality, i.e., self-deception, is a necessary part of normal adaptation. Where it becomes problematic for those who are highly credulous (i.e., monoideistic) is when it is taken too literally and becomes controlling and restricting, rather than self-regulating and expanding, and interferes with, rather than enhances, everyday social and nonsocial adaptation. For Schumaker, as for Becker, the pathology in such a distortion of a normal adaptive process is not that it involves self-deception, which is involved in many healthy adaptations, including mainstream religious worship, but that it involves a particularly crude and destructive form of self-deception. Schumaker (1990) argues that people with monoideistic disorders are highly suggestible (he even argues that the credulity invokes a trance state), but that once they buy into their Òclumsy lie,Ó their excess free-ßoating suggestibility becomes bound up with this belief system and they can appear quite resistant and closed to suggestion. While this can give the impression of a dramatic personality transformation (i.e., from malleability to rigidity), Schumaker argues that the same personality dynamic, high suggestibility, is still operating. The relationship between credulousness and skepticism in people who have a suggestion-related mental illness is perhaps best seen in individuals with paranoia, a condition that Schumaker includes under the rubric of monoideistic disorders. Because the paranoid style involves suspicion and distrust, one might assume paranoid individuals to be low on credulity. In fact, such individuals likely possess a combination of extremely high credulity for some things and extremely low credulity for others, depending on the relationship to their delusional system. An example would be someone who believes in a Jewish conspiracy to undermine the government and economy of the United States. Persons holding such a belief are likely to be very distrustful of anything they interpret as said by or on behalf of Jews and extremely credulous towards anythingÑno matter how shakyÑcon veyed by fellow conspiracy buffs or that support their belief system.
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Credulity and Everyday Illogic
As part of the shift toward use of a ÒcontextualistÓparadigm in psychology (Rosnow & Georgoudi, 1986), there has been increasing interest in Òeveryday cognitionÓ(Rosch, 1988). Various psychologists have begun to address a mystery critical to understanding credulity, namely why people of apparently normal, or even superior, intelligence can be so fallible in their attempt to understand everyday phenomena. Central to this process, as pointed out by Inhelder and Piaget (1958) in explaining the sporadic use of ÒformaloperationsÓ(propositional logic) are the short-circuiting role of affect, the varying demands of different content areas, and the ambiguous and hidden nature of many everyday (especially social) phenomena. British psychologist Peter Wason has been the leading proponent of a theory of cognitive functioning which holds that Òpeopleseldom, if ever, reason in accord with the norms of logic, but instead deploy various nonlogical shortcuts (heuristics) and prefer certain outcomes to others in deÞance of the norms of decision making (biases) and that much of what passes for thinking is really just the accessing of memoryÓ(Leahey, 1997, p. 261). In various experiments, Wason has shown that an almost universal inclination, with particular relevance to understanding credulity, is the ÒconÞrmationbias,Ónamely the tendency to look for evidence to prove a rule true rather than false (Newstead & Evans, 1995). Gilovich (1991) has explored this and other sources of everyday illogic in a bookÑ How We Know What IsnÕt SoÑwhose title has special relevance to understanding credulity. He pays particular attention to the various affectively driven mechanisms (particularly the cognitive styles of ÒlevelingÓ and ÒsharpeningÓ) used to delude oneself into believing in the existence or rightness of a particular phenomenon or relationship. Baron (1994), Piattelli-Palmarini (1996), Gilovich (1991), Wason (1977) and other writers on everyday illogic have shed light on the credulousness of many intelligent people in the realms of politics, religion, human service practices, or even science (as in the case of an otherwise brilliant colleague of the Þrst author who refuses to consider any evidence disputing his long-standing belief in ÒgÓand the heritability of intelligence) and why such individuals are very unlikely to have those views changed by arguments or evidence presented by others. It also explains why people who are open to adopting new beliefs can be persuaded by evidence which others might consider less than convincing. The theory of cognitive dissonance, which involves selective use of information to support a cognition or belief in which one has an affective investment, has also been used to explain continuing credulity, even in the face of strong disconÞrming evidence. In their book When Prophecy Fails, Festinger, Riecken, and Schacter (1956) used that theory to explain the continued existence of a cult, eerily prescient of the HeavenÕs Gate group, that survived a failed prediction that a spaceship would pick them up on a speciÞc date (it should be remembered that HeavenÕs Gate had also survived a similar earlier failed speciÞc apocolyptic prediction). Festinger
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et al. (1956) used cognitive dissonance theory to explain why commitment to this cult, rather than being undermined, was actually strengthened as a result of the failed prophecy. Illogical thought processes have also been implicated in superstitious beliefs, a category of ÒmagicalthinkingÓthat involves considerable credulity. In a recent book on the psychology of superstition, Vyse (1997) reviewed various theories and research studies that have attempted to shed light on the processes underlying superstition and magical thinking. Magical, or precausal, thinking was demonstrated by Piaget (1960/1929) over 60 years ago to be a characteristic of young children, and several more recent studies have veriÞed and expanded his Þndings. Subbotsky (1994), for example, asked children ages 4 to 6 to state their beliefs about the permeability of a solid object and the reversibility of complex processes, such as turning back into a younger child. Almost all of the children revealed their disbelief in these magical processes. However, Òunderthe inßuence of a fairy tale and an adultÕs instruction, the majority of 4- and 5-year-olds revealed credulity toward such unusual properties of space and time both at the level of practical actions and at the level of verbal judgmentsÓ(Subbotsky, 1994, p. 97). This tendency to slip into magical thinking under pressure of credible adults has obvious implications for understanding the credulous behavior of older children and adults with developmental disabilities who are functioning in a manner equivalent to children at earlier cognitive-developmental stages. G.
Credulity as a Function of Lack of Knowledge
In addition to oneÕs ÒßuidÓlevel of everyday logic (or illogic), another factor that likely contributes to credulity is oneÕs ÒcrystallizedÓlevel of knowledge or sophistication about physical and social events and processes. People with MR are obviously handicapped in both of these domains, but even people with signiÞcant expertise in some areas may be hopelessly out of their depth when addressing issues outside their area of experience or knowledge. This is seen in the case of a prominent right-wing Congressional leader who, it is reported, refuses to eat soup at restaurants because of fear, presumably based on a conspiracy theory spread by homophobes, that he will contract AIDS from gay waiters who might spit in his soup. While it is true that gay people might have reason to dislike this Congressman, who is an outspoken opponent of gay rights, concern about contraction of AIDS from oral contact, such as kissing or drinking from the same glass, has long been put to rest by overwhelming evidence to the contrary (in fact, current scientiÞc thinking even suggests that saliva is a hostile environment for the HIV virus). A similar example of how a lack of content sophistication might have contributed to a gullible outcome is the verdict of the jury in the original O. J. Simpson murder trial to acquit despite massive physical evidence of guilt. To people who do not
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even begin to understand a process as complicated as DNA testing, a position supported only by the persuasiveness of its advocate has as much likelihood of being believed as a position supported by logic and science. Similarly, a person with some knowledge of the literature on human memory processes, as well as some sophistication about psychopathology, might be in a better position, one would assume, to resist the blandishments of repressed memory therapists who tend to interpret all physical or emotional symptoms as evidence of forgotten childhood sexual abuse. If we assume that gullibility (acting on a false premise) is based on credulity (acceptance of the truth of that premise when asserted by another), then it stands to reason that gullibility will be reduced when one possesses some independent knowledge basis for recognizing the falseness of the premise. Thus, if the Congressman had a fuller understanding of the science involving transmission of the HIV virus, it is more likely that he would order soup in restaurants, although he still might not do so for affective, or consciously political, reasons. Credulity might, thus, be considered to reßect an absenceÑgeneral or speciÞcÑ in oneÕs crystallized (experience-based) intelligence. An example of this came to the Þrst author while engaged in the favorite activity of American male academics: watching sports on TV. A tongue-in-cheek ad for a sports news network ran as follows: ÒIfyou watched ESPN News, you would know which of the following headlines were true: ÔJackNicklaus wins professional beach volleyball tournament,ÕÔTom Landry named new coach of the Toronto Maple Leafs,Õand ÔBoston Marathon to add 23 yards,Õfollowed by a laughing voice saying ÔMr. Gullible.ÓÕ Being a sports nut, the Þrst author knew, of course, that all three headlines were false. His wife, on the other hand, having no idea that Tom Landry was an elderly ex-football coach and only a vague idea that Jack Nicklaus was a portly aging golfer, could have fallen for the Þrst gag and possibly the second. But, as an avid runner, and a native of the Boston area, she possessed the knowledge base to see through the third gag. Preliminary research with a credulity instrument based on the ESPN News format (Greenspan & Loughlin, 1998) suggests that normal 3- and 4-year-olds are prepared to believe anything, no matter how magical, while by ages 5 or 6 some degree of skepticism begins to set in, except in regard to processes (such as the legal or political systems), of which young children have little or no understanding or experience. While research with this instrument involving people with developmental disorders has not yet been completed, one imagines that their limitations in crystallized intelligence would translate directly into increased credulity. H.
Credulity as a Reflection of Low Social Intelligence
The examples given above speak mainly to limitations in Òpracticalintelligence,Ó i.e., understanding of everyday physical processes. Because credulity always
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occurs in response to socially transmitted ideas or requests, oneÕs ability or limitations in the area of ÒsocialintelligenceÓ(understanding of people and social processes) also has likely relevance to understanding gullible behavior. The Þrst author (Greenspan, 1979) proposed a typology of social intelligence which has three domains, each of which can be further subdivided into several variables. The domain of ÒsocialsensitivityÓrefers to oneÕs ability to take othersÕperspectives [a somewhat ßuid aspect of social intelligence, according to Jones & Day (1997)] and to label the state or meaning of social events (a somewhat more crystallized aspect). Greater social sensitivity might have prevented a gullible response by Richard Lapointe, a man born with a congenital brain malformation who was wrongly convicted of murder solely on the basis of a confession obtained during the course of a 9-hour interrogation Þled with deceptive threats and inducements (Connery, 1996). Lapointe was brought into the police station under the false claim that his help was needed by the detectives to Þnd who else could have murdered his wifeÕs elderly grandmother. The Þrst clue that the detectivesÕintentions were other than stated came from various posters situated on the walls of the interrogation room containing fabricated DNA and other physical evidence claiming to implicate Lapointe. Furthermore, the name ÒSergeant Joe FridayÓ(the Þctional star of ÒDragnetÓ,one of the early TV detective shows) was displayed on one of the posters, suggesting not only the phony nature of the evidence but the interrogatorsÕ low estimate of LapointeÕs intelligence. Obviously, a more socially perceptive individual than Lapointe might have used these cues to label the situation as a set-up and terminated the interview. The domain of ÒsocialinsightÓ(wisdom about inter- and intrapersonal processes and institutions) comes into play as well in preventing or facilitating a gullible response, as the Lapointe case again illustrates. It is known that few Americans understand the criminal justice system and their rights under the Constitution (a very intelligent friend was amazed to learn, for example, that President Clinton was not legally obligated to testify before the Grand Jury investigating him). If people of above-average intelligence are so ignorant about the workings of the criminal justice system, it stands to reason that people with developmental disabilitiesÑ unless they have had considerable Þrst-hand experience with that system and thus acquired some ÒstreetsmartsÓÑare even more handicapped when dealing with ploys which misstate or violate their rights under that system. For example, the detective who obtained the most damaging of LapointeÕs statements is believed to have told Lapointe that his child would be taken away from him by the child protective system, a threat commonly made to induce poor and unsophisticated suspects to cooperate with the police. Lapointe, like most parents who have MR/DD, lived in constant fear of child protective intervention and has stated that this threat was what caused him to cave in (Greenspan, 1996). A more savvy individual would have understood that a police ofÞcer does not have the authority to carry out such a threat and would have been able to understand his motives in making such a
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threat (both aspects of crystallized social insight). A more savvy individual than Lapointe also would likely have seen through the promise that confession would result in minimal consequences (in fact, the State sought the death penalty). The third domain in GreenspanÕs (1979) social intelligence typology is Òsocial communication.ÓThis domain taps oneÕs ability to make skillful social responses, as in effective social problem solving or referential communication. In the model of gullible outcomes portrayed earlier in Fig. 1, we have included this domain under the rubric of ÒcommunicationÓrather than under the rubric of social intelligence. This is because social communication (a construct comparable to the behaviorist notion of ÒsocialskillsÓ)does not necessarily involve any cognitive processing of social information, but is a somewhat independent process analogous to language ability. Undoubtedly, the ability to assert valued or effective social messages (such as, for someone being interrogated, Òcallmy lawyerÓ)would minimize the chance of a gullible outcome. There is considerable evidence that people with developmental disabilities have marked social communication deÞcits (Matson, 1997), a fact which undoubtedly contributes to an inability to cope effectively with socially coercive situations.
V.
GULLIBILITY AND DISABILITY
People with developmental disabilities are likely more credulous and gullible than are people without disabilities, but this statement is based more on clinical and personal experience than on the (almost) nonexistent research literature. A central feature of MRDD is that one is functioning at a developmentally prior cognitive stage, and it is certainly the case that gullibility is high in young children and typically decreases with age, both as a function of universal developmental processes and of increasing social experience, including the experience of being victimized. Certainly educators understand this, as schools throughout North America have enacted bans on bringing Pok« emon cards (a current craze, especially among boys) to class, as younger children commonly get tricked into making one-sided trades by older children who take advantage of their naively trusting natures. The multidimensional model of social action, portrayed earlier in this chapter, provides an explanation of why people with, or in some cases without, disabilities are gullible, as (a) in an age of ÒnormalizedÓcommunity services, they are more likely than in the past to lack family members or paid staff who might protect them from exploiters; (b) they likely lack the perspective taking (ßuid social intelligence) to see through exploiters or the social insight (crystallized social intelligence) to label situations as exploitative; (c) they may, as a primary impairment, in the case of those with mental illness, or a secondary personality adaptation possess motivational styles that make them overly compliant and needy in social situations and that mitigate against being assertive in complex or coercive social situations;
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(d) they often lack the verbal or other social skills needed to be assertive, which contributes to a cognitive and motivational fatigue reaction; and (e) they may have sensory or other physical impairments, or state characteristics, e.g., tiring easily, that also contribute to a tendency to give up and go along. Given our long-standing interest in social intelligence, we obviously have a special interest in the credulity/social information-processing piece of the puzzle. However, using a developmental-contextualist action model forces one to recognize the unique characteristics of each individual and situation and to appreciate the complex interaction of cognitive and motivational/personality processes in contributing to an individualÕs particular social response. It is difÞcult to understand why a variable as obviously important and universal as gullibility has been so little studied, either in the normative literature or by disability researchers. Perhaps this oversight reßects the cognitive (i.e., nonsocial) emphasis among disability and normative-developmental researchers. On the other hand, those who are interested in social processes (e.g., sociologists and social psychologists) tend to be more interested in group phenomena (e.g., the Barnum effect and the obedience effect) than in individual style-based or ability-based adaptations, even to their own experimentally engineered exploitation situations. A further impediment to studying a process such as gullibility in poeple with developmental disabilities is that it ßies in the face of the current ÒparadigmshiftÓ in MRDD services (Bradley & Knoll, 1995), in which it is considered politically incorrect to emphasize deÞciencies that might be used to argue against the most inclusive sorts of school or community placements. As is often the case in the social sciences, anyone currently interested in exploring the role of gullibility and credulity in persons with MRDD must acknowledge the contributions of earlier scholars, in some cases writing over a century ago. Two 19th-century works on behavioral disorders, IrelandÕs (1877) pioneering textbook on mental deÞciency and MorisonÕs (1824) early textbook on psychiatry, both identiÞed high levels of ÒcredulousnessÓas a universal characteristic of Òimbeciles.Ó Although Ireland and Morison did not propose deÞnitions of MR based on such increased credulousness, it is not inconceivable that gullibility/credulity should be viewed as critical components in the search for a natural behavioral phenotype for MR, a search which has thus far eluded classiÞcation committees that have had to rely on invented noncontextualized constructs such as Òadaptive behavior.Ó The Þrst author has in fact argued elsewhere (Greenspan, 1999b; Greenspan & Switzky, in press) for a deÞnition of MR along the lines of a condition marked by impairments in social, practical, and academic intelligence which causes an individual to be perceived as needing long-term supports and protections to minimize risks such as social exploitation, academic failure, and physical danger. In such a deÞnition, risk of social exploitation, an outcome of social intelligence impairment (i.e., credulity), is seen as a central aspect of people with MR and one which,
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because it creates a need for services and protections, is central to viewing MR as a ÒdisabilityÓand not just as a benign form of human variation. This is not to say that credulity is all bad. As a general rule, people who habitually enter social transactions with trust and a willingness to go along are more attractive as human beings than are people who habitually enter social transactions with suspicion and resistance. As a personality adaptation to feelings of incompetence and low self-efÞcacy, credulity generally is a good thing for people with MR to demonstrate, as it enables them to cope with situations that may be beyond their level of understanding. Given that others are generally helpful and sympathetic, being credulous does not always place one at risk and may even cause others to respond in a kind and protective manner. But some situations are inherently dangerous becuase some people are interested in exploiting, rather than respecting, anotherÕs trust and limitations. The judgment that someone is socially competent and thus ÒnormalÓ(i.e., does not need supports and protections) requires an understanding of how that person behaves not only in routine or socially safe situations but also in novel, complex, and socially dangerous situations. It is our feeling that increased research on gullibility and credulity will contribute to a better understanding of the nature of social competence and potentially to the development of services (e.g., effective residential supports) and safeguards (e.g., interrogation guidelines) which strike a healthy balance between freedom and safety for people with mental retardation and related disabilities. Given that there has been essentially no prior research on gullibility and credulity in people with developmental disabilities, there is no limit to the kinds of empirical questions that can be pursued. A partial list of such questions would contain the following: (a) Are people with DD more gullible and/or credulous than people without disabilities when matched on chronological or mental age? (b) Are people with some forms of DD, particularly autism or Asperger syndrome, especially high in gullibility and/or credulity? (c) What role does credulity and gullibility play in scenarios that contribute to marked failures of community adaptation such as work terminations or movement away from integrated residential or educational placements for people with DD? (d) What factorsÑconte xtual, personological, intellectual, and so onÑdif ferentiate those people with DD who are unusually gullible from those who are not? (e) Does past experience in being tricked or manipulated contribute to greater wariness or invulnerability to exploitation in people with DD? (f) Can interventions be developed that reduce gullibility of people with DD and in what kinds of situations are these interventions likely to be especially effective or ineffective? (g) To what extent can and should classiÞcation schemes and legal protective mechanisms be modiÞed to reßect the central role of credulity and gullibility in various developmental disorders? (h) What is the optimal balance between too little credulity (excessive
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suspiciousness) and too much credulity (excessive trust) in the social adaptation of people with DD? This list is by no means exhaustive. It is our hope that future researchers, pursuing these and related questions, will shed light on the potentially important role of gullibility and credulity in the successes and failures of people with, and without, disabilities. Hopefully, such research will bring greater attention to these constructs, including the development of needed preventative interventions and protective mechanisms. It is our hope that a future update of this chapter, perhaps in 10 years, will contain far less speculation and theorizing and much more hard data about the role of credulity and gullibility in the social and community adaptation of children and adults with developmental disorders. REFERENCES Bandura, A. (1997). Self-efÞcacy: The exercise of control. New York: W. H. Freeman. Baron, J. (1994). Thinking and deciding (2nd ed.). New York: Baumeister, R. F. (Ed.) (1993). Self-esteem: The puzzle of low self-regard. New York: Plenum. Baumrind, D. (1964). Some thoughts on ethics of research after reading MilgramÕs ÒBehavioral study of obedience.ÓAmerican Psychologist, 19, 421Ð423. Becker, E. (1973). The denial of death. New York: Free Press. Berrios, G. E., & Gili, M. (1995). Will and its disorders: A conceptual history. History of Psychiatry, 6, 87Ð104. Black, R. (1999, February). Experiences of sexual exploitation by women with mental retardation: A qualitative study. Paper presented at the conference of the MRDD division of CEC, Maui, Hawaii. Block, M. R. (1983). Special problems and vulnerability of elderly women. In J. I. Kosberg (Ed.), Abuse and maltreatment of the elderly: Causes and interventions (pp. 220Ð233).Boston: John Wright. Bradley, V., & Knoll, J. (1995). Shifting paradigms in services to people with disabilities. In O. C. Karan & S. Greenspan (Eds.), Community rehabilitation services for people with disabilities. Boston: ButterworthÐHeinemann. Brodie, R. (1996). Virus of the mind: The new science of the meme. Seattle: Integral Press. Byrne, D. E., & Fisher, W. A. (Eds.) (1983). Adolescents, sex and contraception. Hillsdale, NJ: Erlbaum. Chauncey, G. (1997, April 14). The joy of no sex. The New Yorker, 31Ð32. Clare, I. C., & Gudjonsson, G. H. (1995). The vulnerability of suspects with intellectual disabilities during police interviews: A review and experimental study of decision-making. Mental Handicap Research, 8, 110Ð128. Dawes, R. M. (1994). House of cards: Psychology and psychotherapy built on myth. New York: The Free Press. Dawkins, R. (1989). The selÞsh gene (new ed.). Oxford, UK: Oxford Univ. Press. Dawkins, R. (1993). Viruses of the mind. In B. Dahlbom (Ed.), Dennett and his critics: Demystifying mind (pp. 13Ð27).Oxford, UK: Blackwell. Driscoll, J. H. (2000). Understanding of coercive communications in adolescents with and without developmental or behavioral disorders. Unpublished doctoral dissertation, University of Connecticut. Dykens, E. (1998, August 12). Personal communication. Los Angeles: Neuropsychiatric Institute, University of California at Los Angeles.
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Ferris, T. (1997, April 14). The wrong stuff. The New Yorker, 31. Ford, D. H., & Lerner, R. M. (1992). Developmental systems theory: An integrative approach. Newbury Park, CA: Sage. Ford, M. E. (1992). Motivating humans: Goals, emotions, and personal agency beliefs. Newbury Park, CA: Sage. Galanter, M. (1989). Cults: Faith, healing and coercion. New York: Oxford Univ. Press. Gilovich, T. (1991). How we know what isnÕt so: The fallibility of human reason in everyday life. New York: The Free Press. GranÞeld, J. (1997, April 12). Personal communication. New Haven, CT: Department of Special Education, Southern Connecticut State University. Greenspan, S. (1979). Social intelligence in the retarded. In N. R. Ellis (Ed.), Handbook of mental deÞciency: Psychological theory and research (2nd ed.). Hillsdale, NJ: Erlbaum. Greenspan, S. (1995). There is more to intelligence than IQ. In D. C. Connery (Ed.), Convicting the innocent: The story of a murder, a false confession, and the struggle to free a Òwrong manÓ (pp. 136Ð151).Cambridge, MA: Brookline Books. Greenspan, S. (1999a). A contextualist perspective on adaptive behavior. In R. L. Schalock (Ed.), Adaptive behavior and its measurement: Implications for the Þeld of mental retardation (pp. 61Ð80).Washington, DC: American Association on Mental Retardation. Greenspan, S. (1999b). What is meant by mental retardation? International Review of Psychiatry, 11, 6Ð18. Greenspan, S., & Driscoll, J. (1997). The role of intelligence in a broad model of personal competence. In D. P. Flanagan, J. L. Genshaft, & P. L. Harrison (Eds.), Contemporary intellectual assessment: Theories, tests and issues. (pp. 131Ð150).New York: Guilford. Greenspan, S., & Loughlin, G. (1999). Preliminary study of the developmental decline in credulity in children with and without mental retardation. Paper presented at the Conference of the MRDD Division of CEC, Maui, Hawaii. Greenspan, S., & Love, P. F. (1997). Social intelligence and developmental disorder: Mental retardation, learning disabilities and autism. In W. F. MacLean, Jr. (Ed.), EllisÕhandbook of mental deÞciency (3rd ed., pp. 311Ð342).Mahwah, NJ: Erlbaum. Gudjonsson, G. (1992). The psychology of interrogations, confessions and testimony. London: Wiley. Hackett, G. (1986). Reactions to Òcounselorgullibility.ÓCounselor Education and Supervision, 26, 112Ð114. Hamilton, M. (1998). Characteristics of people who believe what they read in supermarket tabloids. Unpublished manuscript, University of Connecticut School of Communication Sciences. Hickson, L., & Khemka, I. (1999). Decision-making and mental retardation. In L. M. Glidden (Ed.), International review of research in mental retardation and development disabilities (Vol. 22). Orlando, FL: Academic Press. Inhelder, B., & Piaget, J. (1958). The growth of logical thinking from childhood to adolescence: An essay on the construction of formal operational structures. New York: Basic Books. Ireland, W. W. (1877). On idiocy and imbecility. London: Churchill. Johnson, C. N., & Harris, P. L. (1994). Magic: Special but not excluded. British Journal of Developmental Psychology, 12, 35Ð51. Jones, K., & Day, J. D. (1997). Discrimination of two aspects of cognitive-social intelligence from academic intelligence. Journal of Educational Psychology, 89, 486Ð497. Jones, W. (1980). Credulities past and present: Including the sea and seamen, miners, amulets and talismans, kings, word and letter divination, numbers, trials, exorcising and blessing of animals, birds, eggs and luck. London: Chatton and Windus (reissued 1968 by Singing Tree Press, Detroit, Michigan). Kallman, M. (1981). Monoideism in psychiatry: Theoretical and clinical implications. American Journal of Psychotherapy, 35, 235Ð243.
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Keating, D. P. (1994). Contextualist theories of intelligence. In R. J. Sternberg (Ed.), Encyclopedia of intelligence (Vol 1, pp. 293Ð298).New York: Macmillan. Kosberg, J. I. (Ed.) (1983). Abuse and maltreatment of the elderly: Causes and interventions. Boston: John Wright. Layne, C. (1979). The Barnum effect: Rationality versus gullibility? Journal of Consulting and Clinical Psychology, 47, 219Ð221. Leahey, T. H. (1997). Thinking without logic. Contemporary Psychology, 42, 261Ð262. Lefkowitz, B. (1997). Our guys: The Glen Ridge rape and the secret life of the perfect suburb. Berkeley: Univ. of California Press. Meerloo, J. (1956). Rape of the mind. Cleveland: World. Milgram, S. (1963). Behavioral study of obedience. Journal of Abnormal and Social Psychology, 67, 371Ð378. Milgram, S. (1974). Obedience to authority. New York: Harper & Row. Miller, M. J. (1986). Counselor gullibility. Counselor Education and Supervision, 26, 103Ð107. Morrison, A. (1824). Outlines of mental diseases. Edinburgh: MacLachlan & Stewart. Newstead, S. E., & Evans, J. St. B. T. (Eds.) (1995). Perspectives on thinking and reasoning: Essays in honour of Peter Wason. Hove, England: Erlbaum. Ofshe, R. J., & Leo, R. A. (1997). The social psychology of police interrogation: The theory and classiÞcation of true and false confessions. Studies in Law, Politics and Society, 16, 189Ð222. Oppenheimer, L. (1991). The concept of action: A historical perspective. In L. Oppenheimer & J. Valsiner (Eds.), The origins of action: Interdisciplinary and international perspectives (pp. 1Ð36).New York: Springer-Verlag. Pepper, C. D. (1983). Fraud against the elderly. In J. I. Kosberg (Ed.), Abuse and maltreatment of the elderly: Causes and interventions (pp. 68Ð83).Boston: John Wright. Perske, R. (1991). Unequal justice: What can happen when people with retardation and other developmental disabilities encounter the criminal justice system. Nashville: Abington Press. Pesci, D. (1997). Amistad. New York: Marlowe & Co. Piaget, J. (1960/1926). The childÕs conception of the world. London: Routledge & Kegan Paul. Piaget, J. (1981). Intelligence and affectivity: Their relationship during child development. Palo Alto, CA: Annual Reviews. Piattelli-Palmarini, M. (1994). Inevitable illusions: How mistakes of reason rule our minds. New York: Wiley. Pillemer, K. A., & Wolf, R. S. (Eds.) (1986). Elder abuse: Conßict in the family. Dover, MA: Auburn House. Quinn, M. J., & Tomita, S. K. (1986). Elder abuse and neglect: Causes, diagnosis and intervention strategies. New York: Springer-Verlag. Reis, S. (1998, August 12). Personal communication. Storrs, CT: School of Education, University of Connecticut. Reiss, S. (1999). The sensitivity theory of aberrant motivation. In S. Taylor (Ed.), Anxiety sensitivity (pp. 35Ð58).Mahwah, NJ: Erlbaum. Rosnow, R. L. (1988). Rumor as communication: A contextualist approach. Journal of Communication, 38, 12Ð18. Rosnow, R., Esposito, J. L., & Gibney, L. (1988). Factors inßuencing rumor spreading: Replication and extension. Language and Communication, 8, 29Ð42. Rosch, E. H. (1988). Coherences and categorization: A historical view. In F. Kessel (Ed.), The development of language and language researchers: Essays in honor of Roger Brown (pp. 373Ð392). Hillsdale, NJ: Erlbaum. Rosnow, R., & Georgoudi, M. (Eds.) (1986a). Contextualism and understanding in behavioral research (pp. 3Ð22).New York: Praeger. Rosnow, R., & Georgoudi, M. (1986b). The spirit of contextualism. In R. Rosnow & M. Georgoudi
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Criminal Victimization of Persons with Mental Retardation: The Influence of Interpersonal Competence on Risk T. NETTELBECK AND C. WILSON DEPARTMENT OF PSYCHOLOGY UNIVERSITY OF ADELAIDE ADELAIDE, SOUTH AUSTRALIA
I.
INTRODUCTION
Wilson and Brewer (1992) conÞrmed what several authors had concluded must be the case: that the incidence of criminal victimization of persons with mental retardation is signiÞcantly higher than in the general population. In this chapter, we review research on the forms and causes of such victimization. We include an account of characteristics of victims that may contribute to their being victimized and, where these can be regarded as modiÞable, we address training issues that may be applied to alleviate the risk of future victimization. We also discuss implications of high vulnerability for victimization among persons with mental retardation, for those concerned with service delivery, for institutions pursuing integration and normalization, and for the criminal justice system and other government agencies. Finally, areas requiring further research are described. A.
Prevalence
As Luckasson (1992) has pointed out, considerable uncertainty surrounds the nature and extent of criminal victimization of people with mental retardation. SobseyÕs (1994) extensive account of the physical, sexual, and psychological abuse of persons with disabilities has conÞrmed this conclusion. A brief review of issues in this area by Balkin (1981) found little systematic research, an outcome that has scarely changed in the 2 decades since. Our current review derives from literature searches run through the electronic databases PsycLIT, Medline, ERIC, INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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C 2001 by Academic Press. Copyright All rights of reproduction in any form reserved.
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AGIS, CINCH, Index to Legal Periodicals and Books, LAWREV, and WorldCat. Much of the available literature has been concerned with case studies and small samples within speciÞc locations, although it is reasonable to regard conclusions and recommendations from this work as being of wider relevance. What research does exist strongly suggests that persons with mental retardation are disproportionately at risk to criminal offenses, especially sexual abuse and assault (Furey, 1994; Luckasson, 1992). Moreover, although the available literature has focused primarily on adults, this outcome also has been found to hold for school-age children with mental retardation (Lang & Kahn, 1986). However, scarcely any academic literature has directly addressed the question of prevalence, essentially because few mental retardation services collect these data and large-scale national crime surveys in the United States, UK, and elsewhere have not included the identiÞcation of persons with mental retardation. Nonetheless, LuckassonÕs analysis suggests that, for a number of reasons, rates of criminal victimization among persons with mental retardation are likely to be signiÞcantly higher than those reported for the wider community. Results from two Australian studies have been essentially consistent with LuckassonÕs conclusions (Johnson, Andrew & Topp, 1988; Wilson & Brewer, 1992). Reasons for underrepresentation of rates that Luckasson discusses are, Þrst, that many victims with mental retardation fail to report a crime committed against them. This may be either because they lack the capacities or relevant knowledge to do so or because formal community or institutional reporting procedures are not available. Alternatively, the victim may fear authority or be in a dependent relationship and fear retribution. In some such instances where the offense is committed by caregivers (Furey, 1989; McAfee, 1998), other staff may be reluctant to report a coworker, particularly if the consequence will be instant dismissal (Furey, 1989). Second, attempts by persons with mental retardation to Þle reports may sometimes be disbelieved or not taken seriously because of attitudes that devalue the rights of such persons or because of confusion between mental retardation and psychiatric illness. Stereotyped perceptions about the low competencies of persons with mental retardation to remember and describe events accurately and to understand the difference between fact and falsehood or fantasy may also contribute to lower rates of reporting although, as Johnson et al., (1988) have argued, in some instances such attitudes will lack a factual basis; and in any case appropriate preparation can aid persons with mental retardation to cope adequately with court appearance. There has been debate within Australian legal circles about the very stringent requirement that a witness must understand the nature and consequences of swearing an oath as opposed to a less demanding demonstration of truthful, rational answers. This debate has emphasized that many persons with mental retardation can provide credible testimony (Rosser, 1990). That witness accounts by people with mental retardation are commonly less detailed can reßect forms of questioning and cross-examination that are not appropriate for witnesses with mental retardation (Kebbell & Hatton, 1999). Witnesses with mental retardation are particularly
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vulnerable to leading, suggestive questioning that invites or encourages acquiescence.1 They cope more effectively with open questions and the opportunity to express themselves in their own words (Everington & Fulero, 1999; Kebbell & Hatton, 1999). In fact, as Valenti-Hein and Schwartz (1993) have summarized, a number of court cases in the United States have conÞrmed that, given appropriate circumstances, persons with mental retardation can present credible testimony. Similarly, Clare and Gudjonsson (1993) and Perlman and Ericson (1992) have found that some persons with mental retardation can be reliable, effective witnesses. However, Luckasson is probably correct when arguing that such is still not the common view. A UK study by McNulty, Kissi-Deborah, and NewsomDavies (1995) is consistent with this conclusion, Þnding poor levels of responding by police to reports made by persons with mental retardation of crime against them. In part, this may reßect the difÞculties that police, without speciÞc training or guidelines, can experience when attempting to interview persons with mental retardation. Third, reported instances of victimization may sometimes be interpreted by authorities as reßecting abuse or neglect and therefore not sufÞciently serious to be registered as criminal acts. McAfee (1998) has underscored the extent to which the media can contribute to this trend by adopting euphemisms that imply reduced severity. On his analysis, if the victim is someone with mental retardation, then a media report will often describe criminal assault as ÒabuseÓ or rape as Òsexual abuse.Ó2 This trend may explain, at least in part, why even careworkers 1 Details of an especially troubling case, that may illustrate the potential vulnerability of persons with mental retardation to some forms of interrogation, are to be found on the web at http://web.syr.edu/%7Esndrake/1pointe.htm. A man with Dandy-Walker syndrome, hydrocephalus, and consequential brain damage and low average IQ has been in prison since 1987, convicted for life plus 60 years, without the possibility of parole, for the particularly brutal murder of an elderly woman. The main basis for the conviction was a confession, obtained after long and sustained interrogation without the presence of legal counsel. Although a public organization, ÒTheFriends of Richard Lapointe,Óhas marshaled considerable circumstantial evidence for a miscarriage of justice, in part because of doubt about the reliability of the confession and the role of police in obtaining it, the man remains incarcerated. 2 McAfeeÕ s (1998) point is important. The considerable literature on ÒabuseÓlargely fails to deÞne this term, although the general intent to describe something bad is readily understood. However, ÒabuseÓcarries a diversity of meaningsÑfrom denigration or slander, to the taking of advantage, to verbal or physical ill-treatment, including severe forms of violation like assault and rape. These different meanings permit a wide range of interpretations about severity and McAfee suggests that, when mental retardation is involved, there is a tendency to regard abusive incidents as less serious. This then gives rise to a culture wherein, instead of vigorously pursuing criminal charges through the criminal justice system, an ÒabusiveÓincident is dealt with Òin-house,Ówithin the disability system. ÒAbuseÓdoes not engender the same interpretation as Òassault.ÓHowever, many so-called abusive instances are certainly sufÞciently severe to be judged as illegal if dealt with through the criminal justice system. On the other hand, as an anonymous reviewer to this chapter has pointed out, if the criminal justice system were the only recourse that persons with mental retardation had, this could rebound to their ultimate disadvantage because of the social reality that people with retardation continue to remain a devalued group in society.
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can sometimes be reluctant to report an offense committed against a person with mental retardation, especially where the alleged perpetrator also has an intellectual disability (Johnson et al., 1988). Alternatively, a careworker may experience a conßict of interest when the alleged perpetrator is another staff person or when both parties involved in an incident are in the workerÕs care. It is also the case that some institutions will have in place policies designed to deal internally with all but the most severe incidents. However, in all such circumstances the central issue ought to be that a person with mental retardation has been criminally victimized. An interpretation of what constitutes a crime is deÞned by law, to apply equally to all cases, irrespective of the intellectual capabilities of those involved. Thus, for example, punching another person may constitute assault, an offense in violation of criminal law which should therefore be taken seriously, irrespective of the intellectual status either of the person hit or of the offender. B.
Types of Offenses against Persons with Mental Retardation
The literature on this topic is not extensive but it suggests that certain crimes against persons with mental retardation occur at higher rates than those found in the wider population. Luckasson (1992) referred to instances of Òhatecrimes,Ó where recently opened group homes for persons with mental retardation have been Þre-bombed. She also cited cases of ÒaidedsuicideÓand Òmercy killingÓ(pp. 212Ð 213) where motive may have been more sinister than is implied by these terms. Similarly, both Luckasson (1992) and Johnson et al. (1998) reported high levels of Þnancial victimization (like misappropriation of beneÞt payments and swindling), consumer abuse (e.g., high interest rates for credit purchasing, overpersuasive sales techniques, and overcharging for services), and underpayment for work. A South Australian study by Wilson and Brewer (1992) involving 174 persons with mental retardation provided a sharper focus than was previously available from the literature on both the types of offenses and factors contributing to greater risk of victimization among persons with mental retardation. This investigation was prompted by concern within Australian police organizations about possible increasing police responsibilities in this area at a time when government policies to adopt principles of normalization were Þrst being implemented. As a consequence, persons with mental retardation were being encouraged and assisted to access wider opportunities for community involvement than had generally been applied within institutional settings. Wilson and Brewer broke down victimization statistics, enabling comparisons across rates for personal and property offenses against people with mental retardation with those for the general community. These analyses found substantially higher rates for all crimes with the exception of automobile theft. SpeciÞcally, in the personal crime category, the incidence of robbery was 12.7 times higher; sexual assault 10.7 times; assault 2.9 times; and
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theft 1.2 times higher. In the category of household offenses, both of the crime types included were elevated for people with mental retardation; 1.8 times for break-and-enter and 1.2 times for household property theft. Wilson and BrewerÕs data did not detail the extent to which perpetrators also were persons with mental retardation but it is plausible to assume that some were. Of course, if this was so it should not be seen as somehow reducing the importance of these Þndings. By far, the major area of concern relating to the victimization of persons with mental retardation has been that of sexual offenses. An extensive literature has established that both children and adults with mental retardation are at signiÞcant risk for sexual abuse/assault, deÞnitions of which range from noncontact exploitation to direct sexual contact and penetration (Beail & Warden, 1995; Brown & Stein, 1997; Buchanan & Wilkins 1991; Chamberlain, Rauh, Passer, McGrath, & Burket, 1984; Elvik, Berkowitz, Nicholas, Lipman, & Inkelis, 1990; Furey, 1994; Furey, GranÞeld, & Karan, 1994; Furey & Niesen, 1994; Furey, Niesen, & Strauch, 1994; Gorman-Smith & Matson, 1992; Longo & Gochenour, 1981; Senn, 1988; Sobsey, 1988; Stimpson & Best, 1991; Stromsness, 1993; Turk & Brown, 1993). Estimates of prevalence show a huge variation, ranging from 8% (Buchanan & Wilkins, 1991) to 86% of people with mental retardation (Hard, 1986; cited by Sobsey, 1994), a situation that reßects different deÞnitions of abuse, the inßuence of different research procedures, the nature and levels of disabilities surveyed, and inconsistencies in reporting by victims. However, most reviewers have followed Turk and Brown (1993), who concluded, on the basis of the few large-scale surveys available, that the sexual abuse of persons with mental retardation is probably signiÞcantly higher than in the general population. Turk and BrownÕs (1993) survey in the UK involved 199 victims, a comparable number to those participating in North American surveys by Chamberlain et al. (1984; United States) and Sobsey and Varnhagen (1991; Canada). Most recently, a very large investigation in the United States, involving 461 cases of sexual abuse of adults with mental retardation, substantiated over a period of 5 years, has been made by Furey and her coworkers (Furey, 1994). On this collective evidence, most incidents of sexual abuse of persons with mental retardation occur in either the victimÕs or the perpetratorÕs home, and most perpetrators are known to the victim (e.g., 95%; Turk & Brown, 1993)Ñcommonly family members or caregivers. On these grounds, Turk and Brown have queried the relevance of ÒstrangerdangerÓfocused training programs, which have been relatively popular forms of awarenessraising training within institutional settings. However, an alternative interpretation is that these programs have actually been effective in preventing victimization by strangers. No research has as yet directly addressed this issue. The incidence of rape and other sexual contact is much higher than that for noncontact instances. In almost half of all abusive incidents, the perpetrator is a person with mental retardation and nearly all perpetrators are men, with more women than men as victims, although perpetrators with mental retardation tend
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to target a higher proportion of men than is found with nonretarded populations. Institutional living increases risk signiÞcantly. Contrary to earlier suggestions, persons with a severe disability may be as vulnerable to abuse as those with mild or moderate mental retardation. The effects of sexual abuse on victims with mental retardation are summarized by Gorman-Smith and Matson (1992), who also include a useful discussion of treatment and prevention programs. Essentially, the effects are similar to those reported for nonretarded abuse victims, ranging from diminished self-esteem to chronic psychological disorders. A thorough and much expanded account of the foregoing issues has been provided by Sobsey (1994).
II. A.
THEORIES OF VICTIMIZATION
Defining a Victim
In the absence of adequate prevalence data, it is not surprising that there has been little theoretical development concerning victimization of persons with mental retardation. A reasonable starting point, however, is to consider currently available victimization theories developed within the broad social context. We begin this discussion by providing an operational deÞnition for a victim of crime. A victim is someone who has a personal or property crime committed against him or her, whether by a stranger, an acquaintance, or member of the family. As Garkawe (1995) has pointed out, this is a narrow Òlaw-and-orderÓdeÞnition that excludes white-collar crime or environmental crime; but this form of deÞnition is routinely applied in crime and victimization surveys and it is appropriate to our focus here. It subsumes the concept of abuse, as already discussed in footnote 2. Of course, self-report is subjective and, at Þrst sight, not as readily substantiated as observations by others in terms of established community standards about what constitutes victimization. On the other hand, as already discussed in Section I,A in relation to prevalence, sundry factors can mitigate the accuracy of reports by others. Victims identify themselves by self-report as having been victimized, commonly within a speciÞed period of timeÑfor example, the previous 12 months. Selfreport has an advantage over other forms of recording, like police reports, that are likely to markedly underestimate the prevalence of victimization because an unknown proportion of crime is not reported (Skogan, 1981). Nonetheless, selfreport is not validated by external criteria and both intentional and unintentional sources of error are therefore possible (Skogan, 1981). Intentional sources of error include not reporting an offense or lying. Unintentional errors, like forgetting what happened, confusion about when a crime occurred, ignorance about what constitutes an offense, and misunderstanding a question directed at revealing what occurred, are likely to correlate with low IQ and therefore present special problems for investigations involving people with mental retardation.
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A different kind of observational error may also cloud research outcome if actual victims or cases with high potentiality for victimization are missed. For example, suppose that, as we argue in what follows, some victims can be distinguished from nonvictims in terms of situational or personal characteristics. This must mean that an operational deÞnition of a victim at a given point in time that does not take account of these characteristics will exclude those persons whose situational or personal characteristics render them likely victims in the future but whose circumstances (e.g., limited opportunity) have protected them thus far. In other words, at any point in time, an operational deÞnition based on self-report will tend to underestimate prevalence of people prone to victimization. Data from surveys of victims from within the general community have established that the experience of victimization is neither uniformly nor randomly distributed within the population as a whole or within identiÞable subgroups (Sparks, 1982). It should therefore be possible to establish the existence of descriptors that discriminate victims from nonvictims at any one point in time. Despite the difÞculties outlined above reßecting indeterminate measurement error, research evidence from crime and victimization surveys is clear enough to make the following observations. Victims from within the general community generally come from the same population as offenders. They tend to be young, male, single or divorced, unemployed and with low income. While this result is found to hold generally, regardless of type of crime, it is particularly strong for crimes of violence. Victims also consist in large part of people who have themselves committed offenses and this may help to explain the similarities found in the characteristics of the populations of victims and perpetrators. Currently, the evidence does not allow a clear determination of whether offending generally precedes or follows the experience of being victimized. As well as sharing simple descriptive population characteristics, perpetrators and victims spend disproportionately more time than the general population in public places at dangerous times (Braithwaite & Biles, 1984). Additionally, the overlap in the two groups could reßect behavioral preferences and attitudes that result in both offending and being victimizedÑfor example, a propensity to take risks, engage in violence, or to drink alcohol. B.
Structural and Choice Issues
The traditional view of the victimÐperpetratorrelationship has been that these two roles are dichotomous, with the perpetrator taking the active role and the victim the passive. Most attempts at understanding crime have therefore focused on describing the attributes of the criminal and the environmental circumstances in which the crime occurs (criminology). However, over the past 20 years or so theories about crime have increasingly shifted from an exclusive focus on
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variables that predict the offenderÕs attributes, motives, and behaviors to consider also how the victimÕs circumstances may contribute to the outcome (i.e., victimology; Fattah, 1991; Garkawe, 1995; Gottfredson, 1981; Karmen, 1990; Luckenbill, 1975; Miethe & Meier, 1990; Miethe, Stafford, & Long, 1987; Morrison, 1993; Stephenson, 1997, chapter 5). All theories of victimization hold that physical proximity, in the sense of exposure to environments with high risk of crime, increases the likelihood of victimization. Proximity is important to offenders because most do not travel long distances to commit their crimes. However, there is now a substantial body of evidence that also links high-risk lifestyle and routine activities to criminal victimization (Cohen & Felson, 1979; Felson & Cohen, 1980; Gottfredson, 1984; Hindelang, Gottfredson, & Garofalo, 1991; Kennedy & Forde, 1990; Miethe, Stafford, & Long, 1987). Whereas proximity may be the consequence of social circumstances at least largely beyond the control of an individual in a shorter term practical sense, day-to-day lifestyle considerations and associated activities are arguably matters of choice. Where these result in extensive exposure to locations and times involving associations with people likely to commit crimes, then the risk of becoming a victim of crime is raised. A large-scale study by Miethe and Meier (1990), based on more than 5000 respondents from the general community to a British crime survey, tested a model based on interaction between ÒstructuralÓ(i.e., proximity, exposure, and lifestyle) variables and ÒchoiceÓ(i.e., selection) variables. Selection variables were deÞned as characteristics of a potential victim that inßuence the perpetrator to select that person rather than some other as a victim; e.g., the person chosen represents economic attractiveness or has a low level of physical security or social protection. Miethe and Meier found strong support for the theoretical relevance of proximity and exposure as predictor variables but little evidence that selection factors predicted outcome. They acknowledged, however, that the latter result could have been the consequence of methodological shortcomings. Miethe and MeierÕs (1990) Þndings notwithstanding, models that place heavy emphasis on proximity and exposure variables have been criticized for providing only opportunistic explanations for differential crime rates (Garofalo, 1986; Jensen & BrownÞeld, 1986; Miethe et al., 1987). In effect, these models hold that some people are victimized because they live in certain areas or engage in routine activities that result in contact with offenders. However, such conclusions do not necessarily generate useful solutions. As in the case of many people with mental retardation, living circumstances and lifestyle may be associated with lower income and lower education. Yet although the aims of eradicating poverty or mental retardation establish bases for developing essential social policies, neither can be expected to provide an immediate practical solution for reducing criminal victimization. Moreover, the large majority of people in the same locations and pursuing similar activities to victims are not victimized. Thus, the major shortcoming of such models is that they lack predictive power. They deal with very general descriptive
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variables based upon population aggregates rather than with individual behaviors that might discriminate people who are victimized from those who are not. Opponents of structural theories argue that Þner grained analyses of individual differences in lifestyles and routine activities may reveal more detailed differences in preferred behavior patterns that are more reliable predictors of victimization. For example, Kennedy and Forde (1990) have linked victimization involving personal assault or robbery to a lifestyle that exposes young men to potential interpersonal conßict. However, they have taken this further to suggest a Òneedfor greater attention to conßict-resolution tactics in handling potentially violent situations . . . (with) further work on routine activities . . . (examining) how conßict resolution would mediate the impact of exposure to high-risk situations, thereby reducing victimizationÓ(p. 150). Thus, although lifestyle and routine activities may bring the victim and the offender together, other variables will impact on the outcome of this conßuence. C.
Factors Contributing to Higher Risk of Victimization among Persons with Mental Retardation
It is generallyÑand plausiblyÑassumed that higher risk of victimization among persons with mental retardation is due to factors that deÞne the disability, like impaired judgement, poorer adaptive behavioral strategies, and accompanying physical disabilities that presumably mark the individual as being somehow different from nondisabled persons. Such characteristics are additional to factors associated with high-risk living and working environments that reßect lower socioeconomic opportunities (e.g., Luckasson, 1992, p. 212). This viewpoint is therefore consistent with the model of victimology outlined in Section II,B above that challenges explanations for victimization primarily in terms of increased risk as a consequence of lifestyle and routine activities. Of course, lifestyle factors may be contributory, particularly for property crimes, but personal and interpersonal competencies characteristic of persons with mental retardation may also contribute. This has been acknowledged by a number of researchers, particularly in relation to sexual abuse. Thus, for example, Gorman-Smith and Matson (1992) and Lumley et al. (1998) have discussed the high vulnerability in this regard of persons with mental retardation in terms of their lower levels of knowledge about sexuality, what constitutes assault, and what their rights are in an abusive or exploitative situation; their tendencies to comply with inappropriate request or coercion, in part because of high need for acceptance and dependence on relatives or caregivers; and their generally poorer social and communication skills. 1. INTERPERSONAL COMPETENCE Because of concerns that an IQ score does not provide a sufÞcient description of general personal competency, the American Association on Mental DeÞciency
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(AAMD; now the American Association on Mental Retardation) has for some 40 years consistently deÞned mental retardation in terms of both IQ and adaptive (daily living and social) criteria (Heber, 1961; Grossman, 1973; Luckasson et al., 1992). Scales for measuring the latter have included areas of personal needs (e.g., eating, dressing, and hygiene), personal responsibility, daily living (e.g., traveling, money handling, and time keeping), communication, and socialization. Moreover, Greenspan and his coworkers (Greenspan, 1979; Greenspan & GranÞeld, 1992; Greenspan & Love, 1997; Greenspan, Switzky, & GranÞeld, 1996) have emphasized that available tests of adaptive behavior are limited to practical living skills and therefore provide too narrow a focus. Instead, Greenspan has advocated a theoretical perspective that includes interpersonal skillsÑthe extent to which the individual is effective when interacting with others. This model has provided a testable framework for research. For example, Mathias and Nettelbeck (1992a, 1992b; Mathias, Nettelbeck, & Willson, 1996) have found that, although IQ is still probably the best single predictor of general personal competence, socialinterpersonal competence is an identiÞable, partially independent factor. As such, it is likely to be of practical signiÞcance when attempting to assess the general competency of a person with mental retardation. Moreover, within the context of theories of victimization discussed here, interpersonal competence may be an important consideration when attempting to elucidate why some individuals become victims but others do not. Wilson, Seaman, and Nettelbeck (1996) conducted a study to test this suggestion. Following Greenspan (1979), we predicted that interpersonal competence would be found to be a separate entity from both intellectual ability (as indicated by IQ) and adaptive behavior. Moreover, based on a prediction that lower interpersonal competence would increase an individualÕs vulnerability to being victimized, our study tested the hypothesis that persons with mental retardation who had been criminally victimized would demonstrate lower levels of interpersonal competence than persons not victimized. The studyÕs design involved comparisons of victims and nonvictims matched on age, IQ, and adaptive behavior so that it also had the potential to demonstrate the relative independence of interpersonal competence from IQ and adaptive behavior. Results were consistent with these predictions. Participants who had been victims of crime within the previous 12 months scored signiÞcantly below nonvictims with the same IQ and adaptive behavior scores on a measure of interpersonal competence and also on self-reports about their potential to be victimized. Lower scores on the scale of interpersonal competence in part indicated that victims had problems discriminating friends from acquaintances or strangers, particularly when setting limits on what other people might reasonably ask one to do. Arguably, this outcome was to be expected if one held that these instances of poorer interpersonal competence reßected subtle consequences of a lower intellectual status not reßected directly in IQ or adaptive behavior. However, victims were also signiÞcantly more likely to report inappropriate angry
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or aggressive responses. Moreover, this outcome was consistent with earlier reports that persons with mental retardation living within institutions, who had been physically abused by their residential careworkers, showed signiÞcantly higher aggression (Rusch, Hall, & Griffen, 1986), or more frequent violent and disruptive behaviors (Zirpolli, Snell, & Lloyd, 1987), than similar nonabused residents. Such responses were therefore qualitatively different from other forms of poorly developed interpersonal skills. SpeciÞcally, these were actions by the victim generally presumed, at least in principle, to be accessible to voluntary control. This aspect of Wilson et al.Õs results was therefore entirely consistent with the observation by Kennedy and Forde (1990), outlined above in Section II,B, that tactics for conßict resolution may on occasions critically determine whether some situations result in victimization or not. Markedly aggressive behaviors could plausibly be interpreted as directly contributing to the perpetration of the crime. This interpretation therefore extends the proposition that victimization of a person with mental retardation can in part depend on the contribution of personal attributes for which the victim cannot be held accountable, like low IQ and physical appearance, gait, or other mannerisms commonly associated with mental retardation. In addition it includes the notion that, in some instances, personal crimes like assault may involve some interchange between the perpetrator and the victim so that the actions of both parties are determined in part by the actions of the other. The victimÕs contribution may be unintentional. For example, Morrison (1993) has argued that a violent interchange is often the result of a misperception concerning the intention of the other party; ÒonepersonÕs actions are perceived to be intentionally provocative by another, although the Þrst person is unaware of being provocative and certainly has no intention of being soÓ(Morrison, 1993, p. 27). On the other hand, some victim behavior may also be intentionally, or at least recklessly, aggressive. It can be expected that, in some quarters, a theory that attributes any contribution from victimsÑwhether knowingly or unknowinglyÑto crimes perpetrated against them will be regarded as misdirected and unfair. Particularly in the area of mental retardation where persons are so frequently already at a disadvantage in so many aspects of their lives, to hold that victims can by their own actions provoke or ÒcollaborateÓin offenses against them will be interpreted by some as an attempt to disregard the concept of diminished responsibility and to blame the victim for being victimized. Sobsey (1994), for example, is strongly opposed to the view that victims can contribute to their own victimization, arguing that to advocate this position can obscure other contributory factors. He has described a number of models, formulated to explain higher risk of abuse against people with mental retardation. A dependency-stress model, which views abuse as a response by stressed caregivers to the demands of caring for person with a disability (Friedrich & Boriskin, 1978; Herrenkohl & Herrenkohl, 1981; Mullins, 1986), is rejected by Sobsey. Instead,
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he prefers a countercontrol model, based on a perceived power differential between the person with mental retardation and others. This model predicts that abuse arises because the powerful participant takes away control from the disempowered disabled person (Zantal-Weiner, 1987; cited by Sobsey, 1994). Thus, as Sobsey (1994) argues, Òwhereasthe dependency-stress model suggests that abuse is likely to occur as a result of noncompliance on the part of the abused individual, the countercontrol model suggests that it is too much compliance that increases riskÓ(p. 151). However, in the context of results from studies looking at victimization of persons with mental retardation, it is likely that both models could elucidate the inßuence of inappropriate aggression, and acquiescence from the victim, on the risk of criminal exploitation. Sobsey (1994) also points out that social learning theory provides a framework for understanding abuse (Lorber, Felton, & Reid, 1984). An individual who witnesses an offensive act that is rewarded is more likely subsequently to imitate that act. Conversely, where the act is punished, imitation of the act is inhibited. One implication of this approach is that the victimÐoffender relationship can be a reciprocal one, in which a cycle of offenses is set up and can become very difÞcult to break. Sobsey (1994) describes an integrated ecological model of abuse that draws heavily on BronfenbrennerÕs (1977, 1979) ecological model of child development within a social context. SobseyÕs model combines aspects of social-learning, countercontrol, and the ecological models to produce a holistic theory that views abuse as an outcome of a relationship between victim and offender characterized by imbalance in power. This differential exists in an environment in which abusive models are rewarded. A wider culture is held to provide support and rationale for power inequities and abuse. This approach provides a broad account of organizational and caregiver practices that may contribute to higher risk of victimization and, although empirical validation of the theory is yet to be achieved, it should provide a useful framework for intervention research. However, whereas Sobsey (1994) speciÞcally holds as fallacious the idea that a victim can in any sense be responsible for his/her abuse, we disagree with this as an absolute position. It is not our intention to Òblamethe victim.ÓWe broadly agree with SobseyÕs (1994) analysis which holds the institutional service delivery system responsible for widespread abuse of residents, essentially because the system creates an environment within which care staff must operate with poor resources but with the opportunity to exercise vast power over the lives of residents. Thus, we totally support the recommendations of various authors that these environmental conditions must be changedÑthat addressing the high prevalence of victimization requires the provision to persons with mental retardation of training for protective behaviors, of appropriate advocacy arrangements and procedures for victim assistance, of community living, of better selection and training for care staff, of revision of investigative procedures within the criminal justice system, and of educational programs aimed at changing attitudes within the general community
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toward people with mental retardation (Gorman-Smith, 1992; Johnson et al., 1988; Luckasson, 1992; Rusch et al., 1986; Sobsey, 1994). Nonetheless, we argue that SobseyÕs account is not complete and that poor interpersonal competence, which is ultimately a consequence of poor social training, will on occasions contribute to victimization. Poorly controlled anger is as inappropriate to interactions within the service delivery system as it is to functioning within the broader community; but, where ever manifest, it should be modiÞable by appropriate educational intervention.3 Our position is therefore that the core issue is not the attribution of blame but, instead, how some interactions can result in criminally abusive episodes. Thus, we contend that it is realistic to acknowledge that some crimes will involve interaction between perpetrator and victim and, because this is so, research that identiÞes behaviors that increase risk of victimization is essential. Understanding the nature of such interactions will provide opportunities for interventions aimed at modifying actions that can trigger victimization and, to the extent that interventions are successful, this should empower those individuals to control more effectively their interactions with others. This being achieved, crime rates against persons with mental retardation should be reduced. D.
The Role of the Victim
Understanding the role that the victim may play in the criminal encounter can be facilitated by analysis of the typical behaviors of the victim. Within the general population, three clusters of behaviors have been linked to the experience of victimization: provoking and precipitating behaviors by victims; consenting, willing, inviting, soliciting, and participating behaviors; and negligent, careless, imprudent, and reckless behaviors. Other sorts of typologies are available (e.g., cultural, structural, and criminological; Von Hentig, 1948; Mendelsohn, 1956; Fattah, 1967), but it is the behavioral focus that offers the opportunity to understand possible causal mechanisms. The contribution of the Þrst of these behavioral categoriesÑÒvictim precipitationÓÑhas long been recognized in the literature on personal crimes, particularly with regard to the crime of murder (e.g., Wolfgang, 1958; Curtis, 1975). In this circumstance, the outcome of a conßict may be the murder of one party by the 3 An anonymous reviewer has raised the question whether our focus on victim characteristics is more
appropriate to incidents of victimization that occur within the general community rather than those perpetrated within the service delivery system. The point behind this suggestion is that, consistent with SobseyÕs (1994) concerns about the disempowerment of persons with mental retardation within institutional settings, aggressive behaviors of clients may be much more likely to attract staff retribution than would be the case if the interaction involved a stranger in the wider community. This tendency would, moreover, be exacerbated if staff were accustomed simply to contain, rather than negotiate, difÞcult situations. We acknowledge that this is strong possibility. However, we believe that two issues would best be addressed in this scenario. Certainly, staff training must emphasize that client characteristics, no matter how difÞcult, are never an excuse for abuse. However, training aimed at improved control of inappropriate client behaviors should also help to reduce the incidence of abusive incidents.
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other, but understanding the causal factors in the occurrence of the crime involves understanding the acts preceding the occurrence of the criminal act. Most recently, victim precipitation has been deÞned as a form of Òovert, aggressive and evocative behavior by the victim that triggers the action of the criminalÓ (Fattah, 1991, p. 295). The second category, consenting victims, are not victims at all for the purpose of trying to understand conßict-based victimization. Within the general population this category is largely made up of legally created victims; for example, victims of statutory rape. Nonetheless, particularly where persons with mental retardation are involved, a key issue is whether consent is informed, obtained under duress, or mitigated by low self-esteem or a need for friendship. The third behavioral category recognizes the existence of individual differences in the extent to which people protect themselves from vulnerability to victimization. Where individuals, because of their attitude or general predisposition to act in an imprudent or careless manner, either generally, or under speciÞc circumstances (e.g., when drinking alcohol) place themselves at increased risk of victimization, they have contributed to the factors that explain the occurrence of the crime. As a general rule, investigating the contribution of the victim to the precedents surrounding the occurrence of crime has greatest explanatory value for victim precipitation and negligence. To summarize our position to this point, we accept that it is highly probable that prevalence of criminal victimization is signiÞcantly higher among persons with mental retardation than in the general population. Drawing on current victimization theories, we have argued that adequate explanations and practical solutions for this are not likely to be found solely in terms of perpetrator or systemic characteristics or in terms of proximity, lifestyle, or other exposure variables essentially because these levels of analysis cannot reliably distinguish victims from nonvictims. A more promising approach is offered by recent theories that predict that the victimÕs attributes and behaviors may also contribute to the outcome. For people with mental retardation, such attributes may include characteristics over which they have little or no control. However, some behaviors may be modiÞable by behavioral intervention. In particular, once identiÞed, poor interpersonal skills indicative of inappropriate aggression, or of inappropriate acquiescence, may be improved by training in conßict resolution or assertiveness and risk of future victimization is thereby reduced. 1. SPARKSÕS THEORY OF VICTIMIZATION Our reading of the victimology literature has suggested that a behavioral model advanced by Sparks (1981, 1982) provides a useful perspective from which to address victimization of people with mental retardation. This theory has been formulated within a general victimological context, without particular consideration of persons with mental retardation, but it is sufÞciently comprehensive to meet
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this objective. Thus, it allows that variables reßecting exposure and routine activities may be relevant and it emphasizes that Òsomekinds of people are especially vulnerable to crime and that they may, because of certain attributes or the nature of their interaction with offenders, be especially likely to become victims . . .Ó (Sparks, 1982, p. 6). Sparks has described six behavioral styles4 whereby victims of crime may, in some way or other, contribute to their own victimization. He has also argued that empirical investigations of multiple victims (i.e., victims who are victimized on more than one occasion) and of Òhigh-riskÓand Òhigh-harmÓ groups should discern the extent to which any of his six factors can successfully discriminate these people from nonvictims. These behaviors and attributes of a victim described by Sparks are not held to be simply either present or absent in a dichotomous sense but instead are conceived as continua, so that some level of risk will usually attach to each of these factors and proneness to criminal exploitation will reßect the contribution of all. Sparks concedes that his list is probably not exhaustive, but he stresses the relative importance of the six factors, which are listed below. a. Precipitation. This is a causal mechanism, not a legal or a moral concept. The risk of victimization may increase if the victimÕs behavior is interpreted by the perpetrator as provocative or encouraging. For example, a victimÕs response by word or action to an initial approach may arouse emotions in the perpetrator (e.g., anger, fear), who then acts as a consequence of those emotions. Thus, a critical aspect of precipitation that distinguishes it from other factors is that it involves face-to-face interaction. b. Facilitation. If the victim fails to take adequate precautions against crime, the risk of exploitation is increased. The victim is not actively involved, so that no bilateral transaction occurs as with precipitation; but thoughtlessness or carelessness may create circumstances that contribute to the offense. For example, leaving a car unlocked may aid theft of or from the car. Alternatively, the victim may unconsciously or inadvertently behave in a way that irritates others. An example of the latter is provided by a person who displays odd or eccentric mannerisms that are beyond control but can be misinterpreted by others. c. Vulnerability. Unlike precipitation and facilitation, vulnerability is not directly dependent on a personÕs behavior but, rather, reßects relatively stable, longer term characteristics and attributes of the person that effectively deÞne a personÕs mental and physical strengths and weaknesses. Vulnerability is distinguishable from facilitation because it does not involve any deviation from due care by the victim. d. Opportunity. For an instance of victimization to occur it is obviously necessary that the victim will have been exposed in some way to the perpetrator. For example, by choosing where to go and when, a victim helps to create conditions 4 Sparks
terms these ÒfactorsÓand we follow his usage here. However, these constructs have not been validated by factor analysis.
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of opportunity. However, Sparks emphasizes that, although this area has been the primary focus of routine activity theories, it is only one of several possible contributory factors. e. Attractiveness. This dimension reßects the beneÞts that the offender stands to gain from a victim. It may reßect physical characteristics but also applies to economic considerations. Thus, returns from breaking into a house reßecting afßuence are likely to exceed considerably the value of goods found in the home of someone supported by welfare. f. Impunity. This describes the extent to which the offense to the victim is likely to attract punishment or retributionÑin effect, the probability that the perpetrator will not be caught. Thus, where a victim was known to be unable or unwilling to report the crime, impunity attaching to the offense would be very high. 2. MENTAL RETARDATION AND HEIGHTENED RISK OF VICTIMIZATION It will be clear from the foregoing account of SparksÕmodel that the nature of reduced intellectual ability is likely to render such individuals more vulnerable to victimization. However, this model also suggests that a victim can precipitate or facilitate an offense against him-/herself by behavior that encourages or provokes the perpetrator or serves in some other way to increase risk. Certainly, there is empirical evidence from research within the general community that demonstrates how certain behaviors may precipitate violence. For example, Bender (1976) has described experiences with young boys who deliberately attempted to provoke assault. These boys were described as clearly displaying evidence of low self-esteem and a sense of inferiority. Thus, in the context of SparksÕmodel, the heightened victimization rates for people with mental retardation that were reported by Wilson and Brewer (1992) are likely to reßect inßuence from a range of variables. Vulnerability, opportunity, and impunity can result from lower than average intelligence and adaptive behavior, and precipitation can result from deÞcits in interpersonal competence and self-esteem. Identifying contributions from precipitation, in particular, offers the opportunity of describing ÒtriggerÓbehaviors that could be targeted for intervention. The results from Wilson et al.Õs (1996) study, highlighting differences in interpersonal competence skills between victims and nonvictims with similar levels of mental retardation, were consistent with this interpretation.
III.
AN APPLICATION OF SPARKS’S THEORY
A recent study by Nettelbeck, Wilson, Potter, and Perry (2000) sought to broaden the focus of speciÞc behaviors that may increase the likelihood that a person with mental retardation will be victimized. Four factors from SparksÕs model were operationalized using self-report questionnaires and ratings by careworkers who
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were familiar with participants. Precipitation was deÞned in terms of reported feelings of anger and aggression elicited in different situations or directed toward others and antisocial tendencies. Vulnerability was deÞned by age, IQ, and adaptive behavior as measured by interactive functioning, social maturity, measures of eccentric mannerisms, and inappropriate compliance with unreasonable requests. Opportunity reßected the extent of unsupervised recreational time away from home in the wider community during both daytime and nighttime outings. Impunity was deÞned in terms of communication skills. Facilitation and Attractiveness were not included. At least when applied to personal crimes, we could not clearly differentiate facilitation from precipitation. Also, having deÞned attractiveness in socioeconomic terms, we found that it appeared to be relatively homogeneous among the group of persons with mental retardation available to the study, and this factor was therefore excluded. Thirty-one persons with mental retardation who had been victims of physical assault, sexual assault, or personal robbery within the previous 12 months were compared with 32 nonvictims with mental retardation. In the event, 27 persons were assault victims, with 10 experiencing more than one victimization. Half of all instances involved a stranger, outside of the sheltered residential setting. In the other half the perpetrator was a person with mental retardation. As predicted on the basis of Wilson et al.Õs (1996) results, IQ and adaptive behavior distributions for victims and nonvictims were essentially the same. The two groups were also virtually indistinguishable in terms of Impunity, Opportunity, and Vulnerability except for age (Vulnerability), as described below. The main Þnding was that victims were highly signiÞcantly different from nonvictims on all variables deÞning Precipitation. SpeciÞcally, victims were more likely than nonvictims to report that they would respond in angry or aggressive ways across a wide range of situations. Moreover, among the 10 persons experiencing more than a single instance of victimization, general interpersonal competence was signiÞcantly lower than for either the 21 single instances of victimization (p < .05) or the 52 nonvictims ( p < .01). A subset of 21 victims and 19 nonvictims also provided reactions to hypothetical scenarios that depicted common situations that these participants might expect to encounter, like coping with queue jumping and being shouted at in public. Consistent with the main result, victims were much more likely than nonvictims to report that they would respond by saying or doing something abusive or confrontative. Nonvictims on the other hand were more likely to say that they would withdraw quietly. These Þndings strongly conÞrmed the relevance of SparksÕs construct of precipitationÑin this study, the operationalization of the idea that angry or aggressive responses in a potentially threatening situation can contribute to an interaction, the end result of which is an assault to the victim by the perpetrator. Precipitation variables produced a correct classiÞcation for victims and nonvictims of 74%. Beyond this outcome, however, the contributions of factors from SparksÕs model
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were only marginal. Although nonvictims were reliably older than victims (means were about 42 and 34 years respectively), neither this nor the other vulnerability variables inßuenced predictability. What is more, our analyses failed to Þnd anything of signiÞcance about the places where victimization occurred; situation variables appeared to be idiosyncratic. Encouragingly, despite fairly high levels of eccentric behaviors among both victims and novictims, there was no suggestion in these data that such mannerisms resulted in people being picked on. The older average age of nonvictims was consistent with trends in the general community but was not due to reduced levels of recreational activities among the older persons, whose patterns of activities by day, night, and location were no different from those of younger participants. Of course, for several reasons one should be cautious about extrapolating beyond what was a small study. First, as it turned out, the study was essentially concerned with the single offense of physical assault. The relevance of an angry reaction as a precipitating response to understanding an instance of assault is obvious, but other constructs emphasized by Sparks could certainly be of theoretical signiÞcance for understanding other forms of victimization. Second, sampling was nonrandom; victims were self-selected and nonvictims were recruited by careworkers according to who was available at times of data collection. It is possible, therefore, that some kind of referral bias applied, for example, by selecting particularly cooperative individuals as nonvictims. Third, our analysis of eccentric behaviors was relatively crude, being derived from an aggregate of scores across three scales from the AAMD Adaptive Behavior Scale (Nihara, Foster, Shellhas, & Leland, 1975), and it is possible that a more detailed differentiation between odd mannerisms would reveal some vulnerability variable. Fourth, although victims and nonvictims were compatible in terms of distributions of IQ, research with persons with mental retardation that relies on self-report always faces problems associated with poor comprehension and less reliable communication skills, so that the validity of responses must, to some extent, remain questionable. Fifth, cross-sectional comparison of victims with nonvictims cannot determine whether aggression causes victimization or whether experiencing assault results in feelings of anger. The latter is clearly a possibility, although the indications from self-reports and informed third-party appraisals were consistent with a trait interpretation. These various methodological shortcomings notwithstanding, we have concluded that the precipitation outcome is robust; in other words, some victims are likely to precipitate victimization by behaving in ways that are violent, aggressive, or antisocial in other ways. This conclusion supports results from Rusch et al. (1986) and Zirpoli et al. (1987), outlined in Section II,C,1. It is also consistent with Þndings by Doren, Bullis, and Benz (1996) and Sabornie (1994) that, among adolescents with learning difÞculties, those with poor control of feelings and behavior in social situations were much more likely to be victimized than those with
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adequate social skills. However, insofar as these forms of behavior are readily identiÞed, they are amenable to intervention by appropriate training.
IV. A.
INTERVENTION
A Broad-Based Approach
Sobsey (1994) has developed a framework for minimizing an individualÕs risk of abuse based on an ecological approach that focuses on the empowerment of vulnerable persons. He describes this framework as consisting of several overlapping areas of curriculum: personal safety, skills training, individual rights education, assertiveness and self-esteem training, communication skills training, social skills training, sex education, and self-defense training. This is a comprehensive curriculum aimed at redressing widespread, endemic shortcomings within the institutional care delivery system but further research is required to establish whether its implementation would serve to decrease risk of criminal victimization. B.
Training to Prevent Victimization
The research Þndings discussed above suggest that there are aspects of the interaction skills of some individuals that may exacerbate their risk of criminal victimization. Furthermore, the research suggests that these aspects are not directly linked to either intelligence or adaptive behavior within the population of people with mental retardation. These results are consistent with an extensive body of research in psychology that has identiÞed poor social competence as one of the primary impediments to successful employment and independent community living (e.g., Brickey, Campbell, & Browning, 1985; Chadsey-Rusch, 1992; Cheney & Foss, 1984; Ford, Dineen, & Hall, 1984; Greenspan & Shoultz, 1981; Salzburg, Lignugaris/Kraft, & McCuller, 1988). Another large body of empirical work describes attempts to design and implement effective strategies for improving social skill among individuals with mental retardation. Although these studies have demonstrated the efÞcacy of a range of different interventions for changing speciÞc behaviors that impact on the quality of social exchanges, reviews of this work have also highlighted a number of unresolved dilemmas (Davies & Rogers, 1985; Huang & Cuvo, 1997; Soto, Toro-Zambrana, & BelÞore, 1994). These dilemmas include (i) a lack of agreement regarding the deÞnition and components of social skills and how this constellation of behaviors differs from social competence and social awareness, (ii) the importance of contextual variables and social validation in the development of intervention programs, and (iii) the difÞculty of achieving maintenance and generalization of skills in this domain.
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These difÞculties are likely to impact on the development of treatment programs aimed at ameliorating individual risk of criminal victimization. What are the critical aspects of interactions with relatives, peers, acquaintances, and strangers that increase the risk of victimization? To what extent will programs designed to empower individuals to prevent their own victimization be maintained over time and generalize to new situations? Can social awareness be trained so that individuals know when their own behavior may be exacerbating risk? Can social competence be achieved, sufÞcient to permit an individual to access a range of appropriate behaviors that will minimize their vulnerability, irrespective of context? Although none of these issues has yet been addressed in the area of criminal victimization (with the possible exception of sexual exploitation), research from the area of training in social skills and anger control does provide pointers to possible approaches. 1. CRITICAL SOCIAL BEHAVIORS THAT IMPACT ON VICTIMIZATION Research described above, particularly in Sections II and III, suggests that inappropriate aggression, problems with anger control, and overly acquiescing or inappropriately friendly behaviors are among those behaviors likely to exacerbate risk. Attempts at developing a framework for deÞning important social behaviors have focused on distinguishing verbal from nonverbal behaviors and affective from cognitive behaviors (e.g., Trower, Bryant, & Argyle, 1978). The list of behaviors related to victimization is diverse, including both nonverbal (e.g., physical aggression) and verbal (e.g., spoken anger) behaviors and affective (e.g., need for friendship) and cognitive (e.g., failure to evaluate the ÒreasonablenessÓof oneÕs own or anotherÕs behavior). This diversity suggests that a general curriculum designed to minimize risk of victimization may fail due to lack of speciÞcity. 2. TRAINING TO REDUCE VULNERABILITY TO SPECIFIC TYPES OF CRIME One approach to deÞning the focus of the training intervention would be to target speciÞc types of crime and individuals who have already been victimized or are identiÞed as likely victims (or perpetrators). Certainly there is an extensive research literature that suggests a variety of approaches to behavior modiÞcation (e.g., Differential Reinforcement of Other Behaviors, Polvinale, 1980; Differential Reinforcement of Incompatible Behaviors, Egan, Zlomke, & Bush, 1993; restitutional overcorrection, Foxx & Azrin, 1972; token economies, Cipani & OÕReilly, 1982; and cognitive self-monitoring and self-managing interventions, Jackson & Altman, 1996) can achieve change in an individualÕs anger control and aggression or other inappropriate social behaviors (Lennox, Miltenberger, Spengler, & Erfanian, 1988). It is likely that these training programs would also mitigate risk of assault among people with poor conßict resolution skills.
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Some success has also been reported for treatment and education programs designed to teach sexual abuse prevention to persons with mental retardation. The main difÞculty with these studies is that researchers have relied on indirect assessment of the individualÕs behavior by examining verbal responses to hypothetical scenarios or have depended simply on knowledge-based measures (e.g., Hazzard, Webb, Kleemeier, Angert, & Pohl, 1991; Stilwell, Lutzker, & Greene, 1988). In addition, these programs are generally developed for young children without disabilities and the extent of their generalizability to a population of persons with mental retardation remains a question yet to be adequately addressed empirically. Where they have been designed for people with mental retardation, assessments of effectiveness have generally been minimal (e.g., Ballard, Gibson, Lawson, & Telch, 1979, cited in Poche, Brouwer, & Swearingen, 1981; Sgroi, Carey, & Wheaton, 1989). Two studies have attempted to evaluate a sexual abuse prevention program for adults with mental retardation using, among other self-report and knowledge measures, naturalistic probes (Haseltine & Miltenberger, 1990; Lumley, Miltenberger, Long, Rapp, & Roberts, 1998). Lumley et al.Õs technique involved having a male confederate approach the female participant and present a verbal Òlure.Ó These lures requested the female to participate in one of the following inappropriate behaviors: Òsiton his lap, give a backrub, reach into his pants pocket, remove clothing, watch him remove clothing, get into bed, kiss, watch a movie of people having sex, and look at pictures or magazines of naked people or of people having sexÓ(Lumley et al., p. 93). The contents of the training package consisted of an initial session on body parts, the nature of sexual and other relationships, and the need to use protection when sexually active. The second session focused on the development of protective behaviors providing a three-component criterion response to inappropriate sexual requests. The three component behaviors were refusing a sexual abuse lure, leaving the situation, and reporting it to a trusted adult. Role-play was an important teaching tool in this session. The third session extended the role-playing activities and focused on areas in which individuals had developed a need for further training. Session 4 expanded role-playing to include situations in which secrets, bribes, or threats were used as part of the lure. The Þnal session reviewed the entire content of the curriculum. Lumley et al.Õs results indicated that, although performance on tests of knowledge and self-report improved signiÞcantly over the course of the training, participants failed to achieve criterion performance during the naturalistic probes that followed treatment. The authors suggested that this might reßect limitations in the implementation of training because the same trainers posed as perpetrators during all of the role-playing, and this may have resulted in the sexual abuse prevention skills being under the stimulus control of the presence of these known individuals. A similar study involving Þve males and three females with mental retardation presented probe lures in settings where participants were frequently likely to be
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(e.g., the sidewalk in front of the subjectÕs home; Haseltine & Miltenberger, 1990). These probes were presented both before and after a training program in which instructions, modeling, rehearsal, feedback, and praise were used to teach individuals to identify and safely respond to abduction and sexual abuse situations. Results indicated that seven of the eight participants achieved criterion performance after training although two of the subjects needed additional feedback. In addition, feedback was needed during the maintenance phase to achieve criterion levels of performance. Generalization was also limited to the few scenarios presented during the probes and to probes involving strangers rather than acquaintances. The most difÞcult behavior to train in the Haseltine and Miternberger (1990) and the Lumley et al. (1998) studies was reporting the behavior to a staff member. This result is consistent with our earlier observation that many offenses against persons with mental retardation may go unreported. Research examining programs aimed at preventing sexual abuse suggests that problems with maintenance and with the generalization of victimization prevention programs are likely to be experienced. This is because the programs are likely to focus on circumscribed behavioral and environmental cues. These difÞculties are especially likely to occur in training involving personal crimes where the situations are likely to be varied and labile. Instruction aimed at preventing property crime (e.g., theft) may be more successful because it can focus on manipulation of the physical environment as a means of decreasing vulnerability (e.g., teaching people to check that doors are locked and that possessions are locked away). By contrast, training programs focused on achieving decreased vulnerability to crimes based on interaction with others (i.e., personal crimes) may be substantially more difÞcult to program, maintain, and generalize. McAfee (1998) has described a general package of self-protection training designed to achieve protection from a range of crimes. The approach differs from those described above in that the package is not tailored around a particular type of crime or speciÞc behavior, but focuses on the particular needs of the individual. This is because McAfee argues that Òconceptualand global curricula directed at avoiding victimization are not likely to be translated into behaviors that reduce risk in the individualÕs speciÞc circumstancesÓ(p. 23). In his training program, an individualÕs activities, events, and locations are analyzed for possible risk and participants respond in simulations in which they are the targets of crime. Generalization is then promoted by targeting individuals (with their permission) for a simulated crime committed in a natural setting by a person unknown to them and then, later, providing corrective feedback where required. Although no data were reported, McAfee describes anecdotal evidence that, during the three years that the program has been running, all participants, except one, who were the intended victims of real crimes had successfully avoided the crime by applying the behaviors learned in the simulations.
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3. ACHIEVING MAINTENANCE AND GENERALIZATIONÑ A COMPARISON OF RESPONSE-BASED VERSUS PROCESS-BASED PROGRAMS Recently, considerable debate has emerged in the training literature about the relative efÞcacy of behavioral (i.e., response-based) training strategies versus cognitive process strategies (e.g., Black & Langone, 1997; Gumpel, 1994; Park & Ross, 1989; Soto, Toro-Zambrano, & BelÞore, 1994). Proponents for the latter argue that a focus on overt behavior rather than cognition hinders social-skill maintenance and generalization because, inevitably, social behavior involves cognitive processes. The two different theoretical approaches can be distinguished by the kind of training that they advocate. Behaviorists, who focus on the training of speciÞc behaviors, include reinforcement, observation, modeling, role-playing, and practice in their training regimes (e.g., Agran, Salzberg, & Stowitschek, 1987; Wheeler, Bates, Marshall, & Miller, 1988). By contrast, cognitive training programs focus on instruction in decoding, decision making, and evaluating performance (i.e., the process rather than the outcome; McFall, 1982, with examples including Collect-Klingenberg & Chadsey-Rusch, 1991; Loumidis & Hill, 1997; and Park & Gaylord-Ross, 1989).5 A direct comparison of the efÞcacy of the two approaches for the acquisition and maintenance of social skills in the vocational setting was undertaken by Soto et al. (1994). Behaviors included in the behavioral studies included initiation of requests, failure to respond to the greetings of others, and following instructions for task completion. Activities included in the cognitive studies consisted of improved conversational skills and responding to criticism. The target behaviors varied considerably between studies, in response to the needs of individual participants, therefore heightening the difÞculty of comparison. Nevertheless, Soto et al. concluded that both approaches signiÞcantly improved targeted behaviors, although generalization was demonstrated in only one of the four behavioral studies and two of the three cognitive studies. Additional comparison of the efÞcacy of the two approaches was undertaken by looking at the social validation of outcomes, as deÞned by judgements about targeted behavior by signiÞcant others in the work setting and by examining actual behavior in the context of naturally occurring antecedents and consequences. Although social validation data, when obtained, did attest to the validity of the results, few studies used naturally occurring cues in their intervention stage, 5 Black and Langone (1997) have described the focus more speciÞcally as teaching people to Ò(a) formulate goals for social interaction, (b) decode or interpret cues in social contexts, (c) decide on behaviors that would best meet social goals for the situation, (d) perform the behavior, and (e) judge whether or not the performed behavior was effective in meeting their goalsÓ (p. 216).
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reserving these for the generalization stage. Soto et al. (1994) concluded that it was difÞcult to describe either approach as superior because evaluative data were limited. However, there was some indication that the cognitive approach was more likely to achieve maintenance and generalization of social skills in the work setting. Loumidis and Hill (1997) examined training of social problem-solving skills in order to distinguish factors that inßuenced its effectiveness. They deÞned social problem solving as Òthecognitive-behavioral process of discovering an effective course of action,Ówith the aim of training being Òtoequip people with generalizable strategies to be applied in a wide range of situations thus enhancing their skills for coping with future problemsÓ(p. 217). In addition, they argued that training skills of social problem solving is also likely to reduce maladaptive behaviors. Thus, this study aimed to produce cognitive behavioral change that was not context dependent, and that would assist in achieving integration into the wider nondisabled community, by training people how to deal with social problems. Following DÕZurillaand Goldfried (1971), Loumidis and Hill (1997) deÞned Þve stages to social problem solving and these were used as the basis for the training package and as baseline and outcome measures. These Þve stages consisted of problem recognition and deÞnition; ends-directed thinking, instrumental or Òmeans-end thinking,Óevaluative checking and decision making, and solution implementation and veriÞcation. The training program consisted of a 15-h package of materials that was implemented over a period of 15 to 23 weeks, with a sample of 24 community residents and 22 institutional residents. Results indicated that the full experimental sample showed clinically modest, but statistically signiÞcant, improvements in the generation of potential solutions and in the effectiveness of the problem solutions generated. Moreover, a concurrent decrease in nontargeted maladaptive behaviors was also demonstrated, suggesting some generalization. Summarizing our discussion of training issues, studies examining social problem solving and social skills training suggest that the risk of victimization for personal, ÒinteractiveÓcrimes may be mitigated by either of two approaches. The Þrst, a behavioral approach, would focus on identifying speciÞc social (or asocial) responses that may impact on either vulnerability or precipitation. For example, inappropriately acquiescing behavior might be targeted in a speciÞc training intervention targeted at minimizing risk of sexual assault. Alternatively, anger-control procedures might be taught to an individual at risk of physical assault subsequent to conßict. The difÞculty with this approach is in developing a package that provides access to the full range of discriminative stimuli and contexts that the person may encounter in their daily interactions. Without this access, problems of maintenance and generalization are likely to be evident. The alternative cognitive approach would focus on teaching individuals to recognize when an interaction involved risk and provide a range of ways of minimizing or avoiding the danger. This approach obviously has the advantage of facilitating
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generalization because it is neither context dependent nor linked to speciÞc discriminative stimuli or to crime or offender characteristics. However, signiÞcant empirical work is required to investigate whether such an approach is feasible. Important questions involve the extent to which a process-based program would produce behavior change that would maintain and generalize and whether this approach would be limited to those with mild or borderline retardation. However, McAfeeÕs (1998) work suggests that a modiÞcation to this approach, whereby some context to the training is provided by focusing on the speciÞc risks an individual is likely to experience, might improve training effectiveness without sacriÞcing generalizability.
V. A.
IMPLICATIONS OF HEIGHTENED RISK
Service Delivery
Research described here suggests that people involved in delivering residential and employment services and those involved in the criminal justice system need to be cognizant of the high risk of victimization among people with mental retardation. In order to conÞrm, and to monitor change in this risk, it is important that governmental agencies involved in collection of crime statistics and victimization surveys include population descriptors relevant to mental retardation in their data collection. It is also important that care staff encourage people to report their victimization so that its occurrence can be addressed as a priority by police and courts as well as by agencies delivering services to people with mental retardation. Inevitably, in some cases this will lead to organizations and individual staff having to deal with a possible conßict of interests if a perpetrator is found to be a fellow staff member or another client. Nevertheless, it is the responsibility of the agency to recognize the rights of the victimized individual and not to negate these rights by minimizing the severity of the criminal act. Moreover, given generally poor communication skills among people with mental retardation, it is essential that care staff be trained to identify instances of victimization. If this training is also extended to include the proactive identiÞcation of risk-enhancing behaviors, incidents of victimization may even be prevented from developing by astutely targeted and well delivered training programs. It is also possible that many current training programs that aim to prevent sexual assault may be of limited value because, with high frequency, they focus on Òstrangerdanger.ÓAs noted above, the fact that most sexual assault of persons with mental retardation is perpetrated by an acquaintance is open to very different interpretations; either the programs effectively prevent abuse by strangers or they fail to address the main sources of danger. However, given the observed high incidence of abuse by an acquaintance, it would seem sensible to focus on this issue
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directly rather than to rely on a training package that requires generalization from an emphasis on stranger danger. This dilemma highlights the important role that ecological validation should play in targeting victim behaviors for intervention. Police and court staff must be encouraged to recognize the possibility of previously unreported, and even unrecognized or misunderstood, criminal exploitation of persons with mental retardation. Training programs to enhance the interviewing skills of members of these groups would be a useful Þrst step. B.
Future Research
Our literature search suggested that a good deal of relevant research sponsored by government and nongovernment agencies has been disseminated only within relatively circumscribed circles and such materials are therefore extremely difÞcult to obtain. Future researchers operating outside of an academic, peer-review context may help to advance knowledge in this Þeld by ensuring that their work is accessible to large electronic bibliographic databases. This review has described some empirical evidence to support the proposition that the victimization of people with mental retardation can, in part, be related to behaviors of the victim. By drawing attention to this issue, it is not our intention to suggest that the empirically established higher incidence of criminal victimization faced by people with mental retardation is predominantly caused by this single consideration. Far from it; we recognize that higher risk must realistically be seen as reßecting interaction between a broad range of contributory factors that includes personal characteristics, poor social skills, caregiver characteristics, and organizational practices, especially those issues of power imbalance emphasized by Sobsey (1994). Given that substantial abuse occurs within residential settings, a worthwhile question for future research would be whether risk of victimization for an individual who has poor interpersonal skills is reduced by changing that personÕs living arrangements from congregate to independent housing. Moreover, this chapter has highlighted the relative paucity thus far of evidence to support a model based predominantly on victim characteristics and the difÞculty of conclusively establishing a causal link between antecedent behavior and victimization. SpeciÞcally, it is not yet clear whether the aggressive behaviors of those who experience assault precede or follow the experience of assault or whether poor self-esteem and overly acquiescent behavior precedes or follows sexual assault. This will be a difÞcult issue to settle. Ideally, to test causality, a longitudinal study is required in which individuals previously identiÞed on behavioral grounds as being at risk for victimization are followed across time and compared for victimization experiences with a matched control group. Based on Nettelbeck et al.Õs (2000) conclusion, that trait not state characteristics of anger and aggression were involved (Section III), we would predict that aggression precedes victimization and not the other way around. However, realistically any adequate longitudinal
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design would be very difÞcult to achieve. Ethical considerations prevent a true test of the hypothesis because failure to intervene with behaviors deemed likely to exacerbate risk of victimization is unacceptable. Moreover, except across a lengthy period of time a null outcome (i.e., aggression did not result in victimization) would not necessarily negate the possibility of future veriÞcation should opportunity for victimization change. However, until now virtually no research apart from our own study has addressed the possibility that victim characteristics can result in higher risk of victimization. Moreover, results from our recent research into this issue, as summarized above, have encouraged us to suggest that this approach might identify problem behaviors that could be addressed directly and reduced by educational intervention. In that sense we see our suggestion as supplementing SobseyÕs (1994) broad ecological approach, not opposed to it. Notwithstanding the problems of achieving an appropriate experimental design to test causality from victim behavior, we maintain that it is important that further work be conducted in order to examine SparksÕ(1982) model more fully. It will be necessary to explore further ways of operationalizing each of the factors and to investigate how these factors may interact to inßuence risk of victimization. Another major issue requiring examination is that of Þrst deÞning and then identifying the occurrence of a crime when the victim (or offender) has mental retardation. Research described here suggests that different deÞnitional criteria may implicitly, or even explicitly, be applied when an individual with mental retardation is involved in a criminal episode. Finally, we think it is important that interventions designed to minimize the risk of victimization should be examined for maintenance and generalization. Only interventions that change relevant behaviors, and that generalize to a range of appropriate discriminative stimuli, will prove useful in decreasing the incidence of victimization among persons with mental retardation.
VI.
SUMMARY AND CONCLUSIONS
Persons with mental retardation are signiÞcantly more at risk than others of being victims, particularly of crimes against the personÑrobbery , sexual assault, and physical assault. Sexual assault is highest against women but, particularly within institutional residential settings, high incidence of victimization of men has been found also. The perpetrator of the offense is frequently another person with mental retardation who may be familiar to the victim and these circumstances are sometimes accepted by care staff and by personnel within the criminal justice system as diminishing the severity of the offense. However, such outcomes contravene basic rights of those victims and training for relevant staff to identify victimization is necessary.
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We have argued that, in order to understand better why victimization of people with mental retardation occurs, a model of victimology is required that incorporates recognition that in some instances a victimÕs behavior can contribute to the outcome. This approach extends current theory that emphasizes the major contributory role of environmental factors, particularly within institutional settings, to high levels of victimization among people with mental retardation. Recognizing that victim characteristic can play some part offers the prospect that contributory behaviors can be identiÞed and targeted by appropriate training intervention. A model suggested by Sparks (1982), which distinguishes between behavioral aspects in terms of whether they render the individual more vulnerable or precipitate or facilitate an offense provides a useful theoretical framework within which to address this aspect of victimization. Applying this model, we have found that victims with mental retardation are indistinguishable from nonvictims in terms of IQ and commonly employed measures of adaptive behaviors. However, victims have reliably registered poorer levels of interpersonal competence. This result reßects either acquiescence to unreasonable requests or confrontative, aggressive behavior. Future research that validates and extends knowledge of behaviors that impact upon risk of victimization is critical before appropriate training procedures can be developed.
ACKNOWLEDGMENTS Research by the authors referred to in Section III was supported by a grant from the Criminology Research Council (Australia). The views expressed are the authorsÕown and are not necessarily those of the Council.
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Ford, L., Dineen, J., & Hall, J. (1984). Is there life after placement? Education and Training of the Mentally Retarded, 19, 291Ð296. Foxx, R. M., & Azrin, N. H. (1972). Restitution: A method of eliminating aggressive-disruptive behavior of retarded and brain damaged patients. Behaviour Research and Therapy, 10, 15Ð27. Friedrich, W. N., & Boriskin, J. A. (1978). Primary prevention of child abuse: Focus on the special child. Hospital and Community Psychiatry, 29, 248Ð256. Furey, E. M. (1989). Abuse of persons with mental retardation: A literature review. Behavioral Residential Treatment, 4, 143Ð154. Furey, E. M. (1994). Sexual abuse of adults with mental retardation: Who and where. Mental Retardation, 32, 173Ð180. Furey, E. M., & Niesen, J. J. (1994). Sexual abuse of adults with mental retardation by other consumers. Sexuality and Disability, 12, 285Ð295. Furey, E. M., Niesen, J. J., & Strauch, J. D. (1994). Abuse and neglect of adults with mental retardation in different residential settings. Behavioral Intervention, 9, 199Ð211. Furey, E. M., GranÞeld, J. M., & Karan, O. C. (1994). Sexual abuse and neglect of adults with mental retardation: A comparison of victim characteristics. Behavioral Intervention, 9, 75Ð86. Garkawe, S. (1995). Victims of crime and law and order ideology: A critical analysis. Australian Journal of Social Issues, 30, 425Ð444. Garofalo, J. (1986). Lifestyles and victimization: An update. In E. A. Fattah (Ed.), From crime policy to victim policy. London: Macmillan. Gorman-Smith, D., & Matson, J. L. (1992) Sexual abuse and persons with mental retardation. In W. OÕDonohue& J. H. Greer (Eds.), The sexual abuse of children: Theory and research (Vol. 1, pp. 285Ð306).Hillsdale, NJ: Erlbaum. Gottfredson, M. R. (1981). On the etiology of criminal victimization. Journal of Criminal Law and Criminology, 72, 714Ð726. Gottfredson, M. R. (1984). Victims of crime: The dimensions of risk. London: HMSO (HORS No. 81). Greenspan, S. (1979). Social intelligence in the retarded. In A. R. Ellis (Ed.), Handbook of mental deÞciency, psychological theory and research (2nd ed., pp. 483Ð531).Hillsdale, NJ: Erlbaum. Greenspan, S., & GranÞeld, J. M. (1992). Reconsidering the construct of mental retardation: Implications for a model of social competence. American Journal on Mental Retardation, 96, 442Ð 453. Greenspan, S., & Love, P. F. (1997). Social intelligence and developmental disorder: Mental retardation, learning disabilities, and autism. In W. E. MacLean, Jr. (Ed.), EllisÕhandbook of mental deÞciency, psychological theory and research (pp. 311Ð342),Mahwah, NJ: Erlbaum. Greenspan, S., & Shoultz, B. (1981). Why mentally retarded adults lose their jobs: Social competence as a factor in work adjustment. Applied Research in Mental Retardation, 2, 23Ð38. Greenspan, S., Switzky, H., & GranÞeld, J. (1996). Everyday intelligence and adaptive behavior. In J. Jacobson & J. Mulick (Eds.), Manual of diagnosis and practice in mental retardation (pp. 127Ð 135). Washington, DC: American Psychological Association. Grossman, H. (Ed.). (1973). Manual on terminology and classiÞcation in mental retardation (Special Publication No. 2). Washington, DC: American Association on Mental DeÞciency. Gumpel, T. (1994). Social competence and social skills training for persons with mental retardation: An expansion of a behavioral paradigm. Education and Training in Mental Retardation and Developmental Disabilities, 29, 194Ð201. Haseltine, B., & Miltenberger, R. G. (1995). Teaching self-protection skills to persons with mental retardation. American Journal on Mental Retardation, 95, 188Ð197. Hazzard, A., Webb, C., Kleemeier, C., Angert, L., & Pohl, J. (1991). Child sexual abuse prevention: Evaluation and one-year follow-up. Child Abuse and Neglect, 15, 123Ð138. Heber, R. A. (1961). A manual on terminology and classiÞcation in mental retardation. American Journal on Mental Retardation (monograph supplement).
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Herrenkohl, E. C., & Herrenkohl, R. C. (1981). Explanations of child maltreatment: A preliminary appraisal. Durham, NH: Centre for Social Research National Conference for Family Violence Researchers. Hindelang, M., Gottfredson, M., & Garofalo, J. (1991). Victims of personal crime: An empirical foundation for a theory of personal victimization. Cambridge, MA: Ballinger. Huang, W., & Cuvo, A. J. (1997). Social skills training for adults with mental retardation in job-related settings. Behavior ModiÞcation, 21, 3Ð44. Jackson, T. L., & Altman, R. (1996). Self-management of aggression in an adult male with mental retardation and severe behavior disorders. Education and Training in Mental Retardation and Developmental Disabilities, 31, 55Ð65. Jensen, G. F., & BrownÞeld, D. (1986). Gender, lifestyles and victimization: Beyond routine activities. Violence and Victims, 1, 85Ð99. Johnson, K., Andrew, R., & Topp, V. (1988). Silent victims: A study of people with intellectual disabilities as victims of crime. Victoria, Australia: OfÞce of the Public Advocate. Karmen, A. (1990). Crime victimsÑAn introduction to victimology (2nd ed.). PaciÞc Grove, CA: Brooks/Cole. Kebbell, M. R., & Hatton, C. (1999). People with mental retardation as witnesses in court: A review. Mental Retardation, 37, 179Ð187. Kennedy, L. W., & Forde, D. R. (1990). Routine activities and crime: An analysis of victimization in Canada. Criminology, 28, 137Ð151. Lang, R. E., & Kahn, J. V. (1986). Teacher estimates of handicapped student crime victimization and delinquency. Journal of Special Education, 20, 359Ð365. Lennox, D. B., Miltenberger, R. G., Spengler, P., & Erfanian, N. (1988). Decelerative treatment practices with persons who have mental retardation: A review of Þve years of literature. American Journal on Mental Retardation, 92, 492Ð501. Longo, R., & Gochenour, C. (1981). Sexual assault of handicapped individuals. Journal of Rehabilitation, 47, 24Ð27. Lorber, R., Felton, D. K., & Reid, J. B. (1984). A social learning approach to the reduction of coercive process in child abuse families: A molecular analysis. Advances in Behavior Research & Theory, 6, 29Ð45. Loumidis, K. S., & Hill, A. (1997). Training social problem-solving skill to reduce maladaptive behaviours in intellectual disability groups: The inßuence of individual difference factors. Journal of Applied Research in Intellectual Disabilities, 10, 217Ð237. Luckasson, R. (1992). People with mental retardation as victims of crime. In R. W. Conley, R. Luckasson, & G. N. Bouthilet (Eds.), The criminal justice system and mental retardation: Defendants and victims (pp. 209Ð220).Baltimore, MD: Paul Brookes. Luckasson, R., Coulter, D. L., Polloway, E. A., Reiss, S., Schalock, R. L., Snell, M. E., Spitalnik, D. M., & Stark, J. A. (1992). Mental retardation: DeÞnitionclassiÞcation,and systems of support (9th ed.). Washington, DC: American Association on Mental Retardation. Luckenbill, D. F. (1975). Criminal homicide as a situated transaction. Social Problems, 25, 176Ð186. Lumley, V. A., Miltenberger, R. G., Long, E. S., Rapp, J. T., & Roberts, J. A. (1998). Evaluation of a sexual abuse prevention program for adults with mental retardation. Journal of Applied Behavior Analysis, 31, 91Ð101. Mathias, J., Nettelbeck, T., & Willson, R. (1996). A reply to Greenspan and McGrewÕs (1995). Need for theory-based methods to test theory-based questions. Research in Developmental Disabilities, 17, 153Ð160. Mathias, J. L., & Nettelbeck, T. (1992a). Validity of GreenspanÕs models of adaptive and social intelligence. Research in Developmental Disabilities, 13, 113Ð129. Mathias, J. L., & Nettelbeck, T. (1992b). Reliability of seven measures of social intelligence in a sample of adolescents with mental retardation. Research in Development Disabilities, 13, 131Ð143.
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McAfee, J. K. (1998). Individuals with signiÞcant disabilities who are victims of crime. TASH Newsletter, 24(9), 21Ð24,30. McFall, R. M. (1992). A review and reformulation of the concept of social skills. Behavioural Assessment, 4, 1Ð33. McNulty, C., Kissi-Deborah, R., & Newsom-Davies, I. (1995). Police involvement with clients having intellectual disabilities: A pilot study in South London. Mental Handicap Research, 8, 129Ð136. Mendelsohn, B. (1956). Une nouvelle branche de la science bio-psychosociale: La victimologie. Review Internationale de Criminologie et de Police Technique, 11, 95Ð109. Miethe, T. D., & Meier, R. F. (1990). Opportunity, choice, and criminal victimzation: A test of a theoretical model. Journal of Research in Crime and Delinquency, 27, 243Ð266. Miethe, T. D., Stafford, M. C., & Long, J. S. (1987). Social differentiation in criminal victimization: A test of routine activities/lifestyle theories. American Sociological Review, 52 (April), 184Ð194. Morrison, S. (1993). Both sides of the story: A comparison of the perspectives of offenders and victims involved in a violent incident. Research Bulletin, 34, 26Ð30. Mullins, J. B. (1986). The relationship between child abuse and handicapping conditions. Journal of School Health, 56(4), 134Ð1316. Nettelbeck, T., Wilson, C., Potter, R., & Perry, C. (2000). The inßuence of interpersonal competence on personal vulnerability of persons with mental retardation. Journal of Interpersonal Violence, 15, 46Ð62. Nihira, K., Foster, R., Shellhas, M., & Leland, H. (1975). AAMD Adaptive Behavior Scale: Manual. Washington, DC: American Association on Mental DeÞciency. Park, H., & Gaylord-Ross, R. (1989). A problem-solving approach to social skills training in employment settings with mentally retarded youth. Journal of Applied Behavior Analysis, 22, 373Ð380. Perlman, N., & Ericson, K. (1992). Interviewing developmentally handicapped persons: The ability of developmentally handicapped individuals to accurately report on witnessed events. In J. Casselman (Ed.), Law and mental health (pp. 202Ð206).Brussels: Leuven. Poche, C., Brouwer, R., & Swearinggen, M. (1981). Teaching self-protection to young children. Journal of Applied Behavior Analysis, 14, 169Ð176. Polvinale, R. A., & Lutzker, J. R. (1980). Elimination of assaultive and inappropriate sexual behavior by reinforcement and social-restitution. Mental Retardation, 18, 27Ð30. Rosser, K. (1990). A particular vulnerability. Legal Service Bulletin, 15(1), 32Ð34. Rusch, R. G., Hall, J. C., & Griffen, H. C. (1986). Abuse-provoking characteristics of institutionalized mentally retarded individuals. American Journal of Mental DeÞciency, 90, 618Ð624. Sabornie, E. J. (1994). Social-affective characteristics in early adolescents identiÞed as learning disabled and nondisabled. Learning Disability Quarterly, 17, 268Ð279. Salzburg, C. L., Lignugaris/Kraft, B., & McCuller, G. L. (1988). Reasons for job loss: A review of employment termination studies of mentally retarded workers. Research in Developmental Disabilities, 9, 153Ð170. Senn, C. Y. (1988). Vulnerable: Sexual abuse and people with an intellectual handicap. Downsview, Ontario, Canada: G. Allan Roeher Institute. Sgroi, S. M., Carey, J. A., & Wheaton, A. B. (1989). Sexual abuse avoidance training for adults with mental retardation. In S. Sgroi (Ed.), Vulnerable populations: Sexual abuse treatment for children, adult survivors, offenders and persons with mental retardation (Vol. 2, pp. 203Ð216). New York: Lexington Books. Skogan, W. G. (1981). Issues in the measurement of victimization. Washington, DC: Bureau of Justice Statistics. Sobsey, D. (1988). Research on sexual abuse: Are we asking the right questions? Newsletter of the American Association on Mental Retardation, 1(4), 2, 8. Sobsey, D. (1994). Violence and abuse in the lives of people with disabilities: The end of silent acceptance? Baltimore, MD: Paul Brookes.
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Sobsey, D., & Varnhagen, C. (1989). Sexual abuse and exploitation of people with disabilities: Toward prevention and treatment. In M. C. Sapo & L. Gougen (Eds.), Special education across Canada: Challenges for the 90s (pp. 199Ð218).Vancouver: Centre for Human Development and Research. Soto, G., Toro-Zambrana, W., & BelÞore, P. J. (1994). Comparison of two instructional strategies on social skills acquisition and generalization among individuals with moderate and severe mental retardation working in a vocational setting: A meta-analytical review. Education and Training in Mental Retardation and Developmental Disabilities, 29, 307Ð320. Sparks, R. F. (1981). Multiple victimization: Evidence, theory and future research. Journal of Criminal Law and Criminology, 72, 762Ð778. Sparks, R. F. (1982). Research on victims of crime. Washington, DC: U.S. Government Printing OfÞce. Stephenson, G. M. (1997). The psychology of criminal justice. Oxford: Blackwell. Stilwell, S. L., Lutzker, J. R., & Greene, B. F. (1988). Evaluation of a sexual abuse prevention program for preschoolers. Journal of Family Violence, 13, 269Ð281. Stimpson, L., & Best, M. C. (1991). Courage above all: Sexual assault against women with disabilities. Toronto, Ontario, Canada: Disabled WomenÕs Network Canada. Stromsness, M. M. (1993). Sexually abused women with mental retardation: Hidden victims, absent resources. Women and Therapy, 14, 139Ð152. Trower, P., Bryant, B., & Argyle, M. (1978). Social skills and mental health. Pittsburgh, PA: Univ. of Pittsburgh Press. Turk, G., & Brown, H. (1993). The sexual abuse of adults with learning disabilities: Results of a two year incidence survey. Mental Handicap Research, 6, 193Ð216. Valenti-Hein, D. C., & Schwartz, L. D. (1993). Witness competency in people with mental retardation: Implications for prosecution of sexual abuse. Sexuality and Disability, 11, 287Ð294. Von Hentig, H. (1948). The criminal and his vitim. New Haven: Yale Univ. Press. Wheeler, J. J., Bates, P., Marshall, K. J., & Miller, S. R. (1988). Teaching appropriate social behavior to a young man with moderate mental retardation in a supported competitive employment setting. Education and Training in Mental Retardation and Developmental Disabilities, 23, 105Ð106. Wilson, C., & Brewer, N. (1992). The incidence of criminal victimization of individuals with an intellectual disability. Australian Psychologist, 27, 114Ð117. Wilson, C., Seaman, L., & Nettelbeck, T. (1996). Vulnerability to criminal exploitation: Inßuence of interpersonal competence differences among people with mental retardation. Journal of Intellectual Disability Research, 40, 10Ð19. Wolfgang, M. E. (1968). Victim-precipitated criminal homicide. Journal of Criminal Law, Criminology, and Police Science, 48, 4Ð11. Zirpoli, T. J., Snell, M. E., & Lloyd, B. H. (1987). Characteristics of persons with mental retardation who have been abused by caregivers. Journal of Special Education, 21, (2), 31Ð41.
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The Parent with Mental Retardation STEVE HOLBURN THE NEW YORK STATE INSTITUTE FOR BASIC RESEARCH IN DEVELOPMENTAL DISABILITIES STATEN ISLAND, NEW YORK
TIFFANY PERKINS THE GRADUATE SCHOOL AND UNIVERSITY CENTER OF THE CITY UNIVERSITY OF NEW YORK AND THE NEW YORK STATE INSTITUTE FOR BASIC RESEARCH IN DEVELOPMENTAL DISABILITIES STATEN ISLAND, NEW YORK
PETER VIETZE THE NEW YORK STATE INSTITUTE FOR BASIC RESEARCH IN DEVELOPMENTAL DISABILITIES STATEN ISLAND, NEW YORK
I.
INTRODUCTION
During the last half of the 20th century immense changes occurred regarding attitudes toward, and treatment of, persons with mental retardation. We began this journey with the growing realization that life in large institutional settings was degrading, demoralizing, and developmentally constricting and that living in the mainstream of life could be a reality. This trend was led by parents who demanded better treatment for their institutionalized offspring and bolstered by legal advocacy and support from professional organizations. Earlier in the century, the view that intelligence was Þxed gave way to an increasing acknowledgement of brain plasticity and the development of early intervention programs to facilitate development in early childhood. More recently, we have found that individualizing INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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services is a feasible and effective means of helping individuals with mental retardation realize their full potential. Furthermore, we have come to recognize that individuals with cognitive disabilities have the right, and most often the capacity, to choose their own goals and lifestyles, a struggle not unlike colonialists seeking freedom from their motherland. Indeed, the recent self-advocacy and selfdetermination movements are gathering strength as the drive for inclusion in all sectors of daily life expands. A natural consequence of these trends is the inevitable union of individuals with mental retardation and the ensuing pregnancies and births. However, the right to parenthood seems to involve a swirl of personal, social, and legal issues that sometimes collide more than they connect. Even the most Òinclusion-orientedÓ professionals and advocates are cautious in acknowledging this right, perhaps because the attainment of parenthood gives rise to the most signiÞcant consequences and challenges of any human endeavor. If there is a ÒconstantÓin this area, it is that positive treatment of parents with mental retardation has waxed and waned throughout history (see Rosen, Clark, & Kivitz, 1976; Scheerenberger, 1983), although in general, the treatment has been poor. In the relatively short time period of the 20th century alone, our ambivalence about such parents has ranged from viewing them as an egregious threat to our culture to citizens who are entitled to the same basic rights and pleasures as everyone else. Although the realities for parents usually lag behind this latter endorsement, we are currently in an unusually positive era in the history and treatment of parents with mental retardation. The current chapter considers both research and commentary on how parents with mental retardation act as parents and how they facilitate the development of their children. In our review of the research literature, we have attempted to piece together an accurate picture of what life is like for a parent with mental retardation. In addition to a phenomenological perspective, this chapter provides a historical account of the treatment of parents with mental retardation, an analysis of epidemiological efforts to date, and a review of supports and services that are recommended by researchers and practitioners. Perhaps most importantly, we have attempted to answer the questions, ÒWhatkind of parenting is provided by the parent with mental retardation?Óand ÒIsit adequate?ÓWe have included both quantitative and qualitative research in addressing these topics. The chapter focuses more on the parent and less on pertinent subjects like the child or training procedures for the parent, although some aspects of intervention are addressed. [Readers who are interested in a more thorough examination of parent intervention research are referred to FeldmanÕs (1994) review of outcome studies for parents with mental retardation.] Thus, although we have not provided an exhaustive treatment of all issues relevant to parenting, our review is quite extensive.
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HISTORICAL TRENDS AND TREATMENT
The Þrst attempts at organized care and treatment of people with mental retardation in America began enthusiastically in the mid 1800s with the beginnings of the institutional movement. This movement was a spin-off from an institutional program developed by Guggenbuhl in Switzerland in 1842, who attempted to cure children with cretinism with mountain air, a balanced diet, exercise, sensory training, and structured education (Scheerenberger, 1983). In America the movement was not a curative endeavor; rather, it was predicated on the belief that people with mental retardation could be temporarily removed from society, taught useful skills in a protected environment, and return as productive members of society (Wolfensberger, 1975). However, it is likely that the founders of the institutional movement did not envision the teaching of parenting skills to potential parents as preparation for their reentry to society. By the turn of the century, long after GuggenbuhlÕs project was deemed a failure in Europe, it was clear that the institutions in America were not accomplishing their noble mission of habilitation, and the hope that had characterized the earlier era had turned to suspicion and disparagement, particularly toward women with mental retardation. Now, once admitted to an institution, a resident was not likely to leave at all. This change is evident in a warning issued by Bullard in 1910 in discussing the treatment of young women with mental retardation: Few of these girls permanently escape, unless they are specially cared for by wise and understanding people. Their care demands unceasing vigilance and constant thought, which can rarely be properly exercised outside of an institution. As a fact, these girlsÑunless cared for permanently in an institutionÑusually become immoral or are led away to make bad marriages. In either case their children are apt to be mentally defective, with more or less pronounced animal instincts, diseased and depraved, a curse and menace to the community. (cited by Wolfensberger, 1975, p. 35)
The emergence of the eugenics movement signaled a changing sentiment about people with mental retardation, and it ensured the continued use of institutions, but this time as vehicles of protection from these people. Illogical eugenics assumptions led to the conclusions that mental retardation was an irreversible condition, passed solely through genetic inheritance and characterized by increased fertility and promiscuity. The eugenics movement prompted irrational fears of a dangerous and growing element in our society that might be jeopardizing the survival of the species (Rosen, Clark, & Kivitz, 1976). In the early 1900s, eugenics interests heavily inßuenced professional perspectives, as evidenced by the condemnation of motherhood by women with mental retardation in what was presumably the most respected textbook of the period on mental deÞciency. According to Tredgold (1915), the behavior of mothers
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with mental retardation was so immoral and revolting that Ò.. . the propagation by aments is both a terrible and extensive evilÓ(p. 454). The parents and their progeny were generally believed to be degenerate, criminally inclined, and often insane. Accordingly, the prevailing treatments were prohibition of marriage, institutionalization, and involuntary sterilization. Some ofÞcials even speculated about euthanasia to defend against this perceived threat to civilized culture (Wolfenberger, 1975) and, more speciÞcally, the use of a ÒlethalchamberÓ(Tredgold, 1915, p. 455) was proposed. Later, in 1927, the argument of sterilization versus euthanasia seems to have been settled with an infamous Supreme Court case, Buck v. Bell. Carrie Buck was an 18-year-old woman with mental retardation who lived in the same institution as her mother and who had an illegitimate child with mental retardation. The court decision read, in part, ÒItis better for all the world, if instead of waiting to execute degenerative offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unÞt from continuing their kind . . . [by] . . . cutting of the fallopian tubes . . . three generations of imbeciles is enough!Ó(cited by Scheerenberger, 1983, p. 192). By the mid 1900s the focus on parents with mental retardation had shifted from fears of propagation to concerns about the welfare of the family, especially the children (Budd & Greenspan, 1984; Mickelson, 1949). For example, according to Scheerenberger (1983), a particularly signiÞcant event for children in the 1950s was the acceptance by public schools of their responsibility to educate those who fell into the category of the trainable mentally retarded. Scheerenberger (1983) also noted that by 1940, most states had discarded notions of restricted marriage, sterilization, and institutionalization as methods of managing the numbers of people with mental retardation. Nonetheless, this progress was not uniform. For example, nearly a decade later Mickelson (1949) reported that the predominant treatments for parents with mental retardation in Minnesota were institutionalization, sterilization, and supervision, remedies eerily reminiscent of the eugenics period. In addition, euthanasia was apparently still considered by some professionals to be a reasonable option, as indicated by Tredgold and Soddy (1956), who noted, ÒMany clinicians believe it would be an economical and humane procedure were their existence to be painlessly terminated . . . Ó(p. 398), particularly for those who are Òunlovable, and unloving,Óand capable only of forming a relationship on the basis of Ò.. . egocentric dependence of a baby . . . Ó(p. 398). Despite the lingering eugenics beliefs and containment approaches for managing people with mental retardation, advances in knowledge about the etiology of mental retardation were correcting the assumption that it is principally transmitted genetically from generation to generation. Heredity was being recognized as only one of many factors in determining intellectual disability (Drew, Logan, & Hardman, 1984), and investigators were challenging the ÒconstancyÓof intelligence and becoming more interested in the potency of the environment (McCandless, 1952). During the mid 1900s, the perspective was shifting from
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the mother as apocalyptic social menace to the mother as inadequate parent, as captured by SarasonÕs (1953) chief concern that the intellectually limited mother does not plan to have a child; she is annoyed by it, gives it little attention, and is incapable of adequately caring for it. This changing sentiment set the occasion for more constructive speculation that would follow. In the 1970s and 1980s a number of factors continued to soften the publicÕs perspective of parents with mental retardation. For one thing, it was becoming clear that, as a rule, these parents do not have more children than other parents. In fact, research was showing that most adults with mental retardation say they do not want to have children (Andron & Sturm 1973; Edgerton, 1967). Interestingly, Feldman (1986) discussed several sociological factors favoring mothers with mental retardation, including deinstitutionalization, court decisions supporting equal-rights advocacy, and the banning of involuntary sterilization. He asserted that, as a result of these events, more people with mental retardation want to have children, and recently, others have stated that more people with mental retardation are getting married and having children (Baker, Blacher, Kopp, & Kraemer, 1997), although no data are available to conÞrm this likely trend. Another reason for the more tolerant attitude was posited by Booth and Booth (1994), who noted an overdue public acknowledgment that parenting by people with mental retardation was more widespread in the past than has been ofÞcially recognized. Perhaps most indicative of the more afÞrmative view was a growing belief that people with mental retardation have the right to develop relationships that include sexual expression (de la Cruz & La Veck, 1973). EdgertonÕs work (1967, 1973) revealed that people with mental retardation are capable of appropriate sexual self-control, contrary to prior professional assumptions that they have less ability than others to control their sexual impulses (Bass, 1963). In addition to the increased technical understanding about the causes of mental retardation and bourgeoning egalitarian sentiment, a gradual accumulation of applied research was demonstrating how alterations in the environment of at-risk children could positively affect their development. Much earlier, Spitz (1945) had shown that infants reared in a prison nursery by their own mothers fared much better than infants reared in an impersonal, understaffed foundling home. The differences were shocking: the foundling home infants ÒdevelopedÓmental retardation and one-third of them died, in sharp contrast to the typical development and normal mortality rates of those who were given more affection and stimulation with their natural mothers in the prison nursery. Similar results were reported by Skeels (1966) in a follow-up study of an investigation conducted almost 30 years earlier (Skeels & Dye, 1939). These investigators traced the development of 13 children who had been moved from an understaffed orphanage to an institution for people with mental retardation, where, ironically, they were cared for by female residents and eventually placed in adoptive or foster homes. At follow up, members of this group were leading apparently normal lives,
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while 12 children who remained in the understimulating orphanage were found to have, on average, a third-grade education. Most of the latter group remained unskilled and unemployed, and some were permanently institutionalized. Heber and his colleagues (Heber, Garber, Harrington, Hoffman, & Falender, 1972; Garber, 1988) showed important beneÞt from an early intervention program for youngsters that began at ages 3 to 6 months and continued throughout their preschool years. Most of the parents had mental retardation and all lived in poverty. The program was a structured, full-day regimen of stimulation that emphasized language, and it included a maternal rehabilitation component. The authors reported IQ differences of 25 to 30 points compared to a control group. In addition, children in the experimental group were more active and more verbal with their mothers at 3 to 5 years of age. More recently, Ramey and his colleagues (Martin, Ramey, & Ramey, 1990; Ramey & Cambell, 1984) conducted a randomized clinical trial with children from 120 primarily African American families, 13 of which were headed by mothers with mild mental retardation. This work appears to be a partial replication of the Heber et al. (1972) experiment, but the children have been followed into early adulthood. All families were at risk for producing children with Òcultural-familialÓmental retardation, and the goal was to examine whether a high-quality early intervention program could prevent developmental delay. The treatment group was enrolled in an intensive educational day care program supplemented by home visiting. For children of mothers with mental retardation, at 6 and 12 months of age there was no discernable intervention effect in 6 who were assigned to early intervention compared to 7 in the control group. However, by 54 months, the mean IQ of the experimental children was 22 points higher that the control children (95 versus 73). Follow up reports of the entire sample showed signiÞcant differences favoring the treatment group over time, including less diagnoses in the mentally retarded ranges of cognitive function, fewer placements in special education, higher reading and math scores, delayed childbearing, and college attendance (Ramey, Mulvihill, & Ramey, 1996; Ramey & Ramey, 1992). The pioneering work of Spitz, Skeels, and their colleagues and more recent investigations by Heber, Ramey, and their colleagues demonstrated the value of keeping children with their mothers and the dramatic consequences of early environmental intervention. In the past 150 years, the history of the perception and treatment of parents with mental retardation in The United States has been erratic, ranging from BullardÕs admonition that Òoneevil girl can corrupt a whole villageÓ(cited by Wolfensberger, p. 35, 1975) to HaymanÕs (1990) legal argument that our society has disabled the mother with the label of mental retardation and victimized her and her family with its prejudices. A review of the historical literature reveals that todayÕs more benign, inclusionary perspective is rooted in advances in genetics, egalitarian principles, educational reform, parent education, and promising longitudinal investigations of early intervention.
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DEMOGRAPHIC TRENDS
Epidemiology
The prevalence data reported here span about 70 years and thus vary according to the prevailing deÞnitions and diagnostic practices of a given time period. Many of the studies reported statistics on individuals who were considered intellectually impaired but who scored above 70 on standardized IQ tests. In such cases, we did not include data for those individuals. We omitted entirely studies whose results were presented in a way that did not permit separation of data for participants with IQs below 70. We recommend a review by Hall (1974) for readers who are interested in summary information of parents with IQs below 85. 1. PREVALENCE OF PARENTS WITH MENTAL RETARDATION AND THEIR CHILDREN The aging standard of prevalence estimates of mental retardation in 2 to 3% of the population is based on predictions from a normal distribution of IQs (Dingman & Tarjan, 1960). However, a review of international prevalence indicates estimates of 3 to 4 per 1000, or 0.3 to 0.4%, for both severe and mild retardation (McLaren & Bryson, 1987), with severe retardation deÞned as IQ less than 50 and mild retardation as IQ between 50 and 70. Prevalence rates of mild mental retardation range widely depending on socioeconomic status, with estimates as high as 40 per 1000, or 4% (Durkin & Stein, 1996). In less developed countries, estimates of severe mental retardation are as high as 25 per 1000, or 2.5%, and estimates of mild mental retardation are not available (Durkin & Stein, 1996). We are unaware of studies that report estimates of the population percentage of people with mental retardation who are parents. Perhaps the best estimate to date of the number of parents with mental retardation can be derived from a recent study conducted by Barker and Maralani (1997), who noted that the 1993 U.S. census data reported 7 million parents with disabilities. (These parents were between ages 18 and 64, with various disabilities, and their children were under age 18.) Barker and MaralaniÕs national survey identiÞed demographic information from 1175 survey respondents who were parents with one or more disabilities. Respondent age ranged from 20 to 81, and 1 in 5 respondents had mental retardation. To the extent that this ratio is representative of the U.S. census data, we estimate that there are roughly 1.4 million parents with mental retardation (20% of 7 million) in the United States between 18 and 64 with children under age 18. An estimate of the total number of parents (parents of all ages with children of all ages) would be considerably higher. However, our estimate is challengeable on several grounds, particularly because neither the U.S. census data nor the Barker and Maralani (1997) survey were able to conÞrm diagnoses and because of sampling weaknesses, including mismatches in ages and sampling year. Thus,
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it must be concluded that there are no reliable estimates to date on the number of parents with mental retardation in the United States. According to Whitman, Graves, and Accardo (1987), the true prevalence of parents with mental retardation is unknown and possibly indeterminable. As an alternative to the impractical door-to-door census, a common approach to obtain epidemiological information about parents in a given local geographic area is the agency-informant method (Kaminer, Jedrysek, & Soles, 1981; Whitman & Accardo, 1990). Accordingly, parents are identiÞed through agency referral, although this method is likely to yield low estimates because some parents with intellectual impairment remain uninvolved with agencies. Whitman and Accardo (1990) suggested that such individuals remain unidentiÞed because they are likely to have greater cognitive abilities and stronger family support and because professionals are generally reluctant to establish identiÞcation registries. They identiÞed 402 parents (30 male, 280 female, and 92 unidentiÞed gender) and 1096 children of whom 55% lived in the home and 45% lived out of the home. The mean number of children per family was 2.8. The agency-informant method was also used by Kaminer et al. (1981) in identifying parents through a university-afÞliated pediatric clinic to which they brought their children for evaluation of developmental delay or behavior problems. Of 370 preschoolers evaluated, 45 families (44 mothers and 3 fathers) or 12% were identiÞed as having at least one intellectually limited parent. Craft and Craft (1979) evaluated 45 agency-referred couples (41 were married) in which at least one partner had mental retardation. Fourteen of these couples had a total of 30 children. Another method of gathering epidemiological data pertaining to parents with mental retardation and their children is to conduct follow-up studies of formerly institutionalized populations. In one such postinstitutional follow-up study, Brandon (1960) assessed the status of 200 deinstitutionalized women and found that 70 had given birth to 160 children. Elaborating on this approach, Reed and Reed (1965) conducted a retrospective analysis of formerly institutionalized residents. They examined the descendants of the grandparents of 289 residents of an institution in Minnesota who lived at the facility between 1911 and 1918. Thus, 50 years after the residents left the institution, retrospective analyses of six or seven generations of the families of the residents yielded information about social, economic, and intellectual status of 82,217 people. Relevant to this review, 40 women and 2 men from the 289 residents had a total of 99 children. Large-N epidemiological studies tend to cover broad geographical regions and tend to focus on the children. One eugenics-era study conducted in 1929 by the University of Vermont (Eugenics Survey of Vermont, 1929; cited by Reed & Reed, 1965), which covered VermontÕs entire population of approximately 300,000 people, found 82 unions in which one partner had mental retardation, yielding 337 children. Brock (1934) studied 3733 parents with mental retardation from England and Wales (3247 women and 486 men), yielding 8841 children. This study noted
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a ratio of about 7 women to 1 man with mental retardation who produced children. More recently, Scally (1973) examined the records of all identiÞed people with mental retardation in Northern Ireland and found that of 4631 total, 342 were married or had at least one pregnancy (310 women and 32 men), constituting 10% of the people with mental retardation above age 16, who yielded 791 children. A number of conclusions can be derived from the above epidemiological investigations. In the absence of any published reports on estimates of the number of parents with mental retardation in the United States, our own extrapolation (see above) suggests that there are likely between 1.5 and 2 million. Most epidemiological studies have located and studied representative subsamples of a local geographical region. Such studies indicate there are far more women than men who are parents with mental retardation. These parents tend to have two or three children, which, according to Whitman and Accardo (1990), is slightly higher than the birthrate of the general population, although other investigators point out that such parents do not have greater rates of offspring than other parents at the same socioeconomic level (Craft & Craft, 1979; Tymchuk, Andron, & Unger, 1987). In a countervailing Swedish report by Kollberg (1989), 49 of 51 mothers of Òlow social statusÓregistered as having mental retardation less frequently had children. Most of the children were planned, and the reasons the mothers gave for wanting children were the same as other mothers. However, it is difÞcult to interpret the KollbergÕs results because only 32 of the 51 mothers were given IQ tests and interviewed. Keltner and Tymchuk (1992) calculated an incidence of 120,000 babies per year born in the United States to mothers with mental retardation, assuming (a) fertility rates do not differ from the norm and (b) the prevalence of mental retardation is 3%. However, this Þgure is likely an overestimate because respectively (a) the birthrate among all individuals with mental retardation is relatively low (Reed & Anderson, 1973; Scally, 1973) and (b) the prevalence estimate of 3% for mental retardation has been replaced by a much lower Þgure (see Durkin & Stein,1996; McLaren & Bryson, 1987 for reviews). We are unaware of studies that have attempted to identify the proportion of people with mental retardation who become parents, which would be a formidable undertaking because many parents and their children remain ÒhiddenÓ(Whitman & Accardo, 1990). 2. PREVALENCE OF MENTAL RETARDATION IN THE CHILDREN In studying the prevalence of parents with mental retardation, an unavoidable question arises: How likely are the children to have mental retardation? Tymchuk et al. (1987) maintain that the incidence of mental retardation resulting from genetic or organic causes is not higher among children of parents with mental retardation. Nonetheless, despite the potential beneÞts of early intervention pointed out earlier, the children of parents with mental retardation are at increased risk of
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being diagnosed with mental retardation. Three of the large-N studies we reviewed reported prevalence of mental retardation in the children, and we reiterate that their results vary according to prevailing deÞnitions and diagnostic practices. In the Vermont study (Eugenics Survey of Vermont, 1929), from 82 unions in which one partner had mental retardation, 26% of the children had mental retardation; from 22 unions in which both partners had mental retardation, 44% had mental retardation. Similarly, in their retrospective analysis, Reed and Reed (1965) found respective prevalences of 15 and 40%, with a total of 18 children having mental retardation from the pool of 99. In the Brock (1934) study from England and Wales, prevalence was reported by age. There were 423 children or 24% between ages 7 to 13 who had mental retardation and 240 children or 13% over age 13 who had mental retardation. In light of the preponderance of female parents, Brock (1934) concluded that males with mental retardation contribute a relatively small part of future generations of offspring with mental retardation, a conclusion that reßected the genetic orientation of the eugenics era. The Þndings above suggest that roughly one-quarter of the children of parents with mental retardation will have mental retardation (Brock, 1934; Reed & Reed, 1965; University of Vermont, 1929). This Þgure is generally consistent with FeldmanÕs (1994) literature review, in which he concluded that most prevalence studies have found higher rates of offspring with mental retardation among parents with mental retardation compared to parents without mental retardation. Our review of the literature suggests that when both parents have mental retardation, their risk of having a child with mental retardation is at least doubled. The relationship between child IQ and parent intelligence was exempliÞed in a study of 7778 children by Higgins, Reed, and Reed (1962). When neither parent had mental retardation, the mean IQ was 107; when one parent had mental retardation, the mean IQ was 90; and when both parents had mental retardation, the mean IQ was 74. More recently, Feldman and Walton-Allen (1997) found that 27 children of mothers without mental retardation had an average IQ of 103, while 25 children whose mothers had mild mental retardation had an average IQ of 81. The risk of having a child with mental retardation was shown to be somewhat higher when the parent with retardation was the mother (Reed & Anderson, 1973), which is consistent with her greater contribution in raising the child. B.
Vulnerability to Increased Stress
It has long been recognized that people with mental retardation are prone to mental health problems (Beier, 1964; Eaton & Menolascino, 1982; Sarason 1959). Feldman, Leger, and Walton-Allen (1997) listed a number of factors that have been identiÞed in the research literature as environmental stressors affecting individuals with mental retardation, including social isolation, abuse, failure and learned helplessness, unemployment, stigmatization, and low socioeconomic
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status. Parents with mental retardation face additional stress. As has been repeatedly pointed out, such parents tend to live in impoverished environments (Fotheringham, 1971; Garber 1988; Heber et al., 1972; Greenspan & Budd, 1986; Rosenberg & McTate, 1982), which are stress laden in themselves (Conley, 1973). Various personal problems were identiÞed by Sundram, Stack, and Benjamin (1993), who surveyed 41 families in which one or more parents had intellectual limitations or developmental disabilities. In 20% of these families, one or both parents had a concomitant psychiatric diagnosis, 22% of the parents had a drug or alcohol problem, and over half reported ÒbehavioralÓdifÞculties. Although parents with mental retardation do not constitute a homogeneous class of individuals with a common history or with the same problems (Booth & Booth, 1994; Budd & Greenspan, 1984), they are likely to encounter common sources of stress, which include inadequate nutritional status (Kaminer & Cohen, 1983), fear of child removal by social service agencies (Haymen, 1990; Tymchuck & Feldman, 1991), poor prenatal care (Kaminer & Cohen, 1983; Whitman & Accardo, 1990), social isolation (Booth & Booth, 1994), and single parenthood (Rosenberg & McTate, 1982; Whitman & Accardo, 1990; Walton-Allen & Feldman, 1991). Several decades ago, Edgerton (1967, 1973) suggested that a long-standing policy of Òsexual apartheidÓ(1973, p. 245) for adults with mental retardation had eroded their self-esteem. To the extent that this phenomenon still exists today, its effects are likely intensiÞed by our societyÕs increasingly blatant sexual orientation. In an applied study by Tymchuk and Andron (1992), the authors indicated incidentally that 4 of the 9 mothers in the study had problems other than mental retardation that interfered with learning parenting skills: two parents were depressed, one had a chronic stomach problem, and one was a battered woman. Booth and Booth (1994) suggested that parents with mental retardation face a kind of double jeopardy because in addition to poor coping skills, they have fewer resources and supports. As pointed out by Lazarus (1966), people with fewer resources and supports perceive environmental pressures as more stressful. As their children mature, the parentsÕproblems intensify, particularly in the area of parental control and discipline (Johnson & Clark, 1984). Family size also contributes to stress. Whitman and Accardo (1990) found that several stress-related problems increased remarkably as the number of children in the family grew beyond two. Interestingly, parents with mental retardation tend to have realistic perceptions of the demands of parenting. Many realize that having more than one or two children may overburden their resources (Espe-Scherwindt & Crable, 1993). This Þnding is consistent with those of Whitman et al. (1987), who interviewed 42 parents with an average of 2.7 children, with an average age of 4.5 years, and concluded, ÒAlthough 93% reported satisfaction with being a parent, 71% stated emphatically that they did not want, and could not handle, any more childrenÓ (p. 638).
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It appears to us that parents with intellectual impairment are subject to inescapable stress associated with the intellectual development of their children. To the extent that parents with mental retardation have an increased likelihood of having a child with mental retardation, they are at risk of experiencing anxiety, depression, guilt, and feelings of helplessness that can befall any parent who has a child with a disability (Olshansky, 1962; Valman, 1981; Ryde-Brandt, 1988, 1990). Moreover, intellectually typical children of parents with mental retardation appear to exhibit more behavior difÞculties than their intellectually impaired counterparts (Feldman & Walton-Allen, 1997), which also can be a major source of stress. Feldman and Walton-Allen (1997) speculated that these behavior difÞculties might be an outgrowth of taking advantage of their less competent parents at an early age and rebelling against them. Although no studies have systematically investigated the age at which the child becomes more ÒknowledgeableÓ than the parent, we hypothesize that by age 7 or 8 years, the normally developing child begins to overtake the majority of parents in terms of intellectual competence. This impression is consistent with DenfeldÕs (1998) essay on family functioning and Johnson and ClarkÕs (1984) observations of parentÐchild interactions. The main point here is that the intellectual status of the child, whether low or not, appears to portend unavoidable but different types of stress for the parent. Two comparative investigations have shown that mothers with mental retardation differ signiÞcantly from other mothers in the amount of stress they experience and in the image they have of themselves. In an examination of the stress levels of 82 mothers with intellectual disabilities (IQ < 80), Feldman et al. (1997) discovered that the mothers were bearing extremely high levels of overall stress (95th percentile) as measured on the Parenting Stress Index (Abidin, 1990). Higher stress was associated with parents who had older children (school age) and who lived in more crowded environments. In another study, Tymchuk (1991) found that 27 mothers with mental retardation scored signiÞcantly lower on all subscales of the Tennessee Self Concept Scale compared to 95 mothers without mental retardation. TymchukÕs Þndings were consistent with other researchersÕconclusions that these mothers often feel discouraged and overwhelmed by their own inabilities, leading to a negative self-image (Craft & Craft, 1979; Mickelson, 1949). C.
Profile of a Parent with Mental Retardation
If there is such a person as the typical parent with mental retardation, that parent is a woman, she is single, and she is poor. As discussed above, she is likely under stress and lacking in self-conÞdence. She is often in the midst of crisis resulting from exigencies of meeting the basic daily needs of her family (Whitman, Graves, & Accardo, 1989), and she is far more likely to be depressed compared to other mothers (Tymchuk, 1994). If she has experience with the legal process, she has
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probably been treated unfairly by it (Hertz, 1979; Hayman, 1990). In a word, she is vulnerable (Mickelson, 1949). Many of her problems are similar to other parents of low socioeconomic status (Heber et al., 1972), so much so that it can be difÞcult to distinguish between the effects of mental retardation and the effects of poverty (Brandon, 1957; Borgman, 1969; Feldman & Walton-Allen, 1997). The mother with mental retardation tends to change residences more than most people (Brandon, 1957; Whitman et al., 1987, 1989), although securing adequate housing is usually an elusive goal (Craft & Craft, 1985). She is ill prepared for the demands of parenthood (Greenspan & Budd, 1986), and there is only a slim chance that she has ever had formal preparation for parenting (Whitman et al., 1987). She is not likely to have had good parenting models herself if she spent a signiÞcant portion of her life in an institutional environment or if she was raised in an impoverished, low-socioeconomic environment with inadequate parenting. Although she is more likely not to have a child with mental retardation than to have one, her chances are greater than the general population because of hereditary causes, environmental factors, or both. The likelihood that she will have a child removed by a child-protective agency ranges from 25 to 80% (Feldman, Case, & Sparks, 1992; Feldman, Sparks, & Case, 1993; Seagull & Sheurer, 1986; Sundram et al., 1993; Scally, 1973; Taylor et al., 1991; Whitman et al., 1987). In a study by Booth and Booth (1995), 50% of the children who were taken into permanent care were removed at birth or shortly thereafter. The mother with mental retardation is rarely abusive in the traditional sense. However, she is often unintentionally neglectful (Tymchuk, 1992; Tymchuk & Andron, 1990), usually through lack of knowledge, skills, and mistakes in judgments (Rosenberg & McTate, 1982) and, as such, she can jeopardize the childÕs welfare and development (Accardo & Whitman, 1990; Feldman et al., 1992, 1993; Keltner, 1992; Schilling, Schinke, Blythe, & Barth, 1982). As stated strongly by Greenspan and Budd (1986), ÒInfact, the children of mentally retarded parents are equally, if not more, ÔhandicappedÕ in their long-run development than are all but the most severely neurologically or mentally impaired youngstersÓ(p.115). The most poignant published example of the hardships a child may encounter, particularly regarding physical abuse and sexual exploitation, was recently provided by Ronai (1997) in her recollections of being raised in a family with a mentally retarded mother and a sexually abusive father. Ironically, the mother with mental retardation apparently is at risk of being sexually victimized herself by her own family and friends. In a study of 20 mothers with IQs less than 75, Seagull and Scheurer (1986) indicated that eight mothers spontaneously reported having been sexually assaulted by family and friends, with 4 of the mothers having children as a result. It is not surprising that mothers with mental retardation are often suspicious of othersÕattempts to assist them and their families. A number of investigators (Edgerton, 1967; Booth & Booth, 1994; Kaminer et al., 1981; Zetlin, Weisner, & Gallimore, 1985) have found that mothers
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with cognitive deÞcits may beneÞt greatly from the help of an unpaid, supportive person without learning problems (termed ÒbenefactorÓby Edgerton, 1967, p. 172), although it has been reported that the mothers sometimes view professional and social support as constraining (Llewellyn, 1995) and even demeaning (Zetlin et al., 1985). Interestingly, only 15% of the sample of parents with mental retardation (40 females and 2 males) reported receiving any previous input from service agencies on parenting or child rearing in the Whitman et al. (1987) study. Booth and Booth (1994) concluded that for some mothers, professionals are essential and valued; for others, they are a source of upset and trouble, often failing because of their inconsistency. In general, however, it appears that mothers beneÞt in proportion to the degree and quality of the services and supports available to them and their families (Tymchuk, 1990a, 1990b). While there is a paucity of research about mothers with mental retardation (Feldman, 1986; Tymchuk, 1992), even less is known about the father. Peck and Stephens (1965) reported that several fathers they studied lived with their parents from whom they received Þnancial and emotional support. Winik (1982) studied two couples with mild mental retardation. The fathers viewed themselves as peripheral to the study, and both were regarded by family members as having weak roles as fathers and husbands. In contrast, Budd and Greenspan (1985) demonstrated the importance of the fatherÕs role in child rearing in their report of predictors of positive parent training programs. There is simply not enough published information on fathers with mental retardation to formulate conclusive statements about them. We echo investigatorsÕconcerns that this is a fruitful but neglected topic (Greenspan & Budd, 1986; Llewellyn, 1990).
IV. A.
PARENTING ADEQUACY
A More Positive Perspective
For at least 50 years, researchers have been lamenting the tendency to illuminate the negative rather than positive contributions of parents with mental retardation (Michelson, 1949). According to Tymchuk (1990a), so much has been made of the motherÕs inadequacies, that a self-fulÞlling prophecy may be operating. Llewellyn (1997) noted that parenthood for people with intellectual disability continues to be a controversial topic, despite the trend in the Þeld to assist people in achieving socially valued roles. This tendency is likely due mostly to concern for the welfare of the parentsÕchildren, although researchers are quick to point out that mothers with mental retardation can learn parenting skills with sufÞcient instruction and follow-up support (Budd & Greenspan, 1985; Feldman, Towns, Betel, Case, Rincover, & Rubino, 1986; Llewellyn, 1997; Tymchuk 1990a; Tymchuk, 1992; Tymchuk, Yokota, & Rahbar, 1990).
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Many studies report that mothers with mental retardation, as a whole, provide adequate care to their children. Brandon (1957) reported that a group of 73 mothers with an average IQ of 73 were capable mothers, a conclusion that served as the basis for the authorÕs argument against permanently separating the mother and child. In the Mickelson (1947) study, only one-fourth of the mothers studied provided unsatisfactory care to their children (14 of the 105 mothers had IQs above 70; the mean IQ was 59). In a follow-up study of deinstitutionalized women, Ainsworth, Wagner, and Strauss (1945) noted that most of the women were doing well as parents, and many were adequately Þlling job vacancies available because of World War II. Feldman (1986) identiÞed four additional studies in which the majority of parents labeled with mental retardation were judged to be providing adequate care. In an investigation (Feldman et al., 1985) of the home environments of 12 mothers with a mean IQ of 69, scores on the HOME Inventory (Caldwell & Bradley, 1979) were within the average range, contrary to assumptions and conclusions drawn by other researchers (Robinson & Robinson, 1976; Schilling et al., 1982). In a comparative study of decision-making based on story vignettes, Tymchuk et al. (1990) compared 28 mothers with mental retardation to 28 mothers without mental retardation of the same socioeconomic status and found no signiÞcant differences on the appropriateness of decisions. In RonaiÕs (1997) Þrst-person, ethnographic account as a child of a mother with mental retardation whose estimated IQ is between 65 and 80, she recalled how wonderfully her mother protected her and played with her and how much they loved each other. The following passage conveys her ambivalence: As I write, I grieve the loss of my love for my mother, I must face the reality that I am unable to love her again in the intense, unbridled way I did as a child. But she carried me in her womb and would not abort me when grandmother begged. And she often conspired to save me from Frank. But she also beat me and delivered me to Frank for sexual abuse. She was wrong and weak in the strangest ways. Yet she was my only stability growing up, the only thing that was with me consistently over the years. DonÕt I owe her something for that? (p. 430)
We are not suggesting that RonaiÕs perspective is particularly representative, nor that her experience of sexual abuse is typical (Tymchuk, 1992, found that purposeful abuse, when it occurs, is often committed by an emotionally disturbed associate of the mother, like a husband or a partner). Rather, the excerpt illustrates how pride, garnered from the nurturance and love that a mother with mental retardation can provide, can coexist with resentment from her mistakes, as serious as they might be. A deliberately positive description of a mother with mental retardation was provided by Booth and Booth (1993), in contrasting a negatively oriented, deÞciency perspective with a positively oriented, capacity perspective of one mother, based on the principles of personal futures planning (Mount, 1994; Mount & Zwernik, 1988). Booth and Booth (1993) contend that (a) insight into the motherÕs present situation will be generated by understanding the impact of social
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pressures on her ability to cope and that (b) new options for practical support are facilitated by accentuating her interests and abilities. Certainly, service planning for the mother with mental retardation should take into account her capacity to cope and her unique talents, particularly as they impact on her role as a parent. Few would debate such principles on conceptual grounds, but we have found that implementing person-centered approaches such as personal futures planning with adults who have mental retardation requires more technical skills and organizational savvy than is typically acknowledged (Holburn, 1997; Holburn & Vietze, 1999). B.
Parent–Child Interactions
Raising a child is probably the most difÞcult and meaningful responsibility an adult can face. Much, if not most, of how we interact with our children depends on how they respond to us. These interactions constitute an undeniably reciprocal relationship. An example of the importance of this give and take was provided by Feldman et al. (1986), in which eight mothers with mental retardation were compared to eight mothers without mental retardation on numerous indices of maternalÐinfant interaction. The mothers with mental retardation performed signiÞcantly more poorly on six measures. They provided less prompting, praise, looking, imitating, playing, and talking to their infant. The children of these mothers, in turn, vocalized much less to their mothers. We tend to assume that the infants vocalized less because of the relatively low initiations of the mother (notice the phrase ÒinturnÓin the previous sentence), but the converse conclusion, that the mother initiates less because of the low infant vocalizations, must be considered and speaks to the importance of reciprocity in the relationship. The possible Òencroaching language delaysÓ (Feldman et al., 1986, p. 273) of these infants strengthens the latter interpretation. In the second phase of their study Feldman et al. (1986) taught the mothers how to praise and imitate their infants, which produced increases in vocalizations that generalized to home environments and endured at 5- to 10-month follow-up evaluations. The Þnding that mothers with mental retardation interact less with their children compared to other mothers has been borne out in other research. Even when controlling for low socioeconomic status, mothers with intellectual impairment tend to be less responsive, less sensitive, and less reinforcing than their counterparts (Feldman et al., 1989; Keltner, 1994; Tymchuk & Andron, 1992). However, in a study by Crittenden and Bonvillian (1984), a group of mothers with mental retardation were so variable in their videotaped child interactions, ranging from neglectful to highly sensitive, that no characteristic pattern of motherÐchild interactions was apparent. In another study by Unger and Howes (1988), motherÐ child interactions of infants averaging 16 months were examined in three samples of mothers, six adolescents, six with mental retardation, and six who were not
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at-risk. Mothers of the Þrst two groups engaged in signiÞcantly less symbolic play with their infants, but unfortunately the results were collapsed in a way that did not allow conclusions speciÞc to the mothers with mental retardation. Correlational analyses showed that mothers who engaged in more play were more involved with their infants in commenting, requesting, and suggesting symbolic activities. Whitman and Accardo (1990) noted several qualitative aspects about the play of parents with mental retardation. They characterized some parents as being Ò . . .so hungry for fun that he or she takes over while the child becomes a frustrated or passive onlooker as the parent plays with the toysÓ(p. 82). These authors further asserted that some mothers became so involved with their own activities that they forgot to monitor the childÕs play. A more recent parentÐchild interaction study by Feldman and colleagues (Feldman et al., 1993) was more highly controlled and had a larger sample than the Feldman et al. (1986) study. Initially, 28 mothers with mental retardation of children less than 28 months of age had fewer positive social interactions with their children compared to a contrast group of 38 mothers without mental retardation with children of similar ages. Mothers with mental retardation were then randomly assigned to an interaction-training group or an attention-control training group unrelated to interaction. By the end of training, positive interactions of mothers in the interaction-training group were (a) at the same level as the mothers of children without mental retardation and (b) higher than those of the attention-control training group, which after interaction training also increased to the level of the mothers without mental retardation. The research literature offers conßicting characterizations of the motherÕs degree of protectiveness toward her children. Greenspan and Budd (1986) hypothesized that mothers with mental retardation often treat their children in a too-old manner, which they termed ÒunderprotectivenessÓ(p. 122). They suggested that this phenomenon might explain much of the behavior that child-protective agencies consider neglectful. Johnson and Clark (1984), however, depicted mothers with mental retardation as being overprotective, as evidenced by their excessively restrictive and controlling parenting styles. As examples, they described one parent who would not allow her children to play outdoors; another who overdressed her child for the weather to the point of restricting movement; and another who slept with her children for fear they would gag or suffocate at night. The authors described such mothers as being emotionally overinvested in their children, due to their own need for emotional support. Consistent with Johnson and ClarkÕs Þndings, Robinson (1978) interviewed 32 mothers with mild mental retardation and 32 college women and found that the former reported being more overprotective toward their children in the areas of play supervision, responsibility for homework, settling quarrels with playmates, and crossing the street. A challenge for any parent is knowing what to do when faced with a situation in which one has no experience. Some investigators have suggested that
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although parents with mental retardation are certainly capable of improved parenting skills with individual instruction, they appear to have particular difÞculty with novel child-rearing situations (Budd & Greenspan, 1984) and transitions (Keltner, 1994) and they often fail to adjust their parenting styles to accommodate changes in the childÕs development (Booth & Booth, 1994; Rosenberg & McTate, 1982). As the child continues to develop and eventually surpass the parent in competence, the parent may become jealous of the child (Greenspan & Budd, 1986), which might explain why some parents with cognitive impairment impulsively mirror their childÕs aggressive behavior (Johnson & Clark, 1984) rather than patiently counsel the child following aggression. To the extent that the parent with mental retardation is associated with a low socioeconomic lifestyle, he or she is likely to rely on punishment as a primary form of discipline, according to BronfenbrennerÕs (1958) Þndings that lower class parents tend to employ physical punishment and require immediate obedience instead of seeking a reasoned solution or compromise. In the Robinson (1978) study reported above, the authors indicated that mothers with intellectual impairment reported more frequent use of physical punishment than verbal disapproval compared to the college mothers. Similarly, in the Feldman et al. (1985) study, mothers with mental retardation were signiÞcantly more likely to use punishment and restrict their childrenÕs freedom as indicated on a subscale of the HOME Inventory (Caldwell & Bradley, 1979), compared to normative HOME Inventory standards. Interestingly, the use of restriction and punishment was positively correlated with the childÕs mental development, prompting the authorsÕconclusion that mothers who used restrictive and punitive approaches were more interested and interactive with their children. Anecdotally, Keltner (1992, 1994) noted inappropriate or severe discipline techniques used by some of the mothers in her samples, many of whom Ò . . .were motivated by a desire to Ôbea good motherÕÓ(Keltner, 1994, p. 127). Several studies report conclusions about punishment or praise based on comparisons of formal observations of parentÐchildinteractions between parents with mental retardation and contrast parents. These studies focused on improving general interaction skills rather than child discipline. Tymchuk and Andron (1992) observed that praising by mothers with mental retardation occurred less than that of contrast mothers, but little verbal or physical punishment took place in either group. Peterson, Robinson, and Littman (1983) observed that at posttraining follow-up, six parents with mental retardation equaled or exceeded the frequency of praise of two contrast parent groups. A common Þnding in applied studies that seek to improve the quality of motherÐchildinteractions is that praise is initially deÞcient compared to contrast group performance, but after it is taught as a component of a larger package or training procedure, it is generally maintained at or above levels of contrast mothers (Feldman et al., 1986, 1989, 1993).
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The parenting style of mothers with mental retardation probably varies as much as the parenting style of other mothers. Although there is not enough information in the research literature to draw Þrm conclusions about the general parenting style of a mother with mental retardation, it is likely that her intellectual impairment presents a disadvantage in motherÐchild interactions. The research is consistent in Þnding less interaction between the mother and child, but results are equivocal with regard to protectiveness and discipline.
C.
Issues in Determining Parental Competence
1. DEFINING PARENTAL COMPETENCE Despite many years of research investigating parentÐchild relationships (e.g., Ainsworth & Bell, 1970; Bowlby, 1969; Lewis & Rosenblum, 1974), we are still in the position of not having a set of universally accepted criteria for what constitutes competence in parenting, although a recent review of the child development literature attempts to deÞne some principles of optimal parenting (Coates, Dunckel, & Vietze, 2000). It is possible to identify failures in parenting but this is determined only by examining the health and well-being of the children. We accept universally the notion that children who have been injured at the hands of their parents or whose parents have not protected them from harm are the victims of parental incompetence. However, as we move away from this extreme scenario, we may have some difÞculty deÞning parental behaviors which are unacceptable but which do not cause injury. For example, the use of corporal punishment is still accepted in some quarters, whether it is administered by parents and other family members or even, in some cases, by teachers. There are instruments that purport to predict which parents will abuse or neglect their children (Altemeier, OÕConnor, Vietze, Sandler, & Sherrod, 1982; Helfer, 1973), but none of these have been reported in the research on persons with mental retardation, and, of course, the presence or absence of abuse does not constitute a sufÞcient deÞnition of parent competence. As pointed out by Tymchuk (1992), parental competence deÞned as the nonoccurrence of abuse or neglect reßects our preoccupation with Òinadequacy of parentingÓ rather than Òadequacy of parentingÓand prolongs a focus on the negative aspects of being a parent with mental retardation. Although the notion of good parenting continues to be a vague concept (Brantlinger, 1988), and there is no legal consensus on the meaning of the term (Hayman, 1990), we do have some general notions about the extremes of good and bad parenting (e.g., Coates, Dunckel, & Vietze, 2000). It is clear that parents must provide for their childrenÕs physical needs, such as food, clothing, protection, shelter, and health. They must also provide for the less tangible psychological needs, including warmth, nurturance, stimulation, guidance, and education.
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Thematically, Wald (1975) noted four dimensions of child care in discussing standards of acceptable parenting, including physical needs, health and safety, emotional, and intellectual. But the above factors are very general, and when the speciÞcs of how many of them should be required, we have difÞculty in providing sufÞcient details. We have also failed to establish a universally accepted way to teach parents the skills they will need to raise their children (Tymchuk & Feldman, 1991). As indicated in an earlier section, we expect parents without cognitive impairment to learn these things by observation during the course of their own development and through reciprocal interaction with their own children. Perhaps the most dramatic testimony to the parenting adequacy of parents with intellectual impairment was provided in the classic study by Skeels and Dye (1939) described in the introduction. The orphanage children who were not assigned to the care of the women living in the institution, but who remained in the unstimulating orphanage, fared dismally by comparison to the children interacting with young women with mental retardation. Although the children raised by the institutionalized women were eventually adopted, this study suggests that surrogate mothers who have low IQs may have sufÞcient competence to provide adequate parenting to children who otherwise would have developed cognitive impairment. Thus, the issue of whether having mental retardation necessarily interferes with parenting effectiveness seems, at the outset, to be moot. 2. FACTORS RELATED TO PARENTING COMPETENCE Various studies have reviewed factors related to parenting among mothers with mental retardation. In Espe-Sherwindt and CrableÕs (1993) review of research, the factors identiÞed as contributing to more successful parenting were IQ above 50, marriage, fewer children, greater Þnancial resources, the presence of both informal and formal support systems, and a willingness to accept support. Higher levels of praising children and good problem-solving skills were also reported to be beneÞcial. Likewise, Tymchuk (1992) listed factors associated with parenting adequacy, including good physical and emotional health, living with oneÕs parents, a good parent role model, a supportive partner, and adequate environmental resources and supports. Conversely, in Tymchuk and FeldmanÕs (1991) review, the factors associated with less successful parenting were listed as maternal IQ below 60, mental retardation in both parents, failure to maintain child custody, little home stimulation, and low frequency of motherÐchildinteractions. Psychological factors they mentioned as negatively affecting parental competency of mothers with mental retardation were stress, depression, and personality disorders. Of course, such mental health factors would affect any personÕs ability to parent, but they are more prevalent in parents with mental retardation (Mickelson, 1947; Seagull & Scheurer, 1986). Tymchuk (1992) listed additional factors predictive of inadequate parenting, including previous institutionalization or special education; abuse as a child; negative attitude toward parenting; poverty; and a motherÐchildinteractional
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style that is punitive, authoritarian, or nonempathetic, although many of these factors have not been empirically validated. The above listing is not exhaustive, but it is representative of Þndings that consistently appear in the research on factors associated with parental competence. The most fundamental problems for parents with cognitive limitations that interfere with competence in parenting would seem to be the nature and impact of the cognitive limitations themselves. Budd and GreenspanÕs (1984) Þnding that parents with mental retardation showed poor judgment when faced with novel child-rearing situations is particularly important because child rearing consists of a continuous series of novel situations. In addition, these children may be prone to behavior problems (Feldman & Walton-Allen, 1997), and such behaviors can be especially hard to predict. Budd and Greenspan (1984) also reported that parentsÕ skills acquired under stable intervention conditions often did not generalize to more varied situations. However, Rosenberg and McTate (1982) found that parents with mental retardation had a tendency to overgeneralize instructions, and Whitman et al. (1989) reported the results of a parent program in which both over- and undergeneralization were recurrent problems. On a more positive note, Feldman et al. (1986, 1989) found that increases in motherÐchildinteraction did generalize to new situations, although two of the parents in Feldman et al. (1989) did not generalize until generalization promotion strategies were speciÞcally incorporated into the training. The failure to adjust to novel patterns of child behavior and to new situations are related to difÞculties in recognizing novel situations as well as to problems in ßexibility and judgment. Moreover, the ability to generalize to novel situations is among the most difÞcult to teach and may require extensive support and training. A complicating factor, pointed out by many investigators from their own observations or from those of parents and providers is that mentally retarded parents have limited understanding about child development (Llewellyn, McConnell, & Bye, 1998; McConnell, Llewellyn, & Bye, 1997; Budd & Greenspan, 1984; Tymchuk, 1992). All of these problems are directly related to the cognitive limitations shared by persons with mental retardation. A number of more recent studies examined the role of social support in parenting competence. Llewellyn (1995), McConnell et al. (1997), and Feldman and Walton-Allen (1997) all emphasized that the amount of social support is an important factor in parenting competence. Much earlier, Rosenberg and McTate (1982) had found that parents with mental retardation who were referred for problems in child caregiving were often isolated from their extended families and had limited social supports in general. However, they also pointed out that this situation is not dissimilar from parents without mental retardation who are referred to childprotection agencies. They noted other similarities between these two groups of parents including poverty, unemployment, lack of vocational skills, and poor parenting models, all of which would seem to increase social isolation. Similarly,
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Mattison (1975) and Tymchuk (1992) reported minimal social-support networks among parents with mental retardation, and Zetlin, Weisner, and Gallimore (1985) found that parents with mental retardation who could rely on help from extended family members tended to have children who were more competent. Many studies of parents with mental retardation Þnd that the families tend to have lifestyle characteristics in common that impinge on their ability to parent. These include living in substandard housing; difÞculty in money management; lack of employment; lack of ability to furnish the home; problems with laundry; cooking, and hygiene in the home; difÞculty feeding and clothing the children; poor time management; inadequate healthcare of self and children; inadequate parent education; problems obeying the law; and lack of skill in disciplining the children (Borgman, 1969; Brandon, 1957; Espe-Scherwindt & Crable, 1993; Heber et al., 1972; Kaminer et al., 1981; Mattison, 1975; Rosenberg & McTate, 1982). These are all characteristics shared by families living in poverty. It is not difÞcult to see that parents with mental retardation, unless they enjoy economic support from their extended families, have problems meeting the economic demands presented by modern life. Most of these problems are exacerbated by the failure of many parents with cognitive disabilities to apply for services or other supportive assistance because they do not wish to be identiÞed by the social service system. To many parents, such independence is synonymous with keeping their family intact. It is clear that a variety of factors inßuence the level of competence in parenting. Limitations in the intelligence of parents with mental retardation underlie deÞciencies in judgment and problems in generalizing learned skills to new situations, important ingredients in parenting competence. Furthermore, these cognitive limitations become a barrier to getting better paying jobs, effectively relegating the family to a lower standard of living. The social stigma and social incompetence that often accompany intellectual limitations also can hamper parenting competence, particularly if family members and others ostracize the parent and contribute to their social isolation. 3. ASSESSING PARENTAL COMPETENCE Inherent in the issue of parenting competence is the question of how it is assessed, but this is a complicated area that has not been well explored. Parents with mental retardation often invest great effort in attempting to appear competent for various social reasons, including the fear that negative impressions will lead to a host of undesirable consequences, chießy that of losing custody of a child (Greenspan, Bradley, & Loughlin, 1998). A social worker or psychologist is often viewed as a fearsome enforcement Þgure (Hayman, 1990), increasing the parentÕs tendency to acquiesce and say things that she or he believes will please the examiner. Evaluators are likely to encounter a host of ethical issues in conducting assessment of parenting adequacy, including their own qualiÞcations and training;
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the potential for their values to compete with the parentÕs; the validity of the instruments on which decisions will be based; the parentÕs tendencies toward acquiescence and gullibility; balancing parent and child rights; and issues of privacy, consent, and conÞdentiality (Feldman, 1986; Greenspan, Bradley, & Loughlin, 1998; Tymchuk & Feldman, 1991). Psychologists are often asked to determine parental competence based on an interview and an IQ test (Tymchuk & Feldman, 1991), but there are no standardized assessments that sufÞciently assess a parentÕs ability to parent (Espe-Scherwindt, & Crable, 1993; Hayman, 1990; Mikelson, 1947, 1949; Llewellyn, 1990; Mira & Roddy, 1980). A better way to determine parental competency is to ascertain performance levels of basic parenting skills identiÞed on criterion-referenced measures, which can be used as baseline information against which to measure progress. For example, Tymchuk et al. (1990) devised a criterion-referenced assessment to evaluate decision making of 28 mothers with mental retardation and 28 mothers without mental retardation of the same socioeconomic status. The test consists of examples of situations in which there is a high risk of the child getting hurt as well as other situations that are similar but present no risk of harm. These vignettes were presented verbally and pictorially to the mothers with mental retardation and by questionnaire to the other mothers, and participants described what they would do in these situations and why. The mothers with mental retardation scored lower on low-information vignettes than on high-information vignettes and lower on recall and elicited measures. No group differences were observed in the appropriateness of decisions, and the authors concluded that the mothers with mental retardation are capable of making appropriate decisions when asked about hypothetical situations, although they called for research on decision making in real life. Kaminer et al. (1981) developed a checklist to screen mothers of children in a developmental pediatrics clinic, later termed the Einstein Parent Screen Instrument (Kaminer & Cohen, 1983). In attempting to identify mothers with mental retardation, the researchers fortuitously devised what might be the Þrst competency assessment for mothers with mental retardation, which was used in much of the subsequent research on parents with mental retardation. There were no psychometric properties indicated, and to our knowledge, there have been no reports on the instrumentÕs reliability or validity. In the Kaminer et al. (1981) study, if two staff members concurred on the presence of at least Þve of the following nine checklist items (abbreviated here), the parent was identiÞed as intellectually limited: (a) inability to travel alone, (b) reading and writing problems observed in completing the application, (c) inconsistency in keeping appointments, (d) being vague about basic facts, (e) problems managing money, (f) overwhelmed by routine demands, (g) problems in child management, (h) use of Òcover-up techniquesÓto conceal deÞcits, and (i) requiring a benefactor. The authors cautioned that identiÞcation of intellectual limitation by this checklist does not constitute a diagnosis of mental retardation.
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Another instrument that has been used to assess competence of parents with mental retardation is the Home Observation for Measurement of the Environment (HOME) developed by Caldwell and Bradley (1979). This normative-referenced measure has six subscales assessing orthogonal factors of the home environment, which tap various forms of behaviorÐenvironment relationships, including quality of the home environment and motherÐchildinteractions. There are 45 yesÐnoitems, scored mostly by observation. The instrument correlates highly with the development of children whose parents have cognitive limitations (Feldman et al., 1985; Tymchuk & Feldman, 1991), although apparently more highly for school-aged children of parents without mental retardation (Feldman & Walton-Allen, 1997), and it has been used in several comparative investigations (Feldman et al., 1985; Feldman & Walton-Allen, 1997; Keltner, 1994). In the Feldman et al. (1985) study cited earlier, 12 mothers with a mean IQ of 69 and their 12 2-year-old children (7 girls and 5 boys) were evaluated with two instruments. The Bayley Scales of Infant Development (Bayley, 1969) showed that these children were at risk of cognitive delays, but the HOME scores for 11 of the 12 were in the normal range, suggesting that the mothers were providing a sufÞciently stimulating home environment. The HOME was used again by Feldman in a study to examine the effects of poverty and mental retardation on children of mothers with mental retardation (Feldman & Walton-Allen, 1997). HOME scores of families whose mothers had mild mental retardation (27 school-age children) and those of similarly impoverished families whose mothers did not have mental retardation (25 school-age children) were compared. The children of the mothers with mental retardation had lower IQs, lower academic achievement, and more behavior problems (there were far more boys in the families whose mothers had mental retardation, and only the boys had lower academic achievement and more behavior problems, when analyzed separately). HOME scores were lower in the group with maternal mental retardation, although they were within 1 SD of a normative sample, and they were lower in the families with boys. The authors concluded that Òbeingraised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty aloneÓ(p. 352). Although researchers tend not to recommend the use of existing normativereferenced instruments to determine competency of parents with mental retardation, the HOME appears to offer value as a comparative and a criterion-referenced measure, although its norms are based on more typical families. In a study by Keltner (1994) it was used to make recommendations about speciÞc motherÐchildinteraction intervention to enhance child rearing. This investigation compared HOME scores of 38 mothers with IQs below 75 (mean = 58) to 27 mothers with IQs above 85 (mean = 92), all of whom received public assistance. The mothers with lower IQ had lower HOME scores, and the differences were due to two child-interaction factors: Responsivity and Involvement. Keltner concluded that the lower scores indicate higher developmental risk due to environmental deprivation.
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There are many other assessment instruments available, speciÞcally developed for use with mothers with intellectual limitations (Feldman, 1994; Tymchuk, 1998, 1996; Tymchuk, Hamada, Andron, & Anderson, 1990). Most are in the form of risk assessments or task-analysis checklists that are based on parent performance, although some of TymchukÕs materials are training booklets with lessons and worksheets that could be used as criterion-referenced measures. For example, Tymchuk (1998) recently synthesized much of this research into a four-component taxonomy, presumably reßecting the most basic needs of parents with mental retardation. This taxonomy consists of (a) fundamental knowledge and skills for parents, (b) health, (c) safety, and (d) parentÐchildenjoyment. The program delineates critical factors for assessment and education within each component, and it speciÞes completion criteria. One module entails teaching parents to decode messages on health and safety products such as fever thermometers, safety latches for cabinets, and electric outlet covers. The detail in TymchukÕs taxonomy is commendable, particularly in the area of health and safety, although the taxonomy does not give proportionate attention to the social-emotional aspects of parenting and child development. These latter factors are elucidated more extensively in the Parent Needs for Support Scale in development at the time of this review (Bradley, Greenspan, & Loughlin, 1998). Tymchuk and Feldman (1991) pointed out that there are a number of observation-based, task analysis checklists for childcare available to assist in developing instructional programs for parents with mental retardation. There are also early intervention instructional curricula designed for use with parents with mental retardation (e.g., Espe-Scherwindt, 1990). Results from instruments designed to assess parenting competence are more useful than IQ scores for predicting parent adequacy, particularly in light of the fact that average or higher-than-average intelligence is not indicative of good parenting. As noted by Whitman and Accardo (1990), the determination of intellectual capacity is neither necessary nor sufÞcient for evaluating parental adequacy. Nonetheless, a commonly reported Þnding is that IQ becomes associated with parenting in adequacy when it falls below 60 (Borgman, 1969; Mickelson, 1947), although this Þnding is based on determinations of in adequacy from reviewing parent records, typically reports of neglect or child removal, instead of naturalistic observations of parents interacting with their children. As Budd and Greenspan (1985) discovered, it was the parentsÕbehavior toward their children, not their intelligence, that determined therapistsÕimpressions of the parentÕs care-giving abilities. Despite these concerns, IQ scores indicative of mental retardation have been used as a basis for denying parents the chance to rear their children (Hayman, 1990; Tymchuk & Feldman, 1991; Wald, 1975). Due to the lack of well-developed assessment tools, the judgment of parent competence is unavoidably subjective, except for extreme cases, but it should reßect consideration of the complex merging of factors and contingencies operating in the life of the parent. However, it is reasonable to assume that in the eyes of the
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average citizen, as well as of many health and social-service professionals who are unfamiliar with this body of research, the existence of mental retardation automatically disqualiÞes a person as a potentially suitable parent. The decision to separate a child from his or her mother based on IQ score alone might appear repugnant to professionals in the Þeld of developmental disabilities, but it surely must appear as a blessing to those who see an opportunity to rescue a child in grave danger. After reviewing the literature, we conclude that the question about a parentÕs competence is ultimately an individual consideration, deduced primarily from (a) the parentÕs motivation and capacity to learn and carry out parenting skills; (b) their history of relevant life experiences; (c) their current life circumstances; (d) interaction with their children, ideally observed in the home environment; and (e) an analysis of personal capabilities and aspirations as well as parenting weaknesses. D.
Effective Services and Perceived Barriers
Nearly all the studies we reviewed had implications for assisting parents. Applied researchers agree that methods for teaching parenting skills should entail strategies that promote task maintenance and generalizability (Tymchuk & Feldman, 1991). Accordingly, parent training has been implemented in multiple settings, including in-home instruction (e.g., Sarber, Halasz, Messmer, Bickett, & Lutzker, 1983; Feldman et al., 1992), day treatment programs and clinics (e.g., Peterson et al., 1983; Tymchuk et al., 1990), activity groups (e.g., Rosenberg & McTate, 1982), and classrooms (e.g., Tymchuk, 1991). A number of teaching strategies have been effectively employed, including task analysis, role-playing, repetition, and modeling (Budd & Greenspan, 1984; Feldman et al., 1989, 1993, 1992; Schilling et al., 1982; Tymchuk & Andron, 1990; Tymchuk & Feldman, 1991). An important Þnding in the applied behavior analytic literature on parents with mental retardation is that performance-based instructional methods employing strategies such as modeling, rehearsal, and feedback tend to be more effective than verbal instruction alone (Feldman et al., 1992). Budd and Greenspan (1984) reported on a successful program that audiotaped written and oral material to enhance performance for parents with mental retardation. More recently, Feldman, Ducharm, and Case (1999) demonstrated that parents can learn child care skills with self-instructional pictorial manuals, the efÞcacy of which can sometimes be enhanced when instructional audio tapes are added (Feldman & Case, 1997, 1999). Most of the literature that recommends effective services or supports for parents is based on questionnaires or interviews, which tend to generate more global recommendations. In the Johnson and Clark (1984) study, information was gleaned from the notes of three ongoing parent group meeting in one agency, and in another, it was also gathered from transcriptions of group interviews of aides who conducted parent home visits. This descriptively rich but methodologically vague
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study (neither N nor diagnosis information were given) yielded recommendations for general forms of assistance, including special education, advocacy, and group supportive services. The authors acknowledged the inadequacy of a single method of addressing the compound needs of parents with developmental disabilities and posited that effective solutions should take into account the interaction of individual and situational factors. Budd and Greenspan (1985) surveyed 20 behaviorally oriented therapists, representing 52 families in which the mother was considered to have mental retardation and receiving behavioral or educational intervention. TherapistsÕperceptions of positive outcomes (composite scores for success in referral problems, generalized beneÞt, absence of negative treatment effects, and family functioning) were associated with higher levels of mothersÕ(a) involvement in intervention, (b) competence in child activities, and (c) competence in adult activities and fathersÕ (d) competence in child activities and (e) competence in adult activities. Essentially, the program was likely to succeed if the parents were relatively competent and the mother persisted in the program. McConnell et al. (1997) employed focus groups in Australia to ascertain information about effective services. Forty service providers experienced in working with parents with intellectual disabilities agreed that desirable services must be tailored to the parentÕs individual needs and they should provide long-term, ongoing support. Home-based services were regarded as essential. In addition, effective services were described as proactive, empowering, and delivered at a level the parent understands. A number of constraints were identiÞed as interfering with effective provision of services and supports to parents, including limited time, staff, and funding; lack of educational resources; and parentsÕreluctance to use services. Limited knowledge and skills of service providers were also identiÞed as barriers to effective services, as well as competing expectations of Ò.. . the parents wishes, the expectations of referring agencies, and the expectations of the public at largeÓ (p. 13). Llewellyn et al. (1998) also determined obstacles to effective services. These investigators examined perceptions of service needs by 47 parents with mental retardation (40 mothers and 7 fathers), 38 parent-nominated service workers, and 32 parent-selected signiÞcant others (usually a family member or friend), using interviews and a modiÞed version of a questionnaire developed by Walton-Allen and Feldman (1991). The major concerns in providing adequate services were lack of time because of high caseload, inability to provide the day-to-day help parents needed, and no available community services willing and able to provide practical, in-home assistance. In their literature review attempting to debunk myths about parents with mental retardation, Espe-Scherwindt and Crable (1993) discussed qualities of earlyintervention programs responsive to parents with mental retardation. An ideal program was described as one in which the therapist has built a relationship with
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the parent, who is often intimidated or resentful of professional intervention. The authors maintain that outcomes should be clearly deÞned and understood by the parent and related goals and activities should be based on strengths and needs identiÞed by families. In addition, the parent also should have opportunities to make decisions in all phases of service provision, which should incorporate meaningful social interactions and build in informal supports from family members. A cautionary note on the use of informal supports for assistance was offered by Rosenberg and McTate (1982), who found that the parents tended to overtax the supportive people available to them, which served to reduce their social supports. (It is possible the presence of a benefactor, described earlier in this chapter, might mitigate against the possibility of parents inundating friends and family members with their problems). Rosenberg and McTate (1982) described the components of a pioneering parenting program with eight parents, some of which can be observed in parent programs operating today. They found that parents beneÞted from group experiences where mothers and children interacted in activities such as swimming and discussion groups, which permitted opportunities to learn about child rearing, share concerns, and make friends. In a motherÐchildplay group, mothers learned more appropriate ways of interacting with their children when instructors modeled appropriate playing and discipline. Using Þeld notes from a participant observation, Tucker and Johnson (1989) identiÞed two forms of social support for parents with mental retardation received by six Caucasian and six African American families with a total of 25 children. Most of the families received primary social support from grandmothers. One form of support, called competence-promoting support, was provided by supporters who were able to provide sufÞcient time to the parent and able to call on additional resources when needed. These supporters tended to be optimistic about parentsÕ eventual self-reliance, and they taught functional skills directly to the parent, rather than the child, including use of transportation, money management, and babysitting. On the other hand, competence-inhibiting support was provided by assistants who were perceived by parents as obstacles and characterized by the investigators as being overburdened with their own problems and responsibilities. The inhibitors viewed parents as being incapable of managing their own affairs, and they were more responsive to the child than the parent. In summary, it is clear that parents with mental retardation have multiple needs that can only be addressed with a variety of approaches and resources. Applied behavior analytic demonstrations indicate that parents can learn speciÞc childcare skills with multiple-component operant procedures, the effects of which are more likely to be maintained if generalization strategies are employed. Researchers using data collection methods, such as interviews, Þeld notes, or focus-group consensus, tend to offer recommendations about services and supports that will make for effective programs. Most acknowledge that services should be home-based, longterm, and involve the parent in planning and decision making. Engendering parent
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cooperation appears to be critical for program success, but this can depend on many factors, including the knowledge and attitude of the service provider and the amount of time he or she can spend with the family. Perhaps most important for the parent is the generic but personal assistance provided by friends and relatives, particularly when it enhances the effectiveness of more formal intervention.
V.
RESEARCH LIMITATIONS AND SUGGESTIONS FOR FUTURE RESEARCH
There are a number of problems in the body of research on parents with mental retardation that have hindered interpretation and generalization, precluding a more cohesive review of the literature. These problems arise from methodological limitations and conceptual differences among researchers. Much of the research is not generalizable because it is outdated, dating back to a time when people with mental retardation were systematically excluded from society (Tymchuk, 1992). Research on parents with mental retardation is still a small body of research and the sample sizes tend to be small, a combination which (a) presents a danger of drawing stronger conclusions than the data justify and (b) precludes meta-analyses in areas such as parent competence or program efÞcacy. (As a result of trying to present a comprehensive review with this small body of research, many of the same papers were used more than once if their content was relevant to more than one topical area.) The substantial variation in assumptions and research methods of investigators reßects differences in conceptual formulation of the problem. While these different approaches have yielded a wealth of generally convergent information on the topic of parents with mental retardation, they sometimes seem to work at cross purposes. For example, if we try to get a better picture of the parent with mental retardation through more up-to-date inferential statistics, will we undermine the participant observerÕs call to better understand the parentÕs unique qualities and contextual factors, both of which tend to be obscured in aggregate data? Conversely, can qualitative research inform planners and potential funders of the types and quantities of needed services? Likewise, will an emphasis on the motherÕs capacities and a call for informal support curtail the provision of more technical professional services? Of course, the questions raised through different research methods and their inevitably competing implications about a given problem are not restricted to the topic of parents with mental retardation. However, as recently pointed out by Tymchuk, Llewellyn, and Feldman (1998), for this Òemerging populationÓ (p. 3), there is pressing need to coordinate research efforts and strategies. A continuing hindrance to this body of research is the variation in participant inclusion criteria. One problem is the changing deÞnition of mental retardation, which periodically undergoes signiÞcant modiÞcation (e.g., Grossman, 1973;
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Luckasson et al., 1992), but nonetheless remains imprecise (Budd & Greenspan, 1984). Many studies are confounded by selection bias because samples are usually derived from institutional or agency-known populations, effectively excluding more competent parents (Budd & Greenspan, 1984; Feldman 1986). Some of the studies we reviewed used various forms of the social-systems approach to identify participants (Mercer, 1973), which does not require technical conÞrmation of the diagnosis of mental retardation. According to Budd and Greenspan (1984), when using this deÞnition Ò . . .the main diagnostic criterion is whether signiÞcant persons within a womanÕs social world consider her to be mentally retardedÓ(p. 481). Participants in many of the studies that used this criterion were available because they were known to agencies. Although this approach can be faulted on the grounds that it lacks diagnostic precision and uses circular reasoning (a person is considered to have mental retardation because of having received services designed to assist people who are considered to have mental retardation), for many researchers and practitioners, this is the only practical strategy of identifying a population for whom assistance is needed. Pragmatically speaking, there is a point at which the cost of diagnostic rigor begins to detract from providing direct assistance. Another consideration is the believability of verbal data. More recent research has begun to examine the viewpoints of parents themselves in identifying needs (e.g., Llewellyn, 1995; Llewellyn, McConnel, & Bye, 1998), although investigators are cautioned to consider the factors inßuencing the veracity of what the parents tell them, whether as responses to questionnaire items or to interview probes. In some circumstances, particularly when the stakes are high, parents might feel pressured to give a positive impression of their parenting skills. Most of the data about parents comes from the impressions of others, whose conclusions are not necessarily based on observations of families in natural settings. Clearly, more research and services should occur in parentsÕhomes and include other family members under natural conditions. The employment of additional ecological (Bronfenbrenner, 1979) and ethnographic (Patton, 1987) methodologies should produce more candid portrayals. There is a dearth of data on social and contextual factors affecting the lives of mothers with mental retardation. For example, many mothers with mental retardation are part of two-parent or extended families systems, but there is little information about fathers with mental retardation and even less on siblings and extended family relationships. Social relations are a particularly important area for research because many of these mothers traditionally have been excluded from social activities and some report having no friends or extended family involvement (Llewellyn, 1995). It would be interesting to know if the resolution of concerns typically viewed as outside of the realm of parenting would have positive effects on parenting. For example, if a socially isolated mother became included in a network of informal relationships, would she be more attentive to the needs of her
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10-year-old daughter? If a source of Þnancial stress were removed, would she be less upset when her daughter breaks a toy or tears her dress? It is noteworthy that there is little research on children older than 5, although Feldman and Walton-Allen (1997) included children ages 6Ð12, and Booth and Booth (1997) interviewed adolescent and adult offspring. This imbalance seems odd because many researchers have called attention to the fact that parents with mental retardation often lack the ability to adapt their parenting style to novel situations. As children grow older, the challenges of child rearing soar, and it is with school-age children, especially preadolescents and adolescents, that greater ßexibility and creativity are essential. Similarly, given the fact that over one-half of the offspring of parents with mental retardation will surpass their parents in intellectual capability, it is surprising that few of the studies reviewed expressed concern about the problems this situation presents. We get only a brief view of what these situations are like from qualitative and anecdotal accounts (Denfeld, 1998; Ronai, 1997). It is especially important, therefore, that future research address the circumstances of children who grow up in an environment in which one or both parents have mental retardation. Longitudinal studies, in particular, would give a clearer picture of these challenges, and qualitative accounts of experiences across the life span show promise as well. For example, a recent report examined retrospective childhood accounts of 30 adult offspring of parents with mental retardation (Booth & Booth, 2000). The authors concluded that the impact of having a parent with mental retardation is not as severe as many would have us think, and they emphasized that resiliency seems to serve as a compensatory factor that counterbalances the risks of harmful parenting. We were surprised to Þnd that there are no reliable estimates on the numbers of parents with mental retardation, which points to epidemiology as an area of critical research need, particularly as it relates to policy and funding at local levels and beyond. It would seem that agency service planning and coordination would be facilitated with better knowledge about who needs services, what types of services are needed, and what services are available in a given geographic region. Tymchuk (1999) recently reasoned that governmental agencies and professional organizations have ignored the need for a coordinated support system, and he deduced from focus groups in California that Ò.. . suitable supports for these families continue to be limited, fragmented, and uncertainÓ(p. 59).
VI.
CONCLUSIONS
The historical treatment of parents with mental retardation has been poor, but dramatic improvements have occurred in the past several decades. Even so, the proÞle of the parent with mental retardation is not an uplifting picture, mainly because of stress, poverty, and social isolation. Although many parents with mental
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retardation are able to provide adequate parenting for their children, our society remains ambivalent about parents with mental retardation, despite (a) the recent trends of social inclusion of persons with disabilities and (b) research demonstrating that mothers with mental retardation can learn effective parenting skills. Perhaps our society collectively views these parents similar to the way that Ronai (1997) viewed her own mother with mental retardation: vulnerable yet culpable. Much of the research in this area suffers from methodological problems due to small sample sizes, lack of sophistication in design and research methodology, and inability to follow the groups longitudinally. Nevertheless, much of the research forms a consistent proÞle of parents with mental retardation, their offspring, and the social milieu in which they live. It also calls attention to the delicate balance between defending parental rights and ensuring the welfare of the children. The research makes a strong case that without extensive external supports, parents with developmental disabilities are not very good caregivers for their children. We still have a great deal more to learn about parents with mental retardation. The literature reveals a number of recurring Þndings but many unanswered questions. Researchers have acknowledged the extenuating life factors that can compound a parentÕs intellectual disability, such as inadequate employment, poor housing, stigma, victimization, and lack of social support, and some have studied these factors directly. There is also agreement that these parents comprise a heterogeneous group with varying levels of needs and abilities. At the same time, there is a trend toward individualized assessment and planning, at least conceptually, and an emphasis on focusing more on parentsÕinterests and capabilities and less on their shortcomings. Historically, social service professionals have prejudged the parent with mental retardation by their presumption of incompetence, and the parent has viewed professionals more as ÒpolicemenÓthan as helpers. For many parents with mental retardation and their families, the professional service provider is a valued source of emotional and practical support; for others, the service worker is intrusive and unwelcome, representing a confusing web of uncoordinated and inconsistent services. Providers are advised to take such factors into consideration when parents appear unappreciative or uncooperative. On the other hand, from the standpoint of the service provider or informal assistant, the parentsÕcircumstances can be so varied and changing, and their problems so numerous and interconnected, that one can easily become overwhelmed. Although a large portion of the research attempts to describe the parent with mental retardation, some investigators have suggested that clarifying the characteristics and needs of such parents, as a group, may not be helpful or even possible, emphasizing instead that each parent and his or her particular situation should be considered on an individual basis. The latter sentiment reßects todayÕs emphasis on individualized planning and service provision for people with disabilities, but
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effective long-range planning and service coordination require an understanding of the common characteristics and needs of parents with mental retardation. In our review of the literature, we have attempted to summarize these commonalities without betraying parent uniqueness. Until recently, attempts to identify the needs and competencies of parents with mental retardation have been imprecise. In the past, applied professionals had to rely on generic needs assessments and curriculum materials designed for parents with developmental disabilities in general, including disabilities that might be primarily physical or neurological (e.g., McKenna, 1982). However, a number of investigators, most notably Tymchuk, Greenspan, and Feldman, have developed assessment tools and teaching procedures speciÞc to mothers with mental retardation and their families using principally quantitative research methods. Other investigators, particularly Llewellyn, Espe-Scherwindt, and the Booths, have examined the familyÕs lifestyles and behavior patterns using more qualitative research approaches. All of these researchers and their colleagues are continuing various lines of research to better understand how parents can become better parents by examining teaching procedures, environmental supports, or services models that might foster those capabilities. In their efforts to assess parent adequacy and facilitate positive parent and child outcomes, researchers in this area are discovering the conditions under which parents with mental retardation can continue to have their children live with them. As a whole, the qualitative literature advocates for a more positive portrayal of parents with mental retardation, and we have answered that plea as best we could. However, we caution against making exaggerated claims, a predisposing tendency because of (a) the blatant mistreatments of the past and (b) the paradigm shift that has been occurring in the Þeld of developmental disabilities (Bradley, 1994) such that we are now seeing these parents more as ÒpeopleÓ(Espe-Scherwindt & Crable, 1993) with needs and aspirations, including parenthood, that are fundamentally no different from those of the rest of us. We offer this caveat because unrealistically positive assertions might unintentionally work against parents and their families. One potential backÞre from exaggerating parent abilities is deterred cooperation from professionals in agencies whose treatment philosophy and aspirations may not match the advocacy-oriented positivism undergirding the principles of the new paradigm in the Þeld of developmental disabilities today. Another potential hazard lies in understating the cognitive deÞcits and excessive stress experienced by a mother with mental retardation, both of which she may try to mask, but both of which should be taken into consideration in planning for services. If we discount their signiÞcance, the ensuing intervention failures are likely to be misattributed to the parentÕs Òlaziness,ÓÒirresponsibility,Óor Òmanipulation.ÓA realistic appraisal based on a fair assessment of the motherÕs capabilities and available support will be most helpful to the parent and family in the long run.
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Tymchuk, A. J. (1998). The importance of matching educational interventions to parent needs in child maltreatment. In J. Lutzker (Ed.), Handbook of child abuse research and treatment (pp. 421Ð448). New York: Plenum. Tymchuk, A. J., & Andron, L. (1990). Mothers with mental retardation who do or do not abuse or neglect their children. Child Abuse & Neglect, 14, 313Ð323. Tymchuk, A. J., & Andron, L. (1992). Project parenting: Child interactional training with mothers who are mentally handicapped. Mental Handicap Research, 5, 4Ð32. Tymchuk, A. J., Andron, L., & Unger, O. (1987). Parents with mental handicaps and adequate child careÑA review. Mental Handicap, 15, 49Ð53. Tymchuk, A. J., & Feldman, M. A. (1991). Parents with mental retardation and their children: Review of research relevant to professional practice. Canadian Psychology, 32(3), 486Ð496. Tymchuk, A. J., Hamada, D., Andron, L., & Anderson, S. (1989). Emergency training for mothers who are mentally retarded. Mental Retardation and Learning Disability Bulletin, 17(2), 34Ð45. Tymchuk, A. J., Hamada, D., Andron, L., & Anderson, S. (1990). Home safety training with mothers who are mentally retarded. Education and Training in Mental Retardation, 25, 142Ð149. Tymchuk, A. J., Llewellyn, G. M., & Feldman, M. A. (1998). Parenting for persons with intellectual disabilities: A timely perspective. Journal of Intellectual and Developmental Disability, 24, 3Ð6. Tymchuk, A. J., Yokota, A., & Rahbar, B. (1990). Decision-making abilities of mothers with mental retardation. Research Devel Disabilities, 11, 97Ð109. Unger, O., & Howes, C. (1988). MotherÐchildinteractions and symbolic play between toddlers and their adolescent or mentally retarded mothers. The Occupational Therapy Journal of Research, 8, 237Ð249. Valman, H. B. (1981). The handicapped child. British Medical Journal, 283, 1166Ð1169. Wald, M. (1975). State intervention on behalf of ÒneglectedÓchildren: A search for realistic standards. Stanford Law Review, 27, 985Ð1040. Walton-Allen, N., & Feldman, M. A. (1991). Perceptions of service needs by parents who are mentally retarded and their workers. Comprehensive Mental Health Care, 1, 57Ð67. Whitman, B. Y., Graves, B., & Accardo, P. (1987). Mentally retarded parents in the community: IdentiÞcation method and needs assessment survey. American Journal of Mental DeÞciency, 91, 636Ð638. Whitman, B. Y., Graves, B., & Accardo, P. (1989). Training in parenting skills for adults with mental retardation. Social Work, 34(5), 431Ð434. Whitman, B., & Accardo, P. (1990). When a parent is mentally retarded. Baltimore, MD: Paul Brookes. Winik, L. (1982). Mildly retarded adults as parents: A description of the parenting process of two mildly retarded couples (working paper no. 22). Los Angeles: Mental Retardation Research Center. Wolfensberger, W. (1975). The origin and nature of our institutional models. Syracuse, New York: Human Policy Press. Zetlin, A., Weisner, T., & Gallimore, R. (1985). Diversity, shared functioning and the role of benefactors: A study of parenting by retarded persons. In S. K. Thurman (Ed.), Children of handicapped parents: Research and clinical perspectives (pp. 69Ð94).New York: Academic Press.
Psychiatric Disorders in Adults with Mental Retardation STEVE MOSS INSTITUTE OF PSYCHIATRY KINGÕ S COLLEGE LONDON LONDON, UNITED KINGDOM
I.
INTRODUCTION
It has been known for many years that people with mental retardation (MR) also suffer from mental illness. Tredgold (1908), for instance, estimated that the overall prevalence was 26 times higher than that for the general population. (See Matson & Sevin, 1994, and Reid, 1989 for discussions of the historical relationship between psychiatry and MR.) I wrote elsewhere (Moss, 1999a) that the mental health of people with MR is an issue whose time has come. Looking back over the past 25 years, we can see that huge achievements have been made in peopleÕs life circumstances, such as in housing, education, work and leisure opportunities, social engagement, interaction with the community at large, and other social domains. The past 2 decades, however, have seen a major shift to subjective quality of lifeÑ focusing on what the individuals themselves say they wish for and aspire to. It is in this latter context that mental health issues have come to greater prominence. There is now a growing international recognition of the need to respond more adequately to mental health problems in this population (Day, 1994; Bouras, 1999; Holt et al., 2000; Jacobson, 1999). Indeed, in response to this recognition, the literature has now grown so extensive that it is necessary place some restrictions on the scope of this chapter. Various topics that can be regarded as specialist topics in their own right are not covered in detail, such as the extensive literature on DownÕs syndrome and its relation to AlzheimerÕs disease. Likewise, an in-depth review of drug-trial literature is not be attempted. These are topics which have and undoubtedly will continue to be reviewed as a sole focus.
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Steve Moss II.
DEFINING MENTAL HEALTH PROBLEMS
A fundamental issue in any discussion of the mental health of people with MR is how to deÞne mental health and mental illness. Indeed, this question arises in relation to any segment of the population, but there are a number of reasons why it is particularly important in the current context. First, behavioral and psychiatric approaches have made quite separate but undoubtably signiÞcant contributions to our understanding of abnormal behaviors shown by people with MR (Emerson, 1995). In the broadest terms, psychiatric assessment is concerned with identifying patterns of symptoms and their clinical history and matching these patterns with those of previously deÞned disorders, such as depression and schizophrenia. In a behavioral formulation, on the other hand, the primary focus is on the behaviors themselves rather than on identifying an underlying psychopathology which is thought to drive those behaviors. There is no hard and fast boundary between the two approaches. Nevertheless, the differences are signiÞcant and likely to color our view of what constitutes a Òmentalhealth problemÓ(Moss, 1999b). The differences between these approaches are particularly important in relation to challenging behaviors. The treatment and management of challenging behaviors is a fundamental concern for mental health service providers working with individuals who have MR, since it is one of the most common reasons for referral to a psychiatrist (Day, 1985; Jacobson, 1998). Recent research suggests that challenging behaviors are shown by 10Ð15% of users of educational, health, or social care services for people with MR and that ÒmoredemandingÓchallenging behaviors are shown by 5Ð10%of such users (Emerson et al., 1997). The question arises as to whether challenging behaviors should be regarded as part of a continuum of mental disorders or whether, in some cases, they are unrelated to the mental health of the individual. Certainly, there is some convergence between the syndrome constructs of assessments commonly used to assess challenging behavior and psychiatric disorders (Edelbrock & Costello, 1988), although it is not a one-to-one correspondence (Gould, Bird, & Jaramillo, 1993). Before continuing it is thus important to provide some further clariÞcation of these concepts. A.
Challenging Behavior
Emerson (1995) deÞned challenging behavior as Òculturallyabnormal behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.Ó It is important to keep in mind that, in this deÞnition, challenging behaviors are viewed as social construction deÞned by their social impact. They are behaviors which transgress social rules. Whether a particular behavior will be ÒchallengingÓwill be based on complex interactions between what
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the person does, the setting in which they do it, and how their behavior is interpreted or given meaning. As such, challenging behaviors are likely to range widely in their form (topography) and, more importantly, the psychological and/or biological processes which underlie them. The term in itself carries no implications (implicit or explicit) that challenging behaviors are more or less likely to be associated with any particular theoretical approach to analysis or intervention. B.
Psychiatric Disorders
What is properly to be regarded as a psychiatric disorder is a question to which there is no clear answer. The Oxford Text Book of Psychiatry (Gelder et al., 1994) does not speciÞcally deÞne the term, but the breadth of its compass can be implied from the range of signs and symptoms which are included: disorders of perception (primarily hallucinations), disorders of thinking (thought disorder, delusions, obsessions, and compulsions), disorders of emotion (anxiety, depression, elation, anger, and apathy), disorders of the body image, disorders of memory, disorders of consciousness (stupor and confusion), and disorders of attention and concentration. Combinations of these various symptoms constitute the majority of disorders which we normally think of as mental health problems in the general populationÑ depression, anxiety, schizophrenia, and so on. However, the classic psychiatric framework is not well suited to describing and categorizing challenging behaviors in people with MR (Emerson, Moss, & Kiernan, 1999). For instance, it may appear at Þrst sight that aggressive challenging behaviors could meet the criteria for a conduct disorder, one of the four main groupings in the DSM-IV criteria being Òaggression to people or animals.Ó However, the words used in the diagnostic criteria imply a level of malicious intent which is probably not present in most cases of challenging behavior by people with MR, e.g., bullying, initiating physical Þghts, and physically cruel. 1. POSSIBLE RELATIONS BETWEEN PSYCHIATRIC DISORDERS AND CHALLENGING BEHAVIORS Although the concepts of challenging behaviors and psychiatric disorders are quite different, this does not preclude the possibility that, within a given individual, there may be associations between them (Holland, 1991). Emerson, Moss, and Kiernan (1999) have suggested three possible mechanisms by which challenging behavior and psychiatric conditions may be linked: 1. Some forms of self-injurious behavior may constitute the atypical presentation of obsessive-compulsive disorder among people with severe MR (King, 1993). Support for this hypothesis is twofold. First, there are clear topographical similarities between obsessive-compulsive disorder and self-injurious behavior in that both categories of ÒchallengingÓbehavior are repetitive, stereotyped, ritualistic,
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apparently unrelated to the immediate demands of the personÕs situation, and extremely resistant to change (Kiernan et al., 1997). Second, there is evidence to suggest that serotoninergic agonists or reuptake inhibitors (e.g., ßuoxetine and clomipramine) can reduce obsessional compulsive disorders in people without MR (Lader & Herrington, 1996) and self-injurious behavior in people with severe MR (e.g., BodÞsh et al., 1996; Davanzo et al., 1998). 2. Challenging behavior may occur as a secondary feature of a depression. This potential link is based on the notion that many people with MR do not have sufÞcient linguistic and intellectual ability to be able to express some of the normal range of feelings associated with depression, e.g., guilt, hopelessness about the future, or the desire to end oneÕs life. The frustration arising from this inability to conceptualize and express these feelings may thus result in various problem behaviors. Reid (1982), for example, suggested a variety of clinical features which may be indicative of depression among people whose level of disability makes it difÞcult to verbalize their feelings. These features include somatic symptoms (e.g., headache and abdominal ache), hysterical Þts, agitation, and disturbances of physiological functions such as sleep, appetite, and bowel movements. More recently, Meins (1995) and Marston, Perry, and Roy (1997) showed that, in people with more severe retardation, the severity of existing challenging behaviors was higher in the presence of depression as deÞned by DSM-III-R criteria. Similarly, Reiss and Rojahn (1993) found levels of depression to be evident in four times as many aggressive as nonaggressive subjects. Jawed et al. (1993) described the case of a man with severe MR whose pica became uncontrollable during episodes of depressive illness. It is important to test this potential association because it has been suggested (Meins, 1995) that challenging behaviors should potentially be included in new diagnostic frameworks which are more applicable to persons with MR than the existing DSM-IV and ICD-10 classiÞcation systems. (See the subsequent section ÒDiagnosticCriteria.Ó) 3. Psychiatric disorders may establish a motivational basis for the expression of challenging behaviors, maintained by operant behavioral processes (Emerson, 1995). For example, depression may be associated with an unwillingness to participate in educational or social activities, thus establishing such activities as negative reinforcers (i.e., events whose termination is reinforcing). If the person has previously learned that challenging behaviors can terminate such aversive events, we would expect an episode of depression to be associated with an increase in challenging behavior. Note that, unlike in the previous section, depression is not seen as ÒcausingÓchallenging behavior (i.e., is not a sufÞcient condition for the expression of challenging behavior). Rather, the occurrence of challenging behavior is determined by the combination of the motivational inßuence of depression in establishing negative reinforcers and the preexistence in the individualÕs repertoire
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of challenging behaviors which have previously served an escape function. The importance of the distinction is that the latter model suggests two complementary approaches to intervention: (a) change the motivating condition, e.g., by treating the underlying medical condition, (Peine et al., 1995); and (b) change the ÒfunctionalityÓof the personÕs challenging behavior, e.g., by providing a more effective and more socially appropriate way of the person escaping from instructional demands (Carr et al., 1994). III. A.
PREVALENCE OF MENTAL HEALTH PROBLEMS
Broad-Spectrum Studies of Prevalence
Two of the most comprehensive studies of prevalence were conducted in Sweden. The study of Lund (1985) examined 302 adults. Moss (1995) has presented LundÕs results in comparison with a large-scale study of the general population in Canada (Bland, Newman, & Orn, 1988), and this tabular comparison is reproduced here (Table I). It can be seen that the general population shows a much higher prevalence TABLE I COMPARISON OF PREVALENCE FIGURES (EXCLUDING DEMENTIA) FOR PERSONS WITH AND WITHOUT MENTAL RETARDATION General Populationa Diagnostic Category
Mentally Retardedb
Prevalence (%)
Associated DSM-IV Codes
Alcohol abuse Drug abuse Schizophrenia/ schizophreniform
5.4 1.7 0.3
F10.0Ð10.9 F11.0Ð19.9 F20.0Ð29
Autismc Manic episode Major depression Dysthymia Phobia Panic Obsessive/compulsive Antisocial personality
0.04 0.1 3.2 3.7 5.1 0.7 1.6 1.8
F84.0ÐF84.12 F30, F31, and F34 F32 and F33 F34.1 F40.1 and F40.2 F40.0 and F41.0 F42.0 Not comparable
a
From Bland Newman & Orn (1988). From Lund (1985). c From Ritvo et al. (1989). b
Prevalence (%)
Diagnostic Category Substance abuse
0.0 6.3
3.6
Schizophrenia/ psychosis of uncertain type Autism
1.7
Affective disorder
2.0 10.9
Neuroses Behavior disorders
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of substance abuse disorders, affective disorders, and neuroses. People with MR are reported as showing higher rates for psychoses and autism and a very high rate for behavior disorders. In a study of 122 people with severe and mild levels of MR, G¬ ostason (1985) concluded that 18% of the group with severe MR were suffering from a severe or incapacitating level of mental illness. This compared with only 3% of the group with mild MR and none of controls. Thirty-seven percent of the severely retarded, 14% of the mildly retarded, and 8% of the control cases were moderately mentally ill. Reiss (1990) reported the prevalence of mental health problems among 205 persons participating in community-based day programs in the Chicago metropolitan area. Using the Reiss Screen to identify symptoms, he reported an overall prevalence rate of 39%. It is, however, quite difÞcult to compare the results of this study with those quoted above because ReissÕs study did not apply diagnostic criteria (ICD or DSM). Rather, he reported ÒproblemsÓidentiÞed in his screening instrument. These included a high proportion of ÒsocialinadequacyÓand aggressive challenging behavior. A study conducted in a large residential facility (Crews, Bonaventura, & Rowe, 1994) reported a point prevalence rate of 15.6% for DSM-III-R psychiatric disorders. Of these, affective disorders accounted for over half of the identiÞed cases. The authors felt that their observed prevalence rate was rather low compared with other studies, a Þnding which they suggested may reßect a tendency to diagnostic overshadowing on the part of the clinicians (i.e., ascribing observed symptoms to the presence of MR rather than to the presence of a coexisting mental health problem). An alternative explanation, however, it is that the authors stayed Þrmly within a psychiatric perspective rather than included all cases of challenging behavior. In this respect, their prevalence Þgure may be accurate for that particular facility. (Of course, the use of a residential sample means that the results are not gerneralizable to the wider population of people with MR.) Patel, Goldberg, and Moss (1993), used the PAS-ADD semistructured clinical interview to assess the mental health of 105 older people with MR. The sample consisted of people over 50 years of age who lived in, or originated from, Oldham Metropolitan Borough, a town of approximately 225,000 people in the North West of England. The total identiÞed sample consisted of two groups: those currently in contact with specialist services for people with the Community Support Team and others who were currently not, or who had never been, in contact. This second group was identiÞed through a comprehensive outreach exercise in which contact was made with a wide variety of statutory, voluntary, and private agencies. The extent and coverage of the agency contacts which were made ensured that virtually all people matching the criteria were known by the end of the outreach exercise. The authors reported an overall prevalence rate for psychiatric disorders of 11.4%. The majority of cases were of depression and anxiety, and two-thirds of the disorders were previously undiagnosed.
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B.
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Psychoses
Corbett (1979) reviewed various prevalence studies and concluded that around 5Ð10%of persons admitted to MR hospitals were suffering from schizophrenia or manic-depressive psychosis. CorbettÕs upper Þgure of 10% is supported by several other studies. In a survey of mental health problems in Baltimore, Lemkau et al. (1942) reported a prevalence rate of 9% for psychotic conditions in people with MR, while Payne (1968) found a similar level of 10% in a study of 216 people with MR ages 5Ð76years. Payne concluded that psychoses occur at all levels of retardation and are of long duration. Dupont (1981) presented an analysis on the basis of register information on 22,000 people with MR in Denmark. Among the 6000 people classiÞed as severely retarded, 11.3% had psychosis as a supplementary diagnosis. Doody, Johnstone, and Sanderson (1998) have recently examined the biological basis for schizophrenia, and its potential relation to the presence of MR. Comorbid schizophrenia and MR was found to be associated with higher rates of chromosomal variants. OÕDwyer(1997) found that individuals with MR who developed schizophrenia had signiÞcantly higher rates of complications during birth or pregnancy.
C.
Depression and Anxiety Disorders
Reiss and Benson (1985) suggested that ÒThedepressive symptoms of sadness, loneliness and crying bouts imply a considerable amount of emotional sufferingÓ (p. 331). This is supported by the Þndings of Jacobson (1982) using Þgures from an ongoing government database in New York State. He found that 6.2% of adults with mild MR showed evidence of depression. Meins (1993) studied a group of 798 adults with varying degrees of MR and from different types of residential facility. He identiÞed 38 individuals as meeting DSMIII-R criteria for depressionÑ representing a prevalence rate of 4.8% In relation to anxiety disorders, Stavrakaki and Mintsioulis (1997) investigated a community-based clinical population of 257 individuals with MR and found 27% of them to be suffering from an anxiety disorder. That there are very few prevalence studies of depressive or anxiety disorders in people with MR is an indication of the extent to which this area has been hitherto neglected. One reason for this is that the Òpathway to care,Ódiscussed short below, tends to select those cases whose symptoms lead to management problems or which are very conspicuous. As a result, depression and anxiety disorders are relatively less likely to be referred to mental health services than psychotic conditions or challenging behaviors (Patel, Goldberg, & Moss, 1993). In addition, anxiety disorders are difÞcult to diagnose in people who have MR (Khreim & Mikkelsen, 1997). This is due partly to the difÞculty of getting clear
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descriptions of panic attacks and of autonomic symptoms (Matson et al., 1997; Moss et al., 1997). D.
Prevalence of Psychiatric Disorders in People Exhibing Challenging Behavior
Although a variety of links between challenging behaviors and psychiatric disorders have been hypothesized, there are currently few studies which have addressed this issue. One very large-scale study (Rojahn et al., 1993) used information from MR registers in California and New York to investigate the statistical relationships between challenging behaviors and mental health. Despite the very large number of subjects (89,419 in California and 45,683 in New York) no compelling correlations were found to link aggression, self-injury, destruction, or stereotypies to the presence or absence of a psychiatric diagnosis. However, this lack of association may have occurred because diagnoses in the United States provide avenues to accessing funding streams. People may thus have tended to receive either a psychiatric diagnosis or one of challenging behaviors to facilitate their entry into a particular healthcare system. Also, it must be remembered that many of the data would have been acquired at a time when diagnostic techniques for psychiatric disorders in people with MR were less developed. Walshe et al. (1993) investigated the psychiatric status and maladaptive behaviors of 144 individuals in a long-stay institution. They reported 56% as warranting a psychiatric diagnosis. Individuals with a psychiatric diagnosis were found to have markedly higher scores on overall levels of maladaptive behavior as measured by the ABS Part II. (Higher scores on the ABS Part II indicate more serious behavior problems). In addition, all 13 factors of the ABS were at higher levels for those with a psychiatric diagnosis compared with those with no psychiatric diagnosis. (Of course, the association may have been an artifact of the sample, reßecting an increased probability of people with multiple problems ending up in institutional settings.) A recent study in the Northwest of England (Moss et al., 2000a) studied an epidemiological sample of 234 individuals with challenging behavior and 86 with no challenging behavior. We found that people with severe challenging behavior had a signiÞcantly higher prevalence of psychiatric disorders compared with those individuals who had no challenging behavior (44% versus 15%). The overall prevalence of psychiatric disorders, as measured by the four diagnostic categories, showed people with very demanding challenging behavior had over twice the prevalence compared with those individuals who had no challenging behavior. Depression was four times as prevalent in those whose challenging behavior was more demanding compared with people showing no challenging behavior; hypomania three times as prevalent. The Þndings of this study are potentially important because depression and anxiety, both of which were found to be highly prevalent in the groups with challenging behavior, are conditions that tend to remain undetected
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both in the general population (Goldberg & Huxley, 1980) and in people with MR (Patel, Goldberg, & Moss, 1993). It is thus probable that there are many individuals with MR and challenging behavior who also have unrecognized psychiatric problems. This suggests the potential for reducing challenging behavior by improved recognition and treatment of hitherto unrecognized psychiatric problems. E.
Methodological Issues Relating to Prevalence Studies
Although there are now a substantial number of reported prevalence studies, many of them do not meet the sampling criteria which would lead us to have conÞdence in their Þndings. In particular, most of the studies have used administrative deÞnitions of MR to provide the sampling frame, e.g., Òallpeople on the registerÓand Òallpeople in a residential facility.ÓThese results can, of course, be correspondingly administratively useful. However, as Patel, Goldberg, and Moss (1993) reported in relation to older individuals, many persons functioning at an at least moderate level of MR were unknown to MR services, and this is undoubtedly true for younger individuals as well. Generally speaking, the probability of being known to MR services rises with the severity of retardation. Many people with mild MR are recognized as having cognitive limitations during their school years, but subsequently get lost from sight on leaving school, particularly in countries with comprehensive welfare systems. Overall, it is clear that people with mild MR represent a large population. The World Health Organisation (1986) has estimated that the true prevalence of mild MR in industrialized countries is close to 3%. In addition, the AAMR has noted that this Þgure can rise as high as 30% in poor rural areas and urban ghettos (Grossman, 1983). This also bears on the accuracy of using register data to determine prevalence. The use of data from registers is attractive because it is often easy to generate large subject numbers. Although the registered population is, by deÞnition, administratively deÞned, this could nevertheless be an acceptable sampling frame if all included cases were registered solely on the basis of IQ and adaptive behaviors and all received the same assessments. In practice, of course, this is unlikely to be the case. People, particularly in the mild MR range, are more likely to come to the attention of MR services if they have additional needs (e.g., psychiatric problems or challenging behaviors). Also, an in-depth psychiatric diagnosis or behavioral analysis is more likely to be done if the person exhibits management problems. Additionally, funding and service eligibility are often strongly tied to diagnostic categories. The initial diagnosis might thus have been entered in the personÕs record as a means of determining the appropriate funding stream. Each of these factors introduces a potential source of bias. The task of maintaining an up-to-date register is huge, so there is a constant danger that the information is out of date. Finally, it must be remembered that many of those register records would have been collected over many years, during which time our knowledge
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and assessment procedures may have changed considerably. Overall, register data are only as good as the procedures used to generate themÑsampling, diagnostic, and updating. A further problem with comparing prevalence estimates is that different methodologies lead to markedly different results. This relates partly to issues of diagnosis, which are discussed in a later section. However, it is important to introduce the topic here because the method used for determining ÒcasenessÓhas such a strong inßuence on measured prevalence. In particular, studies relying on routine clinical assessment techniques tend to produce much higher estimates than studies employing rigorously applied research diagnostic criteria. This is to be expectedÑthe tighter the deÞnition of a disorder, the less likely a given set of symptoms will meet the criteria. Also, routine clinical assessments are not designed for distinguishing true cases and noncases. In addition to the choice of diagnostic method, the inclusion or exclusion of challenging behaviors is crucial. Since challenging behaviors are common in people with MR, the criteria for their inclusion or exclusion as mental health problems can have a large effect on measured prevalence. Generally speaking, prevalence studies which have only included symptom patterns which meet clear diagnostic criteria for psychiatric conditions tend to produce much lower estimates of morbidity compared with those studies which include challenging behaviors. Many studies have attempted to improve reliability and generalizability of results by adhering to one of the main diagnostic classiÞcation systems, DSM-IV or ICD-10. However, Sturmey (1993) pointed out that many studies, while claiming to adhere to one of these systems, actually modiÞed or limited their application in various ways. Since even minor changes in diagnostic criteria have been shown to produce substantial changes in diagnosis (Zimmerman et al., 1986) there is obviously a need to examine in detail the precise modiÞcations which have been undertaken before their impact can be assessed. Unfortunately, as Sturmey pointed out, these modiÞcations are often not made explicit. (See also ÒDiagnosticCriteria.Ó)
IV.
THE PATHWAY TO MENTAL HEALTHCARE
The identiÞcation of mental health problems in the community is not just an issue for people with intellectual disability, but is inherent to the nature of mental illness. Unlike physical illness, most types of mental disorder do not have clear boundaries between being well and being ill. Most of us have had the experience of Òthingsgetting on top of us,Ósometimes pushing us to the point where we no longer feel able to cope. In most cases, however, we manage to cope with the help of our support networks. Falloon and Fadden (1993) estimated that these networks are able to manage 90Ð95%of all cases of mental disorder in the community. In this respect, the recognition of psychiatric conditions is highly interactive with the
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context in which the person lives. Certain social situations are more able to contain or deal with the psychiatric symptoms than others, while other social situations may actually produce or exacerbate such symptoms. Goldberg and Huxley (1980) discussed the factors that determine whether someone with a neurotic disorder becomes a Òcase.ÓThey pointed out that the severity of symptoms is not necessarily directly related to degree of incapacity or interference with day-to-day life. Both interpersonal factors and external social factors may determine whether a given set of symptoms results in presentation to a doctor. For most people in the general population, symptoms are often Þrst recognized by family, friends, or colleagues, and the person usually refers him- or herself to a family doctor. The onset of a mental illness is often heralded by being unable to hold down a job effectively or unable to fulÞll roles which had previously been carried out successfully, e.g., parent, spouse, or employee. In the UK, the general practitioner (GP) is the one who usually makes the decision whether the patient (a) has signiÞcant mental illness and (b) whether it can be treated by the doctor him-/herself or whether a referral to a psychiatrist is indicated. The GP thus plays a pivotal role in recognizing and referring people with mental illness (Goldberg & Huxley, 1980). In comparison with this process, many people with MR have far fewer formal role expectations. Apart from those with mild MR, most do not have spouses or children and their work roles are often less demanding. As a result, signiÞcant depression or anxiety may have no dramatic clearly deÞned outward manifestations, although distress to the individual may be considerable. In addition, the primary healthcare system relies heavily on a personÕs ability to recognize and report symptoms of ill health. People with MR often lack the communication skills and conÞdence to do this. Typically, therefore, the decision to consult a GP or other professional regarding psychiatric ill health is not taken by the person with MR him-/herself (Fletcher, 1993; Nezu & Nezu, 1994). Seeking help and treatment for a psychiatric problem is thus dependent upon a third party, Þrst, recognizing the signs and symptoms of psychiatric illness and, second, understanding their signiÞcance and taking action. If the disorder is associated with the development of conspicuous symptoms such as challenging behavior, case recognition is relatively probable. In the absence of specialized knowledge, however, it is likely that many mental health problems will not be identiÞed. Studies have conÞrmed that this is indeed the case; many cases of depression and anxiety disorders remain unrecognized and untreated (Patel, Goldberg, & Moss, 1993; Reiss, 1990). The reasons for unrecognized psychiatric illness are often attributed to carersÕlack of understanding of the cause of the behavior and the need for referral and psychiatric or psychological assessment (Borthwick-Duffy & Eyman, 1990). In the UK, Rodgers (1994) has argued that professionals in primary healthcare may lack the communication skills needed to give appropriate care to people with MR. Langan et al.Õs (1993) survey of 70 GPs in the West of England reported that
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GPs generally lacked special expertise for dealing with people with MR, and almost half felt further training was appropriate. Similar problems have been found in the United States. Harper and Wadsworth (1992) argued that healthcare professionals in the United States often lacked the opportunity to gain experience interacting with people whose ability to express and understand healthcare information is limited. A recent initiative in the UK (Roy, Martin, & Wells, 1997) has attempted to overcome these limitations of primary healthcare services by introducing a general health screening procedure, part of which uses the PAS-ADD checklist (Moss et al., 1998) for identifying signiÞcant mental health problems. V.
DIAGNOSIS OF MENTAL HEALTH PROBLEMS
A number of researchers have asserted that people with MR manifest the full range of mental health conditions as the general population. For example, Eaton and Menolascino (1982) and Reiss (1982) reported surveys of people with MR attending community-based mental health clinics in Nebraska and Chicago, concluding that people with MR are subject to a wide range of emotional disturbances and that the symptoms of speciÞc psychiatric disturbance are essentially the same for people with and without MR. Sovner and Hurley (1983) similarly concluded that mental illness in this population should not be regarded as fundamentally different from that occurring in nonretarded individuals. Despite these assertions, the presence of cognitive and linguistic limitations obviously makes the assessment of mental health problems much more difÞcult than for individual functioning in the normal range. It is equally clear that these obstacles increase with the level of retardation, although the ability to be clinically interviewed cannot be totally predicted by IQ (Patel, Goldberg, & Moss, 1993) Overall, the linguistic barrier between patient and clinician means that the diagnostic process becomes heavily reliant on third-party reports and observations. The consequence of this is that the validity of diagnosis for nonverbal people is most uncertain (Moss, 1995; Moss et al., 1996a). Sovner and Hurley (1986) have discussed limitations of DSM-III for diagnosing psychiatric disorders in the mentally retarded, arguing that many maladaptive behaviors that develop in mentally retarded persons that are actually nonspeciÞc effects of developmental disabilities, such as impaired communication skills. They used the term ÒpathoplasticÓin reference to the distorting effects of personality and intelligence on the presentation of psychiatric disorders. Four pathoplastic factors were describedÑintellectual distortion, psychosocial masking, cognitive disintegration, and baseline exaggerationÑthat were argued to signiÞcantly affect the evaluation process for the mentally retarded and the mentally ill. It was concluded that the clinical interview is of limited usefulness with the mentally retarded and that the clinician must rely on information from caregivers, family members, and treatment records.
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A.
223
Theoretical Approaches to Diagnosis
Most of the psychiatric studies of mental health problems in people with MR have used a polydiagnostic approach to diagnosis, i.e., a variety of symptom patterns being able to fulÞll the same diagnostic criteria. These have usually been underpinned by one of the two main classiÞcation systemsÑICD or DSM. However, in central Europe, psychiatric tradition favors the use of psychodynamic models, and this has been extended to people with MR (e.g., Dosen, 1989). Apart from these psychiatric approaches, behavioral methods of assessment are also extensively used with this population. It is to be stressed that there is no hard-and-fast boundary between the two approaches or that practitioners will exclusively use one approach or the other. Nevertheless, the differences are significant and likely color our view of what constitutes a Òmentalhealth problem.ÓIn the broadest terms, psychiatric assessment is concerned with identifying patterns of symptoms and their historical development, and matching these patterns with those of previously deÞned disorders, such as depression and schizophrenia. The locus of the problem is conceptualized as being essentially within the individual. In a behavioral assessment, on the other hand, the focus is primarily on the behaviors themselves. It is not necessary to assume that the behaviors are indicative of an underlying pathology. Indeed, the result of a behavioral analysis might be that the problem stems from a history of inappropriate learning and is being maintained by the responses of the people around the individual. In other words, the locus of the problem is not Þxed, but exists somewhere between the person and the ecology. For a discussion of behavioral and psychiatric perspectives see Moss (1999b). Given the complexity of mental health problems in people with MR, it is often appropriate to use psychiatric and behavioral approaches as complementary parts of an assessment. Similar behaviors may represent different functions at different times within the same person. (Gardner and Graeber, 1993). Frequently, it can be very difÞcult, both for clinicians and support staff, to distinguish symptoms related to psychiatric illness from behaviors arising from other causes. For example, problems arise when staff are not able to recognize the onset of a psychiatric illness, interpret the situation solely as one where the individualÕs challenging behaviors are getting worse, and lose conÞdence in former strategies being effective. Similarly, complications can arise when staff fail to recognize the onset of a psychiatric illness and persist with strategies to manage the apparent deterioration in challenging behavior, e.g., an individual with bipolar disorder who typically has problems with noncompliance, when suffering from depressed mood, is forced to go to work and complete a full day of activities (Moss & Lee, 2000) In response to this recognition of multiple causality, there is a growing awareness that an assessment must be correspondingly sophisticated. This implies the necessity to encompass all the variables that inßuence an individualÕs behavior
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(e.g., biomedical, psychological, interactional, and environmental) (Gardner & Sovner, 1994; GrifÞths, 1995). B.
Diagnostic Criteria
ICD and DSM criteria have frequently been adopted in studies of mental health problems in people with MR as a way of attempting to improve the validity and reliability of diagnoses. Their use, however, poses a number of questions. For a start, users of these classiÞcation systems have not always adhered to them strictly (Sturmey, 1993). Clarke et al. (1994) reported a number of problems in using ICD-10 criteria for schizophrenia and made a number of recommendations regarding coding of diagnoses and use of multiaxial classiÞcation. Moss, Prosser, and Goldberg (1996) found auditory hallucinations to be the only Þrst-rank symptom that could be detected with any frequency in their verbally competent sample. Almost none of the respondents or informants were able to give an account of thought disorder or passivity delusions which was sufÞciently unequivocal to fulÞll the SCAN algorithm. Delusions were noted quite frequently, but again not with sufÞcient frequency in individual patients to achieve diagnosis. In comparison, the referring psychiatrists indicated that a sizeable proportion of the schizophrenia cases had passivity delusions or thought disorder. This suggests either that faceto-face interview is not a good way to detect these symptoms in people with MR or that they may be overdiagnosed by psychiatrists. It may be that some of the symptoms are more likely to be elicited through long-term clinical contact with the individual. On the other hand, close questioning appears to be the only way in which the presence of these symptoms can fully be ascertained. Certainly, the bases on which clinicians make diagnoses of schizophrenia in people with MR merit further investigation. Overall, it is clear that many researchers and clinicians are of the opinion that ICD-10 and DSM-IV are inadequate for classifying of symptoms of mental illness in people with MR. At the present time, however, our knowledge of the Þeld is insufÞcient to develop new algorithms. C.
Diagnostic Instruments
In order to facilitate a thorough diagnostic and treatment formulation, clinical mental health assessments of individuals with MR need to integrate information from a wide range of relevant sources (Szymanski, 1988). Much of this knowledge needs to come from people who probably do not have a training in psychopathology, such as frontline care staff and families. As a result, a lot of attention has been devoted to the development of assessment schedules that aim to collect knowledge about mental health in a systematic way. Everyone is looking for the instrument that will provide sensitive, valid, and reliable diagnostic information with the
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minimum of effort. Although this aim will never be fully realized, well-designed instruments for completion by informants can provide valuable information in the diagnostic process, and it is clear that many instruments have been designed for this purpose. In the UK there has also been considerable interest in developing improved methods for assessment and diagnosis by clinical staff. In terms of instruments designed to detect a broad spectrum of disorders, the Psychopathology Instrument for Mentally Retarded Adults (Matson, Kadzin, & Senatore, 1984) was one of the Þrst to achieve recognition. It gives a total of eight scales corresponding to DSM-IV diagnoses. The Diagnostic Assessment for the Severely Retarded (DASH) scale (Matson et al., 1991) provides, as its name suggests, a schedule which is speciÞcally designed for use with people functioning in the lower end of the ability spectrum. It covers 13 major psychiatric disorders. For initial case and symptom identiÞcation the Reiss screen (Reiss, 1987) has achieved widespread use, particularly in North America. It consists of 38 items rated on a 3-point scale (no problem, problem, and major problem). The scale includes not only psychiatric symptoms, but also items on aggressive and selfinjurious challenging behavior and items relating to dependency and assertiveness. A number of broad-spectrum diagnostic instruments have also been developed for children and adolescents with MR. The Adolescent Behavior Checklist (Demb et al., 1994) is a self-report scale for use by adolescents with mild or borderline MR. It provides scores on eight subscales based on the DSM-III-R. The Child Behavior Rating Form (Aman et al., 1996; Tasse et al., 1996) is an informant rating scale for use by parents and teachers. It also furnishes eight scale scores. In addition to these broad-spectrum instruments, attention has also been given to schedules speciÞcally designed to diagnose depression. The Beck Depression Inventory (Beck, Ward, & Mendelson, 1961) and the Zung Self-Rating Depression Scale (Zung, 1965) have been simpliÞed and adapted for use with mentally retarded patients by Kazdin and associates (Kazdin, Matson, & Senatore, 1983). The Hamilton Rating Scale for Depression (Hamilton, 1960) has also been used with members of this population. More recently, a number of researchers have reported successful use of the informant version of the ChildrenÕs Depression Inventory with adults who have MR (Benavidez & Matson, 1993; Meins, 1993) D.
The PAS-ADD Schedules
Over a period of 10 years, the UK Department of Health funded the development of a family of instruments known collectively as PAS-ADD (Psychiatric Assessment Schedules for Adults with Developmental Disabilities). The novelty of the PAS-ADD tools lies in their conceptual framework, their targeting at speciÞc professional levels coupled with speciÞc training, and in the fact that they were designed to interlock with one anotherÑin particular, the Checklist (Moss et al., 1998) and the Mini PAS-ADD (Prosser et al., 1998) were developed to provide
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a two-level Þltering system for the identiÞcation and initial assessment of psychiatric disorders. Overall, the instruments were designed to provide a ßow of information from carers, through support staff, to the psychiatrists and psychologists responsible for making diagnostic assessments. The three instruments are listed below. 1. The PAS-ADD-10: A semistructured clinical interview for use with respondents who have intellectual disability and for key informants. It uses a computer algorithm to produce diagnoses and other diagnostic information under ICD-10, and is guided by a clinical glossary. 2. The PAS-ADD Checklist: A psychiatric symptom checklist for use by direct care staff and families. 3. The Mini PAS-ADD: An assessment schedule that can be used by staff who do not have a professional background in psychopathology, but who should have received some training in its use. Although not an interview, this schedule uses a glossary of symptom deÞnitions to guide the coding, similar to that used in the PAS-ADD interview. Conceptually, the PAS-ADD tools are somewhat different from the other instruments available for use with people who have MR. Development of these other instruments has typically started from the symptoms and used psychometric principles such as factor analysis to generate item groups relating to diagnostic categories. One result of this is that the scoring categories sometimes bear little resemblance to the diagnoses and decision rules made by clinicians. In comparison, the SCAN algorithms (World Health Organisation, 1994) on which the PAS-ADD schedules are based was developed to mimic the process of good psychiatric decision making. In effect, the algorithms pose a series of questions: Is the symptom present? If yes, is it sufÞciently severe that it should contribute to the diagnosis? How much weight should be given to the presence of this symptom? The ICD-10 version of PAS-ADD (Moss et al., 1993) was derived from the Schedules for Clinical Assessment in Neuropsychiatry (SCAN) (World Health Organisation, 1994). It uses the SCANÕs glossary, in an unmodiÞed form, to provide the clinical deÞnitions for coding. It uses a version of the SCANÕs computer algorithms to produce ICD-10 diagnoses of psychotic disorders, hypomania, depression, and anxiety disorders. The validity of PAS-ADD in relation to the clinical opinion of referring psychiatrists has recently been investigated (Moss, Prosser, & Goldberg, 1996; Moss et al., 1997). Interrater reliability of the lCD10 version gave a mean of 0.65 for individual item codes of deÞnition and of 0.7 for agreement on index of deÞnition (clinical signiÞcance of the symptoms) (Costello et al., 1997). The relationships between respondent (patient) and informant reports of symptoms, and the implications of deriving diagnoses solely
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from informant interviews, are discussed in Moss, Prosser, lbbotson, and Goldberg (1996). The issues of using care staff as informants are discussed in Moss and Patel (1993). Administration time for the PAS-ADD depends on the number of psychiatric symptoms present. The PAS-ADD effectively consists of a series of Þlter items followed by more detailed questions, so respondents with good mental heath are asked fewer questions than people with a lot of symptoms. The interview takes from 30 min upward to administer. A full evaluation requires the interview to be conducted twiceÑwith the subject and with a key informant. The PAS-ADD Checklist (Moss et al., 1998) is a 27-item questionnaire, couched in everyday language, designed for use primarily by care staff and familiesÑthe people who have the most immediate perception of changes in the behavior of the people for whom they care. The Checklist aims to help staff and carers decide whether further assessment of an individualÕs mental health may be helpful. It can be used to screen whole groups of individuals or as part of a regular monitoring of those who are considered to be at risk for mental illness. It is designed to record the presence of a range of problems, all of which may be part of a psychiatric condition. The scoring system includes threshold scores which, if exceeded, indicate the presence of a potential psychiatric problem, which may then be more fully assessed using the Mini-PAS-ADD. The PAS-ADD Checklist produces three scores, relating to (1) affective or neurotic disorder, (2) possible organic condition (including dementia), and (3) psychotic disorder. Factor analysis of the Checklist completed on a community sample of 201 individuals yielded eight factors, of which seven were readily interpretable in diagnostic terms. Internal consistency of the scales was generally acceptable. Interrater reliability in terms of case identiÞcation, the main purpose of the Checklist, was quite good, with 83% of the decision in agreement. Validity in relation to clinical opinion was also satisfactory, case detection rising appropriately with the clinically judged severity of disorder (Moss et al., 1998). The mini PAS-ADD was designed to help staff to make objectively based decisions about the clinical signiÞcance of symptoms and hence whether the person should be referred for a full psychiatric assessment with an experienced clinician. In addition, the instrument has been designed so that the information collected can aid the subsequent process of diagnosis by a psychiatrist or psychologist which will aid the process of accurate diagnosis. The schedule consists of 11 sections and produces scores relating to the following psychiatric disorders: (1) depression, (2) anxiety, (3) expansive mood, (4) obsessive-compulsive disorder, (5) psychosis, (6) unspeciÞed disorder (including dementia), and (7) autism. As with the Checklist, threshold scores are provided for each of the above seven diagnostic areas. It is recommended that any person who reaches the threshold score
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on any scale should be referred for further assessment. Psychometric properties of the Mini PAS-ADD can be found in Prosser et al. (1998). E.
Clinical Interviewing of People with MR
In general psychiatry, a diagnosis is usually made in a situation where the clinician holds a free-ranging discussion interview with the patient, lasting anywhere from 20 min to an hour or more. The clinician seeks to establish a diagnosis by asking the patient Þrst about current symptoms and difÞculties and then about a broadening range of experiences and events in the past and present (Kendell, 1975). Clearly, this emphasis on verbal descriptions of symptoms is not possible for many people with MR. Nevertheless, some of the more able members of the population can give an adequate clinical interview. Indeed, it is important for a full understanding of the patientÕs needs to conduct a clinical interview if at all possible (Patel, Goldberg, & Moss, 1993). Lindsay et al. (1994) showed that people with mild or moderate MR show a high degree of consistency when reporting feelings of anxiety and depression. From a practical perspective, the rules of good interviewing of respondents with MR are not fundamentally different from those applicable to the general population. There are, however, two particularly important points to bear in mind if the validity of the information is to be as high as possible. First, people with MR are more likely to acquiesce to what they believe the interviewer wants to hear. Second, they often have a relatively short span of attention. With respect to the latter, it is important frequently to recap and summarize what the respondent has said. This has two beneÞts. It reengages and focuses the respondentsÕattention, giving them an opportunity to add more detail. Opportunity is also given for respondents either to concur with or refute the interviewerÕs interpretation of what has been said. Minimizing the tendency to acquiescence is one of the skills that has general applicability to any psychiatric interviewing, but is particularly important in relation to people with MR (Sigelman et al., 1981a). The response set of anyone being interviewed, whether mentally retarded or not, is likely to be determined by their expectations of the interaction. People with MR may have had negative experiences of interviews with professionals that color their expectations. For example, they may believe that something will happen to them as a result of the interview, that they may be sent away somewhere, given medication, or required to change in some way, or they may believe that conÞdential information may be given to someone else. It is thus very important for an interviewer to learn the use of appropriate Òframework-givingÓcomments that can help maximize the respondentÕs conÞdence and sense of security. Overall, the clinical interviewing of people with MR is a skill that demands sensitivity and practice to acquire. An extensive discussion of the techniques for good interviewing can be found in Moss et al. (1996).
PSYCHIATRIC DISORDERS AND MENTAL RETARDATION
F.
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Clinical Interviewing of Informants
A variety of factors are likely to inßuence the quality of informant interview responses. Among these are (a) the nature of the relationship between informant and client, (b) the prior existence of a label such as ÒchallengingbehaviorÓthat could inßuence the judgement of the informant, and (c) diagnostic overshadowing. As well as the general problem of detecting symptoms, there is also the more speciÞc consideration that the perspective of a third party is very different from that of the person experiencing the symptoms. Since a comparatively large proportion of people with MR are unlikely to be able to give a clinical interview, this becomes an important consideration. Moss et al. (1997) found that parallel interviewing of respondents and informants was essential for case detection in their study. Around a third of cases would have been missed if either interview had been omitted. The magnitude of disagreement between some pairs of interviews was considerableÑ in some cases so great that one interview indicated the respondent to have no symptoms while the other showed a clear diagnosis. Not surprisingly, respondents are more likely than informants to report symptoms relating to subjective feelings in general, including autonomic symptoms and psychotic phenomena such as hallucinations and delusions, whose impact on observed behavior is often hard for an informant to evaluate. Informants may be aware of a person hearing voices, but they are less likely to know what the characteristics of these voices are (which can be diagnostically crucial). On the other hand, we have found (Moss et al., 1996) that informants are much more likely than respondents to give clear accounts of worry, loss of interest, social withdrawal, and irritability, for which there may be multiple overt behaviors. Validity of diagnosis by informant report alone may thus depend partly on the nature of the condition. For instance, Moss et al. (1997) found the ICD-10 diagnostic algorithms for schizophrenia and depression to be inherently more robust than those for panic/phobia when applied to a population of people of limited linguistic ability. This was due primarily to the diagnostic importance of autonomic symptoms, which informants often miss. G.
Comprehensive Assessment of Mental Health Needs
Overall, it is clear that mental health needs, of both the general population and of people with MR, are highly complex. Within the same person, similar behaviors may represent different functions at different times (Gardner & Graeber, 1993). In response to this recognition of multiple causality, there is a growing awareness that an assessment must be correspondingly sophisticated. This implies the necessity to encompass all the variables that inßuence an individualÕs behavior (e.g., biomedical, psychological, interactional, and environmental) (Gardner & Sovner, 1994; GrifÞths, 1995). Gardner and GrifÞths (1997) have advocated a multimodal approach to assessment and treatment in which a given behavior may be regarded
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as having both psychiatric and behavioral antecedents. Their model attempts to provide the clinician with a framework to disentangle potential psychiatric and behavioral causes.
VI. A.
TREATMENT
Medication
There is an increasing research interest into psychopharmacology in individuals with MR, several excellent reviews highlighting current issues in the area (Aman, 1991, 1993; Aman & Singh 1988). There is generally a twofold approach to psychopharmacological treatment of individuals with MR: (a) the treatment of a diagnosable psychiatric disorder and (b) the treatment of symptoms (Bates, 1984). The treatment of a diagnosable psychiatric disorder includes schizophrenia, bipolar disorder, major depression, psychoses, attention deÞcit hyperactivity disorder, and various forms of anxiety. However, in most cases, psychopharmacology alone does not successfully treat the disorder and other forms of intervention are necessary to augment the treatment (e.g., behavior therapy and psychotherapy). The second approach to psychopharmacological interventions in individuals with MR is the treatment of speciÞc symptoms. Many symptoms and behaviors that may or may not be related to a diagnosable psychiatric illness are known to be responsive to psychotropic medications (e.g., agitation, hallucinations, selfinjurious behavior and hyperkinesis). In this instance it is important that the use of psychotropic medication be individualized and should only be used when such symptoms are unresponsive to other available treatments (e.g., behavioral and psychotherapy). There have been several authors who have outlined standards for the use of psychotropic medications in individuals with MR (Aman, 1991; Aman & Singh, 1991, Sovner & Hurley, 1985). Kalachnik (1988) deÞned a series of standards for administering medications in individuals with MR and they include interdiscplinary assessment of need for medications; identiÞcation of speciÞc target behaviors (formal psychiatric diagnosis not required); written, informed consent; use of minimal effective dose; periodic attempts to reduce dosage; monitoring of side effects; integration of behavioral, medical, and educational interventions; and periodic data-based evaluations of the medication. In recent years, there has been an increasing focus on drug reduction programs. In the UK, the Leicestershire antipsychotic drug review program of 198 patients resulted in agreement to reduce or withdraw antipsychotic drug therapy in 123 cases. Of 343 who underwent total drug withdrawal, 31 remained off such therapy. Of the 18 who underwent partial dose reduction, 40 suffered a deterioration in behavior that led to a subsequent reinstatement of the drug. Attempts to identify predictive
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factors for successful drug reduction were largely unsuccessful (Branford, 1996). Luchins, Dijka, and Hanraham (1993) found that individuals who do not have psychoses are a potential target group for drug reduction. B.
Psychological Treatments
1. BEHAVIOR THERAPIES Contemporary behavior therapies reßect the contributions of classical conditioning, early reinforcement theory and operant conditioning, observational and cognitive learning, and biofeedback and anxiety-reduction models. Although there have been many studies published that have demonstrated the effectiveness of using behavior therapy to treat severe behavior disorders and to teach adaptive skills in individuals with MR, there have been few that have examined the effectiveness of utilizing such a therapy in the treatment of psychiatric disorders in this population. In practice, however, behavior therapy is often used in the treatment of psychiatric disorders in conjunction with the use of medication. In relation to anxiety disorders, relaxation training has been successfully used even with people who have severe or profound MR and multiple disabilities (Hegarty & Last, 1997; Rickard, Thrasher, & Elkins, 1984). A study of people whose level of disability was moderate, and were able to self-report to some extent, showed that reductions in the behavioral manifestations of anxiety were also associated with similar reductions in self-assessed experience of anxiety (Morrison & Lindsay, 1997). Several studies have evaluated the effectiveness of various types of relaxation technique. Lindsay et al. (1989) compared the effectiveness of behavior relaxation training (BRT) and abbreviated progressive relaxation (APR). The conclusion was that the BRT group showed a more rapid improvement in anxiety symptoms and that this technique was more effective both in group and individual formats (Lindsay & Baty, 1989). Anxiety-management techniques have been successfully used in the treatment of speciÞc phobias, usually in conjunction with desensitization, modeling, and generalization components (Erfanian & Miltenberger, 1990; Lindsay et al., 1988). Intervention strategies for phobias in children and adolescents with MR have been reviewed by King et al. (1990). 2. COGNITIVE BEHAVIOR THERAPIES Cognitive therapy is based on the study of mediating processes where the premise is that an individualÕs affective state is inßuenced by the manner in which s/he perceives and structures his/her experiences. Beliefs, expectancies, plans, and values are seen as having a large contribution to the maintenance of abnormal behavior. The application of cognitive therapy in individuals with MR is relatively new and unexplored. However, some research has been conducted and preliminary Þndings are promising. For example, Benson (1986, 1992) adapted NovacoÕs (1975)
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anger-management model for use with individuals with MR and found it was effective with individuals with mild to moderate MR (Benson, Rice, & Miranti, 1986). The model deÞnes anger as an emotional response to a situation the individual perceives as threatening to his/her self-esteem. The aim of the training is to teach methods of controlling anger as well as socially acceptable ways to express anger. Training includes recognition and identiÞcation of emotions, self-monitoring of mood, relaxation training, self-instructional training, and problem solving. The cognitive demands posed by this kind of therapy mean that it is only really applicable to those individuals with mild MR, such that the individual can make reliable and valid self-reports (Kroese, 1998). This author also stresses the need to assess the clientÕs knowledge and understanding of abstract concepts. In some cases, it is necessary for the therapist to take a more directive role than might otherwise be the case for a person without MR. Lindsay et al. (1993) demonstrated improvements in feelings of depression in two clients who had mild MR. They used all the elements of CBT for depression, suitably simpliÞedÑ e.g., setting an agenda, isolating negative thoughts, eliciting underlying assumptions, testing the accuracy of cognitions, and generating alternative cognitions. 3. PSYCHOTHERAPY The term psychotherapy encompasses a variety of therapeutic approaches including psychodynamic psychotherapy and counseling. The use of psychotherapy with people who have MR obviously faces the same challenges as those relating to CBT (reviewed by Hurley, 1989). Hurley and Hurley (1986) described how to conduct an initial interview with a mentally retarded client. They suggested that, while there are general rules for conducting interviews, there is a particular responsibility for therapists working with this population to adapt to the client rather than to insist that the client conform to a speciÞc set of interview rules. Hurley et al. (1998) discussed adaptations of standard psychotherapy to techniques for working with people who have MR. These modiÞcations included simpliÞcation of structure, language, and activities; use of directive and ßexible methods; and involvement of caregivers. Pfadt (1991) described a social-systems approach to the identiÞcation of treatment goals for psychotherapy with people who have MR and presented a number of models for the blending of behavioral and psychodynamic interventions. Beail and Warden (1996) evaluated a psychodynamic psychotherapy service for people with MR; results indicated signiÞcant improvements in symptomatology and level of self-esteem. A number of authors have advocated the use of psychoanalytic psychotherapy (Beail, 1998; Bothe & Michels, 1992; Gaedt, 1995; Gravestock & McGauley, 1994). At the present time, however, it is difÞcult to evaluate the effectiveness of this approach because of the problems of clarifying therapeutic aims and the current lack of rigorous outcome measures.
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VII.
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SERVICE ORGANIZATION
In relation to the provision of mental health services, people with MR have been disadvantaged in two respects. First, the problems of diagnosis and treatment are greatly increased by the presence of MR and by the communication problems that are often present between patient and clinician. Second (and related to the Þrst point), these additional complications have in the past often led to people being regarded as unsuitable for treatment by general psychiatric services. Today, although mental health services are still generally underdeveloped for people with MR, there is a growing interest in meeting the needs of this population (e.g., Molony, 1993), with a number of countries establishing specialist training in the psychiatry of MR (Day, 1992) and specialist provision (Day, 1994; Bouras, Brooks, & Drummond, 1994; Bouras & Szymanski, 1997; Gravestock, 1994). Day pointed out that special expertise is required for the accurate diagnosis of mental illness which, in this population, often manifests itself in ways very different from those of the general population. Although it would theoretically be possible to train staff in generic settings, the relatively small number of cases that are referred to these settings gives little opportunity for staff in all the various disciplines to gain the necessary skills (Day, 1993). Given the ßuid and dynamic state of service development, it is clear that a variety of models need to be appropriately evaluated. Day (1993) suggested that countries embarking on large-scale deinstitutionalization programs should ensure that adequate mental health services are planned and implemented in parallel with long-stay residential closures. The earlier discussion about the pathway to care serves to demonstrate that there are major issues of access to mental health services for members of this population (Moss, 1999a). Not surprisingly, it has been demonstrated that use of mental health services by people who have MR is conspicuously lower than that of the general population (Dorn & Prout, 1993; Gustafsson, 1997). There is conßicting evidence regarding the factors that predict service entry. In The Netherlands, Driessen et al. (1997) found that the presence of mild MR, living alone, and being an older adult predicted a higher probability of receiving psychiatric services. In contrast, Reiss and Trenn (1984) found the greatest demand for services to be in the 15- to 29-years-old age group, a Þnding they ascribed to the loss of major support on leaving special educational services. The provision of psychiatric services to people with MR via community outreach teams is increasingly gaining favor. Van-Minnen et al. (1993) described the use of a multidisciplinary outreach team working with people who have mild MR and severe behavioral and/or psychiatric disorders. Their approach had a particular focus on the clientÕs social environment (van-Minnen & Hoogduin, 1998). In another study (van-Minnen, Hoogduin, & Broekman, 1997), the authors have
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shown this approach to be a cost-effective alternative to hospital-based treatment and one which does not add signiÞcantly to carer burden.
VIII.
TRAINING
From the above sections it is clear that there are a number of important training issues to be addressed in relation both to the assessment of mental illness by mental health practitioners and to the improved targeting of servicesÑthus increasing the chances that people with mental illness in the community are referred for further assessment. SpeciÞc training needs include (a) improving the specialist interviewing and diagnostic skills of psychiatrists working with patients who have MR (Hauser, 1997; Silka & Hauser, 1997) and (b) awareness training for other health care professionals (Bouras et al., 1995). In addition, there has been insufÞcient attention paid to the role of GPs in relation to the mental health needs of this population. As with the general population, GPs could fulÞll a vital role in detection and referral. In order to do this, however, they need to have the availability of appropriate training. This includes (a) communication skills for working with patients who have MR and (b) speciÞc information about the likely manifestations of mental disorders in this population. In the United States, and in a growing number of other countries, specialist psychiatric training in MR is now available (Menolascino & Fleisher, 1992). A recent review in the UK (Turner & Moss, 1995) has suggested there is scope for training primary care team members, service users, and carers, both as separate groups and in terms of mutual collaboration and communication. There is some literature from the United States (Harper & Wadsworth, 1992; Wadsworth & Harper, 1991) focusing on the training of staff in this respect. For example, Harper and Wadsworth (1992) reported the evaluation of self-study material (text and video) aimed at developing methods of communicating more effectively with patients with MR in medical and dental care settings.
IX.
CONCLUSIONS
This chapter has attempted to be very wide ranging in its coverage of the topics relevant to the mental health of people with MR. As stated at the outset, there are many aspects which it has not been possible to cover, such as ageing, childhood developmental disorders, and pharmacological treatments. Nevertheless, it is to be hoped that the central topics have been covered in sufÞcient detail to give a clear picture of the state of the Þeld. There is no doubt that considerable advances have been made during the past 15 years, there now being a much greater awareness of the importance of addressing the mental health needs of people with MR.
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Considerable progress has been made, particularly in relation to case identiÞcation and diagnosis. Much less progress has been made in relation to the systematic evaluation of treatment options. More generally, we have yet to show that provision of specialist mental health services really has a major impact on lives of the individuals who are being served. For those working in mental health services this may seem self-evident. However, in these cost-conscious times, it is imperative that we direct research to answering some of the fundamental questions. Also, we must continue to explore the differences between the mental health needs of people with severe and profound MR and those of people whose level of retardation is moderate or mild. Risk factors, assessment methods, and treatment options all need to be explored within the context of the personÕs intellectual level. Finally, we must bear in mind that it is important not only to deal with disorders as they occur, but also to minimize the likelihood of the disorder recurring (Curran & Hollins, 1996). Recurrent episodes are more likely either because the personÕs biological vulnerability is increased or because environmental stress overwhelms current coping capacity. An integrated care approach needs to focus on crucial quality-of-life issues such as the maintenance of social networks as well as on assessment and treatment. We need frameworks within which to focus on the longterm aspects of peopleÕs mental health rather than to concentrate solely on treating symptoms when they occur. The adoption of such care models is particularly important for people with MR because the majority of them will need help to develop and maintain strategies for the long-term maintenance of their mental health.
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Development and Evaluation of Innovative Residential Services for People with Severe Intellectual Disability and Serious Challenging Behavior JIM MANSELL AND PETER MCGILL TIZARD CENTRE UNIVERSITY OF KENT AT CANTERBURY KENT, UNITED KINGDOM
ERIC EMERSON INSTITUTE FOR HEALTH RESEARCH UNIVERSITY OF LANCASTER LANCASTER, UNITED KINGDOM
I.
INTRODUCTION
In many Western countries, services for people with intellectual disabilities have been transformed since the 1970s, as institutions have been replaced by residential services in the community (Mansell & Ericsson, 1996). Although generally successful, leading to better outcomes for the people served on many indicators, deinstitutionalization and community living has been problematic where service users have had complex additional problems such as challenging behavior (sometimes called problem behavior). People with challenging behavior are less likely to be offered community services until the end of the deinstitutionalization process (Wing, 1989). They are more likely to be reinstitutionalised (Intagliata & Willer, 1982; Pagel & Whitling, 1978; Sutter, 1980), with some deinstitutionalization programs placing signiÞcant numbers of ÒdifÞcult to serveÓ people in other institutions (Mansell, Hughes, & McGill, 1994a). INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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C 2001 by Academic Press. Copyright All rights of reproduction in any form reserved.
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As Felce, Lowe, and de Paiva (1994) point out, these difÞculties contribute to the view that there is a continuing need for institutional provision for people with challenging behavior. At the same time, institutional provision for people with challenging behavior continues to be problematic. Individuals who have serious challenging behavior are less likely to get the help they need than those who do not present problems. Grant and Moores (1977) found that individuals with higher levels of maladaptive behavior were less likely to receive Òwarm and developmentally promoting contactsÓfrom staff. Felce et al. (1987), replicating Warren and Mondy (1971) in adult services, found that contact from staff was rare and maladaptive behavior was not discouraged. Challenging behavior is also a risk factor for abuse (Rusch, Hall, & GrifÞn, 1986; Turk & Brown, 1993). In a study including some people with challenging behavior, Felce, Thomas, de Kock, Saxby, and Repp (1985) showed that the physical environment of institutions was relatively restricted and barren. Oliver, Murphy, and Corbett (1987) reported that people with challenging behavior were less likely than others to get access to day care in institutions. Often, people with challenging behavior in institutions are likely to be congregated together on special wards or units, which may present problems of client throughput, staff turnover, and quality of care (Hoefkens & Allen, 1990; Newman & Emerson, 1991; Raynes, 1980). How best to serve people with problem behavior therefore represents a continuing challenge to community services at the present time. Despite the development of many effective interventions for problems at individual level and an emerging technology of positive behavioral support (LaVigna & Donellan, 1986), deploying this technology in services is apparently often problematic. In this situation it is relevant to provide demonstration projects which attempt to integrate positive behavioral support with life arrangements which offer high-quality experiences in all domains of the personÕs experience (Bellamy, Newton, LeBaron, & Horner, 1986; Risley, 1996). This chapter reports the results of such a project, designed to provide residential services in the community for people with severe and profound intellectual disabilities who had such serious challenging behavior that they were said to need continuing institutional placement. There have been few reports of such projects. Horner et al. (1996) provide one example, and earlier work in Oregon (Newton, Romer, Bellamy, Horner, & Boles, 1988) and in Britain (Felce, 1996) included people with challenging behavior in innovative community-based residential programs. This chapter provides a comprehensive account of the project. It describes the people served and the services set up to replace institutional care; it presents the results of evaluation studies which tracked changes after transfer and compared different service models; it examines individual cases to illustrate success and failure; and it reßects on the achievements, problems, and implications of the project for services to this client group and for future research.
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A.
247
The Project
The project took place in southeast England as part of a large program to replace hospitals for people with intellectual disabilities (Korman & Glennerster, 1990), led by a regional health authority (a strategic planning body responsible for the National Health Service for 3.7 million people in Kent, Sussex, and Southeast London). Initially, it had been planned to build new, smaller hospitals, including several special units for people whose challenging behavior was regarded as the most difÞcult to manage (South East Thames Regional Health Authority, 1979). By the early 1980s the emphasis had shifted to the development of community-based services following the ÒOrdinaryLifeÓmodel (KingÕs Fund Centre, 1980; Mansell, 1988; Mansell, 1989; Mansell, Felce, Jenkins, de Kock, & Toogood, 1987) and the plans for special units were questioned as out of date. An alternative proposal (Mansell, 1984; Mansell, 1985) called for the creation of a ÒSpecial Development TeamÓ to enable local services to develop the expertise to maintain individuals with serious challenging behavior in the community. This proposal was endorsed in 1985 (South East Thames Regional Health Authority, 1985) for people with severe and profound intellectual disabilities. A different model, based on a short-term treatment unit, was adopted for people with mild intellectual disabilities (Clare & Murphy, 1993; Dockrell, Gaskell, Rehman, & Normand, 1993; Dockrell, Gaskell, Normand, & Rehman, 1995; Gaskell, Dockrell, & Rehman, 1995; Murphy, Holland, Fowler, & Reep, 1991; Murphy & Clare, 1991; Murphy, Estien, & Clare, 1996). The Special Development Team (SDT) was created in 1985. The TeamÕs remit was to help local agencies develop individualized placements for people with severe and profound intellectual disabilities who had the most serious challenging behavior (Emerson et al., 1987). The strategy of setting up the Special Development Team was intended to fulÞl several distinct purposes: 1. It was intended to help local agencies meet the needs of their most difÞcultto-serve service users at a time when they faced many other pressures due to the pace of the hospital closure program. 2. It was also hoped that these local projects would serve as demonstration projects through which local services would have the opportunity to develop policies, procedures, and competencies which would be applicable to other services for people with severe intellectual disabilities within their own area. 3. The strategy also had the implicit objective of helping to demonstrate to local and national policy makers that well-planned community services provided the best option for all people with severe intellectual disabilities, including those presenting the most seriously disturbed behavior.
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It was not required that each personÕs challenging behavior be successfully treated or resolved before they moved to community settings, not least because one of the reasons for replacing the hospitals was their failure to meet such complex and highly individualized needs. Nor was it believed that challenging behavior would necessarily disappear after transfer to the community, since there is evidence from other projects (e.g., Lowe, De Paiva, & Felce, 1993), and good reasons to predict (McGill, Emerson, & Mansell, 1994), that this will not happen. It was intended to manage and treat challenging behavior as far as was possible, given the constraints of lack of knowledge as well as practical considerations. It was believed that better resourced and better organized placements in the community ought to help make this possible. But the primary goal was to enable the individuals concerned to experience a good quality of life in spite of any continuing challenging behavior. B.
The Context
Research and development projects like the Special Development Team depend not only on the characteristics of the initiative but on the arrangements which provide the context in which the project takes place. There are two distinctive features of the English context which are relevant. First, English government policy, though favoring the development of community-based services, has remained equivocal about the future role of institutions for people with multiple disabilities or with challenging behavior (Department of Health, 1989b; Department of Health and Social Security, 1971; Department of Health and Social Security, 1984). Despite the development of model services which did serve these people, Þrst in larger community-based facilities (Felce, Kushlick, & Mansell, 1980) and then in staffed houses (Felce, de Kock, & Repp, 1986a; Felce & Repp, 1992; Mansell, Jenkins, Felce, & de Kock, 1984), government policy continues to hold open the option of institutional care (Emerson et al., 2000). Second, English services have a poorly developed infrastructure of professional resources required to deliver skilled intervention of the kind required by people with challenging behavior. The great majority of residential care staff are untrained and staff with relevant qualiÞcations are scarce (Department of Health and Social Security, 1979). There are weak management incentives to achieve quality outcomes for individuals (Mansell, 1996). There is a national shortage of clinical psychologists in the specialty (Management Advisory Service to the National Health Service, 1989) and only a tiny proportion of people with challenging behavior have psychological treatment programs (Oliver et al., 1987). Thus the feasibility of small-scale community-based residential services for people with intellectual disabilities and serious challenging behavior was in question both in national policy and in terms of the readiness and capability of local service agencies. Participation by these agencies in the project was voluntary. The Regional Health Authority funded the Special Development Team, expressed its
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policy commitment to the Team and its work, and offered Þnancial incentives to local services to work with the Team. But some local agencies did initially opt to make alternative provision (such as institutional care in new hospitals or out-of-area placement in private or voluntary homes).
II.
PROVIDING HIGH-QUALITY SERVICES IN THE COMMUNITY
This section describes the characteristics of the people served, the characteristics of their placements, and what happened to them. Information about placement quality mainly comes from an evaluation study which followed 18 of the original referrals made to the Team over a 4 12 -year period and included 13 of the 22 clients for whom placements were actually established (Mansell, 1994, 1995). A.
Service Users
The Special Development Team used a highly individualized approach to assessment and construction of an effective service package. The process had four stages, involving case identiÞcation (Emerson et al., 1988), the development of an individual service plan (Toogood et al., 1988), support in commissioning services (Cummings et al., 1989), and, Þnally, providing additional support to new placements during their initial years of operation (Emerson et al., 1989; McCool et al., 1989). Figure 1 shows the number of referrals made to the Special Development Team and their progress during the life of the project. Although many people with severe or profound intellectual disabilities may present behavior problems (Qureshi, 1994), those served by the Special Development Team were chosen because they had the most extreme and durable challenging behavior. The project had been conceptualized initially as focusing on the ÒmostchallengingÓindividuals with severe or profound intellectual disabilities living in two large institutions scheduled for replacement by community residential services; these individuals were recognized to present exceptional challenges to services and had originally been destined for new institutional placements. The 35 individuals accepted onto the TeamÕs caseload had the following characteristics: 1. Twenty-Þve were men and 10 were women; their overall average age was 26 years (range 13 to 39). 2. Most had spent much of their lives in institutional settings, an average of 16 years (range 0 to 33). Only three individuals had never lived in an institutional setting, these being three of the four youngest individuals (all in their teens)
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FIG. 1. Progress of referrals to Special Development Team.
who had lived (apart from respite and other temporary breaks) all their lives with their families. 3. Many had lived in several different placements, not counting different wards within institutions. The average number of previous placements was 3 with a range of 0 (those living with their families) to 11. 4. Twenty-nine clearly presented severe or profound intellectual disabilities. Six individuals had a lesser or unclear degree of intellectual disability. They
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5.
6.
7.
8.
9.
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were, nevertheless, accepted as referrals because the level of everyday support they required was similar to the rest of the group and for the pragmatic reason that no other specialist resource was willing or able to support service development. All displayed more than one seriously challenging behavior and many displayed several. The most frequently occurring behaviors were aggression, destructiveness, and self-injury. Typically, problems included scratching, punching, kicking, biting, and throwing objects (chairs, tables, and crockery) at people and hand-to-head self-hitting. For many people, these behaviors were relatively infrequent in the institutional setting (happening several times each week but not every day), possibly because these settings provided very low levels of demand. They were sufÞciently serious that the individuals concerned were identiÞed as the most difÞcult to serve in the institutions. This level of difÞculty was reßected in the prescription of psychotropic medication (hypnotics, sedatives, antipsychotics, and antidepressants) for purposes of behavior control; all bar two (two of the youngest people) were receiving such medication. In all but one case, service usersÕchallenging behavior had a long history and was reported to have emerged early in life. Challenging behavior was reported before the age of 6 in 13 cases and before the age of 11 in a further 16 cases. Lack of information about some individuals is likely to mean that problems Þrst emerged rather earlier than reported. Challenging behavior had, in a number of cases, proved resistant to treatment at specialist units. Twenty-three individuals had attended such units at some time of their lives, in some cases more than one unit on more than one occasion. In particular, 12 of the group lived at the time of referral in special wards or units operated by the Regional Health AuthorityÕs long-stay hospitals for people with the most difÞcult problems and 5 were similarly resident in specialist resources outside the Region. Eight individuals had (as children) attended a specialist NHS unit in London for the treatment of children with severe behavior problems In 16 cases analog assessment procedures (Iwata, Dorsey, Slifer, Bauman, & Richman, 1982) were (or had been) used to assess the function of service usersÕchallenging behaviors. For all but one individual (where the results were unclear) these procedures suggested clear relationships between aspects of the personÕs behavior and environmental arrangements. The most common relationship involved the occurrence of challenging behavior to escape demands but evidence was also found of some behaviors being motivated by access to attention, stimulation, or tangible outcomes (Emerson et al., 1988). Twenty-three individuals were reported to have signiÞcant impairments in addition to their intellectual disability and challenging behavior. In particular 10 individuals were reported to have epilepsy, 6 sensory (especially visual)
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J. Mansell, P. McGill, and E. Emerson impairments, 5 autism, and 5 physical limitations as, for example, associated with cerebral palsy and leading to mild/moderate mobility restrictions.
Qualitative descriptions of two of the service users may serve to emphasise the severity of the problems presented. An assessment report based on one personÕs institutional placement before resettlement included the following: . . . these (behaviors) include assault of others (pulling hair, pinching, scratching), manual evacuation and smearing of faeces, removing and tearing her clothes, eating inappropriate objects (eg, torn clothing), throwing objects and stealing food. These behaviours occur on at least a daily basis if she has the opportunity. Aggression occurs regularly and persistently whenever she is approached. She currently spends the majority of her day sitting or lying under a blanket in the corner of the ward. The combination of faecal smearing and aggression on others approaching has led to her being avoided by staff unless it is absolutely necessary to approach her . . . in general she is a very challenging young woman who will respond with unpleasant aggression (faeces smeared hand in the victimÕs hair) if approached.
Similarly, a second individual was described as follows: General behavior could be described as hyperkinetic. He will sit or lay for lengthy periods of time, continually rocking. He will run rather than walk . . . He expresses very violently aggressive behaviour towards staff and residents. These disturbed periods . . . generally begin with him becoming withdrawn and sullen with frequent incidences of faecal smearing and manual evacuation. He will then become very uncooperative and aggressive . . . with no apparent provocation.. he will suddenly run toward a fellow resident or member of staff and launch into a full physical onslaught . . . he will claw at the eyes and facial area of the person he is attacking. He will also bite, although his teeth are removed . . . He is separated from the person he is attacking and conveyed to his seclusion with minimum force.
The case identiÞcation process resulted, therefore, in a named group of service users who presented substantial and long-lasting challenging behaviors which had proven difÞcult either to treat or manage successfully. B.
Individual Planning
In total, 31 individual service plans were developed for clients in 14 District Health Authorities (service funding and providing organizations each serving about 250,000 people). The plans involved relatively high levels of service and were therefore expensive. Typically, a process of negotiation about the plans ensued with the authority in which program considerations were traded-off against costs. Of the 31 plans prepared, 25 were accepted by the responsible authority and led to the establishment of 22 placements. In general, the placements were set up to reßect best practice in using ordinary housing to support people in the community, following the ÒOrdinaryLifeÓ model (KingÕs Fund Centre, 1980). In most areas in which the Team worked, the placements were similar to other services being set up locally for people leaving
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the hospital. They were houses or apartments for the individual concerned, usually living with one or a few others, supported by a team of staff (i.e., they were small staffed houses or group homes). In the remainder of this chapter these settings are called specialized staffed houses in order to differentiate them from other residential provision in the community. In addition, special emphasis was paid to adopting what has come to be called an Òactive supportÓmodel of care (Jones et al., 1996; Mansell, 1998; Mansell et al., 1994a), which required staff to be particularly well-organized in the support they offered service users and had major implications for staff training and for Þrstline management. This approach, described by McGill and Toogood (1994), was developed from that described by Mansell et al. (1987, 1984) and Felce (1988) and presented in a series of video-assisted training materials (Brown & Bailey, 1987a, 1987b; Brown, Bell, & Brown, 1988; Brown & Brown, 1988; Brown & Brown, 1989; Brown, Ferns, & Brown, 1990; Brown, Toogood, & Brown, 1987). In general, Òactive supportÓhas four components: 1. Service users are offered opportunities to take part in everyday activities at home and in the community rather than childish or special therapeutic activities. The advantages of using real activities are (i) there is much more variety, (ii) many service users Þnd them more interesting, (iii) they are less dependent on staff to signal each step, and (iv) they provide opportunities for service users to show that they can take part successfully in ordinary activities like other people (Felce, de Kock, Mansell, & Jenkins, 1984; Mansell, Felce, de Kock, & Jenkins, 1982). 2. Staff pay particular attention to working as a team and to scheduling and coordinating the choices and opportunities they offer. This involves establishing routines (like those found in everyoneÕs lives) for the carrying out of ordinary activities (Saunders & Spradlin, 1991) and regular (on a shift or daily basis) planning of how they will systematically share themselves across clients to provide the high level of support needed, often by more than one person at a time, for meaningful participation. 3. Staff focus on helping service users take part minute-by-minute (Òevery moment has potentialÓ),Þnding the parts of complicated tasks that even the most disabled person can do and doing the other parts of the task themselves so that the person is almost guaranteed to succeed. Staff provide graded levels of assistance to ensure success and take account of individual preferences for activities and types of help to reduce the likelihood of challenging behavior. 4. Staff carefully monitor, using simple record-keeping procedures, the degree to which service users are taking part in ordinary activities with the right level and kind of support. Regular, client-centred staff meetings allow for plans to be modiÞed in the light of experience and support consistent practices across the staff group.
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While the primary purpose of this approach was not to teach skills nor reduce challenging behaviors it provided a context within which these desirable outcomes became more possible. Incidental opportunities could be taken as they arose with individual programs reßecting current best practice being developed where useful or necessary. The best chance of success for these programs comes when they are part of a rich, varied life so that the task is to attend to the quality of the whole of the personÕs life and not to make them wait while their behavior is ÒÞxedÓor until they become more independent. The Team provided additional professional support to the placements during the Þrst 1Ð2years of their operation (and in some cases for longer). The aim was to gradually reduce Team support as the local agency gained in experience and conÞdence. This approach was intended to reduce the often encountered problems of failure to transfer innovation from the supervised to unsupervised situation (Anderson, 1987). At all times the new placement was managed by the local agency and therefore Þtted in with local management arrangements. C.
Placements
Of the 22 placements established 13 have been maintained to date, 7 in the original community setting and 6 in new community settings resulting from planned relocations (within the same district). As of February 2000, these 13 services had been maintained for periods of between 8 years, 5 months and 12 years, 5 months, an average of 10 years, 1 month. Nine had closed for a variety of reasons: 1. In two cases (two clients sharing a house) lead agency responsibility changed hands from the District Health Authority (DHA) to a not-for-proÞt organization funded jointly by the DHA and the Local Authority. In the face of operational and Þnancial difÞculties this organization subsequently relocated the individuals to a local service for six people, most of whom presented some degree of challenging behavior. 2. In three cases the project closed because the lead agency (two different DHAs) felt that the clientÕs behavior could not continue to be managed within a community-based setting. In one case the client was moved to a ÒcrisisinterventionÓplacement on the periphery of a large hospital where he remained for 11 years, before moving to a 6-person unit for people with challenging behavior in another part of England. In one case the client was relocated within the district to a small intellectual disability hospital and, subsequently, to a private psychiatric hospital where he remained for 8 years, before moving to a 10-person unit for people with challenging behavior. In the third case the client was relocated to a private psychiatric hospital and subsequently to a private placement but, with support from the Special Development Team, returned to a newly developed placement in her home district which remains in place 9 years later.
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3. In one case the client died of a heart attack 9 months after the placement was established; in a second case the client died as a result of status epilepticus 9 months after the placement was established; in a third case the client was moved, eventually to a nursing home, because of physical deterioration, where he subsequently died; in a fourth case the person died in an accident. D.
Service User Groupings
The average number of clients per placement (including the SDT client) was 2.9 with 3 people living with no handicapped cotenants, 6 with 1 other, 6 with 2 others, 4 with 3 others, and 3 with 4 others. In general, then, the placements established were for slightly smaller groups of people than was common in residential care for people with intellectual disabilities (Raynes, Wright, Shiell, & Pettipher, 1994). While numbers of cotenants were similar to those planned, there was a signiÞcant difference in their characteristics. Many cotenants displayed challenging behavior (18 of 42) and this was sometimes of a serious nature. Indeed 8 clients had cotenants who were themselves SDT clients. This contrasted sharply with the original plans in which it was envisaged that only 4 cotenants would display challenging behavior, 3 of whom would be SDT clients (see Section III, F). Similarly, the original plans usually described cotenants as being more competent than SDT clients. As 33 of 42 also had severe intellectual disabilities this aspiration also seems to have been generally not met. E.
Buildings
At the beginning of the project, most service users lived in two large institutions for people with intellectual disabilities in southeast England. One had been built in 1886, with barrack-block wards and detached villas built later; the other had been built between the wars and consisted entirely of detached villas. Both hospitals were destined for closure, the older closing in 1989 and the other in 1992. These settings were of very poor quality. Participants lived either in ordinary hospital wards or in wards or units designated for the care of people with behaviormanagement problems. The ordinary wards provided most space (average 629 m2) but also had the most residents (average 19). The special units provided on average 409 m2 and had on average nine people resident. In the hospital wards about 15% of the space was unavailable to residents compared to 36% in the special units. Among others, the rooms restricted included, in almost all cases, the kitchen, bedrooms, bathrooms, staff ofÞce and rest rooms, cleanersÕcupboards, laundry, and other storerooms. Half the group lived in wards which were kept locked. The material environment was typically dilapidated, barren, and somewhat bizarre. There were sometimes shortages of furniture and in other cases there were unusual arrangements (e.g., one ward had 17 sideboards and wall units in the living room).
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The houses and apartments provided in the community were quite different. They were usually ordinary properties among houses owned by the general public, but in three cases they were on the same site as other residential facilities. They were usually bought on the open market. While many properties required substantial modiÞcations these were dictated more by the needs of the property than by the needs of the service user. ModiÞcations made to take account of the challenging behaviors presented by service users included strengthened glass, soundprooÞng, and electrical circuit breakers, but these modiÞcations were made selectively in response to individual need rather than routinely. Although providing less space than the institutions (average ßoor area 92 m2), the houses provided as much space per person (average three residents) and all the space was available to the residents. The material environment was much richer than the institutions, with the full range of typical furnishings and equipment. Furniture, Þxtures, and Þttings were selected to be as aesthetically pleasing as possible but also to minimize unnecessary risks and to withstand heavy prolonged use. These criteria sometimes resulted in more expensive, higher quality furniture being provided than customary in staffed housing. F.
Staffing
In the institutional placements studied before transfer, stafÞng levels were relatively low (average 0.32 staff per resident in hospital and 0.64 in special units), although at least one person on duty was a qualiÞed intellectual disability nurse. The houses had much higher stafÞng levels than the institutions (average 1.1 staff on duty per service user). Staff teams had a home leader and usually had one or more deputy/assistant home leaders, with the rest of the posts being support workers/care assistants. In some cases the recruitment and appointment policies of the provider agencies meant that senior placement staff had to have nursing qualiÞcations. In others it was possible to appoint staff with other relevant qualiÞcations or experience. Detailed job descriptions (Special Development Team, 1988) were developed to complement agenciesÕexisting materials. Recruitment (especially to home leader and deputy home leader positions) often proved difÞcult (Cummings et al., 1989) with few candidates having all of the desired attributes. Normal recruitment policies were used though it often proved necessary to advertise and/or to readvertise nationally as well as locally. Even following this, it was in many cases necessary to appoint individuals with limited qualiÞcations/experience and much to learn about working with people with challenging behavior in community settings. Some home leaders and deputy home leaders participated in an induction training program provided by the SDT. This program (Special Development Team, 1988) included coverage of the organizing and setting-up of services, the practical aspects of managing staff and resources in a small home, and approaches
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to managing and changing behavior. In all services an induction program of 1Ð2 weeks was provided for the whole staff group prior to the service opening. This program was usually jointly planned and provided by the managing agency and the SDT and included coverage of the nature and causes of challenging behavior, ways of recording behavior, supporting service user participation in activity, assessment and teaching, as well as the more routine aspects of working in a small community-based home (Cummings et al., 1989). G.
Costs
Detailed information about costs of each service is given in Emerson and McGill (1993) and McGill, Emerson, and Mansell (1994). The average annual cost of the 22 established placements was £166,000 (range £77,600 to £271,400) at July 1999 prices. These are costs for the whole service, including all the residents, but not including the costs of advice and support from the Special Development Team. It is possible to make a crude adjustment to take account of these by determing the costs of other places in each setting using the average cost of these types of service. Using data presented by Emerson et al. (1999a) the average accommodation cost (including staff) for dispersed housing per place is £41,340 per annum. Reducing the placement costs by this amount for each person who was not a client of the Team would, in some cases, leave a cost for the SDT client of less than this. In these cases, it seems appropriate to divide the total cost equally among the residents. These adjustments yield an average cost per SDT client per annum of £101,500 (range £35,500 to £188,600). Thus, in general, these were very expensive placements when compared with ordinary staffed housing services. However, specialized institutional placements for service users with serious challenging behavior are more expensive than ordinary residential services. Dockrell et al. (1993) provide cost information for a specialist unit for people with mild intellectual disability and serious challenging behavior and for private institutions. Adjusting the data to July 1999 prices gives an annual cost per place of £105,200 in the specialist unit and £74,000 in the private institution. Data from one District Health Authority (A. Powell, East Kent Health Authority, personal communication, February 7, 2000) at the time of writing gives average costs of £101,916 per place for 12 people in specialist units (range £63,277 to £156,950). Thus, the placements set up with the help of the Special Development Team have rather similar costs to the specialist units which end up caring for people whose local placements break down. H.
Local Professional and Managerial Support
The importance of support from local professional and managerial staff was recognized at the outset, both because the community placements were trying
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to meet relatively complex individual needs and because they were intended to function partly as local demonstration projects. Local managers and professionals (including senior staff not likely to be involved directly in the service) were involved in the planning process in an effort to generate local ownership and commitment. Despite these efforts, placements often experienced insufÞcient local support. Home leaders often voiced concern about the lack of support from their middle managers and about the shortage of specialist skills, especially in the areas of behavior management and communication. The lack of middle management support (for whatever reasonÑlack of commitment or time or competition from other demands) resulted in many services in a failure to provide placement staff with clear expectations about what the placement should be achieving and how, a failure to monitor progress toward such achievements, and a failure to intervene at an early stage to resolve developing problems. Consequently, in some services, excessive autonomy was given to the home leader and staff group to determine working practices. Local professional support was also very variable. While some services were able to make extensive use of clinical psychology, speech therapy, community nursing, and other such resources, these were much less available to others and completely absent in some.
III.
ACHIEVING A BETTER QUALITY OF LIFE
Quality of life was measured in the evaluation study by direct observation of how service users spent their time. Directly observing the experience of service users avoids inadvertently confounding measures of process and outcome; where evaluations have used measures of, for example, individual program goals achieved it may be that the result owes more to staff activity (in this case, in setting achievable goals) than to real differences in service user experience (de Kock, Saxby, Felce, Thomas, & Jenkins, 1988; Repp & Barton, 1980). User activity patterns have been widely studied in research on British intellectual disability services (Emerson & Hatton, 1994; Emerson et al., 1999b; Felce, de Kock, & Repp, 1986b; Felce et al., 1980; Joyce, 1988; Mansell et al., 1984; Rawlings, 1985) and are beginning to be used in routine service monitoring (Hewson, 1991; Hewson & Walker, 1992). There is, therefore, a good basis for comparison of results with other studies. Although activity patterns themselves do not provide much information about such qualitative goals as the choice open to an individual, or the respect in which they are held, it is likely that improvements in these areas will be reßected in the variety of activities and the extent of the personÕs participation in them and that if low levels of engagement in meaningful activity are found this reßects a genuine problem whatever other measures may indicate (Mansell et al., 1987). Although some attempts have been made to use interview schedules (OÕNeill,
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Brown, Gordon, Schonhorn, & Greer, 1981) direct observation currently provides the most accurate way of measuring the activity of users (Joyce, Mansell, & Gray, 1989) who are unable to speak authoritatively for themselves. In all, data was collected on nine occasions between February 1987 and September 1991, although not all participants were included at each occasion. At each datapoint, observations were collected for 11 h from 08:00 to 19:00, typically built up in three shifts on 3 days in the same week. Days were primarily selected to Þt in with observersÕwork schedules, but where observers or staff believed that observation on a particular day would produce untypical results (e.g., where a participant was unwell or where a special event was planned) observations were rescheduled where possible. The participants in the evaluation study were the Þrst people in the long-stay hospitals for whom individual service plans were developed. Although it is not possible to be sure that they are representative of all the people served by the Special Development Team (since the Team did not collect standardized information on all its clients) they were a very disabled group (Table I). The primary measure was a 20-s momentary time-sample, collected using a hand-held computer (initially Epson HX20s, then Psion Organisers). Details
TABLE I CHARACTERISTICS OF PARTICIPANTS OF EVALUATION STUDY a Into Person Sex Born care ABS Stim SIB Agg Dam JK MM
M M
1956 1961 123 1949 1973 52
6 2
MS HM PH ST BF SS WG
M M F M F M F
1957 1958 1954 1956 1950 1958 1955
6 5 5 6 4 4 5
GF
M
1957 1975
78
5
SM MT FP
F F M
1954 1960 49 1958 1968 110 1973 1990 94
4 5 3
a
1961 87 1967 80 1961 80 1961 154 1964 211 1965 86 1961 70
√
√
√
√
√
√
√ √ √
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
√
Other problem behavior and other conditions Strips, climbs; autism, schizophrenia Hoards, strips, absconds, noncompliant; epilepsy Steals, absconds; autistic Rummages in rubbish; epilepsy Steals, strips; epilepsy Strips Smears feces, pica, strips; phenylketonuria Pica, steals, absconds, inappropriate sexual behavior; epilepsy Noncompliance, strips, smears feces Smears feces, strips; epilepsy Noncompliance, vomits
Abbreviations: ABS = total score on Part One of AAMD Adaptive Behavior Scale; Stim = number of different self-stimulatory behaviors; SIB = self-injurious behavior; Agg = aggression to other people; Dam = damage to property.
260
J. Mansell, P. McGill, and E. Emerson
of the procedures and deÞnitions are given in Beasley, Hewson, and Mansell (1989). A 20-s interval was selected as sufÞciently accurate to examine data averaged over periods as short as an hour (Mansell, 1985; Repp, Barton, & Brulle, 1982). Observers followed the participant as unobtrusively as possible throughout the observation period. Observations were not made where the participant or staff indicated that they wished them to stop, nor in intimate or private situations, nor when (in a few cases in institutions) the person was in seclusion. Observers were also instructed to cease observing and intervene if needed to protect the participant or other people from harm and this was occasionally necessary. Of the maximum possible number of observations (just over 212,000), 6% were missed for these reasons. At each observation, the observer recorded the participantÕs behavior in four categories: activity, social behavior, contact from other people, and problem behavior. At least one code was entered in each category and multiple codes could be entered if necessary. 1. Activity codes comprised no activity (e.g., doing nothing, just walking about, and sitting), leisure (e.g., playing an instrument, watching television, and completing a jigsaw), personal (self-care activities, e.g., eating and washing), using equipment (e.g., operating a food blender, a hedge trimmer, or a vacuum cleaner), other practical tasks or chores (e.g., sweeping up, laying table, and folding laundry), work or formal education (e.g., participating in a teaching program), and out walking (e.g., walking in the park and walking to shops). A code was also entered if the participant was in seclusion. 2. Social codes were no social behavior, clear social act (e.g., speaking to someone or tugging their sleeve), unclear social act (e.g., vocalizing and waving arms near a person), and social act to observer. 3. Contact codes (contact by other people to the participant) were no contact, positive (e.g., praise or hug), negative (e.g., hitting or restraining), neutral (e.g. conversation or passing the time of day), and assistance (directly helping the person do a constructive act, e.g., holding a bowl while they used an electric whisk, guiding their hand while cutting, pointing, or telling the next step in a chain of tasks). Contact from other clients was distinguished from contact from staff or visitors. 4. Problem behavior codes were no problem behavior, self-stimulation (e.g., hand-weaving and stereotypical body movements), self-injury (e.g., headbanging and wrist-biting), aggression to others (e.g., hitting, spitting, and kicking), damage to property (e.g., smashing furniture, and tearing clothes), and inappropriate vocalization (e.g., moaning, screaming, and swearing); and then additional codes for other problems deÞned specially for each individual (e.g., fecal smearing and absconding).
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Reactivity was assessed using the code Òsocialact to observer.ÓNegligible levels of social contact from participants to observers were recorded. Twelve of the 13 participants were recorded as contacting observers for less than 1% of observations. One person (participant SS) was recorded as contacting the observer for between 0.1 and 2.25% of observations (average 0.54%, equivalent to 3.5 min in the 11-h day observed). Before each datapoint, observers retrained on the measure by jointly rating videotapes until they reached a criterion of at least 80% agreement (including occurrence and nonoccurrence). At every datapoint, interobserver agreement was assessed for each participant by having a second observer independently collect data for 30 min (on a few occasions these reliability sessions were missed due to practical difÞculties). This yielded 7615 paired observations (3.6% of the total). During the study point-by-point agreement, weighted by occurrence and nonoccurrence, was calculated at each datapoint and ranged between 84 and 95%. Pointby-point agreement and CohenÕs kappa (Kazdin, 1982) were calculated for each code using all the available data and these statistics are reported for each of the results given below. Figure 2 shows, for each of the 13 participants in the evaluation study, the overall level of participation in meaningful activity and the level of major and minor problem behavior at each observation before and after transfer to homes in the community. A.
Participation in Meaningful Activity
Meaningful activity included any leisure, personal, or practical activity, using equipment, work/education, or interaction with someone else (clear or unclear social with any contact) and excluded no activity, just walking, or in seclusion. The measure is therefore closely comparable with Òengagement,Óas deÞned in other studies. Interobserver agreement (R) for this variable was 92% and was 0.70. In the institutions, there was usually absolutely nothing to do except sit, walk about, or watch television. A few participants, on a few occasions, attended therapy or day care sessions but generally they were excluded from these because of their behavior. Participants had average levels of participation in meaningful activity of 14% (range 4Ð26%).This was largely made up of leisure (average 4%, range 0Ð12%;R = 99%; = 0.78), personal (average 6%, range 3Ð9%;R = 97%; = 0.71), and practical activity (average 3%, range 0Ð8%;R = 97%; = 0.63). Using equipment (R = 100%; = 0.77) was observed at a negligible level and work/education was not observed at all. All participants showed an increase in the overall level of participation in meaningful activity after transfer to staffed houses. On transfer, individuals increased their level of participation by between a third and over 6 times their average baseline level. Taking the immediate pre- and posttransfer data, this was a statistically
FIG. 2. Engagement in meaningful activity and problem behavior before and after transfer. 262
FIG. 2. (Continued) 263
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J. Mansell, P. McGill, and E. Emerson
FIG. 2. (Continued)
signiÞcant increase (t = −4.61, df = 12, p = 0.0005; one-tailed test), The consistency of the improvement across staggered transfer times strengthens the belief that this was a result of the move to staffed houses rather than to the passage of time or general improvement in services. Increased participation (average 36%) was made up of more leisure (average 7%, range 0Ð29%;immediate pre- and posttransfer means not signiÞcantly different, t = −0.60, df = 12, p = 0.279; one-tailed test), more personal (average 11%, range 5Ð24%;t = −4.91, df = 12, p<0.001; one-tailed test), more using equipment (average 2%, range 0Ð8%;t = −3.86, df = 12, p = 0.001; one-tailed test), and more
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FIG. 3. The pattern of WGÕs day before and after transfer.
practical activity (average 10%, range 1Ð38%;t = −4.16, df = 12, p = 0.0005; onetailed test). Work/education was very rarely observed and never for more than 1% of the time. This reßects in part that only one person in the specialized staffed houses attended day programs. This was primarily due to lack of funding, lack of programs (other than traditional Social Education/Adult Training Centres which were considered inappropriate), and unclear agency responsibility for these service users. All but one member of this group, where there is sufÞcient data to judge, showed relatively good maintenance of participation levels over time (the exception is PH, though the level is still well above baseline). Those individuals transferred back to institutions show corresponding declines in participation, as does one of the people (HM) transferred to another staffed house to save money. What this means for an individual is shown by the example in Fig. 3. This presents a picture of the pattern of activity for one person (WG) on the last day observed in institutional care and the Þrst day observed in her new home in the community. In the institution, WG did almost nothing for most of the day (she was engaged in meaningful activity for 77 min of the 10 h and 10 min observed). The three peaks of activity represent breakfast, lunch, and tea, when she ate her meals. In her new home in the community, there was a substantial increase in WGÕs level of participation. WG was engaged in meaningful activity for just under 4 h in the 11-h, 20-min day observed. The main increase in engagement in meaningful activity was in everyday household tasks (cooking, cleaning, laundry, and shopping)Ñ real tasks relevant to WGÕs life in the community.
266 B.
J. Mansell, P. McGill, and E. Emerson Staff Contact
Figure 3 also shows the staff contact received by WG before and after transfer. For people with severe or profound intellectual disabilities, staff contact is especially important. This is because staff provide the help and encouragement that people need to take part in everyday activities. In particular, previous research has suggested that it is the amount of direct practical help which is important rather than general conversation. In the institution, WG received contact from staff at a low level throughout the day (in total amounting to 67 min) but most of this was in the form of general conversationÑconstructi ve help occurred for only 11 min. After moving to the community, she received much higher levels of contact from staff and a much higher proportion of contact was in the form of assistance. Total contact was received for 5 h, 10 min, of which just under half (2 h, 28 min) was in the form of direct, practical assistance. Figure 4 gives a picture of the relationship between staff contact and service user engagement averaged across the three kinds of environmentÑhospital wards, special units, and community housesÑin volved in the evaluation study. Contact was categorized as assistance (R = 89%; = 0.25); other contact, consisting of positive, negative, or neutral contact (R = 94, 99, and 95% respectively; = 0.03, 0.32, and 0.52 respectively); and none (R = 91%, = 0.65). The low kappa values reßect the low occurrence reliability of these codes; occurrence was, however, low, making the data still useful. Most (84Ð90%)other contact was neutralÑtypically conversation to pass the time. Negligible amounts of contact were received from other clients. The hospital wards and special units showed similar, low levels of contact to the study participants (raising the question of what is ÒspecialÓabout special units). For over 90% of the 11-h day observed, people did not receive any contact from staff. This is comparable with other studies of hospitals (e.g., Rawlings, 1985). Staff in the houses provided signiÞcantly more other contact (t = −5.74, df = 12, p < 0.0001; one-tailed test) and assistance (t = −4.06, df = 12, p = 0.001; onetailed test) on transfer from the hospital environments. However, even in the houses, people only received contact for a quarter of the time. This is similar to the levels reported in two staffed houses (29 and 20%) from the Andover demonstration project by Felce et al. (1986b), but given the high stafÞng ratios could be improved. While, in general, studies suggest higher levels of contact in staffed houses (Emerson & Hatton, 1996) outcomes have been very variable. Some studies (e.g., Hughes & Mansell, 1990) have shown levels of contact (in three houses for other service users with intellectual disabilities provided by one of the agencies with whom the SDT worked) as low as those in the hospital (7, 9, and 10%), despite much higher stafÞng levels. This suggests that the problem of low levels of contact may have persisted in ordinary community services, in which case the levels achieved by the specialized staffed houses studied here may be more creditable.
FIG. 4. Engagement in meaningful activity and staff contact in institution wards, special units, and staffed houses.
268
J. Mansell, P. McGill, and E. Emerson
Figure 4 also shows that the increased engagement by people when they moved to houses was not solely due to assisted performance; unassisted engagement also increased signiÞcantly (t = −3.78, df = 12, p = 0.0015; one-tailed test). Unassisted engagement was quite strongly correlated both with assistance (r = 0.2596, p < 0.005) and neutral contact (r = 0.4301, p < 0.0001). Compared with the Andover demonstration project (Felce et al., 1986b), houses in this study, though showing similar levels of staff contact provided rather less of it in the form of assistance (9% compared with 25 and 14% in the two houses Felce studied). These average results conceal considerable variation between individuals and over time. In the hospital wards and special units, the average total contact received by individuals in each condition ranged from 1.6 to 12.7% of observations. After transfer, total contact ranged from 13.2 to 45.5%. The level of contact received by individuals was not signiÞcantly related to their level of adaptive behavior, further reinforcing the importance of staff management variables. Contact in the institutional settings was relatively stable over time, with the exception of MT, whose level of contact increased from 2 to 20% just before transfer. With this exception, however, the hospital wards and special units provided relatively constant (low) levels of contact. In the houses there was much greater variability, indicating how enriched settings provide the potential for change, without necessarily ensuring it. C.
Social Interaction
Taking the whole group across all observations, average social interaction (where the study participant was interacting or attempting to interact and receiving contact from another person) was only 2% (range 0Ð17%;R = 97%, = 0.41). Only in one case did there appear to be a change associated with transfer: SS increased social interaction from an average in baseline of 2% (range 0Ð4%) to 12% on transfer to a specialised staffed house, and this declined to 5% on return to institution. Most people received negligible contact (i.e., less than 0.5%) from other service users (R = 100%, = 0.71). MT, MM, and MS were recorded as being contacted by other service users for 1% (approximately 7 min) in the 11-h day on only one of the datapoints; one person (BF) received this level of contact on two datapoints, and one other (FP) received 26 min in 11 h on one datapoint. This reßects the degree of handicap of the people served and suggests that, for this group at least, any suggestion that large (or small) residential facilities currently provide important social relationships with other people with intellectual disabilities is mistaken. D.
Challenging Behavior
Challenging behavior was separated into minor and major categories. Minor problem behavior was made up of stereotyped behaviors, which usually occurred
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269
for a large part of the time. Interobserver agreement (R) for minor problem behaviors was 91% and was 0.73. Major problem behaviors were self-injury, aggression to people, damage to property, and other idiosyncratic problems. Interobserver agreement (R) for major problem behaviors averaged 97% (range 90 to 100%) and averaged 0.40 (range 0.01 to 0.92). Low kappa values reßect poor occurrence reliability for some of the least frequent behaviors. Although the average level of minor problem behavior was lower after transfer (falling from 29 to 16%) there was much variability within and between individuals, and some individuals had increasing or decreasing minor problem behavior before transfer (see Fig. 2). The change immediately before and after transfer is not statistically signiÞcant (t = 1.45, df = 12, p = 0.085; one-tailed test). Two people showed clear increase after transfer (HM and PH); two people (MS and MT) showed an increase throughout the study; two people (JK and MM) showed no change; four people (BF, GF, SM, and FP) showed a decline throughout the study which was maintained after transfer; and three people (SS, WG, and ST) showed a clear reduction after transfer. Eleven of the 13 participants show negative correlations between scores at each datapoint for participation in meaningful activity and self-stimulatory behavior of between r = −0.0189 and r = −0.9914, although only in two cases (ST and WG) is this statistically signiÞcant (p < 0.01). Despite their reputation, the individuals in this study only showed major problem behaviors in sporadic outbursts during observation. The data for major problem behavior should, therefore, be interpreted with caution because the selection of days for observation may not have included enough days to accurately sample major problem behavior. It is also the case that the observational measure used did not differentiate more from less intense outbursts. There is similar variability in the major problem behavior data. The average level fell after transfer (from 9 to 4%) but the change between immediate pre- and posttransfer scores is not signiÞcant (t = 1.27, df = 12, p = 0.114; one-tailed test). Two people (MS and SM) showed clear increases after transfer, two people (HM and SS) showed no change, three people (BF, GF, and PH) showed a reduction during baseline which continued after transfer, and one person (WG) showed a reduction in baseline which continued after transfer but increased on readmission to institution and again on return to a staffed house; Þve people showed a reduction on transfer (ST, JK, MM, MT, and FP). Taken together these Þndings suggest that 7 of the 13 people were better off, or no worse, after transfer in both categories of problem behavior; 3 had more minor problem behavior, 2 had more major problem behavior, and 1 person increased in both categories. Figure 5 shows the amount of staff contact observed in the three kinds of setting and its disposition in relation to major problem behavior. In each setting, major problem behavior occurred for only a small proportion of observations. In the hospitals and special units, it occurred with about 13% of the contact observed; in
FIG. 5. Major problem behavior and staff contact in institution wards, special units, and staffed houses.
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271
the houses 8% of the contact occurred with major problem behavior. It is perhaps not surprising that most of the major problem behavior occurred when there was no staff contact, since this may reßect the opportunity to behave in this way and the avoidance of the person by staff during bouts of dangerous behavior. In the houses, the provision of assistance solely when major problem behavior was not observed probably reßects the care given in setting-up these placements to manage the level of demand placed upon the individual concerned, since this was often an important trigger for disturbed behavior. E.
Skills
Increased engagement in meaningful activity means that people are living fuller, richer lives in spite of the severity of their intellectual disability and the continued presence of behavior problems. One would expect that increased engagement would lead to an increase in skills, and this is indeed what seems to have happened. Where possible, Part One of the Adaptive Behavior Scale (Nihira, Foster, Shellhaas, & Leland, 1974), which had been used to describe the abilities of people participating in the evaluation study, was repeated at the end of the study. Figure 6 shows the gains and losses made by the 11 individuals concerned (one had died, and one was terminally ill). Seven of the eight people in the study group who were still in specialized staffed houses showed substantial net gains in their score on the Adaptive Behavior Scale (maximum score, 279), ranging from 21 (MS) to 58 (WG) points (average 40). GF, who was the highest scoring individual at the beginning of the study, showed a substantial net drop in score (−28 points). The three people who had been
FIG. 6. Changes in adaptive behavior after transfer.
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J. Mansell, P. McGill, and E. Emerson
transferred to other environments (SS back to a local hospital and HM and ST to a larger staffed house) showed changes of +15, 3, and −15, respectively. F.
Effects on Cotenants
Special Development Team services were characterized by attempts to avoid congregating people with challenging behavior, even though this was not always achieved. Critics of this strategy point to its potential negative impact of living with a person with serious challenging behavior on cotenants. While no information on this aspect of user outcomes was collected as part of the formal evaluation study, some informal observations may be made as a result of information collected from internal monitoring systems. In general, the possible picture of cotenants living a vulnerable, frightened existence was not found. There were very few reports of cotenants being attacked or otherwise threatened. Undoubtedly, there have been times when they were living in a fairly disturbed and disturbing environment. However, their sometimes higher levels of ability, or prior planning, often allowed them to escape from such situations to conditions of greater privacy within or outside the house. More positively, there was also anecdotal evidence to suggest that cotenants beneÞted from the higher stafÞng levels, structured programming, and external professional involvement associated with the projects. This is, however, based on very limited information. The effects of challenging behavior on other residents should be a priority for further research. Such concerns are rarely raised regarding services which congregate people with seriously challenging behaviors together in one setting. If people with intellectual disabilities have the right not to live with others who show challenging behavior then this right must be extended to all people with intellectual disabilities including those with challenging behaviors themselves. Thus, the ethical issue is one of whether it is appropriate for anyone to live and work in close proximity to someone with seriously challenging behaviors. Congregating together people with challenging behavior does not provide a solution to this problem. Service providers have, of course, a duty of care to ensure that all those receiving services are protected from harm. This duty draws attention to the importance of giving careful consideration to the risks presented to others by an individualÕs behavior. This applies whether the ÒothersÓdisplay challenging behavior themselves or not.
IV.
INDIVIDUAL ILLUSTRATIONS OF PLACEMENT SUCCESS AND FAILURE
The overall evaluation of staffed houses set up with the help of the Special Development Team showed a substantial improvement over the institutions they replaced. But within this picture there was important variation between individuals.
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273
This was examined in a study by McGill and Mansell (1995). The three cases presented in this section have been chosen because they illustrate particular issues. The Þrst is a service which has experienced considerable success and which has built on its strengths. The second is a placement which was closed to save money, the individual concerned being transferred to a larger staffed house in which most residents had challenging behavior. The third is a failed placement, from which the person was readmitted to institutional care, followed by successful reestablishment of residence in the community. A.
“Sue Thompson”
ÒSueThompsonÓ(not her real name; SM in the evaluation study) lived with her family until she was 6. She had profound intellectual disabilities and developed destructive behavior which presented her family with major problems. In 1960, Sue was admitted to a large intellectual disability hospital, where she spent the next 28 years of her life. In 1980 the Þrst author, while visiting the hospital, was shown Sue as an example of the kind of person who it would not be possible to care for in community services: at that time, she spent most of her day sitting in the middle of the ward day room, naked, in a puddle of her own urine, under a blanket. She was said to resist aggressively any attempt to change this arrangement. Her challenging behaviors included stereotyped behavior (twiddling string, jumping up and down on the spot, and tooth grinding), aggression (biting, pulling hair, and scratching), damage to property (ripping sheets and clothes and throwing cups and plates), stripping, noncompliance, handling, eating and smearing feces, and insisting on remaining under a table and/or a blanket. The initial assessment records of the SDT show that there was no psychological behavior-management program at the start of the project. SueÕs challenging behavior was not even recorded unless it was exceptionally serious. Behavior management was attempted through medication: Sue was prescribed chloral hydrate (sedative), thioridazine (antipsychotic), and tetrabenazene (antiparkinsonian). SueÕs reputation, and an initial dispute over agency responsibility, caused delays in the plans for her resettlement. As a result, when the hospital closed, Sue spent time in three interim placements while her community service was developed. The last and longest of these was a special unit for people with challenging behavior on the periphery of another large intellectual disability hospital. In 1990, she moved into her new community service. This was a four-bedroom detached house in a residential area which she shared with three other people who had mild or moderate intellectual disabilities and who did not have serious challenging behavior. Data collected in the evaluation study (Fig. 7) show SueÕs lifestyle and behavior across three different settings: two datapoints 5 months apart in her original hospital, one a year later in the special unit on the hospital campus, and two a year and 2 years later in the specialized staffed house. In the hospital, Sue received very little contact from staff (an average of 3.5%, or about 25 min in an 11-h
274
J. Mansell, P. McGill, and E. Emerson
FIG. 7. ÒSueThompsonÓ:behavior and contact in three settings.
day). In the special unit the total contact increased to 6% (about 45 min). Only in the specialized staffed house did contact markedly increase, to an average of 46%. A signiÞcant proportion of this staff contact consisted of assistance to Sue to participate in meaningful activities. While such assistance occurred for just over 1 and 2% respectively of the time in the two institutional settings, it averaged 25% in her community placement. Given the severity of her disabilities, there is little doubt that this increasing level of assistance was responsible for SueÕs increasing participation in meaningful activity (such as housework, leisure activities, socializing, and so on) from 3 and 7% in her previous settings to an average of 20% in the staffed house. There was a dramatic decrease in the percentage of the day Sue showed challenging behavior on transfer from hospital to the special unit. This overall result was, however, mainly due to a very marked reduction in sitting under a blanket. After moving to the staffed house, SueÕs challenging behavior increased from 15% in the special unit to an average of 23% in the staffed house, there being small but important increases in aggressive and noncompliant behavior. These increases probably reßect higher levels of social contact and ÒdemandÓin the staffed house. The evidence of the second observation point in the staffed house suggests that these increases may have stabilized while contact, assistance, and participation continue to increase. The character of SueÕs aggression is also much less unpleasant. While she still grabs staff and pulls their hair, attention to her toileting and physical needs has led to her no longer wearing incontinence pads and to her using
INNOVATIVE RESIDENTIAL SERVICES
275
the toilet appropriately, with help. As a result, fecal smearing now happens very rarely. What was responsible for obtaining these marked differences in SueÕs behavior over 3 years? The simplistic suggestion that it was due to moving to a house is not supported because the special unit was actually located in a house on the periphery of the hospital and was set up to function as independently as possible from the main hospital campus. It was as close to other domestic (albeit rural) houses as it was to the main hospital, had its own entrance, and was furnished much more like an ordinary home than the hospitalÕs wards. Nor was the change due to increased use of medication. SueÕs psychotropic medication reduced after transfer; she was still prescribed thioridazine and orphenadrine, but chloral hydrate and droperidol were replaced by diazepam. Nor can these results simply be explained by the staff ratio of the different services. The hospital wards had many service users looked after by a few staff, but the special unit had a 1:1 ratio of staff allocated to service users. This was in fact slightly higher than the ratio in the staffed house. The ratios observed (rather than allocated) were rather different: in the hospital at the Þrst observation point the average numbers of staff and service users observed in the same room with Sue were 2.6 and 9.8 respectively (a ratio of 1:3.8); at the second observation point, Sue spent 69% of the time on her own and without staff present. Although the special unit had much higher staff ratios, the observed ratio was 1:3.6, similar to the Þrst observation in the hospital, and Sue was in a room on her own and without staff for 59% of the time. In the staffed house staff were virtually always present and the observed ratio was 1:1. The difference in observed staff ratio between the special unit and the staffed house may partly reßect the service user groupings in these services. In the special unit, Sue lived with three other people, all of whom had major challenging behaviors. An associated study (Emerson, Beasley, Offord, & Mansell, 1992) of the special unit showed that disproportionate amounts of contact went to those other residents who displayed higher rates of challenging behavior. In the staffed house SueÕs three coresidents did not present similar levels of challenging behavior and did not require as much help from staff. It is also likely that the differences in observed ratios and in results reßect differences in the model of care in these three settings. In the hospital, especially in its closing months, the model of care was overwhelmingly custodialÑstaf f were simply engaged in a holding operation. Low levels of interaction by staff with service users were the norm and individualized planning procedures were rudimentary and ineffective. SueÕs ÒtimetableÓin the hospital (Table II), based on information collected when she was Þrst referred to the Team) shows that there were virtually no activities planned for her. In the special unit, the model of care was focused more on treatment, since one of the unitÕs central aims was to reduce service usersÕchallenging behavior. With Sue,
276
J. Mansell, P. McGill, and E. Emerson TABLE II ÒSUE THOMPSONÓ:WEEKLY TIMETABLE BEFORE TRANSFER Morning
Afternoon
Evening
Monday Tuesday Wednesday Thursday
On ward On ward On ward On ward
On ward On ward On ward On ward
Friday Saturday Sunday
On ward On ward On ward
On ward On ward On ward
On ward On ward On ward Enjoys ÒTop of the PopsÓ On ward On ward On ward
the special unit was partly successful in doing so but without being able to replace that behavior with anything more meaningful. The treatment emphasis also may explain the very low rates of contact between staff and Sue (given the high staff ratio)Ñtreatment in a medical setting is traditionally administered in short bursts. For example, one of the unitÕs approaches to Sue was to offer her an opportunity to participate in an activity every half an hour. Most activities, however, were very brief so that in between these opportunities Sue would be largely left to her own devices. In the community service the model of care was described as Òactive supportÓ (see above)Ñthe organization of the environment and the provision of assistance to increase individual participation in an ordinary lifestyle. This involved giving attention to what the individual person would be doing throughout the day (not just at particular moments), the kind and amount of support they would need to do it (including which staff will be doing what, when, and with whom), and the collection of evidence about what happenedÑin what activities, for example, did the person participate throughout the day? Table III shows a small portion of the planning for a typical day. Without this planning and structure people with severe or profound intellectual disabilities will not be able to do very much and, when they display challenging behavior, there will be nothing to which staff can redirect them (one of the primary staff tasks is ÒwaitingÓfor challenging behavior to occur). In the early days of her community placement a deliberately ÒrelaxedÓregime was adopted because placement staff felt, despite advice from the Team, that this was needed. However, this approach was associated with difÞculties in managing SueÕs behavior. As structure (a balanced dayÕs activities, clear guidelines for staff on how to work with Sue, advance planning, and recording of participation and behavior) were added in, SueÕs behavior became more manageable and her participation in meaningful activity increased.
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TABLE III ÒSUE THOMPSONÓ:PART OF DAILY PLAN AFTER TRANSFERa 8:00 A.M.
8:30 A.M.
Medication BathÑSue to wash herself, Toilet wash hair (hoh)
8:40 A.M.
9:00 A.M.
Dry self (sa)
Clean teeth, brush hair (hoh); apply perfume/ make-up (hoh)
9:10 A.M.
9:30 A.M.
Choose cereal Staff and toast change topping (sa); prepare and Wash up (ta) eat breakfast (ta)
Toilet a Abbreviations: hoh = hand-over-hand assistance provided; sa = staff assistance provided; and ta = preexisting task analysis used.
B.
“Howard Monk”
The second example, ÒHowardÓ(not his real name; HM in the main study) had also lived in an intellectual disability hospital for over 20 years, since 1967, when he was 9 years old. Like Sue, he had a profound intellectual disability. Howard presented a wide range of challenging behaviors, mainly involving damage to property, including rummaging in garbage bins, overturning furniture, breaking windows, sweeping objects off shelves or tables, and breaking property or objects. He had also hit, kicked, and head-butted people. He had several stereotyped behaviors, made inappropriate noises, and masturbated in public. Howard also had no psychological treatment for his challenging behavior at the outset of this project. He was prescribed medication for behavior-management purposes (thioridazine). Planning of HowardÕs new service proceeded fairly smoothly against a background of increasing pressure on the local service agency to resettle its ÒownÓ residents from the soon-to-close hospital. The service was developing new homes for over 60 people and, while fairly well resourced professionally, was Þnding its management capability stretched. In a compromise to the preferred plan (to save money) Howard was found a three-bedroom house to share with one other man (also an SDT client) who presented similar levels of challenging behavior and was as heavily disabled as Howard. This staffed house opened in mid-1988. The service agency was able to appoint relatively experienced senior staff with a strong commitment to community living. From the outset, however, problems arose. Despite the local and external professional support that was available, the placementÕs senior staff preferred to take their own counsel. As a result, there was considerable conßict between placement staff and professional workers. The latter believed that the placement was taking too laissez-faire an approach and they were particularly concerned about the placementÕs rejection of well-established
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FIG. 8. ÒHoward MonkÓ:placement performance over time.
approaches to the management of challenging behavior. Placement staff rejected the advice offered as too behavioral and prescriptive, opting instead for methods similar to Ògentle teachingÓ and a strong emphasis on respecting service user choice. Attempts to resolve these conßicts were initially unsuccessful, as the agencyÕs senior managers were not able to provide placement staff with clear expectations or monitor their achievement. Data from the TeamÕs records show that after an initial improvement in important areas of placement activity a steady decline set in (Fig. 8). Although it eventually proved possible to establish better working relationships, staff turnover in this period was highÑmost staff had left by the end of the 1st year and most of their replacements had left after another 6 months. Incidents of challenging behavior became more serious as the service relied more on new or temporary staff. Management arrangements changed to reßect national community care policy developments and the managers of the new agency felt that the existing placement was too expensive, especially given its relatively poor performance. Howard (and the other man) were consequently moved to a larger, though still local, setting designed to congregate service users with challenging behavior. The results obtained from the evaluation study are shown in (Fig. 9). In the hospital, HowardÕs level of participation in meaningful activity increased and his level of challenging behavior decreased over observation points. Most of the activity was leisure (typically the simple manipulation of preschool toys such as an Òactivity centreÓor teddy bear) and most of the challenging behavior was stereotypy. Levels of contact from staff were very low, with negligible levels of assistance. On transfer to the staffed house the overall level of contact increased markedly but
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FIG. 9. ÒHoward MonkÓ:behavior and contact in three settings.
most of this was neutral rather than assistance. This reßected the staff practice of asking Howard whether he wanted to do something and taking no clear response to mean he was choosing not to take part, repeating the request a few minutes later. HowardÕs level of participation in meaningful activity fell slightly and challenging behavior (again mainly stereotypy) more than doubled. At the following observation point participation increased and stereotyped behavior fell, but the observer reported that the participation was very simple manipulation of a guitar prompted by staff, which the observer felt might have been intended to affect the results of the study. After transfer to the large staffed house for people, all of whom have challenging behavior, HowardÕs level of participation was halved (nearly as low as at the beginning of the study) and challenging behavior had also fallen markedly. Several lessons can be drawn from this experience. First, although the staffed house was part of a larger organizational system, the staff had great autonomy: as the Special Development Team reported to the agency at the end of their involvement: the changes in the service management structure meant that there was little or no real management time accorded to this placement. Therefore the team leader and deputy were Ôleftto get on with itÕas best they could. In the absence of formal management and organisational guidance they took on the responsibility for deciding the direction of the placement.
While autonomy is generally thought to be a quality-promoting characteristic of services (cf. King, Raynes, & Tizard, 1971), it should not mean creating a vacuum of management or leadership, lest staff practices drift away from the goals of the service (Mansell, McGill, & Emerson, 1994b). Staffed houses for people with challenging behavior probably need a greater share of management time and
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leadership. Without such support, community houses will depend too much on the quality of house staff, who, in any case, may well move on relatively quickly. Second, HowardÕs experience illustrates the importance of correctly interpreting prevailing philosophy and matching the values and goals enshrined in it with a practical technology for achieving them. The observersÕinterpretation of the results in the staffed house was that staff had understood the principle of normalization as meaning primarily that Howard must be offered choices to do valued activities. In practice, this was operationalized as making complex verbal requests, even though Howard had almost no receptive or expressive language, and deemphasising ordinary household activities as sources of possible service user involvement. The net result was that staff spent a lot of time asking and cajoling him, but since Howard usually did not respond or became disturbed, staff eventually did much of the available activity themselves. This is a misunderstanding of the principle of normalization; choice is only one of a number of important outcomes which exist in tension with each other (OÕBrien,1987). It is also a misunderstanding of the nature of choice; as Mansell et al. (1987, p. 200) point out: ÔChoiceÕ is a loosely used term in this context: better to distinguish between different conditions of choosing. We say that someone chooses to do one activity rather than another when they can do both (they have the skills, resources and time and they control access to each option). . .For people who have difÞcultyexpressing their preferences, whose range of experience is limited, and whose ability to control their environment is severely impaired, failure to create opportunities for participation is just as ÔcontrollingÕas setting up only one option. It ensures that people can only do nothing. The goal should therefore be to Þnd ways of enabling people to express their preferences, to ensure that they routinely experience a wide range of different circumstances and to arrange their environment so they can control it. Only as these conditions are fulÞlledcan one say that people are in some sense making informed choices.
Finally, this example shows that the survival of relatively expensive and sophisticated services for people with very special needs partly depends on political understanding and commitment. It is largely the responsibility of the service to protect itself from threat by making sure that the reasons for high costs are understood, providing ÒgoodnewsÓabout the placement, and, by good management, avoiding Òbadnews,Ósuch as complaints from the public. Despite local concern among consumer groups about the removal of Howard from his home to a larger staffed house to save money, the poor results achieved effectively neutralized this source of local support and advocacy. C.
“Wendy Green”
The third example, ÒWendy GreenÓ(not her real name; WG in the main study) was born in 1955 and admitted to long-term hospital care in 1961. Wendy also had profound intellectual disabilities. Like Sue and Howard, Wendy had a wide range of serious challenging behaviors including stereotypy, wrist and hand-biting,
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FIG. 10. ÒWendy GreenÓ:placement performance over time.
aggression, fecal smearing, tearing clothing, loud screaming, stripping, vaginal digging, and pica. In the hospital, Wendy typically spent up to a quarter of her day roaming unsupervised around the hospital grounds, in all weather. Typically, she would try to gain entry to ward kitchens where she would gulp tea or coffee (of whatever temperature) until stopped. Some staff treated this as a major problem and would eject her from their ward; others tolerated her visits and Wendy was a well-known ÒcharacterÓin the hospital. There is no record of psychological treatment for WendyÕs behavior problems, which were treated with pericyazine. When the hospital closed, Wendy moved to her own apartment in a house in which one of the other ßats was also occupied by people with intellectual disabilitiesÑthe staff team being shared between the two ßats. At Þrst, this service was very successful. In the Þrst 12 weeks of its operation, WendyÕs participation in household and community activities showed a steady increase (Fig. 10) and data collected for the evaluation study a month after her move (Fig. 11) showed that Wendy was receiving over 4 times more contact from staff than when in the hospital, including 11 times more assistance. Her participation in meaningful activity had tripled, and challenging behavior was at a third of its previous level (mainly reductions in stereotyped behavior, pica, and stripping). However, as staff turnover began WendyÕs behavior began to deteriorate. After a year the Special Development Team reported the following: . . . the absence of a house leader {for four months} has meant that all the . . . training input during the Þrst year of the service has been effectively lost . . . there are now none of the original support workers in post who may have been relied upon to maintain consistent service delivery . . . the extensive use of agency staff is necessary simply to maintain stafÞng levels . . . recruitment is a permanent feature of management time.
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FIG. 11. ÒWendy GreenÓ:behavior and contact in three settings.
Wendy became very noisy and many complaints were made by neighbors. Following psychiatric assessment she was moved to a private psychiatric hospital and then to a private residential home. Figure 11 shows that her level of participation was lower than in the staffed house, but not as low as in the hospital, and there was a very small increase in challenging behavior. Staff contact declined markedly. As part of a wider project with the whole service agency (Mansell et al., 1994a), designed to address problems of placement breakdown and the lack of capacity in the system to serve people with challenging behavior, a new staffed house placement was set up for Wendy and she moved back in 1991. With a new staff team trained in the model of care, the pattern of staff contact returned to that of her Þrst placement and participation increased to over 40% of the day. WendyÕs case illustrates the importance of the wider service system when setting up specialized staffed houses for people with highly individual needs. A specialized staffed house is a complex arrangement of individual components which make up the intervention package; from details of individual ways of working with the individual (ways of communicating, kinds of help the person needs, and individual programmes) to policies, stafÞng patterns, and resources. Where a person has serious challenging behavior the risk of tinkering with these carefully planned arrangements is greater. Where the service agency does not really recognize this and does not practice caution in its dealing with other staffed houses, it is not likely to either recognize or understand the importance of decay in the specialized setting. It may, therefore, not notice or care if posts are held vacant to save money if staff practices cease and if monitoring becomes ineffective. The agency is also less likely in these circumstances to value the skills and knowledge of staff in the specialized staffed house and to use them elsewhere in the service; and it will not
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have the skills and knowledge in other staffed houses to help out in times of crisis. When the specialized staffed house faces particular problems it may therefore be already weakened and the agency may not have the capacity to support it: the placement breaks down. Specialized services for people with challenging behavior therefore need to be embedded in service systems which are capable of sustaining them, in which the gap between specialized practice and that in the main stream of intellectual disability services is not too great.
V. A.
SUMMARY AND CONCLUSIONS
Main Findings
Although such a small, very disabled group may not be representative of people with serious problem behavior elsewhere, the individuals served in the Special Development Team project were selected by local service agencies as presenting the greatest challenge to resettlement. Since the project covered a mixed rural and urban area of approximately 3.7 million total population, the results are likely to be broadly applicable to other areas. The results of this very detailed, long-term study do therefore make a signiÞcant contribution to the policy question of the relevance of different treatment approaches as hospitals are replaced by alternative services. The results show that it has been possible to set up community-based placements which offer much richer social and material environments than the hospitals they replace. Given the extreme nature of the problems experienced by this client group and the long history of failure by services to do more than provide custodial care, this is a signiÞcant achievement. Where placement breakdowns have occurred this appears to have been due to failure to keep all the elements of the individual package of care in place. In terms of their participation in meaningful activity, the individuals included in the evaluation study experienced signiÞcant improvement on transfer from institutions to staffed houses in the community. Despite some evidence of decay, participation has remained higher than in institutions. Increased participation has, in general, been matched by growth in the competence of individuals. For most people in the evaluation study, improved participation was achieved without increase in the kind of major problem behavior which had led to their exclusion from ÒmainstreamÓintellectual disability services in the Þrst instance. The new services had not set out with the expectation that they would necessarily reduce problem behavior (though they had of course used their best efforts) because of the intractability of some of the problems and the difÞculty of sustaining sufÞciently skilled staff performance given local conditions and shortages of professional specialists. To have helped many people improve their participation
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in community-based settings without worsening of their challenging behavior or placement breakdown is therefore a very positive outcome. The results of the Special Development Team project should therefore give encouragement to decision makers to select well-organised placements in the community, rather than institutions, for people with severe and profound intellectual disabilities and challenging behavior. The evidence of this project suggests that even specialist institutional provision, including hospital-based housing, provides a very poor quality of life for clients, despite the resources which have been invested in it. One way of summarizing the changes observed in this project is in terms of added value: on average the houses had just over double (2.2 times) the staff:client ratio of the hospitals and special units, but they delivered 3.4 times the staff contact and 4.5 times the assistance to the individuals served. They were therefore able to use the greater resources they had more efÞciently, and this had greater effectiveness in terms of client participation in meaningful activity without overall increases in problem behavior. The results of this study are consistent with recent American research on similarly organized services (Horner et al., 1996). In the present policy context in England, the implication is that proponents of institutionalization as the Þrst choice option for people with severe or profound intellectual disability and serious problem behavior now need to produce evidence that these services can achieve comparable outcomes. The results of this study have shaped new government guidance (Department of Health, 1993) which identiÞes the improvement of community services to meet the needs of people with problem behavior as a major goal and accepts the use of institutions only as a stop-gap while this is being achieved. However, this project also illustrates just how difÞcult it can be to implement new approaches in service delivery. The problems encountered provide important information about the context in which specialized community-based services are developed and the tasks facing decision makers and innovators. The remainder of this section discusses these problems in four clusters, concerning poor performance of residential services, the relationship between specialist and generic services, pressures due to the deinstitutionalization process, and pressures due to costreduction programs. B.
Poor Performance of Residential Services
The good results achieved in this project depended on highly individualized planning and on placements which used an Òactive supportÓmodel of care. This involved the careful planning of activities, the structured deployment of staff, the implementation of agreed and detailed plans for the promotion of activity and the management of challenging behavior, and the keeping of careful records about the success of the strategies being used. However, within the services set up with the help of the Special Development Team, there was considerable room for improvement in the extent to which this model of care was put into practice.
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Poor performance was most commonly manifested in two ways: clients continuing to display unmanaged and poorly understood challenging behavior which was potentially dangerous to themselves, others or their environment; and clients, whether or not they were displaying challenging behavior, spending very little of their time in meaningful activity. In the former situation there was, aside from the risks to everyone involved, considerable danger of the placement breaking down. In the latter, the client might as well have still been in an institution for all the impact made by living in the community. In addressing these issues, the Team often found itself attending to the following: 1. The development of procedures that enabled staff to organize themselves to support client participation in meaningful, preferred activities. Staff often had great difÞculty thinking of what they might be doing with clients and typically did not give enough attention to the organizational procedures necessary to ensure that things actually happened when they were supposed to happen. Individual planning and shift planning procedures were most useful here as ways of helping the staff team to develop a model of care focused on Ôactive supportÕ 2. The training of staff in supporting clients to participate in activities which maximized engagement and minimized challenging behavior. As the years progressed this training increasingly became Òon-the-job,Óowing to the difÞculties of developing practical skills through classroom instruction and the great advantages of being able to model performance and give immediate feedback (Anderson, 1987) 3. The encouragement of staff and their managers to engage in team-building and mutual support activities, which improved staff consistency and morale and helped to maintain a clear focus on the planned tackling of client issues over time. In particular the Team stressed the importance of regular clientfocused meetings which involve the whole staff group and the availability of regular staff supervision to provide some of the emotional support undoubtedly required by people working in sometimes very difÞcult and frightening circumstances. 4. The development of clear written contracts (as well as more informal agreements) between the SDT and the referring agency as a means of clarifying the nature of the task involved in supporting such services. Such agreements emphasized the importance of the necessary local infrastructure (e.g., input from local professionals such as psychologists) and an active approach to managing the service which focused on the quality of the outcomes being achieved by and for clients. None of these were instant solutions. They provided, however, ways of working with the placement which, deliberately, did not focus on the client as being the problem but rather attempted to support the development of a more competent service.
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An American visitor to one of the SDT-supported services commented on how tolerant it was of challenging behavior, saying that, in the services with which he was involved, there was much more intensive behavioral intervention to attempt to reduce challenging behavior. This was an interesting comment, not least because SDT-supported services generally involved rather more of this kind of intervention than was or is common in British residential services. The TeamÕs approach was, however, inßuenced by its cultural context and focused rather more on the provision of a supportive environment than on the direct treatment of challenging behavior. While, in some circumstances, such an environment, as a side effect, apparently helped to reduce challenging behavior, this was not its primary goal. Rather the primary goal was to support people to be engaged in a more ordinary life. Most services operated on the assumption that this could not wait until challenging behavior had been signiÞcantly reduced as most of the clients had long-lasting, entrenched behaviors unlikely to be overcome very quickly. In conditions of scarcity of staff, combined with difÞcult and stressful work, it is not surprising that high levels of staff turnover were also a problem contributing to poor performance in many services with which the Team worked (as is the case more generallyÑsee Baumeister & Zaharia, 1987). This led to particular difÞculties which services had in seeing client behavior in a long-term context. This was manifested in a number of ways. The Team sometimes encountered the situation where a client had made great progress but this was not perceived by the service, even when many of the same staff were in post. Similarly staff were often unaware of progress made or problems occurring in previous settings and, without knowing it, were repeating work previously carried out (Di Terlizzi, 1994). This focus on the ÒnowÓis also potentially problematic when, because staff forget or there has been signiÞcant turnover, no one is aware of why something is done in a particular way. For example, when a successful intervention is found which prevents challenging behavior in a particular context the person may subsequently be seen as not having a problem in that context. The intervention is withdrawn as not being necessary without any awareness of its preventive value and the problem reemerges. In some respects part of the SDT role was to act as the behavioral consciousness of the service, constantly reminding people of why things were done as they were and trying to encourage the taking of a longer term historical perspective. This perspective inevitably leads to a concern with the procedures used for ÒrememberingÓthe lives of people who cannot remember them for themselves. Since services cannot rely on the service user to tell them about the past and, partly because of staff turnover, cannot count on the memory of the staff, they need to provide a prosthetic memory through regular information collection. This information (e.g., about intervention programs, challenging behaviors, problems, and successes) needs to be available in a form which aids rapid identiÞcation of trends over time and which allows for the early detection of problems. Record
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keeping, while undoubtedly often a boring chore, may need to assume a new importance as a method of helping to achieve personal and cultural continuity. C.
Relationship between Specialist and Generic Services
Relationships between specialist and generic services for people with intellectual disabilities and challenging behavior are often problematic because incentives exist for generic services to pass individuals on permanently (Newman & Emerson, 1991). In this project, attempts had been made to avoid this. Financial support was contingent on maintaining people locally; the specialized services were set up within the local territory and were part of the local service system. Nevertheless, there was wide variation in the degree and type of involvement of local managers. In a few instances, the process of individual service planning was carried out by local professionals and service workers without sufÞcient involvement of senior decision makers. When the plan was produced, key members of the agency were not properly prepared for its contents and costs and were not predisposed to react positively. In some cases, initial contact by the local agency through making referrals was never translated into serious commitment to develop services, and time was wasted on plans which, in retrospect, never had much chance of implementation. Some plans probably involved too many compromises on signiÞcant issues; for example, the eventual placement groupings involved much more congregation of people with severe intellectual disabilities and challenging behavior than had originally been envisaged, with consequent difÞculties once placements were established. At the other extreme, some agencies saw the project as essentially about setting up services and tended to ignore the need for continuing support and monitoring, as in HMÕs service described above. The TeamÕs response to these problems developed, over time, in two directions. First, the Team itself was clearer about what it expected from local agencies wishing to collaborate and was less inclined to adopt speculative projects. It therefore used criteria relating to the ÒreadinessÓand ÒcapabilityÓof local agencies to focus its resources (Beckhard & Harris, 1987). Second, the Team made more use of contracts with local agencies to manage the process of setting up new services. This was almost entirely new in service development in Britain at the time, but presaged the widespread adoption of contracts after the 1989 community care reforms (Department of Health, 1989a). However, although detailed speciÞcation of mutual obligations and expectations helped make the relationship productive, it did not address the gap between the sophistication of the individual service plans and the reality found in ordinary services for people with intellectual disabilities. The overall context was of a shortage of skilled support staff and professionals. Therefore the Team was trying to establish relatively sophisticated services against a background in which understanding of, and support for, what was being
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attempted was at best uncertain. The working methods (such as Òactive supportÓ) which the Team wanted to introduce were new to staff and managers in local services. It was therefore difÞcult to recruit staff with experience of them. More than this, staff in other services and managers of the local agency were often unconvinced of the value of such an intensively organized approach, which they sometimes saw as in conßict with their interpretation of normalization. Although staff in the specialized service could be trained, an indifferent or unsupportive local environment made it harder for them to sustain the approach required. In circumstances such as these, where most community services are relatively unskilled, there is a trade-off between adopting greater control over the specialized services (in order to ensure better stafÞng, training, management, and quality) and ensuring their integration in and ownership by the local service system. In this project, the consequence was that most placements were not as sophisticated, in terms of organization of the staff support provided or of behavioral programming, as had been intended at the outset; but in most cases the placements were successfully integrated into the local service system. D.
Pressures Due to the Deinstitutionalization Process
It is important to bear in mind the context within which the Team worked. First, it was an initiative to support the closure of long-stay intellectual disability hospitals. Closure of the hospitals was the overriding policy objective and its imminence lent a degree of urgency to the TeamÕs work, which had both costs and beneÞts. BeneÞts included agency agreement to very innovative service plans which, in less urgent circumstances, may have aroused considerably more controversy. Costs included the need to give pragmatic considerations perhaps too high a priority in the planning and service development process. Second, it is easy to forget how new the SDT and its approach was at the time. The majority of professionals and policy makers believed that a signiÞcant minority of people with intellectual disabilities (including but not only the group with whom the Team worked) would need to remain in hospital or hospital-like arrangements. Most other areas of Britain were less advanced with hospital closure than South East Thames and there were no models (not even from other countries) of how to go about the TeamÕs task. Often, therefore, the SDT was quite literally making it up as it went along. The deÞnition of the task as deinstitutionalization meant that the Team followed the pattern of previous service provision in concentrating on residential care, with the consequence that day service provision was relatively underdeveloped. Similarly, general health care was not given high priority, although there is evidence of extensive unmet need in institutional services (Kerr, Fraser, & Felce, 1996; Livingstone, 1996; Yeates, 1998). The chronological development of services was such that a great many came ÔonstreamÕwithin a short space of time, with several distinct consequences:
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1. The time at which many of the specialized services were established corresponded with the time during which local agencies were rapidly growing in size as they developed new services for the rest of their previously institutionalized populations. This meant not just stretched resources at the local level but more difÞculties in maintaining the proÞle of Team-supported placements and good lines of communication with senior agency staff. 2. There was considerable variation in the quantity of SDT involvement across different placements. Where local staff appeared to be able to get on with the job relatively competently they were inevitably left to do so more than in those placements where explicit demands were being made of the Team. 3. There was also much variation in the nature of the support provided, which was probably largely dependent on the skills and experiences of individual team members. Thus, in some placements, the primary mode of support was direct work with and through placement staff. In other placements a rather more distant, organizational development role was adopted. At the time, this was justiÞed in terms of variation in local conditions but it seems likely that it also served the interests of extremely stretched Team members in allowing them to exercise well-established skills conÞdently and autonomously. The novelty of the TeamÕs approach, coupled with the pressure of time, also meant that, in retrospect, the TeamÕs methods were underdeveloped. InsufÞcient attention was given to the use of ÒclinicalÓassessment strategies. While analog assessment procedures (Iwata et al., 1982) were used in a number of cases the predominant mode of enquiry was participant observation, a Ògetting to know youÓprocess (Brost, Johnson, Wagner, & Deprey, 1982), which resulted in useful qualitative but limited quantitative data. For example, the questions of whether users had vision or hearing impairments and their nature was left largely to a statement of existing perceptions of these problems. Given the known relatively high occurrences of these impairments in people with severe intellectual disabilities (perhaps especially in people who display challenging behavior) (Department of Health, 1993) this was a signiÞcant omission. Relatedly, the information gathered to inform the planning process was insufÞciently standardized so that relatively important information about, for example, the personÕs placement history or the history of treatment approaches used with their challenging behavior was only sometimes available. E.
Pressures Due to Cost Reduction Programs
The people served in this project were selected as having the most challenging needs and they probably represent the most expensive people to serve in any situation (unless simply abandoned to the neglect and abuse of very poor-quality institutional care). The average cost per SDT client of the services established
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was £101,500 at July 1999 levels. These Þgures do not include the extra costs associated with managerial and professional support, day placement, and so on. In the mid- to late 1980s it was possible to argue that such costs were justiÞed almost as a question of moral right. Since the individuals catered for had often been deprived for most of their lives, since their needs were so great, it was entirely appropriate, went the argument, to now spend a lot of money on trying to provide something rather better. As the political context has become much more concerned with cost containment and accountability, this has become a less viable position. It is still possible to argue that services for people with such complex and demanding needs are expensive wherever they are provided (and in practice the costs of special institutional placements are often as high as these services), but there is no doubt that these kinds of community services are, at least sometimes, more expensive than ÒordinaryÓinstitutions. It therefore became increasingly important to show that increased costs were justiÞed by greater effectiveness. This had two implications for the TeamÕs work. First, it devoted considerable attention to both evaluating the performance of the services and to encouraging the development of internal evaluation procedures, which would make decisions about resources rather better informed. Second, the Team was forced to consider whether the resources actually allocated to the services were all now required. In general, all the services set up with the TeamÕs help faced pressures to reduce their costs over time. While there is sometimes scope for reducing costs, this cannot be done arbitrarily. The costs are high principally because of the number of staff required to be on duty at any one time to guarantee the safety of clients and staff with minimum recourse to restrictive methods of managing challenging behavior such as seclusion. While the consequence of a 10% cut in stafÞng in an ordinary staffed house may be a reduction in out-of-house activities for clients, the consequence in a service for someone with signiÞcant challenging behavior may be serious injury to the client, other clients, staff, or members of the public. Unfortunately such services are vulnerable not just to across-the-board cuts but, because they are often the most highly staffed and expensive services, to being asked to take a greater share of any cuts. Since cost containment is probably the most signiÞcant factor inßuencing the behavior of senior managers, they are likely to prefer and reinforce models of supporting people which stress the nonprofessional nature of the ÒcaringÓrole and which do not seek to develop the technical skills of staff through potentially expensive training or the employment of staff with more advanced qualiÞcations. Since managerial contracts and contracts for the provision of services are likely to be time-limited, short-termism is the implicit philosophy. Such a philosophy, of course, runs the risk of falling into the Òsocial trapÓ(Platt, 1973) of creating long-term negative outcomes for clients and others for the sake of short-term Þnancial advantage. It is therefore very important, if
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these services are to survive, that there is understanding and commitment at the highest levels of the agencies concerned. F.
Conclusion
The four clusters of problems described above are not, in themselves, primarily the result of the serious challenging behavior presented by clients of the Special Development Team. They are problems of all residential services for people with intellectual disabilities. Indeed, the outcomes associated with these specialized services, when compared with the rather poorer outcomes typical of communitybased residential services, suggest that these problems have been better handled here than elsewhere. Rather, challenging behavior presents a particular test of how well services are organized and how skilled they are. Services that can respond constructively to challenging behavior are likely to be able to achieve good outcomes for other service users. This project also suggests how service responses to challenging behavior might go beyond a limited concern with an individualÕs behavior, and its relationship to the immediate environment (the traditional concern of applied behavior analysis), to a broader concern with the analysis and design of the service culture. In the terms used by Horner and OÕNeill(1992), the task is to build Òcompetent environments.ÓIt is these environments, rather than just contingency management programs, which represent the necessary Òintervention.ÓThey are consequently complex, multielement interventions which need to be evaluated not just in terms of their effect on challenging behavior but in terms of their effect on the broader lifestyle of clients. Horner and OÕNeillsuggest that competent environments will make challenging behavior irrelevant (the consequences they obtain are there all the time anyway), inefÞcient (there are far easier ways of getting these consequences), and ineffective (they will not now obtain these consequences anyway). Extending the focus of attention from the client to the placement would also not be enough. As research and development moves beyond the Þrst generation of projects, set up under tightly controlled conditions, problems of management and the support of staffed houses become more important (Landesman, 1988; Mansell, 1996). There is a need to work at three levels: the relationship between the individual and their immediate environment, the relationship between how this environment is delivered and how the home is organized; and the relationship between the home and the service system of which it is part (Mansell et al., 1994b). This project still remains relatively unusual in Britain. Further research is needed to examine the possibilities of replication with people with a wider range of characteristics (including autistic spectrum disorders and mental illness in addition to their intellectual disability). In particular, further research needs to identify those characteristics of the organization of staff and the residential setting which deliver therapeutic support to the individual person whatever their particular needs
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(Holburn, 1997). At an organizational level, research is needed which explains the breakdown of residential placements in terms of the lack of these organizational characteristics rather than simply the nature of the clientÕs needs.
ACKNOWLEDGMENTS The authors thank the service users, their families, and the staff with whom the Special Development Team worked; colleagues and former colleagues Sheila Barrett, Fran Beasley, Caroline Bell, Richard Cummings, Michele Di Terlizzi, Cliff Hawkins, David Hughes, Heather Hughes, Christine McCool, Guy Offord, Siobhan OÕRourke, June Stein, and Sandy Toogood; and Audrey Emerton (now Baroness Emerton of Tunbridge Wells and Clerkenwell), who, as the chief ofÞcer leading the development of intellectual disability services in the South East Thames Regional Health Authority, had the vision to ask for new ideas and the courage to put them into practice. The authors acknowledge permission to reproduce material published in the Journal of Mental Health from Carfax, Abingdon, Oxfordshire, UK.
REFERENCES Anderson, S. R. (1987). The management of staff behaviour in residential treatment facilities: A review of training techniques. In Staff training in mental handicap (J. Hogg & P. Mittler, Eds.), pp. 66Ð 124. Croom Helm, Beckenham, UK. Baumeister, A. A., & Zaharia, E. S. (1987). Withdrawal and commitment of basic-care staff in residential programs. In S. Landesman & P. Vietze (Eds.), Living environments and mental retardation (pp. 229Ð267).Washington, DC: American Association on Mental Retardation. Beckhard, R., & Harris, R. T. (1987). Organisational transitions: Managing complex change. Reading, MA: AddisonÐWesley. Bellamy, G. T., Newton, J. S., LeBaron, N. M., & Horner, R. H. (1986). Toward lifestyle accountability in residential services for persons with mental retardation. Eugene, OR: Specialized Training Program. Brost, M., Johnson, T. Z., Wagner, L., & Deprey, R. K. (1982). Getting to know you: One approach to service assessment and planning for individuals with disabilities. Madison, WI: Wisconsin Coalition for Advocacy. Brown, H., & Bailey, R. (1987a). Designing services to meet individual needs. Brighton, UK: Pavilion. Brown, H., & Bailey, R. (1987b). Working with families. Brighton, UK: Pavilion. Brown, H., Bell, C., & Brown, V. (1988). Teaching new skills. Brighton, UK: Pavilion. Brown, H., & Brown, V. (1988). Understanding and responding to difÞcult behaviour. Brighton, UK: Pavilion. Brown, H., & Brown, V. (1989). Building social networks. Brighton, UK: Pavilion. Brown, H., Ferns, P., & Brown, V. (1990). Staff supervision. Brighton, UK: Pavilion. Brown, H., Toogood, A., & Brown, V. (1987). Participation in everyday activities. Brighton, UK: Pavilion. Clare, I. C. H., & Murphy, G. H. (1993). MIETS (Mental Impairment Evaluation and Treatment Service): A service option for people with mild mental handicaps and challenging behaviour and/or psychiatric problems. III: Follow-up of the Þrst six clients to be discharged: Diverse measures of the effectiveness of the service. Mental Handicap Research, 6(1), 70Ð91. Cummings, R., Emerson, E., Barrett, S., McCool, C., Toogood, A., & Hughes, H. (1989). Challenging behaviour and community services. 4. Establishing services. Mental Handicap, 17, 13Ð17.
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Horner, R. H., Close, D. W., Fredericks, H. D. B., OÕNeill,R. E., Albin, R. W., Sprague, J. R., Kennedy, C. H., Flannery, K. B., & HeathÞeld, L. T. (1996). Supported living for people with severe problem behaviors: A demonstration. In D. H. Lehr & F. Brown (Eds.), Persons with disabilities who challenge the system. Baltimore, MD: Paul H. Brookes. Horner, R. H., & OÕNeill,R. (1992). Oregon Community Support: A two year analysis of community support for 11 people with histories of severe problem behaviour. Paper presented at the Association for Behavior Analysis, 18th Annual Convention, 25Ð28May, 1992, San Francisco. Hughes, H., & Mansell, J. (1990). Consultation to Camberwell Health Authority Learning DifÞculties Care Group: Evaluation report. Canterbury: Centre for the Applied Psychology of Social Care. Intagliata, J., & Willer, B. (1982). Reinstitutionalization of mentally retarded persons successfully placed into family-care and group homes. American Journal of Mental DeÞciency, 87(1), 34Ð39. Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., & Richman, G. S. (1982). Toward a functional analysis of self-injury. Analysis and Intervention in Developmental Disabilities, 2, 3Ð20. Jones, E., Perry, J., Lowe, K., Allen, D., Toogood, S., & Felce, D. (1996). Active support: A handbook for planning daily activities and support arrangements for people with learning disabilities. Booklet 1: Overview. Cardiff: Welsh Centre for Learning Disabilities Applied Research Unit. Joyce, T., Mansell, J., & Gray, H. (1989). Evaluating service quality: A comparison of diaries with direct observation. Mental Handicap Research, 2, 38Ð46. Joyce, T. A. (1988). Individual and environmental determinants of normalisation-related outcomes for mentally handicapped people living in hospital, hostels and staffed houses: University of London United Medical and Dental Schools. Kazdin, A. E. (1982). Single case research designs: Methods for clinical and applied settings. New York: Oxford Univ. Press. Kerr, M., Fraser, W., & Felce, D. (1996). Primary health care for people with a learning disability: A keynote review. British Journal of Learning Disabilities, 24, 2Ð8. King, R. D., Raynes, N. V., & Tizard, J. (1971). Patterns of residential care: Sociological studies in institutions for handicapped children, London: Routledge and Kegan Paul. KingÕs Fund Centre. (1980). An ordinary life: Comprehensive locally-based residential services for mentally handicapped people. London: KingÕs Fund Centre. Korman, N., & Glennerster, H. (1990). Hospital closure, Milton Keynes: Open Univ. Press. Landesman, S. (1988). Preventing ÒInstitutionalizationÓin the Community. In M. Janicki, M. W. Krauss, & M. M. Seltzer (Eds.), Community residences for persons with developmental disabilities: Here to stay (pp. 105Ð116).Baltimore, MD: Paul H Brookes. LaVigna, G. W., & Donellan, A. M. (1986). Alternatives to punishment: Solving behavior problems with non-aversive strategies. New York: Irvington. Livingstone, J. (1996). Results of a survey of health care for people with learning disabilities living in residential care homes. ChesterÞeld: Association of Residential Care. Lowe, K., De Paiva, S., & Felce, D. (1993). Effects of a community-based service on adaptive and maladaptive behaviours: A longitudinal study. Journal of Intellectual Disability Research, 37, 3Ð22. Management Advisory Service to the National Health Service. (1989). Review of clinical psychology services. London: Department of Health Manpower Planning Advisory Group. Mansell, J. (1984). The operation of regional special support services for people with mental handicap and behavioural problems. Croydon: South East Thames Regional Health Authority. Mansell, J. (1985). Special services for people with severe mental handicap and severe behaviour problems. Croydon: South East Thames Regional Health Authority. Mansell, J. (1988). Staffed housing for people with mental handicaps: Achieving widespread dissemination. Bexhill/Bristol: South East Thames Regional Health Authority/National Health Service Training Authority.
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Mansell, J. (1989). Evaluation of training in the development of staffed housing for people with mental handicaps. Mental Handicap Research, 2, 137Ð151. Mansell, J. (1994). Specialized group homes for persons with severe or profound mental retardation and serious problem behaviour in England. Research in Developmental Disabilities, 15, 371Ð 388. Mansell, J. (1995). StafÞng and staff performance in services for people with severe or profound learning disability and serious challenging behaviour. Journal of Intellectual Disability Research, 39, 3Ð14. Mansell, J. (1996). Issues in community services in Britain. In J. Mansell & K. Ericsson (Eds.), Deinstitutionalization and community living: Intellectual disability services in Britain, Scandinavia and the USA (pp. 49Ð63).London: Chapman and Hall. Mansell, J. (1998). Active support (Editorial). Tizard Learning Disability Review, 3(2), 4Ð6. Mansell, J., & Ericsson, K. (Eds.). (1996). Deinstitutionalization and community living: Intellectual disability services in Britain, Scandinavia and the USA. London: Chapman and Hall. Mansell, J., Felce, D., de Kock, U., & Jenkins, J. (1982). Increasing purposeful activity of severely and profoundly mentally-handicapped adults. Behaviour Research and Therapy, 20, 593Ð604. Mansell, J., Felce, D., Jenkins, J., de Kock, U., & Toogood, A. (1987). Developing staffed housing for people with mental handicaps. Tunbridge Wells: Costello. Mansell, J., Hughes, H., & McGill, P. (1994a). Maintaining local residential placements. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviour: Designing high-quality services. London: Chapman and Hall. Mansell, J., Jenkins, J., Felce, D., & de Kock, U. (1984). Measuring the activity of severely and profoundly mentally handicapped adults in ordinary housing. Behaviour Research and Therapy, 22(1), 23Ð29. Mansell, J., McGill, P., & Emerson, E. (1994b). Conceptualising service provision. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviour: Designing high-quality services. London: Chapman and Hall. McCool, C., Barrett, S., Emerson, E., Toogood, A., Hughes, H., & Cummings, R. (1989). Challenging behaviour and community services. 5. Structuring staff and client activity. Mental Handicap, 17, 60Ð64. McGill, P., Emerson, E., & Mansell, J. (1994). Individually designed residential provision for people with seriously challenging behaviours. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviour: Designing high-quality services. London: Chapman and Hall. McGill, P., & Mansell, P. (1995). Community placements for people with severe and profound learning disabilities and serious challenging behaviour: Individual illustrations of issues and problems. Journal of Mental Health, 4, 183Ð198. McGill, P., & Toogood, S. (1994). Organising community placements. In E. Emerson, P. McGill & J. Mansell (Eds.), Severe learning disabilities and challenging behaviours: Designing highquality services. London: Chapman and Hall. Murphy, G., Holland, A., Fowler, P., & Reep, J. (1991). MIETS: A service option for people with mild mental handicaps and challenging behaviour or psychiatric problems. 1. Philosophy, service, and service users. Mental Handicap Research, 4(1), 41Ð66. Murphy, G. H., & Clare, I. C. H. (1991). MIETS: A service option for people with mild mental handicaps and challenging behaviour or psychiatric problems. 2 Assessment treatment and outcome for service users and service effectiveness. Mental Handicap Research, 4(2), 180Ð206. Murphy, G. H., Estien, D., & Clare, I. C. H. (1996). Services for people with mild intellectual disabilities and challenging behaviour: Service-user views. Journal of Applied Research in Intellectual Disabilities, 9(3), 256Ð383.
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Newman, I., & Emerson, E. (1991). Specialised treatment units for people with challenging behaviours. Mental Handicap, 19(3), 113Ð119. Newton, J. S., Romer, M., Bellamy, G. T., Horner, R. H., & Boles, S. M. (1988). Neighbourhood Living Project: Tenant Support Operations Manual. Eugene, OR: Center on Human Development. Nihira, K., Foster, R., Shellhaas, M., & Leland, H. (1974). AAMD Adaptive Behavior Scale. Washington, DC: American Association on Mental DeÞciency. OÕBrien,J. (1987). A guide to life-style planning. In G. T. Bellamy & B. Wilcox (Eds.), A comprehensive guide to the activities catalog: An alternative curriculum for youths and adults with severe disabilities (pp. 175Ð189).Baltimore, MD: Paul H. Brookes. Oliver, C., Murphy, G., & Corbett, J. (1987). Self-injurious behaviour in people with mental handicap: A total population study. Journal of Mental DeÞciency Research, 31, 147Ð162. OÕNeill,J., Brown, M., Gordon, W., Schonhorn, R., & Greer, E. (1981). Activity patterns of mentally retarded adults in institutions and communities: A longitudinal study. Applied Research in Mental Retardation, 2, 367Ð379. Pagel, S., & Whitling, C. (1978). Readmission to a state hospital for mentally retarded persons: reasons for community placement failure. Mental Retardation, 16, 25Ð28. Platt, J. (1973). Social traps. American Psychologist, 28(8), 641Ð651. Qureshi, H. (1994). The size of the problem. In E. Emerson, P. McGill, & J. Mansell (Eds.), Severe learning disabilities and challenging behaviour: Designing high-quality services. London: Chapman and Hall. Rawlings, S. A. (1985). Life-styles of severely retarded non-communicating adults in hospitals and small residential homes. British Journal of Social Work, 15, 281Ð293. Raynes, N. (1980). The less youÕve got, the less you get: Functional grouping, a cause for concern. Mental Retardation, 18, 217Ð220. Raynes, N. V., Wright, K., Shiell, A., & Pettipher, C. (1994). The cost and quality of community residential care. London: Fulton. Repp, A. C., & Barton, L. E. (1980). Naturalistic observations of institutionalized retarded persons: A comparison of licensure decisions and behavioral observations. Journal of Applied Behavior Analysis, 13, 333Ð341. Risley, T. R. (1996). Get a life! Positive behavioral intervention for challenging behaviour through life arrangement and life coaching. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support: Including people with difÞcult behavior in the community. Baltimore, MD: Paul H. Brookes. Rusch, R. G., Hall, J. C., & GrifÞn, H. C. (1986). Abuse-provoking characteristics of institutionalized mentally retarded individuals. American Journal of Mental DeÞciency, 90(6), 618Ð624. Saunders, R. R., & Spradlin, J. E. (1991). A supported routines approach to active treatement for enhancing independence, competence and self-worth. Behavioral Residential Treatment, 6(1), 11Ð37. South East Thames Regional Health Authority. (1979). Strategies and guidelines for the development of services for mentally handicapped people. South East Thames Regional Health Authority. South East Thames Regional Health Authority. (1985). Mental handicap special services. South East Thames Regional Health Authority. Special Development Team. (1988). Annual report 1987. Canterbury: CAPSC, Univ. of Kent at Canterbury. Sutter, P. (1980). Environmental variables related to community placement failure in mentally retarded adults. Mental Retardation, 18, 189Ð191. Toogood, A., Emerson, E., Hughes, H., Barrett, S., Cummings, R., & McCool, C. (1988). Challenging behaviour and community services. 3. Planning individualised services. Mental Handicap, 16, 70Ð74.
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Turk, V., & Brown, H. (1993). The sexual abuse of adults with learning disabilities: Results of a two year incidence survey. Mental Handicap Research, 6(3), 193Ð216. Warren, S. A., & Mondy, L. W. (1971). To what behaviors do attending adults respond?. American Journal of Mental DeÞciency, 75(4), 419Ð455. Wing, L. (1989). Hospital closure and the resettlement of residents, Aldershot: Avebury. Yeates, S. (1998). Hearing loss in people with learning disabilities. Tizard Learning Disability Review, 3(2), 20Ð29.
The Mysterious Myth of Attention Deficits and Other Defect Stories: Contemporary Issues in the Developmental Approach to Mental Retardation JACOB A. BURACK McGILL UNIVERSITY MONTREAL, QUEBEC, CANADA
DAVID W. EVANS BUCKNELL UNIVERSITY LEWISBURG, PENNSYLVANIA
CHERYL KLAIMAN AND GRACE IAROCCI McGILL UNIVERSITY MONTREAL, QUEBEC, CANADA
The impetus for writing this chapter arose initially from our concerns about the body of literature on attentional functioning among persons with mental retardation that led to the commonly held notion that attentional deÞcits are inherent to mental retardation. Initially articulated by Zeaman and House (e.g., Fisher & Zeaman, 1973; Zeaman & House, 1963, 1979), this notion continued to be forwarded for more than 3 decades (e.g., Bergen & Mosley, 1994; Melnyk & Das, 1992; Merrill & Taube, 1994), despite obvious methodological problems (for a review, see Iarocci & Burack, 1998). Although certainly not characteristic of all empirical work on persons with mental retardation, the value of this research is diminished considerably by the researchersÕfailures to consider relevant theoretical and methodological advances that are central to a current revolution involving INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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developmental principles in the study of atypical populations (Burack, Hodapp, & Zigler, 1998; Cicchetti & Cohen, 1995; Luthar, Burack, Cicchetti, & Weisz, 1997). Accordingly, we revisit the developmental approach and its implications for understanding research on attention and other aspects of functioning among persons with mental retardation. In particular, we focus on the necessity of applying developmental theory to the interpretation of empirical Þndings. For example, we do not preclude the possibility that attention deÞcits may be integral to mental retardation, but rather argue for the necessity of scientiÞcally and logically sound parameters for such a claim. More important, the relevance of this framework is not conÞned to the study of attention, and we argue it must be made a central tenet in the study of all domains of behavioral functioning among persons with mental retardation. We do not believe that a developmental approach is without problems, but rather that it must be the starting point for all behavioral research about persons with mental retardation. Accordingly, we take this opportunity to articulate the historical and current relevance of the developmental approach to the study of mental retardation, to highlight the advances since the original formulation, and to attempt to offer solutions to methodological problems that are inherent to this approach. In doing so, our goal is to demonstrate the relevance of the developmental approach across the spectrum of subcultures of researchers of mental retardation. We use the example of attention research as a focal point for presenting the larger context of developmental theory and methodology that can be applied across domains of research.
I.
THE MYTH OF ATTENTIONAL PROBLEMS: AN EXAMPLE OF THE DEFECT APPROACH
Consistent with the so-called ÒdefectÓapproach to mental retardation in which researchers search for a speciÞc domain to explain the IQ deÞcits inherent in mental retardation, Zeaman and colleagues (e.g., Fisher & Zeaman, 1973; Zeaman & House, 1963; 1979) proposed attentional problems as comprising the core deÞcit. Subsequently, other researchers attempted to highlight speciÞc components of attention that were impaired among persons with mental retardation. Although the aspects of attention addressed in these studies varied considerably, the common theme was that attention problems are inherent to mental retardation. Thus, the association between mental retardation and attention became accepted lore in the study of mental retardation. Melnyk and Das (1992) noted that ÒattentiondeÞcit without hyperactivity has been recognized as characteristic of individuals with mental retardationÓ;Bergen and Mosley (1994) noted that Òindividuals with mental retardation consistently demonstrate attentional deÞcienciesÓ;and Merrill and Taube (1996) asserted that Òpersonswith mental retardation often exhibit difÞculties in cognitive performance that are associated with the mechanisms of attention.Ó
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Based on a literature review, however, Iarocci and Burack (1998) concluded that the empirical evidence does not support the claim of attentional deÞcits in mental retardation, and labeled the notion a Òmyth.ÓThe impression of an attentional deÞcit was based on decades of research ßawed by methodological problems that necessitate the reconsideration of the interpretation of the data (Iarocci & Burack, 1998). The most common and methodologically problematic aspects of this work was the strategy of matching persons with and without mental retardation by chronological age (CA). The majority of studies in which there was evidence of attentional impairment among the persons with mental retardation were those in which the comparison groups were matched to the target group on CA (see Iarocci & Burack, 1998). Not surprisingly, persons with mental retardation showed impaired performance in a variety of aspects of functioning when compared to CAmatched persons. A second source of confusion was the lack of consideration of etiological differences among the subjects. For example, attentional functioning is likely to be a function of speciÞc organic damage regardless of level of intellectual functioning or impairment (for essays on the relationship of attentional functioning and various physiological and neurological disorders, see Burack & Enns, 1997). A.
Methodological Problems in the Literature on Attention Research in the Study of Mental Retardation
During the 1990s, evidence of attentional deÞcits among persons with mental retardation, as compared to those without, included citations of the allocation of fewer resources to stimulus encoding and decision-making processes (Merrill, 1992); the necessity of twice as many practice trials to show automatic search and detection processes (Merrill, Goodwyn, & Gooding, 1996); impairments in actively suppressing stimuli that are not to be selected (Cha & Merrill, 1994), in inhibiting distractors on conditions with longer intervals between prime and probe displays (Merrill & Taube, 1996), and in restricting visual focus to a narrow range of the visual Þeld or as a function of attentional set (Merrill & OÕDekirk, 1994). However, in all these examples, the Þndings are based on group compari sons in which the criterion for matching was a loose measure of CA and not on MA or some other developmental measure. The lack of importance assigned to developmental matching is highlighted by comparisons between high school students with mental retardation and chronologically older university students. The latter group is inappropriate as a comparison for the former group due to both the differences in age and educational status. This failure to match on meaningful developmental measures precludes any conclusions regarding poorer performance and attentional impairments among persons with mental retardation. Deleterious performance would be expected for any number of tasks and domains of behavior besides attention, since general functioning is considerably lower for persons with mental retardation as compared to those without mental retardation when matched for CA or when the persons with mental retardation are younger.
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Etiology of the persons with mental retardation is generally ignored, and, therefore, statements regarding the association of mental retardation and attentional functioning are potentially confounded with possible effects of the various organic etiologies of the speciÞc subjects. The evidence from one article (Merrill and OÕDekirk,1994) in which both an etiologically heterogeneous group and a group of persons with Down syndrome were included highlights the intricacies in interpretations concerning etiological groups. The Þndings from the etiologically heterogeneous group are problematic since differences in organicity may be related to group differences in attentional functioning and, therefore, speciÞc patterns of attentional functioning within groups may be obscured. The implications of the Þndings from the group of persons with Down syndrome may be informative for, but are limited to, persons in that speciÞc etiological group. Thus, the conclusion that Ò. . . persons with mental retardation exhibit a global attentional processing deÞcit relative to persons without mental retardation, and that there is no difference in attentional processing between persons whose mental retardation is the result of different etiologiesÓ(Merrill & OÕDekirk,1994, p. 129) needs to be tempered. Any one or more, of the several hundred different etiologies, besides Down syndrome, may be associated with unique attentional functioning and each would have to be tested before this type of global statement would be appropriate (Burack, 1990; Burack, Hodapp, & Zigler, 1990). In summarizing the literature on attention in persons with mental retardation, we agree that persons with mental retardation may perform worse than their CAmatched peers; however, that is a truism that may be applied to any number of areas of behavioral functioning. The claim for an attentional deÞcit as inherent to mental retardation would necessitate the Þnding of a deÞcit among persons with mental retardation that is not associated with any speciÞc organic etiology or is evident among all persons with mental retardation. Furthermore, these deÞcits would have to be evidenced in comparison to typically developing persons matched on some meaningful developmental measure. When these strategies are utilized appropriately, impairments in performance can be attributed to mental retardation per se and not to speciÞc types of organic damage or a priori differences in general functioning. Thus, when the literature was assessed with the appropriate strategies of matching by MA and with etiology considered, there was no empirical evidence of any meaningful relationship between mental retardation per se and attentional problems. Does that mean that we can be certain that there is no such relationship? Of course, there is still considerable doubt. The available literature is limited in several ways. One, only a few of the many aspects of attention are examined in studies that include persons with nonorganic forms of mental retardation and typically functioning children matched for developmental level, so differences may be found in components not yet examined. Two, the experimental tasks may not be good indices of attentional functioning and/or may not be ecologically valid, thereby
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reducing the likelihood of Þnding actual group differences. For these reasons, we cannot argue deÞnitively that there are no attentional deÞcits common to persons with mental retardation. Furthermore, some types of organic problems may even likely be related to both mental retardation and attentional problems. However, the only accurate assessment of the empirical literature is that there is no meaningful data in support of the long-standing belief that attentional deÞcits are intrinsic to mental retardation (Iarocci & Burack, 1998). This reassessment of the literature on attention and mental retardation leads to two conclusions that, at Þrst glance, might seem inconsistent but which speak to the need for sound theory and methodology. The Þrst is that ßawed research can easily lead to erroneous beliefs. This may be particularly costly in the case of the study of persons with mental retardation since a goal of research is to provide educators, care and service providers, and family members insights about improving the quality of life of these persons. Accordingly, misinformed research may be responsible for the waste of resources, energy, time, opportunity, and hope in the service of persons with mental retardation. The second conclusion is that, despite the failure of researchers to identify any attention deÞcits among persons with mental retardation, some may yet be found among certain persons at certain ages. However, the only way to attain this understanding, and thereby to provide information relevant to work with this population, is to present theoretically and methodologically sound research that leads to information that is accurate (or at least as accurate as possible within the constraints of the knowledge of the time) and informative. Our goal here is to generate discussion that will lead to improved theory and methodology in the study of persons with mental retardation. Accordingly, we turn to the developmental approach as a framework for studying and understanding attentional and other aspects of behavioral functioning among persons with mental retardation. In order to highlight both its historical and current value, we provide an account of the developmental approachÑbe ginning with ZiglerÕs original formulation and culminating in current discussions about theory, methodology, interpretation, and topics of research (Burack, Hodapp, & Zigler, 1998; Cicchetti & Beeghly, 1990; Hodapp, Burack, & Zigler, 1990). We hope that this chapter will facilitate debate and discussion about theoretical and methodological issues across areas of research concerning persons with mental retardation.
II.
ORIGINS OF THE DEVELOPMENTAL APPROACH
The developmental approach to mental retardation was formally introduced a little more than 30 years ago with ZiglerÕs (1967, 1969) widely cited articles in which he decried the traditional research methodologies that were oriented simply to identifying group differences or defects among persons with mental retardation. Consistent with his notion that basic developmental principles were universal to
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all persons regardless of disability, Zigler articulated conceptual issues that would become the foundations of the developmental approach to mental retardation. In particular, he viewed the essence of mental retardation as a developmental issue. Mental retardation is deÞned by IQ, essentially a marker of developmental rate Ðthe extent to which one is developed (mental age, MA) in relation to the time that passed since birth (chronological age, CA). Thus, the formula for IQ, MA divided by CA times some constant (usually 100), is a simple index of the speed of cognitive development, much like kilometers per hour provides an index for the speed of travel. This work was largely motivated by ZiglerÕs interest in understanding the development of children who functioned in the range of mental retardation but showed no evidence of organic damage. Based on epidemiological studies (e.g., Dingman & Tarjan, 1960), Zigler suggested that these persons simply represented the lower end of the normal distribution of intelligence scores. The relatively impaired level of functioning among these persons was considered to be the consequences of complex patterns of familial genetic heritage and environmental factors, similar to the way that average or above-average intellectual functioning can be considered the result of the same factors. Thus, these persons, whom he referred to as those with cultural-familial retardation, were considered to be physically/neurologically intact to the extent that development proceeded in the same way as among typically developing persons only at a slower rate. Zigler reasoned that these differences in rate, despite similarities in development, are found in comparisons of any groups of persons at different levels along the continuum of IQ scores, regardless as to whether either group falls within the range of mental retardation. However, Zigler emphasized that persons with familial retardation may perform differently on certain tasks because of motivational/personality differences that arose due to their speciÞc, and generally less than optimal, life experiences. In contrast to the similarities approach relevant to the persons with familial retardation, Zigler argued that persons with organic retardation are likely to show developmental differences associated with their biological/physiological insult. For example, with regard to rate of development (IQ), Zigler argued that persons with organic retardation did not Þt into typical distributions of intelligence, but rather were the source of the observed bulge in prevalence rates at the lowest IQ levels and with regard to sequences and patterns of development. This differentiation between persons with familial and organic retardation is consistent with earlier diagnostic differentiations such as IrelandÕs (1877) between mental retardation associated with medical conditions and Òidiocy by deprivationÓ;DownÕs (1887) among mental retardation due to congenital, accidental, and developmental factors; LewisÕs (1933) between ÒsubculturalÓand ÒpathologicalÓmental defectives; and Kephart and StraussÕs (1940) between ÒendogenousÓand ÒexogenousÓtypes of mental retardation (for a review of these various classiÞcatory schemes, see Burack, 1990). This emphasis on differences between the persons with organic retardation and those with familial retardation raises the question whether developmental principles are universal, and even applicable, to persons who suffer from some type of physiological atypicality.
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The most basic of ZiglerÕs premises was that persons with familial and organic retardation differ, as the former follow developmental patterns similar to those seen among persons without mental retardation, whereas those with organic retardation would be expected to be somehow different. The assumption of similarity between the persons with familial retardation and those without retardation were presented as two separate theoretical principles that are known as the similar sequence and similar structure hypotheses. The similar sequence hypothesis refers to vertical development within a given domain, as persons with familial retardation are thought to traverse the stages of development within a given domain of functioning in the same sequence as that of typically developing children. Conversely, the similar structure hypothesis refers to horizontal development as the structure of, or interrelationship across, domains of cognition and functioning. These structures are thought to be the same for persons with familial retardation and for those without mental retardation, as the basic rules of the integrity and organization apply to both (Werner, 1948). The articulation of these theoretical principles occurred in concordance with the adoption of methodological guidelines that are the essence of developmental research on persons with mental retardation. The distinctions between persons with familial and organic retardation led to a call for the study of homogeneous groups of persons with familial retardation so as not to confound the data with that from persons whose functioning may be impaired as a result of biological damage, independent of mental retardation. As a result, researchers could no longer consider persons with mental retardation to be a homogenous group. The notions of similar sequence and structure suggest that matching groups by developmental age, typically within the framework of mental age, is meaningful since both the developmental histories and current developmental structures of the two groups are similar. These methodological principles continue to be the cornerstone of empirically sound research about persons with mental retardation, although all are transformed to some degree in order to account for advances and changes in the Þeld during the 30+ years since ZiglerÕs initial formulations. Accordingly, we consider the beneÞts of, and difÞculties with, these principles within the context of advances in developmental research.
III.
EXPANDING THE STUDY OF MENTAL RETARDATION TO INCLUDE PERSONS WITH ORGANIC ETIOLOGY
The Þrst signiÞcant modiÞcation of the developmental approach was the study of groups of persons who are homogeneous with regard to the organic etiology of mental retardation. In addition to sharing the same biological source of mental retardation, homogeneous groups show similarities in behavioral, cognitive, emotional, and social development (Burack, Hodapp, & Zigler, 1988, 1990; Dykens, 1998). The historical precedence for this approach includes William Wetherspoon
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IrelandÕs (1877) differentiation among nine different types of medical conditions associated with mental retardation and Langdon DownÕs (1887) differentiation between cretinism and mongolism, now known as Down syndrome. The study of precise etiological groupings of persons with mental retardation highlights several factors that are central to the transformation of the developmental approach. In keeping with the general framework of developmental psychopathology and the relationship between typical and atypical development, the distinctions by etiology among persons with mental retardation provides more precise insights both about general development and about persons with mental retardation (Hodapp & Burack, 1990). This mutually informative aspect of the science can be seen both in areas where differences among the speciÞc etiological groups are present and in those where they are absent. The case of differences among groups is informative for understanding unique patterns of development associated with speciÞc etiologies and allows for rare insights into the extent to which development can vary across persons. The former is useful to planning effective interventions and the latter to discussions about the universality and constancy of developmental patterns. The implications of Þndings of commonalities among groups is often less obvious, but as useful to understanding both typical and atypical patterns of development. For example, in an extensive review of studies on sequences of development within speciÞc domains, Weisz and Zigler (1979) found similar sequences, regardless of the etiology of persons with mental retardation, a Þnding that was also replicated among persons with autism (Burack & Volkmar, 1992). This similarity across populations is relevant to the general study of developmental processes, as it indicates inherent orderliness of progression within domains that is resistant even to biological damage that affects the cognitive system (Hodapp & Burack, 1990). Similarly, the similar-sequence Þnding across etiological groups provides evidence that certain common developmental notion and principles can be applied in theoretical and applied work with persons with mental retardation (Burack, 1990). For example, notions of level of development within a domain become meaningful since attainment of a certain level is universally indicative of speciÞc skills that are already attained. Concordantly, the attainment of each becomes a universal index of the subsequent challenges that the individual will face and of the next skill/ability that will be achieved. This type of information should be central to educational and related intervention programs. A.
Etiology and Behavioral Development
In the study of behavioral development, the differences among the etiological groups are evident with regard to rate and structure of development across domains (Burack, 1990; Burack, Hodapp, & Zigler, 1988; Dykens, 1998). Rate can differ with regard to general rate of development as some etiologies are associated with
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development that is so delayed that they are always associated with severe or profound mental retardation. In other etiological groups, the delay may not be as severe and the afÞliated mental retardation is more mild, and yet in other groups, the rate may be quite variable across members, much as it is among persons that fall within the broad range of typical development. Rate also differs across groups with regard to patterns across the age range. For example, persons with Down syndrome show a consistent deceleration in general cognitive development, as indicated by declines in IQ beginning early in childhood, whereas persons with fragile X show a steady rate of development until puberty at which time IQ declines steeply (Dykens, Hodapp, & Leckman, 1994; Hodapp, Evans, & Gray, 1999). These general patterns of development are essential to understanding current levels of functioning and eventual outcomes for persons within a speciÞc group. However, rate of general development provides an overly simple construct for the development that is composed of and inßuenced by a complex union of changes across many domains. A more Þne-grained analysis of development entails the charting of its structure, or the relationship of development across domains. Patterns of developmental structure within and across speciÞc etiological groups provide an even more precise understanding of the differences among groups. In general, varying proÞles of relative strengths and weaknesses across areas of functioning are the basis for behavioral delineation of diagnostic groups as diagnostic systems are constructed on the basis of the presence and/or absence of behaviors (e.g., Pennington & Bennetto, 1998). Diagnoses are rarely based on one criterion but rather on a proÞle that is relatively consistent among the identiÞed group of persons but somehow unique from other persons. Although these structures of development are typically thought of as horizontal, since they are deÞned by relationships or patterns across domains, they also entail a vertical aspect since the level of functioning attained at any point is contingent upon the rate of development through the sequence of stages within a particular domain. Thus, horizontal structure is determined by the relationships of rates of development within the various domains. As rate of development differs widely across domains in relation to developmental level, for both typical and atypical populations, the proÞles of differences in structure are constantly changing. Accordingly, within a given group, the level of performance on a given task may seem delayed or impaired in relation to one or more other areas when compared to typically developing children or to other etiologically homogeneous groups of persons with mental retardation. Over time, this gap may widen, stay relatively constant, or diminish. The implications of these group differences are immediately evident for understanding persons with mental retardation, but provide a challenge to traditional notions of development. The lessons for persons with mental retardation relate to the utility of a precise understanding of the proÞle or structure of development within a speciÞc group. These types of Þne-grained analyses point to areas of strength that can be highlighted and utilized by educators and others and areas of
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weakness that should be the focus of intervention or, if too deÞcient, might be bypassed. Similarly, the discordance in functioning among domains indicates unique difÞculties faced by individuals at various developmental levels. For example, the relative impairment in productive language among children with Down syndrome does not seem relevant to the development of friendships in childhood but appears to be a deleterious factor in peer relationships during adolescence when language is essential to personal relationships (Hodapp & Zigler, 1995). B.
Liberal Developmental Approaches
The differences in proÞles among the etiologically homogeneous groups are challenging to developmental theory, as they are evidence that the horizontal structure of development may not be as tightly organized and interdependent as is often portrayed in mainstream theories and models of development. ZiglerÕs notion of a similar structure is clearly not relevant to these populations, thereby forcing developmental theorists to either abandon their notion of an integrated and organized system or consider some modiÞed alternative. The abandonment of a meaningfully organized system is consistent both with modular systems of cognition, in which domains of functioning develop independently of each other, and with defect approaches to mental retardation, in which the search for the source of mental retardation is focused on speciÞc areas of functioning. These approaches complement each other as areas of speciÞc deÞcit (and much less frequently, areas of relative strengths) provide modular theorists with evidence for the independence of speciÞc cognitive systems. The best recent example is the literature on theory of mind impairments among persons with autism. Initial Þndings that these deÞcits were greater than those in other areas of functioning were cited as evidence that theory of mind processing represents an independent module (for a review, see Baron-Cohen, 1995). In contrast to the modularists, developmentally oriented researchers use the opportunity of varied proÞles to extend notions of the organization of development (Frye, Zelazo, & Burack, 1999; Hodapp & Zigler, 1995). Variability across proÞles was always recognized since there is obviously considerable intra- and interindividual variation. For example, Piaget referred to the ßux within proÞles as horizontal d« ecalage and Fischer (1980) observed that Òunevenness is the rule of development.ÓHowever, this variability is considered to be minor and was not typically viewed as a challenge to the organizational approach to development. In contrast, the severe impairments and delays seen in many groups of persons with mental retardation necessitates the reconsideration of the developmental principles. In one attempt to broaden the developmental framework, Cicchetti and PoggeHesse (1982) argued for a liberal developmental approach which they contrasted to ZiglerÕs more conservative approach. Within this liberal framework, differences in rate of development across domains for the various groups are seen as evidence for a system in which the relationships among domains are more loosely constructed,
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but systemic integrity is still maintained. This type of approach challenges researchers to reevaluate the necessity or happenstance of the relationships among abilities and skills that generally co-occur or seem related in typical development (Hodapp & Burack, 1990; Hodapp & Zigler, 1995). The disparities in proÞles are informative in two concordant ways. One, they allow insight into the extent to which the relationship among certain domains can be stretched. Two, they provide opportunity to study cross-domain relationships that might not be observable when only typical development is considered. Thus, in the study of persons with mental retardation, the unique proÞles of the speciÞc etiological groups are relevant both to understanding the relative strengths and weaknesses in different areas of functioning and for the equally important issue of the relation among the domains. The inherent integrity of the system dictates that abilities and impairments across areas inßuence each other and need to be considered in both empirical and applied work in this population. The liberal developmental approach provides a starting point for assessing methodologies used in the study of persons with mental retardation. In the next section, we outline theoretical and methodological issues that derive from developmental theory. As with most approaches to science, this one is still in need of revision and reconsideration. Thus, we outline some of the problems with the developmental approach and suggest new initiatives in the area. In certain cases, a single methodological solution is not possible so we consider the relation between methodology and interpretation.
IV. A.
METHODOLOGICAL STRATEGIES
Differentiating by Etiology
Within the multigroup framework of differentiating by etiology, mental retardation is not seen as a disorder, but simply as a symptom or set of symptoms associated with either natural variation of intelligence or one or more of the several hundred different organic disorders. Issues relevant to one etiological group are not necessarily pertinent to others, and, therefore, the only meaningful groupings are those based on speciÞc etiology. However, certain drawbacks are inherent to this approach. One, precise classiÞcations and diagnoses are often difÞcult due to insufÞciently sophisticated technologies for accurately detecting abnormalities and/or to imprecise or unreliable systems for classifying behavioral and neurological disorders. Two, stricter inclusion criteria results in fewer eligible subjects, leading to restricted range and possibly reduced statistical variance. This is particularly problematic for the study of persons with speciÞc etiologies that are rare, difÞcult to identify, and/or difÞcult to test. Despite these drawbacks, only research with etiologically homogeneous groups provides meaningful information about development and the functioning of persons with mental retardation.
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J. A. Burack et al. The Matching Issue
The use of comparison groups is essential to evaluating research about any speciÞc population (Burack, 1997). The choice of groups provides a framework for understanding whether performance is typical and/or whether it is unique among groups. Wagner, Ganiban, and Cicchetti (1990) referred to the questions of ÒnormalcyÓand ÒuniquenessÓto delineate the types of comparisons that can be made when studying atypical populations. They explained that typical populations are used as comparison groups in order to address the question of normalcyÑIs the performance of the target group similar to that of the typical population? Conversely, the question of uniquenessÑIs the performance of the target group only seen with this particular population?Ñcan only be addressed when other atypical populations are included as comparison groups. C.
The “Normalcy” Question
The question of normalcy for persons with mental retardation cannot simply be whether they perform worse than their typical peers, since, by deÞnition, lower functioning persons are expected to be deÞcient on most tasks if compared to typically developing persons of the same chronological age. Any Þndings of impairments may be simply the consequent of their generally slowed rate of development (i.e., lower MA) rather than of either a speciÞc impairment associated with mental retardation or of the sequelae of individual etiologies. Accordingly, normalcy questions need to be reformulated within the context of expectations for the subjectsÕparticular level(s) of development. The simplest question is that in which the performance of the etiologically homogeneous group of persons with mental retardation is compared to that of MAmatched typically developing children. This common-sense strategy is an obvious solution for alleviating the inherent problem that the lower functioning group is, by deÞnition, expected to perform worse than CA-matched peers in any area of functioning. By equating groups of subjects on some general level of functioning, there is opportunity to determine which areas of functioning are intact with regard to overall level of development and which are problematic even when the general delay is taken into account (Hodapp, Burack, & Zigler, 1990). However, MA matching of persons with mental retardation and typically developing children is problematic due to group differences related to CA discrepancies. Groups of typically developing and lower functioning persons matched on MA necessarily differ with regard to a variety of factors relevant to biological maturation and life experiences that can affect performance on tests and responses on questionnaires in a variety of ways (Evans, Hodapp, & Zigler, 1995; Mundy & Kasari, 1990; Zigler & Hodapp, 1986). The difÞculties associated with the discrepancy between MA and CA highlight the inßuence of CA-related factors to understanding persons with mental
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retardation and to other inßuences in their lives. In these cases, CA provides a general metric for a broad range of factors associated with biological, socialization, and experiential factors. However, the precise CA is not meaningfully related to level of functioning in any behavioral domain and therefore is not likely to be informative as a matching measure. Tasks that are challenging for the target group are likely to be simple for the CA-matched peers of average intelligence, and tasks that are challenging for this comparison group are likely too difÞcult for the target group. 1. DEVELOPMENTAL CONSIDERATIONS IN THE USE OF STANDARDIZED TESTS The matching process is complicated by the diminished efÞcacy of standardized tests for establishing commensurate MA levels between persons with mental retardation and typically developing children. Precise matching is difÞcult due to the unique behavioral proÞles of relative strengths and weaknesses that characterize the various etiological groups. This diminishes the utility of a general developmental level, or MA, that is based on the notion of fairly consistent crossdomains relationships across persons, either typically developing or with familial retardation. In cases of consistent development across domains, MA provides a baseline measure of performance that was meaningful across virtually all areas of functioningÑdiscrepancies were few and, therefore, meaningful to understanding speciÞc differences in performance. However, in the cases of speciÞc etiologically homogeneous groups of persons for whom discrepancies in levels of functioning across domains are the rule, a measure of MA is simply a composite score based on very diverse levels of functioning. At a methodological level, the discrepant proÞles are problematic with regard to choosing an appropriate measure for matching. If a composite score of MA is used then level of development will be overestimated in areas of deÞcit and underestimated in areas of strength, thereby inßuencing Þndings relevant to group differences. For example, if a speciÞc target group of persons is particularly deÞcient in the area of general language development, then a composite score of MA will indicate a developmental level higher than their language developmental level. Thus, the comparison group, matched on the composite developmental measure, will likely score higher than the target group on any or most measures of language. The converse would be true for any area of functioning which is a relative strength of the target group, such that the composite score would underestimate their level of performance in this area and, therefore, they would be expected to perform better than the comparison group, matched on the composite score. One strategy is to match the groups on a measure that is related to the ability that is being tested. In this case, the likelihood of Þnding group differences is minimized. However, the advantage is increased conÞdence that the evidence of either impaired or superior performance is an accurate reßection of developmental level speciÞc to the target skill and is not simply the consequent of more general weaknesses or strengths.
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The methodological dilemma is further complicated by the nature of the tests of IQ and speciÞc abilities that are typically used to attain measures of developmental level. For example, the tests are generally normed on groups that are composed primarily of typically developing children, a strategy that reßects the composition of the general population. Although appropriate for most children, these tests may be particularly problematic for groups with speciÞc weaknesses. For example, for groups with limited or no communication skills, tests entailing considerable use of verbal instructions and/or questions will underestimate their general level of cognitive functioning. These methodological difÞculties necessitate a reevaluation of the role of matching groups and the questions that can be asked. Accordingly, the notion of matching can no longer be seen as some deÞnitive method for evaluating group strengths and/or weaknesses, but rather as a context for intragroup comparisons of levels of performance across domains of functioning (for a detailed discussion of the use of standardized tests in matching, see Mervis and Robinson, 1999). One alternative, and comprehensive, strategy is the use of multiple groups of typically developing persons, each of which is matched to the target group on a different measure of development. This strategy allows for increased precision in evaluating level of functioning in the speciÞc domain within a more comprehensive developmental framework. Functioning in the domain of study can be charted against each of the developmental criteria, which can be either general or speciÞc indices. For example, performance on a speciÞc task can be compared to that of typically developing comparison groups matched on measures of receptive language, expressive language, general language functioning, and/or general IQ. The ages of the comparisons groups will vary depending on the speciÞc matching measure, and accordingly, the identiÞcation and severity of impairments (or strengths) will differ for each of the comparisons with the target group. Increasing the number of comparisons leads to a more precise understanding of level of functioning in the speciÞc domain within the contexts of developmental strengths and weaknesses, but requires considerably more resources and complicates interpretations. D.
The “Uniqueness” Question
By deÞnition, behavioral disorders or syndromes are deÞned clinically by speciÞc proÞles of functioning that are in some ways different both from the typical population (the normalcy question) and from other clinical populations (the uniqueness question). Thus, groups are deÞned diagnostically by speciÞc problems in one or more areas of functioning. Even when disorders are considered pervasive, with the possible exceptions of general intellectual delay (i.e., persons with familial retardation), they are distinguished from each other by the relationship among domains of behavioral functioning. These differences may be at a macro level, where primary deÞcits may be seen as some general problem in the cognitive, social, or
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emotional domains, or at more micro levels, where the differences may be in more speciÞed subdomains, or even sub-sub-domains, of functioning. For purely logical reasons, the strongest form of the uniqueness questionÑIs the speciÞc behavior or pattern of behavior found only in the target group?Ñcan never be answered deÞnitively until every possible population and subpopulation is tested. However, direct comparisons of groups that share similarities can be informative for identifying deÞning characteristics of each group. For example, the delineation of behavioral characteristics that are unique to a speciÞc etiological group indicates that the behaviors under study are associated with the etiology and not with the mental retardation that is common to all groups. The appropriateness of group comparisons may vary depending on the domain of study. For example, comparisons between persons with Williams and Down syndromes may be informative for studies of social interests that are relative strengths in both groups (Pober & Dykens, 1996; Tager-Flusberg & Sullivan, 1998), but not in expressive language, an area of strength for children with Williams syndrome (Pober & Dykens, 1996) but weakness for children with Down syndrome (Tager-Flusberg & Sullivan, 1998). The strategy of comparing persons from two or more speciÞc groups allows for a precise comparison of two deÞned groups, but is limited as the Þndings pertain only to those speciÞc populations. Comparisons between persons with Down syndrome and those with Williams syndrome, or between any two or more speciÞc atypical groups, bear few, if any, implications beyond the speciÞc comparison. The performance of persons with Down syndrome or with Williams syndrome is not representative of all persons with mental retardation, thereby precluding any conclusions regarding mental retardation per se. Despite these inherent limitations, comparisons among speciÞc atypical groups are necessary for precise conceptualizations of various disorders.
V.
ISSUES OF DEVELOPMENTAL LEVELS OF THE PARTICIPANTS
Assessments at different ages/levels of functioning are central to creating a comprehensive picture of development across domains of behavior. This type of comprehensive charting is necessary since certain problems are apparent at one developmental level and not at another (Enns & Burack, 1997; Sroufe & Rutter, 1984). In some cases, the deÞcit is evident at an early level of functioning but not later in development, as the task is eventually mastered. In other cases, development appears typical at young ages when all that is required are simple behaviors and/or understanding that are indicative of lower developmental levels, but is deÞcient with more sophisticated and complicated tasks that reßect higher developmental levels. This portrait of developmental change is further complicated by changes with
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developmental level in the proÞles of relationships across domains. As speciÞc aspects of functioning are all interrelated in a dynamic system, the relationship among them can and does change throughout development (Hodapp & Zigler, 1990). Thus, understanding the unique relationship between speciÞc problems and relevant aspects of development entails studies in which functioning is considered at various developmental levels. Moreover, there is a need to plot trajectories across a range of functions and abilities that appear to be interrelated in typical development. This allows assessment of whether particular capacities or skills are solved by different underlying processes, which would imply alternative developmental pathways and potential differences in adaptive functioning. Developmental level at time of identiÞcation of the problem is integral to predicting behavioral sequelae and outcome since a deÞcit or delay in a speciÞc area of behavior may be manifested in several different ways throughout development (e.g., Burack, 1997). For example, the long-term or cumulative effects of an early cognitive processing problem may lead to profound deÞciencies/delays in any number of domains of functioning, including those not obviously related to the original problems. Similarly, problems in other areas may be precursors to later deÞciencies or delays in cognitive functioning (Sroufe & Rutter, 1984). Within the ever-evolving complex web of interrelated internal and external components of the developing systems, signiÞcant deviations from the norm are likely to have far-reaching and enduring consequences. Thus, a deÞcit or delay in a domain of functioning, such as joint attention, that typically emerges in infancy may be related either to later problems in similar areas of attentional functioning or to those in more remotely related areas of development, such as the ability to engage in reciprocal social interactions (Zelazo, Burack, Boseovski, & Frye, in press). Within a developmental framework, the extent of impairments in performance among a speciÞc group of persons can be understood within the context of developmental delay. Delays are identiÞed by a level of functioning that is lower than that expected by CA or MA, but still related to them in some consistent and systematic way. In cases of general developmental delay, levels of functioning across domains are lower than among same-CA peers of average functioning, but commensurate with same-MA persons. However, in examples of speciÞc developmental delay, successful performance on a task is not attained until considerably later than typical even when general level of development (and not CA) is taken into account. The extent of the delay is informative about the severity of the impairment and the extent to which it might affect other aspects of functioning (Yirmiya, Erel, Shaked, & Solomonica-Levi, 1998). A.
Interpreting Nonsignificant Findings
The developmental premise that groups of persons matched on mental age should show similar abilities and/or level of performance on many aspects of functioning
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indicates that Þndings of no differences between groups are of interest. In areas of suspected deÞcit, Þndings of no differences in relation to typically developing children with appropriate matching suggest that the apparent problem may be an artifact of the generally delayed development among persons with mental retardation or a function of some broader area of difÞculty. However, the failure to Þnd differences between groups matched at a certain MA (or CA) does not preclude the possibility of a syndrome-speciÞc problem; rather, it denotes that at a certain point (or points) in development the groups do not differ on a speciÞc task. The relevance of Þndings of no differences is contingent on two basic developmental premises. The Þrst issue is that showing differences at one or a few points in development is not sufÞcient. Rather, the task is to show that differences were never apparent between the groups. This entails assessing levels of performance at the appropriate developmental transition points when the ability in question Þrst emerges, as this is when differences are most likely to be apparent. An even more extensive strategy includes the use of cross-sectional or longitudinal studies with participants across a wide range of developmental levels, including those prior to, concurrent with, and after the emergence of the ability in the comparison group. This strategy is helpful, as it provides more precise depiction of the level of functioning on speciÞc tasks at speciÞc developmental levels. This minimizes the possibility that developmental or group differences might be obscured as often happens when Þndings from persons of different developmental levels are grouped together for statistical purposes (Burack, 1997). A second issue is that an argument of no differences is contingent on evidence that similar performance on a task reßects similarities in the efÞciency and integrity of the underlying processes. Regardless of when in development the behavioral outcome appears typical among persons with autism, the underlying processes and/or mechanisms may not be identical to those seen in typically developing children of that developmental level. The considerably delayed attainment of a particular ability may be due to the individualÕs capacity to compensate for their weakness by using some alternative strategy or skill rather than by actual attainment of that skill. In this case, the behavioral outcome of similar performance does not accurately reßect the underlying processes nor the inherent impairments that delayed acquisition of the skills. The difÞculties in interpreting nonsigniÞcant Þndings are evident in articles from our own group. In one example, Randolph and Burack (2000) studied Þltering and covert, reßexive visual orienting among a speciÞc etiological group, persons with Down syndrome, and a typical comparison group, matched on a nonverbal task of MA at age 5, identiÞed as a pivotal point in the development of these attentional skills. The matching was based on a nonverbal test in order to minimize the confound associated with language deÞcits among persons with Down syndrome. Contrary to expectations, Randolph and Burack (2000) found that the persons with Down syndrome and the children of average intelligence
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showed similar patterns of performance on a task that required Þltering distracting stimuli and searching for relevant information in the visual Þeld. Both groups responded more efÞciently to a target preceded by a valid cue as compared to a target preceded by an invalid or neutral cue and to a target that was presented without irrelevant information as compared to one that was ßanked on either side by extraneous, nontarget information. The methodological precautions allowed Randolph and Burack (2000) to make an empirically valid statement about attentional functioning among persons with Down syndrome. Yet, these same methodological concerns limit the extent of the argument. In this scenario, the strongest argument we are able to forward is that the development of visual reßexive, covert orienting, and Þltering appears be intact among persons with Down syndrome relative to their level of functioning only at an MA level of approximately 5 years. The signiÞcance of the MA level for the development of attention suggests that the similarities in attentional functioning between the groups would be evident at other ages, but this cannot be asserted without further testing. One obvious strategy for addressing this issue of interpretation of nonsigniÞcant Þndings is to compare performance at different levels of functioning. In an example of this type of approach, Wilansky and Burack (1994) reanalyzed BurackÕs (1994) evidence that children and adolescents with familial retardation, but not those with autism or certain types of organic mental retardation, perform similarly to typically developing children on a Þltering task. In the original study, the average MAs of all groups was 7 years. In the reanalysis, Wilansky and Burack (1994) divided the groups of children and adolescents with familial retardation and the typically developing children into two groups according to MA age. Consistent with the developmental approach, they found no differences between groups at either MA, but that within both groups, the higher MA group was better able to Þlter stimuli. Again, these Þndings cannot be generalized to all age groups, but provide increased certainty about the general relationship between the performance of the target and comparison groups across developmental levels.
VI.
SUMMARY
We began this article with a brief overview of the theoretical and methodological shortcomings that led to the decades-old myth of attentional deÞcit as central to mental retardation. We presented a reanalysis of the available data and suggested that no empirical evidence supports any relationship between attention deÞcits and mental retardation per se, although the available data is certainly not deÞnitive with regard to this question. Furthermore, we suggested that certain attentional deÞcits may be associated with speciÞc etiological groups. This review of research on attention among persons with mental retardation provided the context for a review of historical landmarks and contemporary innovations and issues in the
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developmental approach to the study of persons with mental retardation. This framework is clearly not problem-free, but its contributions to increased precision and sophistication in theory, methodology, and interpretation are essential to the study of persons with mental retardation. As compared to other approaches, the developmental one is limiting as it generally necessitates the use of more resources in the study of smaller groups, but is necessary for increased accuracy and precision in empirical Þndings. Greater awareness of developmental issues will inevitably lead to an increasingly heuristic and collaborative approach to research in which studies will be designed to complement one another. Ultimately, the products of these collaborations will provide information that is optimally helpful to persons with mental retardation, their families, and those who work with them. ACKNOWLEDGMENTS The contributions by Jake Burack, Cheryl Klaiman, and Grace Iarocci were supported by a research grant from the Social Sciences and Humanities Research Council of Canada to Jake Burack.
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Lewis, E. O. (1933). Types of mental deÞciency and their social signiÞcance. Journal of Mental Science, 79, 298Ð304. Luthar, S. S., Burack, J. A., Cicchetti, D., & Weisz, J. R. (Eds.). (1997). Developmental Psychopathology: Perspectives on adjustment, risk, and disorder. Cambridge: Cambridge Univ. Press. Melnyk, L., & Das, J. P. (1992). Measurement of attention deÞcit: Correspondence between rating scales and tests of sustained and selective attention. American Journal of Mental Retardation, 96, 599Ð606. Merrill, E. C. (1992). Attentional resource demands of stimulus encoding for persons with and without mental retardation. American Journal on Mental Retardation, 97, 87Ð98. Merrill, E. C., Cha, K. H., & Moore, A. L. (1994). Suppression of irrelevant location information by individuals with and without mental retardation. American Journal on Mental Retardation, 99, 207Ð214. Merrill, E. C., Goodwyn, E. H., & Gooding, H. L. (1996). Mental retardation and the acquisition of automatic processing. American Journal on Mental Retardation, 101, 49Ð62. Merrill, E. C., & OÕDekirk,J. M. (1994). Visual selective attention and mental retardation. Cognitive Neuropsychology, 11, 117Ð132. Merrill, E. C., & Taube, M. (1996). Negative priming and mental retardation: The processing of distractor information. American Journal on Mental Retardation, 101, 63Ð71. Mervis, C. B., & Robinson, B. F. (1999). Methodological issues in cross-syndrome comparisons: Matching procedures, sensitivity (Se), and speciÞcity (Sp). Monographs of the Society for Research in Child Development, 64, 115Ð130. Mundy, P., & Kasari, C. (1990). The similar-structure hypothesis and differential rate of development in mental retardation. In R. M. Hodapp, J. A. Burack, & E. Zigler (Eds.), Issues in the developmental approach to mental retardation (pp. 71Ð92).New York: Cambridge Univ. Press. Pennington, B., & Bennetto, L. (1998). Toward a neuropsychology of mental retardation. In J. A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 80Ð114).New York: Cambridge Univ. Press. Pober, B. R., & Dykens, E. M. (1996). Williams syndrome: An overview of medical, cognitive, and behavioral features. Child and Adolescent Psychiatric Clinics of North America, 5, 929Ð944. Randolph, B., & Burack, J. A. (2000). Visual Þltering and covert orienting in persons with Down syndrome. International Journal of Behavioral Development, 24, 167Ð172. Sroufe, L. A., & Rutter, M. (1984). The domain of developmental psychopathology. Child Development, 55, 17Ð29. Tager-Flusberg, H., & Sullivan, K. (1998). Early language development in children with mental retardation. In J. A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp. 208Ð239).New York: Cambridge Univ. Press. Wagner, S., Ganiban, J., & Cicchetti, D. (1990). Attention, memory and perception in infants with Down syndrome: A review and commentary. In D. Cicchetti & M. Beeghly (Eds.), Children with Down syndrome: A developmental perspective (pp. 147Ð179).New York: Cambridge Univ. Press. Weisz, J. R., & Zigler, E. (1979). Cognitive development in retarded and nonretarded persons: Piagetian tests of the similar sequence hypothesis. Psychological Bulletin, 86, 831Ð851. Werner, H. (1948). Comparative psychology of mental development (rev. ed.). New York: Follett. Yirmiya, N., Erel, O., Shaked, M., & Solomonica-Levi, D. (1998). Meta-analyses comparing theory of mind abilities of individuals with autism, individuals with mental retardation, and normally developing individuals. Psychological Bulletin, 124, 283Ð307. Zeaman, D., & House, B. J. (1963). The role of attention in retardate discrimination learning. In N. R. Ellis (Eds.), Handbook of mental deÞciency. New York: McGraw-Hill. Zeaman, D., & House, B. J. (1979). A review of attention theory. In N. R. Ellis (Ed.), Handbook of mental deÞciency, psychological theory, and research (2nd ed.). Hillsdale, NJ: Erlbaum.
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Guiding Visual Attention in Individuals with Mental Retardation RICHARD W. SERNA AND MICHAEL T. CARLIN SHRIVER CENTER, UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL WALTHAM, MASSACHUSETTS
Since the 1960s investigators have conducted research aimed at developing teaching methods that will help provide education and training to individuals with intellectual disabilities. Much of that research has been directed toward improving discrimination learning methods for individuals who do not learn with standard teaching procedures (e.g., verbal prompting and trial and error). At the heart of all discrimination learning methods has been the need to direct or guide a studentÕs attention to stimulus differences deemed relevant by the teacher. In a typical teaching situation, however, the student is confronted with a multitude of possible dimensions and features, most of which are irrelevant for the target discrimination. For example, when the teacher wants the student to attend to differences in form, other stimulus differences may be present (e.g., position, size, or color) that are irrelevant to the Þnal discrimination. How does one encourage observing of and attending to the relevant stimulus differences? Numerous methods have been developed to teach discriminations to individuals with intellectual disabilities (e.g., Lancioni & Smeets, 1986), and those methods have led to many successes. For some individuals, however, directing attending to task-relevant features of stimuli has proven difÞcult or impossible with currently available methods (cf. Serna, Dube, & McIlvane, 1997). The uneven efÞcacy of discrimination learning methods leads us to review closely, and from a broad perspective, the science that underlies attempts to guide attending and observing behaviors. Our review encompasses two complementary areas of theory and research. First, we critically examine behavior analytic theory and research that has supported the development of discrimination learning methods. The basic scientiÞc questions have largely focused on the problem of stimulus control transfer; that INTERNATIONAL REVIEW OF RESEARCH IN MENTAL RETARDATION, Vol. 24 0074-7750/01 $35.00
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is, transfer of control by stimuli in an ÒeasyÓdiscrimination to a more ÒdifÞcultÓ one. We begin with a historical review of the stimulus control transfer literature, through which we illustrate that, despite years of research in many laboratories, no satisfactory process-level account has emerged to explain stimulus control transfer. As a consequence, the many successes, and the frequent failures, of transfer-based teaching programs are only poorly understood. We also present new research that (a) clariÞes the nature of the stimulus control transfer problem and (b) leads us to reconsider long-standing assumptions about transfer. We concern ourselves particularly with the role of observing behavior; that is, the behavior of orienting toward the stimuli deÞned as relevant in transfer situations. Second, we selectively review recent advances in the visual and cognitive sciences that have demonstrated that observing behaviors are inßuenced dramatically by the structure of the visual array presented (e.g., Duncan & Humphreys, 1992; Theeuwes & Burger, 1998; Yantis, 1995). It has been shown that the structure of a visual array is a critical factor in the detection of similarities and differences among stimuli for individuals with mental retardation (Soraci & Carlin, 1992; Soraci, Carlin, & Wiltse, 1998). Thus, we review research on visual search processes in individuals with and without mental retardation that demonstrates the importance of stimulus structure for the guidance of initial observing responses. Through the pattern of the citations offered in this chapter, the reader will observe that behavior analytic research on stimulus control transfer and informationprocessing research on visual search proceeded independently until very recently. We believe, however, that examining the theory and research on guided attention within the visual and cognitive sciences has much to contribute to the problem of stimulus control transfer. We illustrate this point by presenting new research that demonstrates that establishing initial observing responses via manipulations of stimulus structure can serve to increase the efÞciency of learning in programs designed to teach desired stimulusÐstimulus relations in educationally relevant procedures such as matching to sample.
I.
DISCRIMINATION LEARNING
At the most fundamental level, all discrimination training has the goal of establishing stimulus control, which refers to relations between environmental stimuli and the behavior that occurs in their presence. If one wants to teach a nonspeaking child with mental retardation to use an alternative communication board or other such device, for example, one must establish controlling relations between (a) a set of symbols and their referents and (b) the symbol set and a communicative behavior repertoire (Beukelman & Mirenda, 1998). For some students, stimulus control can be established readily through traditional nonverbal discrimination training procedures like simple differential reinforcement (i.e., trial-and-error training).
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For many others, however, such procedures do not result in learning (e.g., Dube, Iennaco, & McIlvane, 1993; Ellis, Girardeau, & Pryer, 1962; Serna et al., 1997; Zeaman & House, 1963). Further, once a pattern of errors has been established, continued training with the same stimuli may produce only continued failure, even in cases in which the target discriminations are within the individualÕs capabilities (cf. Sidman & Stoddard, 1966). Since the mid-1960s, behavioral scientists have addressed discrimination learning problems with stimulus control shaping methods, a generic term for conceptually related methods that establish new discriminations via gradual stimulus changes in existing discriminations (McIlvane & Dube, 1992). The term Òstimulus control shapingÓis analogous to Òresponseshaping,Óin which new responses are established by gradual changes in the form of existing responses. Stimulus control shaping techniques also have been referred to as ÒerrorlesslearningÓprocedures. SpeciÞc procedures have been labeled, for example, Òfading,ÓÒshaping,ÓÒsuperimposition, or Òdelayedprompting.ÓThe prototypical characteristics of stimulus control transfer procedures are (a) an original discrimination that is within the learnerÕs current repertoire; (b) a target discrimination with stimuli that do not currently control behavior; and (c) a programmed series of gradual stimulus changes that, when successful, result in a transfer1 of stimulus control from the original discriminative stimuli to new stimuli. Stimulus changes can occur in quantitative characteristics, such as their intensity, duration, or size (e.g., Richmond & Bell, 1986; Terrace, 1963a), or in qualitative characteristics like form (e.g., Sidman & Stoddard, 1966). Notably, even minimalist shaping procedures involve stimulus control transfer. For example, the teacher who prompts a response by pointing to the correct choice is attempting to transfer the extant control by the point-prompt stimulus to the teaching materials. A.
Stimulus Control Transfer: Historical Review
Prior to the 1960s, there was no generally effective teaching methodology for many children labeled Òseverely mentally retarded.ÓThings began to change, however, when learning principles derived from basic laboratory research were applied to the development of behaviorally based training methods (Ulrich, Stachnik, & Mabry, 1966). Several projects showed that children could be taught communication and other self-care skills (e.g., Mackay & Sidman, 1968). The children thus became candidates for the same sorts of preacademic and academic training that other children received, much of which entailed various forms of discrimination training. Early on, it became apparent that the discrimination training methods used with lower species would not be effective with many children within a practical time 1 1Our
use of the term transfer reßects the conventional use in the stimulus control literature. However, the term may be misleading in that the original stimulus still controls the response.
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frame (e.g., Ellis et al., 1962; Zeaman & House, 1963). Not only were simple reinforcement methods ineffective for teaching new discriminations, but the error patterns that resulted interfered with discriminations of which the children were clearly capable (e.g., Sidman & Stoddard, 1966; Stoddard & Sidman, 1967). Faced with these challenges, researchers turned to the ÒerrorlessÓdiscrimination procedures that were being studied in nonhuman animal models (e.g., Terrace, 1963a, 1963b). These stimulus control transfer techniques were originally developed in part to examine theoretical questions in discrimination learning (e.g., the role of inhibitory processes), research that challenged the then-prominent theoretical traditions of Hull (1943) and Spence (1956). Such research continued until the key theoretical issues were resolved (see Mackintosh, 1977, and Rilling, 1977, for reviews). To that point, however, few studies had examined stimulus control transfer in its own right (cf. Touchette, 1971). Indeed, Rilling (1977) noted that effecting stimulus control transfer with the procedures available at the time was more of an art than a science. What are the variables responsible for errorless learning? A new series of basic studies began to address this question (e.g., Doran & Holland, 1979; Fields, 1978, 1979; Fields, Bruno, & Keller, 1976). These studies attempted to measure the moment in a shaping program at which stimulus control transfer occurs. Regrettably, this basic research and its nascent theoretical developments were abandoned in favor of new problems that attracted researchersÕattention [e.g., stimulus equivalence (Sidman & Tailby, 1982)]. Research in stimulus control transfer might have died entirely if not for the fact that the procedures proved useful in establishing stimulus control in individuals who were otherwise difÞcult to teach. For example, Lancioni and Smeets (1986) reported an extensive review of stimulus control transfer studies whose target populations were individuals with developmental disabilities. Their review documented over 40 articles and a myriad of transfer-based teaching procedures developed since the late 1960s. Between 1986 and the present, a comparable number of studies aimed at individuals with developmental disabilities have been published. Extrapolating from published studies, the intervention-oriented literature on stimulus control transfer indicates almost universal success with various shaping procedures, particularly delayed-prompt procedures (Berkowitz, 1990; Doyle, Schuster, & Meyer, 1996; see Handen, & Zane, 1987, for the last review). Sidman and StoddardÕs (1967) circle-ellipse program succeeded with more than 90% of those tested, and that level of effectiveness has held up very well over the years. However, we believe that the intervention-oriented literature overstates current knowledge in this area. Despite its many successes, extant stimulus control shaping techniques are not effective with all students and in all teaching applications. For example, as task requirements become more demanding, there often is a decrease in the proportion of successful participants. To illustrate: As form discriminations become more difÞcult (i.e., when the positive and negative stimuli share many
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physical features), the outcomes become highly dependent on shaping technique; simple fading and delayed-prompt tend to have poor outcomes with low-functioning participants (e.g., Oppenheimer, Saunders, & Spradlin, 1993; Schreibman, 1975). For educationally useful procedures like matching to sample, typical prompting techniques may be immediately effective with only about 30Ð50%of participants with moderate to severe mental retardation. For example, Serna and colleagues (1997) summarized results from more than 10 years of matching-to-sample research at the Shriver Center. The focus was on attempts to establish identity matching-to-sample performances in individuals with mental retardation. With standard fading and delayed-prompt, only 32% of participants acquired matching with letterlike forms. Also, shaping procedures that are highly successful in establishing initial discriminations may prove much less effective in teaching discrimination reversals (e.g., McIlvane et al., 1995; cf. Dube, Iennaco, & McIlvane, 1993). The fact that stimulus control transfer programs may be less successful than the intervention-oriented literature suggests, even under optimal laboratory conditions, leads us to question the extent to which the underlying processes responsible for transfer are fully understood. Indeed, extant literature indicates to us that the most fundamental questions about stimulus control transfer processes have yet to be answered. For example, what accounts for failure to transfer during shaping procedures? Are failures of programmed teaching procedures due to stimulus control transfer failures or merely to the wrong type of transfer? Do the gradual stimulus changes in transfer programs produce gradual changes in stimulus control or does transfer actually occur more rapidly than previously assumed? Our view is that the guiding perspective of the applied work, and the resulting historical trends, inadvertently worked against solving the key scientiÞc problems as follows. Most studies on stimulus control transfer have taken an intervention-oriented perspective. In such a perspective, the primary focus is on the development of effective intervention procedures; analyses of underlying behavioral processes is secondary to the goal of producing positive learning outcomes. Within this tradition, research often has been concerned with only a narrow range of target skills (e.g., individual letter discriminations) in participants whose behavioral capacities and entry skills were not well speciÞed. Because the consumers of such research hoped to alleviate problems that were signiÞcant in human terms, a rush to apply effective techniques to real-world teaching problems was understandable. In general, an intervention-oriented perspective led researchers away from direct analysis of the behavioral processes involved in stimulus control shaping and transfer. For example, accounts of shaping failures have focused on participant characteristics, such as the greater tendency of individuals with mental retardation to demonstrate Òstimulusoverselectivity,Óan attentional deÞcit (Lovaas, Koegel, & Schreibman, 1979). Because children tended to be overselective, and overselectivity was deemed incompatible with stimulus control transfer, intervention-oriented
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researchers prioritized procedures that did not require transfer, as they conceptualized it (e.g., Schreibman, 1988). This concern led researchers to explore Òcriterionrelated, within-stimulus prompting,Ówhich was initially hailed as a critical advance in stimulus control research (Lancioni & Smeets, 1986). In such prompting procedures, teaching proceeds by greatly exaggerating some stimulus difference that will be relevant at the Þnal performance and then gradually reducing the differences between the stimuli to be discriminated. Such procedures are typically used to teach ÒdifÞcultÓdiscriminations. For example, criterion-related procedures have been used to teach young children to discriminate similar, often confused, letters of the alphabet (e.g., b vs d, m vs n, and p vs q). There are fundamental problems with the criterion-related approach, however. First, the procedure requires the teacher to identify a discrimination within the domain of interest that the participant already can perform, a requirement that proves difÞcult with some individuals with intellectual disabilities. Thus, these procedures are useful mainly for reÞning existing discriminations, not teaching entirely new ones. Second, in most cases, these procedures do not actually eliminate the stimulus control transfer requirement. For example, whenever a criterion feature is initially exaggerated and the exaggeration is reduced through shaping (e.g., Rincover, 1978), stimulus control transfer is required. Finally, these procedures are effective only for a very narrow range of teaching applications. For example, they have nothing to contribute to the critical problem of cross-modality prompting, as would be needed in a program that transfers control from visual to auditory stimuli (e.g., Serna, Stoddard, & McIlvane, 1992; Stoddard & McIlvane, 1989). Viewed in hindsight, the intervention-oriented approach did contribute useful techniques for teaching certain types of discrimination skills. However, it did not lead to a generally applicable, broadly effective technology for teaching a wide range of discrimination skills, as was originally hoped. Moreover, the work on criterion-related prompting proved to be a scientiÞc dead end for those interested in understanding stimulus control shaping at a more basic level. In our opinion, the hoped-for technology will only come about via improving understanding of the underlying processes. B.
Stimulus Control Transfer Procedures and Processes
Historically, transfer procedures have been classiÞed in terms of the formal characteristics of the programmed stimulus changes (e.g., within- vs extra-stimulus cues and superimposition vs fading; Lancioni & Smeets, 1986). An unintended consequence of such classiÞcation schemes has been limited attention to the different types of stimulus control shifts that are required for successful program completion. We Þnd it more useful to distinguish between interdimensional and intradimensional transfer of control. In the former, the critical stimulus dimensions of the initial and target discriminations are different; in the latter, they are the same.
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a
b
c
d
e
f
g
h
FIG. 1. Selected program steps from Sidman and StoddardÕs (1966) circle-ellipse teaching program.
1. INTERDIMENSIONAL TRANSFER OF STIMULUS CONTROL The early stages of Sidman and StoddardÕs (1966, 1967) circle-ellipse discrimination program illustrate interdimensional transfer (Terrace, 1963b). For the original discrimination, their participants quickly learned to press a brightly lit white key with a black circle (S+), and not to press plain dark keys (S−), as shown in Fig. 1. Over a series of trials, the dark keys were gradually illuminated until they were as bright as the key with the circle (Figs. 1bÐ1d). Then, ßat ellipses were introduced on the now bright keys. At Þrst, the ellipses were very faint (Fig. 1e), barely visible on the plain bright key background. Ellipse intensity was gradually increased until it was the same as the circle (Figs. 1fÐ1h). Thus, initial stimulus control by the dimension of brightness (selecting a bright vs dark key) was transferred to the target dimension of form (selecting a circle and not an ellipse). Other examples of interdimensional transfer include TerraceÕs program to transfer control by different colors to different orientations of a white line on a black background (Terrace, 1963b) and transfer of control by differences in intensity to differences in size (Doran & Holland, 1979). Interdimensional transfer is common in intervention-oriented research. A common example is the attempt to transfer control from discrimination of the presence vs absence of an initial prompt such as the teacherÕs pointing Þnger to target discriminations between different forms such as letters, words, or pictures. 2. INTRADIMENSIONAL TRANSFER OF STIMULUS CONTROL A follow-up study by Sidman and Stoddard (1966) illustrates intradimensional transfer. The goal of this program was to reverse the circle (S+) vs ellipse (S−) discrimination so that subjects selected the ellipse and not the circle. The reversal
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was accomplished by a program that gradually altered the physical features of the original forms in the following four successive program phases: (a) the circle was transformed into a square by gradually ßattening the sides and adding corners; the result was a square vs ellipse discrimination (S+ vs S−); (b) the ellipse was changed into a circle (square vs circle); (c) the square became a ßat rectangle (rectangle vs circle); and (d) the rectangle became an ellipse (ellipse vs circle). When given the Þnal version of this program, children with mental retardation accomplished a complete discrimination reversal with few or no errorsÑa striking example of the power of stimulus control shaping procedures. Other examples of intradimensional transfer include Zygmont and colleaguesÕ(1992) program to transform identity matching to sample into nonidentity-based (arbitrary or symbolic) matching by gradually altering the form of the initial samples until they no longer physically matched the comparisons. Another example is Smeets and colleaguesÕ(1984) program to transfer control from pictures to printed words by gradually altering the pictures. C.
Existing Accounts of Stimulus Control Transfer
Substantial research has sought basic process-level accounts of interdimensional transfer (e.g., Dinsmoor, 1985; Doran & Holland, 1979; Fields, 1978, 1979; Fields et al. 1976; Terrace, 1963b; Touchette, 1971). By contrast, research on intradimensional transfer has been less ambitious theoretically. Therefore, we emphasize the former in the remainder of this section. As noted earlier, stimulus control transfer research initially addressed theoretical questions (e.g., the role of excitatory vs inhibitory processes in discrimination learning, Terrace, 1963a, 1963b). These studies gave way to research on the transfer process itself. The effort focused on determining the point in a shaping program at which control transferred across dimensions. Several labs developed procedures for measuring the Òmomentof transferÓ(Doran & Holland, 1979; Fields 1978, 1979; Fields et al., 1976; Touchette, 1971). They assumed that at some point in the transfer program, stimulus control would be governed by both the original and target stimuli, but subsequently, control would be transferred to the target stimuli alone (Ray & Sidman, 1970; Sutherland & Mackintosh, 1971). This assumption found empirical support in studies by Fields and colleagues (1976) with pigeons and Doran and Holland (1979) with typically developing children. This line of research contributed to the basic understanding of interdimensional transfer by relating processes in stimulus control shaping to available theories. For example, the apparent necessity for dual control led naturally from theories of compound stimulus control and blocking (Kamin, 1969; Mackintosh, 1975; Rescorla & Wagner, 1972). Blocking occurs when previous conditioning to one stimulus prevents or attenuates conditioning to a second stimulus that is compounded with it. Fields and colleagues (1976) noted similarities between stimulus fading procedures and the conditions that produce blocking. They hypothesized that (a)
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previous training with the initial discrimination blocked control by target stimuli when they were Þrst introduced; and (b) blocking decreased as fading progressed, permitting the acquisition of control by the target stimuli. According to Fields (1978), attenuation of the original stimuli gradually makes the target stimuli better predictors of reinforcement. Fields (1978), (1979) showed that a manipulation known to reduce blocking (i.e., decreasing the intensity of the blocking stimuli) could be applied successfully to improve transfer. SpeciÞcally, reducing the intensity of the original stimuli prior to introduction of the target stimuli resulted in faster transfer. Despite this success, however, a sustained research program to continue analytical efforts was not forthcoming. Many questions remained unanswered. For example, what accounts for dual control of the original and target stimuli? What accounts for failures of interdimensional transfer? More recently, theoretical articles by Dinsmoor (1985, 1995) have emphasized the role of attending and observing behavior in transfer. Observing behavior Òincreases the subjectÕs contact with the relevant stimuli and decreases its contact with those that are not relevantÓ(Dinsmoor, 1985, p. 367). For example, during discrimination training, the participant is likely to observe S+ prior to responding to it. Thus, both observing behaviors and the terminal motor response are reinforced in the presence of S+. During S− presentations, neither observing nor the terminal response is reinforced. What role does observing play in stimulus control transfer? Consider the form/ no-form portion of Sidman and StoddardÕs circle-ellipse program. Initially, the bright key (i.e., the most salient stimulus in a display of otherwise dark keys) encourages observing and attending. Superimposed on the key is a form, the circle, that also is likely to be observed. All such observing is reinforced when the participant touches the key. By contrast, the dark keys do not encourage observing or touching; instead, the dark keys become discriminative for observing other keys. As the dark keys become gradually brighter, according to DinsmoorÕs analysis, any responses to them (observing or touching) are extinguished. Because the bright key is highly salient, Dinsmoor would argue, the brightness difference initially blocks stimulus control by the circle, and something is required to reduce the blocking effect. That something is the gradual increase in brightness of the dark keys that reduces the brightness difference between the S+ and S− keys and, hence, the blocking effect. When all of the keys are equally bright, the basis for an intensitybased discrimination is eliminated and responding is controlled at some point by the other stimulus that is observed prior to reinforcement (i.e., the circle). Loosely speaking, the participant comes to look for the circle. How would the circle-ellipse discrimination be established under DinsmoorÕs reasoning? Subsequent observations of keys without circles are extinguished because no circle is found. As ellipses are faded onto the S− keys, observations of them are not reinforced for the same reason. Late in the program, therefore, any ellipse observations are not reinforced, while circle observations continue to be reinforced. Thus, control of observing (and associated responses) is effectively
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transferred from the originally controlling brightness difference to some aspect of the circle-ellipse difference. How does the gradual introduction of the ellipses Þt in with DinsmoorÕs observing analysis? Although he has written little on this, one readily sees that fading in the ellipses creates and extends an S− stimulus class. That is, each observation of a key without a circle occasions a look to another key until the circle is found. Over trials, the class of stimuli that occasion looking away is gradually expanded, ultimately encompassing the fully distinct ellipse. In our view, Dinsmoor has captured much of the best thinking in stimulus control transfer since the 1960s. His account of transfer is elegant and plausible. However, no one thus far has explicitly tested it (or even questioned it to our knowledge). Has stimulus control transfer thus been explained? In our view, the answer is ÒNo.Ó While Dinsmoor has an account of stimulus control transfer successes, he has not addressed the problem of transfer failures, which are often encountered in work with participants with intellectual disabilities. We next propose a revised attending account, which challenges some of the accepted assumptions described above. D.
A Revised Account of Stimulus Control Transfer
Three primary assumptions underlie the account offered by Dinsmoor and others. The three are presented below, along with our revised assumptions. 1. COMPOUND CONTROL The Þrst assumption is that, to achieve interdimensional transfer, one must Þrst gain stimulus control by a compound consisting of the original stimulus and the stimulus to which one is attempting to transfer control. On this assumption we agree. In addition, we emphasize the importance of the class of behaviors that comprise attending that allows the target stimuli to gain control (e.g., orienting and observing). 2. GRADUAL TRANSFER The second assumption is that transfer of stimulus control must occur gradually (Dinsmoor, 1995; Fields, 1978). We do not agree with this assumption. Instead, our contention is that conditioning to at least some aspect(s) of the target stimulus may occur rapidly, perhaps even in a single trial. A study by Stoddard, Serna, and McIlvane (1994) supports this notion. Fifty-nine typically developing children, ages 2Ð0(yearsÐmonths)to 3Ð11were studied. They were exposed to one of three discrimination procedures that might teach them to discriminate a circle from an ellipse. Initially, all children were presented with the Þrst step of the circle-ellipse programÑa bright key with a circle (S+) vs eight dark keys (S−). Then the incorrect keys became gradually brighter until all keys, including the one with the circle, were equally bright. At this point, all participants demonstrated the circle vs no-form discrimination. Could the participants now discriminate the circle from
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ellipsesÑform stimuli that are similar to the circles? Three subsequent conditions designed to answer this question were compared. One was the circle-ellipse fading program that had succeeded with hundreds of individuals previously. However, the other two did not involve ellipse fading. One condition merely advanced children to the Þnal circle-ellipse test; the other alternated trials with the circle alone with Þnal performance trials. The surprising Þnding was that all three procedures produced very similar results. As expected, the fading program produced few errors. However, the other two program conditions also produced few errors; several of the children in the Þnal-discrimination program showed immediate discrimination, and most of the remaining children did so after only one, two, or three errors. Thus, the gradual ellipse fading was apparently unnecessary for 2- and 3-year-old children. Can rapid conditioning also be routinely achieved in individuals with severe mental retardation? Two studies (Dube, McIlvane, & Green, 1992; Dube & Serna, 1998) asked whether the discrimination learning of such individuals could be improved to the point that minimal shaping would be necessary. Early in training, extensive stimulus control shaping was provided for simple discrimination problems. Across a lengthy series of problems, progressively less shaping was provided (Òfading out the fadingÓ).It was found that most participants could be brought to the point where shaping was no longer necessary. It proved sufÞcient to provide a single form vs no-form trial (analogous to the circle vs blank-key discrimination in the circle-ellipse program). Such rapid conditioning cannot be explained by accounts of acquisition and transfer that depend on gradual ÒstrengtheningÓor ÒweakeningÓof stimulus control (e.g., Zeaman & House, 1979). Indeed, such accounts were formulated to explain the gradual learning typically observed in nonhumans and humans with developmental limitations. New accounts must be developed to explain rapid conditioning. In our view, the logical starting point is the ÒhypothesistheoryÓoffered by Levine (1965) to account for learning sets. Brießy, Levine argued that the participant in a discrimination learning situation might develop several ÒhypothesesÓ about the cues that might be relevant to problem solution. Different hypotheses would be conÞrmed or disconÞrmed by trial outcomes. Hypotheses that paid off reliably would be adopted on subsequent problems; their exclusive use might account for rapid discrimination learning. Central to this account was the notion that, early in training, different hypotheses occurred on different trials, to be selected by reinforcement contingencies. Such an account is consistent with our explanation of how failures to transfer can occur, as we describe next. 3. TRANSFER PROGRAM FAILURES A long-standing assumption has been that when a transfer program fails, no transfer of stimulus control took place. Our view is that low accuracy scores on target discriminations do not necessarily mean that no transfer has been effected.
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Both the blocking phenomenon early in transfer and the failure to exhibit the target discrimination can be explained not in terms of the failure of stimulus control to develop, but in terms of the development of stimulus control different from that expected by the experimenter/teacher. This notion is consistent with the concept of the stimulus control topography (SCT), which was Þrst proposed by Ray (1969) to deal with problems of selective attending. McIlvane and Dube (1992) reintroduced and expanded the SCT concept. Brießy, a SCT refers to the controlling relation between behavior and the physical features, structure, and other properties of a stimulus. For example, if a participantÕs behavior is controlled at one moment by some aspect of the form of a given stimulus and at another moment by its position in space, then these are two distinct topographies of stimulus control (Iversen, Sidman, & Carrigan 1986). Very recently, we began the process of developing a formal theory of stimulus control acquisition and transfer in which the SCT concept plays a central role. We term it stimulus control topography coherence theory (McIlvane, Serna, Dube, & Stromer, 2000). At its core, coherence theory states merely that many unexplained phenomena in stimulus control acquisition or transfer can be traced to a lack of coherence between the SCTs that the experimenter/teacher intends to generate and the SCTs actually generated by a given set of contingencies. Moreover, we suggest that SCT coherence is especially difÞcult to achieve with developmentally limited individuals (i.e., young children and individuals with developmental disabilities) because the experimenter and the research participant operate at different levels of neurobehavioral development. Apparent ignoring of stimuli speciÞed as relevant by the experimenter may instead be due to masking of control by higher frequency SCTs that are irrelevant from the experimenterÕs viewpoint (Mackintosh, 1977). Special contingencies and/or training procedures may be necessary to demonstrate the masking effect and/or to increase the frequency with which participants respond according to the SCTs intended by the experimenter: One such procedure, the delayed S+ procedure (McIlvane, Kledaras, Dube, & Stoddard, 1989), is illustrated in Fig. 2. Condition A illustrates an intentionally difÞcult discrimination problem. Two forms are displayed which are identical in all aspects but one. The difference deÞnes the S+. In Fig. 2, the difference is the color of the key. The darker key is deÞned as S+ and the lighter one is S−. Although the task is trivial from the experimenterÕs standpoint, it proves very difÞcult for many individuals with mental retardation. Many adopt position preferences, while others show asymptotic above-chance accuracy scores. In Condition B, the contingencies are altered. Every trial begins with S- stimuli on both keys (trial state 1, or TS1). The appropriate response is to wait a few seconds until one stimulus becomes different (TS2). Failures to wait merely extend TS1. The main question is how participants respond on the early Condition B trials. How often do they respond during TS1 and how accurate is TS2 responding?
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FIG. 2. The delayed S+ procedure. Condition A illustrates the original discrimination; Condition B illustrates Trial State 1 (TS1) and TS2 of the procedure.
Figure 3 shows representative data like that collected for many individuals with mental retardation. Filled boxes show accuracy scores obtained in four Condition A sessions and six Condition B sessions (TS2). Open boxes show percentage of trials with TS1 responses. As Fig. 3 shows, the poor accuracy scores during Condition A did not predict the subsequent high accuracy in Condition B. Sometimes, participants make no TS2 errors at all, suggesting that the initial poor accuracy scores did not mean that the participant had not attended to the stimulus differences during Condition A. Recent data from a study in the Shriver laboratories (Serna & McIlvane, 1999) illustrates more directly the relation between attending and the development of SCT coherence. In this study, participants with mental retardation were Þrst trained to use an eye-tracking device (ISCAN Corp., Burlington, MA). The imaging components of the device are mounted on a lightweight headband, and an autocalibration system allows eye tracking with the effects of extraneous motion removed. The ISCAN System produces a real-time video image of the participantÕs Þeld of view, with a superimposed cursor indicating the point of gaze. In the Þrst experiment, we sought to answer two questions: (1) Can we distinguish observing behavior directed toward speciÞc features within form stimuli? and (2) Can we detect changes in observing behavior patterns across experimental sessions? The participant was presented initially with red and green S+ and S− stimuli; her mean accuracy was 90% across two sessions. She then was presented
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FIG. 3. Typical discrimination baseline (Sessions 1 to 4) and acquisition (Sessions 5 to 10) data for the delayed S+ procedure. Solid data points describe percentages of correct responding; open data points describe percentages of trials in which a response during TS1 occurred.
with seven sessions of color/form superimposition. The upper portion of Fig. 4 shows the form stimuli. The stimuli have both shared and distinguishing features. The participantÕs mean accuracy was 100% during the color/form superimposition sessions, as would be expected given the previous control established by color. We then assessed whether color/form superimposition was sufÞcient to engender immediately accurate form-only performance. It was not. As shown in the left graph of Fig. 4, her accuracy was only 44% in the Þrst form-only session following superimposition (Session 9), though it increased to criterion levels by the third session. Most pertinent to the issue of attending, however, is the eye-tracking data shown in the right graph of Fig. 4. This Þgure shows the percentage of change from baseline (Session 9) in the proportion of observing durations of the critical features. That proportion increased concomitantly with accuracy. By Session 11, it appears that an approximately 100% increase in the proportion of critical-feature observing was sufÞcient to support virtually perfect accuracy. By the Þnal session, that proportion reached 160% of baseline. We also conducted an experiment with another participant with mental retardation that showed changes in observing patterns across form/color superimposition. The manipulations and results are shown in Fig. 5. In Sessions 1 and 2, the participant was given the forms only and the delayed S+ procedure, respectively. In this particular delayed S+ procedure, TS1 consisted of presentation of only the common features for both stimuli. If the participant refrained from responding to the common features for three seconds, all features of the S+ and S− stimuli were then presented. His results were similar to those obtained in the prior experiment;
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FIG. 4. Stimuli used in eye-tracking experiment (upper portion). Session accuracy (in percent) and the percentage of change (from the baseline, Session 9) in the proportion of observing durations of the critical features (lower portion).
accuracy (open circles) following delayed S+ did not improve, but observation of the S+ critical features (bars) increased somewhat. After color-only training (Session 3), the participant received color/form superimposition; in this session, the forms were centered on the color stimuli (Session 4). The participantÕs accuracy was high, but his observation of critical features was not, indicating control
FIG. 5. Proportion of observing durations in which the gaze was directed to the critical features of the S+ (bars) and accuracy (open circles) across three experimental phases. Different patterned bars distinguish conditions within phases (see text).
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by color (gray bar). To encourage attending to forms, in the next session (5) we displaced the forms to the upper left corner of the color Þeld (a manipulation suggested by inspection of his observing pattern). The participant clearly detected the change; there was a disruption in accuracy and an increase in critical-feature observing (dark bar). To recover high accuracy, the forms were again centered in Session 6. We then repeated the form displacement manipulation in Session 7. This time accuracy remained high and critical-feature observing increased further, and this continued even when centered forms were again presented in Session 8. This pattern of data suggested that the Òmomentof transferÓfrom color to form occurred in Session 7, a transfer conÞrmed by the high accuracy when forms were presented alone in Sessions 9Ð11. The results from both experiments make some critical points. The experiments demonstrate the utility of direct measurements of observing behavior for detecting behavioral effects not evident in accuracy measures alone. SpeciÞcally, eye tracking allows one to (a) distinguish between observing behavior patterns directed to different portions of the stimuli and (b) detect changes in observing patterns across sessions. More generally, the results from both the eye-tracking experiments and the experiments with the delayed S+ procedure lead us to question whether low accuracy scores are the best measure of stimulus control development and transfer. In short, our data lend credence to the notion that, for some participants, stimulus control shaping programs fail because the program does not properly control observing and attending.
II.
GUIDANCE OF INITIAL OBSERVING RESPONSES
In the previous section, we presented an analysis of what we believe to be the critical stimulus control requirements for effecting transfer. The reinforcement of attending or observing behaviors directed toward the critical features of stimuli plays a central role in the analysis. But how does one induce attending or observing behaviors in the Þrst place, such that those behaviors can be reinforced? In this section, we present work that demonstrates the application of advances in cognitive and behavioral sciences to the design of methods for ÒguidingÓattention to the critical, or task-relevant, features or stimuli in heterogeneous visual arrays. We demonstrate methods for structuring visual arrays that induce observing and selecting task-relevant stimuli in individuals with mental retardation and the application of these methods to the development of procedures for teaching preacademic skills. Research reviewed in this section is focused on the nature of visual search and identifying the structural characteristics of arrays that ÒguideÓinitial observing responses to the critical stimulus in a visual presentation. Aspects of such environmental guidance are presumed to operate ÒpreattentivelyÓ;that is, largely
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automatically and very early in the processing of visual information (see Soraci et al., 1993). The methodology employed in this pursuit is based on the welldeveloped methods and theory of visual search processes in individuals without mental retardation. The prototypical visual search study involves displayed sets of simple stimuli that vary in systematic and limited ways. For example, a form-based feature-search task may include two forms (e.g., circle and triangle), with one designated as the target (e.g., circle). Over a series of trials, the participant then must indicate, as rapidly as possible without making errors, whether the target is present in the visual array (or not) on each trial. The other critical independent variable is the number of stimuli presented on each trial. Typically, four or more levels of set size are utilized, and they typically vary from 2 to 32. A particular feature (e.g., circle) is believed to be processed preattentively if it is detected with little or no increase in reaction time (RT) as the set size increases (i.e., the slope of the RT × Set Size function is approximately 0). The assumption is that a parallel search of the display occurs; all stimuli are assumed to be processed simultaneously. Alternatively, a positive correlation between reaction time and set size would be indicative of a serial search of the array. A.
Theoretical Issues
Two important theoretical issues regarding visual search are (a) the utility of the parallel versus serial search dichotomy and (b) the relative inßuences of top-down (e.g., cognitive or goal-directed) and bottom-up (e.g., stimulus-driven) processes on search efÞciency. Most theories about the processes involved in visual search share the assumption that only the most basic dimensions and features can be processed in parallel (e.g., Duncan & Humphreys, 1992; Neisser, 1967; Treisman & Gelade, 1980; Wolfe, Cave, & Franzel, 1989). Parallel search by individuals without mental retardation has been demonstrated for dimensions such as color (e.g., Duncan & Humphreys, 1992; Treisman & Souther, 1985), form (e.g., Donderi & Case, 1970; Treisman & Paterson, 1984), size (e.g., Cavanagh, Arguin, & Treisman, 1990), and line orientation ( e.g., Wolfe, FriedmanHill, Stewart, & OÕConnell,1992). The majority of theories regarding the nature of visual search processes (e.g., Neisser, 1967; Treisman & Gormican, 1988) posit that the initial broad-based preattentive processing stage is followed by a more focused serial search of the array to identify the target. Several theorists (Treisman & Gormican, 1988; Tsal, Mairan, & Lamy, 1995; Wolfe, Cave, & Franzel, 1989) believe that the two stages of processing interact in that the output of the preattentive stage provides information about particular items in the display that are most worthy of attention. Thus, the preattentive phase may be considered to provide a cursory yet global analysis of the visual array that guides attention to stimuli most likely to be the predeÞned target. In the
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attentional phase, objects are identiÞed separately according to their conspicuous deÞning features, some of which may have been ÒidentiÞedÓduring the preattentive phase. The usefulness of the distinction between parallel and serial search has been questioned by several theorists (Duncan & Humphreys, 1989; Grunau, Dube, & Galera, 1994; Wolfe, Friedman-Hill, Stewart, & OÕConnell, 1992), however. Wolfe and colleagues (1992) cautioned that it may be more accurate, given present knowledge and difÞculties in interpreting RT × Set Size functions (see Egeth, Jonides, & Wall, 1972; Van Zandt & Townsend, 1992), to discuss the efÞciencyof visual search rather than emphasize the difference between parallel and serial processing. For example, a ßat RT × Set Size function, typically considered to be evidence for a parallel search, could result from serial search that increases in speed as set size increases. Further, Duncan and Humphreys (1989) and Grunau and colleagues (1994) have proposed that efÞciency of search is governed primarily by a continuum of perceived similarity between target(s) and distractors rather than the parallelÐserialdichotomy. With regard to the issue of the relative inßuences of bottom-up and top-down processing on visual search, most recent theories include a role for both, though the relative inßuences of each differs across theories. To this point, visual search has been discussed primarily from a bottom-up perspective in which selection is driven by the nature of the visual array (e.g., search efÞciency is a function of targetÐdistractor disparity). It is important to note, however, that in most visual search experiments utilizing reaction time (RT) as a dependent variable, the target is speciÞed for the participant prior to task administration. This prespeciÞcation of the target may initiate or allow top-down processing to inßuence task performance. Consistent with this possibility, Kinchla (1974) presented an early model that recognized the interplay of bottom-up and top-down processing on most stages of visual search performance. Top-down processes were hypothesized to inßuence performance by predisposing the individual to organize stimuli in particular ways dependent upon the instructional set provided. In support of this contention, PET scan studies (Corbetta, Miezen, Dobmeyer, Shulman, & Petersen, 1990, 1991) have indicated that blood ßow patterns change depending upon whether the target is prespeciÞed. In addition, several recent theories (e.g., Duncan & Humphreys, 1992; Theeuwes, 1992) have incorporated both top-down and bottom-up processes into their explanations for individual differences in visual search speeds. However, whereas Duncan and Humphreys believe that top-down and bottom-up processes inßuence all aspects of search performance, Theeuwes (1992) has argued that top-down processes do not inßuence the preattentional stage of visual processing. Rather, the preattentional stage is stimulus-driven and provides task-relevant information only in arrays with extreme targetÐdistractor disparities that make the target feature highly discriminable. Without bottom-up
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activations of sufÞcient magnitude, attentional processing, which is inßuenced by top-down processes (e.g., goals and search strategies), is necessary to identify the target. Directly pertinent to issues that concern mental retardation researchers, Toates (1998) recently completed a comprehensive review assessing the relative weights given to top-down and bottom-up processes on a multitude of experimental tasks. He argued that weightings are a function of developmental level, efÞciency and quality of neural functioning, and experience, with bottom-up control becoming more prominent as each of these factors is reduced. These are variables expected to differ across individuals with and without mental retardation, with the expected outcome being that the behavior of individuals with mental retardation would be governed to a relatively greater extent by bottom-up processes. If so, individuals with mental retardation would be expected to be more easily distracted by highly salient but irrelevant features of an array (i.e., leading to irrelevant SCTs; see the discussion of attentional capture effects below) and to perform much more poorly than individuals without mental retardation when the feature is not highly salient and can only be detected through a serial search of the array. We have been interested in determining the extent to which each of these processes is operative in guiding attending in individuals with mental retardation and in designing optimal methods for inducing attending to task- relevant features (i.e., encouraging relevant SCTs) and limiting attending to task-irrelevant features. For example, can individuals with mental retardation utilize prior information about the target in a search task to limit attending to particular elements in a multielement visual array? If the behavior of individuals with mental retardation is controlled to a greater extent by bottom-up than by top-down inßuences, then interventions involving manipulations that inßuence the early stages of visual processing (Soraci et al., 1993) may be more effective than procedures requiring more advanced prerequisite skills. Supporting this notion, focused manipulations of the structure of visual presentations have been shown to enhance performances of individuals with mental retardation (Carlin & Soraci, 1993; Soraci, Carlin, & Chechile, 1998). Indeed, it has been shown that the structure of a visual array is a critical factor not only for the detection of similarities and differences among stimuli, but also for the establishment of rule-based behaviors (e.g., Soraci, Carlin, & Wiltse, 1998; Soraci et al., 1991). For example, Soraci and colleagues (1987) demonstrated that oddity learning could occur rapidly following a simple structural change of the visual array presented. Preschool children who failed an initial three-element oddity task quickly demonstrated oddity responding when the number of elements in the array was increased to nine. This manipulation is believed to increase the salience of the odd stimulus, thus making its selection and reinforcement of the correct selection more likely. In addition, these children were able to generalize this performance to three-element arrays and two other stimulus sets.
340 B.
R. W. Serna and M. T. Carlin Visual Search and Individuals with Mental Retardation
In our opinion, the extant literature on visual search processes in individuals with mental retardation is inadequate given its importance for understanding the nature of mental retardation and its relevance for designing effective training procedures. Paralleling the research on errorless learning techniques, there was a ßurry of research relevant to visual search prior to 1980 (e.g., Das, 1971; Hagen & Huntsman, 1971; Rosenberg, 1961; Spitz, 1969; Spitz & Borland, 1971) and relatively little thereafter. Unfortunately, these studies did not employ a standardized methodology, thus complicating comparisons of results across studies. It was fairly clear, however, that visual search performances of individuals with mental retardation and MA-matched controls were affected primarily by the discriminability of the targets and distractors. Recently, empirical and theoretical advances discussed in the preceding section have been applied to the study of visual search in individuals with mental retardation. The rationale for this work is as follows: If individuals with and without mental retardation do not process basic features of stimulus arrays in the same fashion, one would expect marked effects on both and accuracy and speed of responding. For example, inability of individuals with mental retardation to process basic features of visual arrays in parallel would manifest itself in prolonged search times (relative to individuals without mental retardation) that increase as the number of distracting elements increases. Such a difference, if reliable, would be expected to undermine performance on many learning and experimental tasks, particularly those involving speeded performances or capacity demands. Further, identifying the locus of intelligence-related differences on experimental tasks requires understanding the efÞciency of the basic levels of processing on which the target behavior is founded. For example, in the absence of a careful analysis of the preattentional processing requirements of a particular experimental task, intelligence-related differences could be misattributed to deÞcits in attending rather than to inefÞcient preattentional processing. 1. FEATURE SEARCH The initial study of visual search in individuals with mental retardation using a visual search paradigm was conducted by Silverman and Kim (1993). These authors assessed the performances of older adults (i.e., ages 40Ð79) with and without mental retardation on a visual search task involving the presence/absence of a critical feature (e.g., a diagonal line). Results of their feature search task indicated that adults with mental retardation responded more slowly and showed larger RT × Set Size slopes than adults without mental retardation. They concluded that adults with mental retardation exhibit inefÞcient preattentional processing that results in increased demands on attentional processes and decreased search efÞciency.
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Subsequently, Carlin, Soraci, Goldman, and McIlvane (1995) completed a study of intelligence-related differences in visual search for feature targets across multiple dimensions. Participants were 16 individuals with and 16 individuals without mental retardation. Visual search efÞciency was assessed for targets deÞned by color, form, size, and line orientation. For the dimension of color, 15 of 16 individuals with mental retardation and all 16 individuals without mental retardation demonstrated parallel search (i.e., RT × Set Size slopes <5 ms per item), though the overall RTs for the individuals with mental retardation were elevated relative to the RTs of participants without mental retardation. Carlin and colleagues (1995) also identiÞed signiÞcant group differences in search efÞciency (i.e., signiÞcant Group × Set Size interactions) for the form and size dimensions. The search times for the group of individuals with mental retardation increased signiÞcantly with increases in set size, whereas the search times for the group without mental retardation were consistent across all set sizes. Of particular interest was the Þnding of subgrouping within the group of individuals with mental retardation. Approximately half of the individuals with mental retardation demonstrated ßat RT × Set Size functions for form and size, whereas the remainder of the group showed large increases in RT as set size increased. Interestingly, Woods, Sarwar, Deford, and Oross (1995) identiÞed similar subgrouping within a group of individuals with mental retardation for stimuli deÞned by a critical feature (i.e., O vs Q) or gap size (e.g., O vs C). These Þndings indicate that differences exist within groups as well as between groups differing in intelligence. It appears that differences within groups are due to differential sensitivities to the particular stimuli employed, an issue that is discussed further below. More recent investigations in our laboratories have demonstrated two important qualiÞcations to the above results. First, the magnitude of the overall difference in search rates (i.e., the Group main effect) can be reduced through extended practice with the visual search task (cf. Sireteanu & Rettenbach, 1995). Across the span of several hundred trials, the magnitudes of the differences between individuals with and without mental retardation have been reduced by approximately 50% for each of the dimensions tested. This reduction in the magnitude of overall search rates, however, has not altered the slope of the RT × Set Size functions for the two groups. Thus, the speed of both parallel search (i.e., color dimension in which the RT × Set Size function is ßat) and serial search (e.g., form and size) can be enhanced with practice. This magnitude of effect reduction has obvious relevance for the functioning of the individuals involved as speed of information processing is an important correlate of performance on many experimental and educational tasks (e.g., Bors & Forrin, 1995; Deary, 1994; Wickett & Vernon, 1994). Further, in terms of experimental design, it indicates that the groups are not operating at the same skill level initially and that group differences may be overestimated unless procedures are instituted to eliminate the inßuence of such extraneous factors (see also Carlin, Soraci, Hobbs, & Bud, 1999).
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The second qualiÞcation of the results of Carlin and colleagues (1995) is the nature of the subgrouping identiÞed. Subsequent testing of individuals with mental retardation made it apparent that the subgrouping may have been related to the particular features selected for each dimension. Data from subsequent and ongoing studies (discussed below) have indicated that individuals demonstrate parallel and serial search for the same dimension but with differing pairs of features. That is, an individual may demonstrate a ßat function for the form dimension when searching for a hexagon among circles, but a serial search function when searching for a pentagon among triangles. Search functions, therefore, appear to be stimulusspeciÞc rather than dimension-speciÞc (see Duncan & Humphreys, 1992). Subgroups may reßect differential sensitivities to particular stimulus pairings along a single dimension (e.g., color, form, or size), with variability in sensitivity much greater in groups of individuals with mental retardation than in groups of individuals without mental retardation. For this reason, in our subsequent visual search studies we have obtained preliminary search functions for particular stimulus pairs and matched individuals for search mode (rather than the particular stimulus pair used) prior to the formal experimental manipulation. Further, all participants are now provided with extensive practice trials until their search speeds reach an overall asymptote. These methodological changes should provide more reliable and valid estimates of individual differences and their magnitudes. 2. GUIDED SEARCH Our most recent studies have focused on the extent to which search efÞciency can be enhanced via use of a guided-search task (e.g., Wolfe, Cave, & Franzel, 1989). In a guided-search task, the participant is instructed to look for a speciÞc target item (e.g., a blue circle). However, unlike the feature-search task in which nontargets do not share critical features with the target item, some of the elements in each guided-search array share a critical feature (e.g., color or form) with the target. Thus, the shared feature may be used to limit search to a subset of the elements in each array (e.g., all blue items). The ability to inhibit attending to elements that do not share the critical feature(s) would result in increased search efÞciency. That is, through goal-directed (i.e., top-down) control of search, the number of elements could be functionally reduced to the number that share a critical feature with the target. The example arrays in Fig. 6 demonstrate these principles. Assuming the individual is instructed to indicate as rapidly as possible whether a dark circle is present in each array, one can see that a strategy of limiting search to only dark elements would be quite effective. However, if the individual is unable to inhibit attending to Òsearch-irrelevantÓstimuli in each array, then search times would be a more direct function of set size rather than the number of relevant stimuli. To determine whether individuals with mental retardation can limit the scope of visual search, we conducted an experiment which had two phases: (1) a featureÐ search preassessment and (2) a guided search assessment using arrays of the type
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FIG. 6. Example arrays from the guided search study demonstrating the levels of set size (4, 8, 12, and 16) and number of relevant stimuli (2, 3, and 4). The actual stimuli used were red and blue, but are represented in this Þgure as gray and black, respectively.
in Fig. 6. The featureÐsearchpreassessment was designed to identify pairs of forms that resulted in serial search for each participant. This pair of features would then be used for the subsequent guided-search task. As mentioned above, the particular forms that produced serial search varied across individuals. Some participants with mental retardation demonstrated serial search for a circle among squares, whereas others detected the circle very efÞciently. These latter individuals required reduced targetÐdistractordisparities (e.g., triangle vs diamond or hexagon vs pentagon) for serial search to become apparent. After pairs of forms resulting in serial search were identiÞed for each of eight participants with mental retardation, individuals were presented with a guidedsearch task. Color was utilized as the guiding dimension. The colors were red and blue, as all participants demonstrated parallel search for these features on a preexperimental assessment. Figure 6 shows examples of the arrays used on the guided-search task: Red is represented by the gray forms and blue by the black forms. As shown in the arrays, the key independent variables were set size (4, 8, 12, or 16) and the number of relevant stimuli (2, 3, or 4); that is, the number of comparisons of the target color (e.g., blue). For the guided-search task, the target stimulus was identical to that identiÞed during the featureÐsearchpreassessment as
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FIG. 7. Results from the featureÐsearchpreassessment and guided search conditions by set size and number of relevant stimuli. Note that in the guided-search conditions, RTs were a function of the number of relevant stimuli but were not correlated with set size.
resulting in serial search for each individual. If individuals with mental retardation could use prior information about the nature of the target (i.e., top-down processing) to guide attending to task-relevant stimuli and/or limit attending to task-irrelevant stimuli, (a) there should be no effects of set size and (b) there should be a positive correlation between RT and the number of relevant stimuli. Results are shown in Fig. 7. As can be seen, set size did not inßuence efÞciency of visual search on the guided search tasks, but the number of relevant stimuli did have the predicted effect. Search times increased as the number of relevant stimuli increased. The prediction that search times would be shorter in the two- and three-relevantitem conditions than in the four-relevant-item conditions received mixed support. The results were in the predicted direction for the two-relevant-items condition, but not for the other two conditions. The lack of support for this hypothesis in the three-relevant-items condition was not surprising given the possible occurrence of a so-called Òattentionalcapture effectÓin this condition. Attentional capture was deÞned by Yantis (1995) as the state of being Òdrawn to a perceptual object that is not explicitly related to the observerÕs perceptual goals or intentionsÓ(p. 47). Thus, attentional capture is a bottom-up process that can override top-down processing. Theeuwes and Burger (1998) demonstrated that attentional capture occurs in individuals without mental retardation only when there is a single ÒcaptureÓstimulus and when the targets and/or distractors vary across trials. If the target and distractor(s) are speciÞed for the participant and remain constant across trials, then
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attentional capture does not occur. The four-element arrays used in the threerelevant-items condition in our study were of the latter type. All participants knew what the target and distractor stimuli were prior to initiating the experimental task, the stimuli were the same on all trials, and there was only one irrelevant distractor. Thus, based on the research with individuals without mental retardation, an attentional capture effect would not be expected. However, if the hypothesis of Toates (1998) is correct, and the behavior of individuals with mental retardation is controlled more by stimulus characteristics than by top-down processes, an attentional capture effect might be expected. Consistent with ToatesÕhypothesis, the increased RTs demonstrated in the threerelevant-stimuli, set-size-4 condition (see Fig. 7) are consistent with an attentional capture effect occurring for the individuals with mental retardation tested. However, an alternative explanation would be that the ability to limit observing responses to task-relevant stimuli is not absolute. The presence of distracting stimuli still may slightly increase RTs relative to four-element conditions without additional distractors present. This would be consistent with the idea that inhibition of attention to task-irrelevant stimuli may be compromised in individuals with mental retardation (Dempster, 1991; Merrill & Taube, 1996). In summary, the individuals with mental retardation tested appeared able to limit search, for the most part, to the stimuli of the target color and avoid the deleterious effects of the Òoff-colorÓelements of the visual arrays. The occurrence of reductions in search speed based in part on the instructions (e.g., ÒÞnd the blue triangleÓ)demonstrates the important interplay between top-down (e.g., goaldirected) and bottom-up (i.e., stimulus-driven) processing in the visual search performances of individuals with mental retardation. The important question for future research, however, is the relative roles of these two processes.
III.
GUIDING OBSERVING RESPONSES: MATCHING-TO-SAMPLE TRAINING
This section describes an ongoing effort to unite behavior analytic research on stimulus control transfer with cognitively oriented research on visual search. An important goal of this program is to extend research of the latter type to populations who lack the relatively advanced verbal skills that have often been exploited in research on visual search. Regrettably, research that crosses the boundaries between subdisciplines of the behavioral sciences has been fairly rare in mental retardation research. However, we have recently initiated research designed to cross boundaries in an effort to create an interdisciplinary science of environmental guidance of visual search. What follows is a description of one of our initial efforts. While this effort is a work in progress, we hope to illustrate that interdisciplinary efforts can meet with success and thus encourage others to follow a similar path.
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The focus of this work is teaching educationally relevant forms of matching to sample. This pivotal skill is a target of many current programs for teaching individuals with mental retardation. In identity matching to sample, for example, students are presented with an array of two- or three-dimensional stimuli and are required to select the item that physically matches (i.e., is identical to) a sample. Identity matching skills are essential for assessing and teaching basic discrimination, Òreading readinessÓ and symbolic communication skills. For example, when teaching selection-based communication, skills such as objectÐobject and objectÐpicturematching are considered critical to success (e.g., Reichle, York, & Sigafoos, 1991). Educational procedures for establishing reading readiness often require the student to judge whether stimuli such as pictures, forms, or printed letters are the same or different (e.g., Edmark, 1986). Applied behavior analytic (ABA) therapeutic programs aimed at providing early intervention to individuals with autism include identity matching as a critical program step (Lovaas, 1987; Maurice, Green, & Luce, 1996). Further, matching skills are utilized in psychometric assessments, such as the Leiter International Performance Scale (Leiter, 1969), which begins by requiring the test taker to match identical colors, pictures, forms, and other stimuli. Research conducted in our laboratories has been aimed at developing an effective, integrated set of programmed methods for teaching identity-matching skills to individuals with mental retardation. Thus far, we have made substantial progress with individuals with low mental age scores (<5.0 years, typically estimated by the mental age-equivalent score on the Peabody Picture Vocabulary Test-Revised, PPVT-R; Dunn & Dunn, 1981). These efforts were summarized by Serna and colleagues (1997). Mackay, Soraci, Carlin, Chechile, and Dennis (1999) subsequently reported a novel procedure for training matching to sample. The basic procedure is shown in Fig. 8. Individuals initially are presented with a two-choice trial-unique identitymatching pretest. On each trial, the sample is presented and must be touched by the participant. After the sample is touched, the items in the choice array are presented simultaneously, and the sample remains on the screen. Each correct response is followed by praise and an audio-visual display on the computer monitor. Incorrect responses are followed by a 3-s blank screen. Participants in the training study were those individuals with moderate mental retardation who failed to meet even a lenient criterion (e.g., 75% correct) on a matching pretest. The guided search component of the training procedure involved use of multiple, contiguous, and highly discriminable distractors to induce Òpop-outÓof the correct choice. This type of manipulation has been utilized successfully in the context of an oddity task as well (Soraci et al., 1987). The initial, nine-element, training step maximizes the number of distractors presented and the contiguity of array elements, both of which serve to ÒguideÓattention to the target, or matching, stimulus. With each run of three consecutive correct responses at a particular level
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FIG. 8. Demonstration of the match-to-sample training program. With each step in training one comparison stimulus is removed such that the Þnal step in the training sequence is a return to the originally failed two-choice matching task.
of training, the number of distractors (i.e., nonmatching stimuli) is reduced by one (as shown in Fig. 8). Thus, both the number of distractors and contiguity are systematically reduced across trials. If a participant fails to advance to the next training step within 20 trials, then the program reverses to the previously passed training step. The training program ceases either when the individual completes the training sequence successfully or fails to meet criterion at a given training step twice. Thus, the procedure is designed to establish control of responding initially by guiding attending to the correct match, with control of responding transferred to the identity relation across training steps. Note that the critical component of this procedure is use of procedures suggested by the visual search literature to control observing behavior and thus to encourage stimulus control transfer. This approach is consistent with an assertion made earlier, namely that effective control of observing behavior could result in very rapid transfer of stimulus control. Operating as designed, the procedure could be completed errorlessly and quickly (i.e., 24 trials). Moreover, if successful, this method potentially offers efÞciency advantages over the more complex, technically demanding procedures that were reported by Serna and colleagues (1997). We Þrst assessed the efÞcacy of this training procedure with an identity-matching task involving Þve forms (i.e., circle, triangle, rectangle, square, and hexagon). Participants were 12 individuals with mental retardation. Results are shown in
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R. W. Serna and M. T. Carlin TABLE I IDENTITY MATCHING RESULTS FOR 12 INDIVIDUALS WITH MENTAL RETARDATION Subject
% Pretest
Training success
No. of training trials
% Post
% Maint.
1 2 3 4 5 6 7 8 9 10 11 12
40 55 38 35 30 46 35 60 33 50 50 55
Yes Yes Yes Yes Yes Yes Yes No Yes No Yes No
26 91 27 24 29 85 24 Ñ 25 Ñ 105 Ñ
100 35 100 100 92 70 100 Ñ 100 Ñ 100 Ñ
100 Ñ 100 100 100 60 100 Ñ 100 Ñ 100 Ñ
Table I. As can be seen, 9 of the 12 successfully completed the training sequence and 7 of the 9 passed a two-choice match-to-sample posttest with the same stimuli and demonstrated maintenance of the matching response across several weeks or months. Six of the 9 individuals that completed training successfully did so with Þve or fewer errors throughout the course of the training. The 3 individuals who did not complete the training sequence all failed to pass the initial nine-element stage of training. Thus, it appears that the present procedure did not effectively guide the search for some individuals. Perhaps they were less sensitive to the differences (i.e., targetÐdistractor disparities) among the Þve forms utilized and thus did not experience a Òpop-outÓof the matching stimulus from the surrounding comparisons at the outset. In revising the program, it may prove helpful to devise methods for obtaining individual search functions for particular sets of features, as was done in the visual search studies above. Given our Þrst success, we have been working recently to develop a similar procedure for training arbitrary- matching relations. In arbitrary matching, the sample and correct comparison are not physically identical. Examples include matching pictures to printed words. We have also been conducting research on tasks such as matching visual stimuli to dictated names, which require not only effective visual search but also cross modality matching. Both types of tasks have proven very difÞcult to teach to individuals with moderate and severe mental retardation, often requiring extensive, sometimes protracted, stimulus control shaping (e.g., Carr, Wilkinson, Blackman, & McIlvane, 2000; Zygmont et al., 1992). While we are still in the exploratory stage of this effort, we have already met with some success. For example, we have begun a study of auditoryÐvisualmatching with two individuals with mental retardation. The stimuli are shown in Fig. 9. Each successfully
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FIG. 9. Depictions of the three wordÐpicturerelations utilized in the auditoryÐvisualmatching pilot study.
completed training quickly (i.e., 34 and 55 training trials; minimum possible = 32) and with few errors (94 and 89% correct during training). Further, each passed (i.e., >80% accuracy) a subsequent two-choice matching-to-sample posttest. Importantly, accuracy rates for these two participants on the Þrst four steps of the training procedure (i.e., the assumed perceptual guidance stages) were a combined 96.3%. This provides strong support for the power of the guidance manipulation, as the correct choices were novel objects matched to novel ÒwordsÓthat had no prior learning history. We conclude with an example of how other procedures that take into account advances in guiding visual attention to teach difÞcult discriminations might be constructed. Consider the letterlike target discrimination shown in the upper portion of Fig. 10. Each stimulus consists of four strokes, three of which are identical (i.e., those forming the triangle). They differ only by the straight vs angled stroke. Past studies (e.g., Geyer & DeWald, 1973; Gibson et al., 1962) have shown that this type of discrimination is difÞcult for developmentally limited individuals, largely because of the similarity between the stimuli. In our laboratories, ongoing research shows that the discrimination is a difÞcult one for individuals with mental retardation as well, even when one can discriminate the critical differences presented alone. The problem that must be solved is twofold: First, how can attending be directed toward the critical differences such that observing and selection responses can be reinforced? Second, how can attending to the critical differences be maintained in the face of prominent similarities? A combination of procedures described in this chapter could be constructed. For example, to guide attention toward the angled stroke, we might begin with the guided-search task, as shown in the middle portion of Fig. 10. Initially, the task would utilize a nine-element array and the number of distractors would be reduced to one across trials (as was done in the match-to-sample program described above). Once the straight vs angle discrimination is established, the noncritical features could be introduced with the delayed S+ procedure, as shown in the lower portion of Fig. 10. Similar to
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FIG. 10. Form discrimination (upper portion), guided search task (middle portion), and delayed S+ procedure in hypothetical discrimination-training procedure.
the delayed S+ procedure described earlier, trials initially would consist of two states: In the Þrst trial state, identical noncritical features (the triangles) would be presented to the participant simultaneously in an effort to extinguish responding based on those features; the delayed S+ task would require that the participant refrain from responding for 3 s. When that requirement is met, the second trial state commences; the full stimulus is presented. Once accuracy reaches an acceptable criterion, the target stimuli would be presented alone. Thus, through the combined application of procedures designed to (a) focus attention on critical features of a stimulus and (b) extinguish responding to irrelevant features, a particular target discrimination may be established more rapidly and with fewer errors.
IV.
SUMMARY AND CONCLUSIONS
We have selectively reviewed behavior analytic research on guiding visual attending to critical features of stimuli in discrimination learning and described its bifurcation into two streams: one concerned with basic questions related to transfer
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processes and the other mainly with developing effective intervention procedures. Although the former has slowed to a trickle, we believe it is time to revitalize basic work in stimulus control transfer and reexamine its long-standing assumptions. Toward that end, we reviewed historical accounts of transfer and described several Þndings that raised questions about accepted principles of stimulus control shaping and transfer. Findings of rapid conditioning with individuals with severe mental retardation led us to question whether transfer needs be the gradual process that has been traditionally assumed. Data from experiments with the delayed S+ procedure and eye-tracking technology suggest that failures of stimulus control shaping programs may be the result of failures to control observing and attending. These points were reinforced by the research on visual search. The work reviewed indicated that, although individuals with mental retardation may be inefÞcient in their search processes, their efÞciency can be greatly enhanced via manipulations of the structure of the visual array. SpeciÞcally, efÞciency was shown to be a function of experience with the task and targetÐdistractordisparity, and individuals with mental retardation were able to limit attending to a small subset of critical elements in the visual array when a guided-search task was utilized. These results demonstrate the important interplay between top-down and bottom-up processing in the search performances of individuals with mental retardation. The ultimate goal of this basic research on search efÞciency for practice is to identify structural variables (e.g., targetÐdistractordisparities that induce Òpop-out,Ócontiguity, and color guidance) that will guide attention to the target stimulus in a visual array, thus making its selection more likely. The matching-to-sample training procedures described in this chapter represent one effort to merge the streams of research on stimulus control transfer and visual search. The training data demonstrate that the numbers of errors and total trials needed to establish new identity-based and arbitrary relations may be reduced when structural aspects of the visual array that control observing responses are considered. This is consistent with much previous work that has shown that the internal structure of individual stimuli (e.g., Carlin et al., 1993) and global structure of multi-stimulus arrays (e.g., Soraci & Carlin, 1992) can be manipulated to enhance the performances of individuals with mental retardation on a variety of tasks. The literatures we reviewed and new research presented here illustrate that what might be thought of as immutable observing and attending ÒdeÞcitsÓare ultimately modiÞable. For example, in the eye-tracking experiments described above, each participant demonstrated changes in the efÞciency of their observing patterns (i.e., increased observing of the critical features of stimuli). Indeed, the history of stimulus control research has shown that better teaching and testing methods reveal unsuspected capacity in individuals with developmental limitations (e.g., Sidman & Stoddard, 1966). We also showed that search times to identify the presence of a predeÞned form could be greatly reduced when color was utilized as a ÒguidingÓdimension and that this concept can be applied to the design of efÞcient
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training procedures. Granted, it is conceptually difÞcult to come to terms with whether training merely brings the participant under the control of stimuli speciÞed as relevant by the experimenter (i.e., increasing stimulus control topography coherence) or whether such training actually helps change attentional processes. Such issues have concerned generations of behavioral and cognitive scientists and will not be deÞnitively resolved in the immediate future. Nevertheless, the ability to modify observing and attending behaviors will likely have a positive impact on our ability to design effective and efÞcient discrimination training methods. Moreover, we anticipate that the most fruitful basic research on establishing new stimulus control with individuals with mental retardation is likely to be accomplished from cross-paradigmatic research of the type suggested in this chapter.
ACKNOWLEDGMENTS Manuscript preparation and the research described in this chapter received support from the National Institute of Child Health and Human Development Grants HD 25995 and HD 32049. We gratefully acknowledge William J. McIlvane for generous support and guidance during the preparation of this chapter. We also gratefully acknowledge William V. Dube, Joseph Spradlin, and Salvatore Soraci for helpful comments on earlier drafts of this chapter. In addition, we thank Kristin Lombard, Debbie Flusser, Kevin Farren, Aranya Albert, Jason Langlois, Christina Strawbridge, and Raquel Loiselle for help conducting the research described in this chapter and for help in the manuscript preparation.
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Index
A Abuse ecological model, 148 sexual, 102Ð103,111Ð113,157 social learning theory, 148 Active support model, for residential services, 253 Adults, MR, mental health problems anxiety disorders, 217Ð218 broad-spectrum studies, 215Ð216 challenging behavior, 218Ð219 depression, 217Ð218 diagnosis, 222 diagnostic approaches, 223Ð224 diagnostic criteria, 224 diagnostic instruments, 224Ð225 informant interviewing, 229 medication, 230Ð231 methodological issues, 219Ð220 MR interviewing, 228 needs, 229Ð230 PASÐADDschedules, 225Ð228 psychological treatments, 231Ð232 psychoses, 217 service organization, 233Ð234 service training, 234 Affect, in MRDD gullibility, 110Ð111 AfÞliation, MANOVA analysis, 88, 93 Anxiety disorders, in MR adults, 217Ð218 Attainment, MANOVA analysis, 93 Attention defect approach, 300Ð301 methodological research problems, 301Ð303 in MRDD gullibility, 110Ð111 Attractiveness, in SparksÕs theory, 152Ð153 Autonomy, MANOVA tests, 88
B Barnum effect, and gullibility, 104 Basic protections, and personal outcomes, 80 Behavior challenging, 22, 212Ð215,218Ð219, 268Ð271 cognitive therapy, MR adults, 231Ð232 development, and etiology, 306Ð308 gullible, see Gullibility in quality of life measurement, 61 self-determination, 32Ð36 social, in victimization, 156 Behavior therapy, MR adults, 231 Beliefs efÞcacy beliefs, 110 New Age, 114 Beyond Freedom and Dignity, 4 Buildings, for residential services, 255Ð256
C Capacity, in self-determination, 28 Causal agency, 31 Challenging behavior as mental health problem, 212Ð213 and psychiatric disorders, 213Ð215,218Ð219 in residential services, 268Ð271 Children, with MR parent, 177Ð180,186Ð189, 191, 201 Choices in MR availability, 19Ð20 preference assessment, 20Ð22 and problem behaviors, 22 research, 18Ð19
359
360 Choices (cont.) and self-determination, 8 in victimization, 143Ð145 Christianity, HeavenÕs Gate differences, 115 Clinical interviewing informants, 229 MR people, 228 Cognitive behavior therapy, MR adults, 231Ð232 Collective self-determination, 2 Communication, in MRDD gullibility, 108Ð109 Community placements for intellectual disabilities, 254Ð255 outcomes, 272Ð283 Competence, MR parent assessment, 192Ð196 deÞnition, 189Ð190 related factors, 190Ð192 Competence-inhibiting support, MR parent, 198 Competence-promoting support, MR parent, 198 Context, for MR parents, 200Ð201 Control deÞnition, 7Ð8 stimulus control transfer, see Stimulus control transfer Cost reduction programs, in residential services, 289Ð291 Cost of services, and personal outcomes, 80 The Council on Quality and Leadership in Supports for People with Disabilities, 75Ð77 Credulities Past and Present, 114 Credulity in cult membership, 113Ð116 deÞnition, 102 and everyday illogic, 125Ð126 as evolutionary mechanism, 121Ð122 in false confessions, 117Ð119 in humor, 113 from lack of knowledge, 126Ð127 from low social intelligence, 127Ð129 in practical jokes, 113 as psychopathology, 124 in scams and frauds, 116Ð117 in sexual abuse, 111Ð113 as speciÞc LD, 122Ð124 Crime, vulnerability reduction, 156Ð158 Criminal victimimization, in MR offense types, 140Ð142 prevalence, 137Ð140
INDEX
Cult membership, credulity and gullibility roles, 113Ð116
D DASH, see Diagnostic Assessment for the Severely Retarded Data analysis MR verbal data, 200 Personal Outcome Measures, 82Ð83 Decision making, in MR, 16Ð18 Defect approach, attentional problems, 300Ð301 Deinstitutionalization, in residential services, 288Ð289 Dependent variables, for Personal Outcome Measures, 81Ð82 Depression, in MR adults, 217Ð218 Determinism, and self-determination, 3Ð4 Development, MR persons, 313Ð316 Developmental approach, to MR, 303Ð305, 308Ð309 DHA, see District Health Authority Diagnostic Assessment for the Severely Retarded, 225 Disabilities and funding source, 84Ð85 and gullibility, 129Ð132 intellectual, see Intellectual disabilities learning, 122Ð124 and living arrangement, 85Ð86 NLD, 123 and organization size, 86Ð88,93, 97 in quality of life, 62Ð64 and self-determination, 8Ð10 Discrepancy analysis, quality of life, 60 Discrimination learning, in MR overview, 322Ð323 stimulus control transfer compound control, 330 existing accounts, 328Ð330 gradual transfer, 330Ð331 history, 323Ð326 interdimensional transfer, 327 intradimensional transfer, 327Ð328 program failures, 331Ð336 Disorders anxiety, in MR adults, 217Ð218 psychiatric, and challenging behavior, 213Ð215,218Ð219
361
INDEX
Disposition, 30 District Health Authority, for community placements, 254
E Ecological model, abuse, 148 Ecosystems model, self-determination, 23Ð26 Einstein Parent Screen Instrument, for MR parenting, 193 Empowerment psychological, in self-determination behavior, 33Ð34 self-determination as, 10 Environment, in MRDD gullibility, 107 Epidemiology, MR parents and MR children, 179Ð180 prevalence, 177Ð179 Equal Opportunity Theory, 29 Ethnographic studies, quality of life, 59Ð60 Etiology, see Organic etiology Eugenics, and MR parent, 173Ð174 Evolution, credulity mechanism, 121Ð122 Expectations, self-efÞcacy, 26Ð28
Group homes, MR choice making, 20 GSS, see Gudjonnson suggestibility scale Gudjonnson suggestibility scale, 119 Guiding observing responses, in MR, 345Ð350 Gullibility and Barnum effect, 104 in cult membership, 113Ð116 deÞnition, 102 in false confessions, 117Ð119 as form of trust, 119Ð120 in humor, 113 and MR, 129Ð132 in people with MRDD communicative factors, 108Ð109 environmental factors, 107 intellectual factors, 107Ð108 models, 104Ð106 motivational factors, 109Ð111 physical factors, 108 Piagetian formulation, 120Ð121 in practical jokes, 113 in scams and frauds, 116Ð117 in sexual abuse, 111Ð113
H F False confessions, credulity and gullibility roles, 117Ð119 Family welfare, with MR parent, 174 Foundations for a Science of Personality, 4 Frauds, credulity and gullibility roles, 116Ð117 Functional model, self-determination applied research, 37 behavioral characteristics, 32Ð35 component elements, 35Ð36 empirical validation, 36Ð37 overview, 30Ð32 Funding source, and disability, 84Ð85
G General practitioner, in MR mental healthcare, 221Ð222 Glen Ridge rape case, 102 Goals, in MRDD gullibility, 109Ð110 GP, see General practitioner
Health, MANOVA analysis, 93, 97 HeavenÕs Gate tragedy, 113Ð115 HOME, see Home Observation for Measurement of the Environment Home Observation for Measurement of the Environment, 194 How We Know What IsnÕt So, 125 Humor, credulity and gullibility roles, 113
I Identity, MANOVA tests, 87Ð88 Illogic, and credulity, 125Ð126 Impunity, in SparksÕs theory, 152Ð153 Independent variables, for Personal Outcome Measures, 82 Individual quality of life perspective, 53 and self-determination, 4Ð5 InformantÐproxyproblem, for quality of life, 56Ð57 Informants, clinical interviewing, 229
362
INDEX
Initial observing responses, in MR guidance, 336Ð337 theory, 337Ð339 visual search, 340Ð345 Intellect, in MRDD gullibility, 107Ð108 Intellectual disabilities, residential services buildings, 255Ð256 challenging behavior, 268Ð271 cost reduction program pressures, 289Ð291 costs, 257 cotenant effects, 272 deinstitutionalization pressures, 288Ð289 individual planning, 252Ð254 local staff support, 257Ð258 meaningful activity, 261Ð265 placement outcomes, 272Ð283 placements, 254Ð255 poor performance, 284Ð287 project context, 248Ð249 project description, 247Ð248 quality of life, 258Ð261 service user groupings, 255 service users, 249Ð252 skills, 271Ð272 social interaction, 268 specialist and generic services, 287Ð288 staff contact, 266Ð268 stafÞng, 256Ð257 Intelligence, social, in credulity, 127Ð129 Interdependence, in self-determination, 31Ð32 Internal need, self-determination as, 23Ð24 Interpersonal competence, in MR victimization, 145Ð149 Interviewing, clinical informants, 229 MR people, 228 Intrinsic motivation, in self-determination, 5Ð6 IQ score in MR, 304 in MR victimization, 145Ð147 K Knowledge, in credulity, 126Ð127 L LDs, see Learning disabilities Learning
discrimination, see Discrimination learning as personal outcome application, 79 Learning disabilities, credulity as, 122Ð124 Living arrangement, and disability, 85Ð86
M MA, see Mental age MANOVA, see Multivariate analysis of variance Mastery motivation, self-determination as, 26Ð28 Matching-to-sample training, in MR, 345Ð350 Meaningful activity, in residential services, 261Ð265 Medication, MR adults, 230Ð231 Mental age, in MR, 304 Mental healthcare, MR people, 220Ð222 Mental health needs, MR people, 229Ð230 Mental health problems challenging behavior, 212Ð213 MR adults anxiety disorders, 217Ð218 broad-spectrum studies, 215Ð216 challenging behavior, 218Ð219 depression, 217Ð218 diagnosis, 222 diagnosis approaches, 223Ð224 diagnostic criteria, 224 diagnostic instruments, 224Ð225 informant clinical interviewing, 229 medication, 230Ð231 methodological issues, 219Ð220 MR clinical interviewing, 228 needs, 229Ð230 PASÐADDschedules, 225Ð228 psychological treatments, 231Ð232 psychoses, 217 service organization, 233Ð234 service training, 234 psychiatric disorders, 213Ð215 Mental health services, MR adults, 233Ð234 Mental retardation adult, mental health problems anxiety disorders, 217Ð218 broad-spectrum studies, 215Ð216 challenging behavior, 218Ð219 depression, 217Ð218 diagnosis, 222 diagnosis approaches, 223Ð224
INDEX
diagnostic criteria, 224 diagnostic instruments, 224Ð225 informant clinical interviewing, 229 medication, 230Ð231 methodological issues, 219Ð220 MR clinical interviewing, 228 needs, 229Ð230 PASÐADDschedules, 225Ð228 psychological treatments, 231Ð232 psychoses, 217 service organization, 233Ð234 service training, 234 affected parent adequacy, 184Ð186 child interactions, 186Ð189 competence assessment, 192Ð196 competence deÞnition, 189Ð190 competence factors, 190Ð192 and MR children, 179Ð180 prevalence, 177Ð179 proÞle, 182Ð184 research, 199Ð201 services, 196Ð199 stress vulnerability, 180Ð182 treatment, 173Ð176 attention research, 301Ð303 changing deÞnition, 199Ð200 choice making availability, 19Ð20 preference assessment, 20Ð22 and problem behaviors, 22 research, 18Ð19 comparison groups, 310 credulity and gullibility cult membership, 115Ð116 false confessions, 119 scams and frauds, 117 sexual abuse, 112Ð113 criminal victimization offense types, 140Ð142 prevalence, 137Ð140 decision making, 16Ð18 defect approach, 300Ð301 deÞnition, 101Ð102 developmental approach, 303Ð305 developmental levels, 313Ð316 discrimination learning, 322Ð323 etiological differentiation, 309 etiology and behavioral development, 306Ð308
363 guiding observing responses, 345Ð350 gullible behavior, 129Ð130 communicative factors, 108Ð109 environmental factors, 107 intellectual factors, 107Ð108 model, 104Ð105 motivational factors, 109Ð111 physical factors, 108 initial observing responses guidance, 336Ð337 theory, 337Ð339 visual search, 340Ð345 liberal developmental approach, 308Ð309 mental healthcare, 220Ð222 normalcy, 310Ð312 and organic etiology, 305Ð306 problem solving, 16Ð18 self-determination degree, 12Ð13 inßuencing factors, 13Ð15 self-regulation, 15Ð16 sexual abuse, prevention program, 157 social intelligence, 128Ð129 stimulus control transfer compound control, 330 existing accounts, 328Ð330 gradual transfer, 330Ð331 history, 323Ð326 interdimensional transfer, 327 intradimensional transfer, 327Ð328 program failures, 331Ð336 uniqueness, 312Ð313 victimization, 103Ð104,145Ð149,152, 161Ð163 Models active support model, 253 ecological model, 148 ecosystems, 23Ð26 gullible behavior, 104Ð106 ordinary life model, 252Ð253 quality of life, 52 teaching in MR, 18 Motivation mastery, self-determination as, 26Ð28 in MRDD gullibility, 109Ð111 and self-determination, 5Ð6 MR, see Mental retardation Multidimensional scale, quality of life examples, 55Ð56 informantÐproxyproblem, 56Ð57
364
INDEX
Multidimensional scale (cont.) measurement viability, 58Ð59 personal values role, 57Ð58 Multivariate analysis of variance afÞliation, 88, 93 attainment, 93 autonomy, 88 health, 93, 97 identity, 87Ð88 outcome factor scores, 84 Personal Outcome Measures, 83 rights, 93 safeguards, 97
N National self-determination, 2 Needs, in MRDD gullibility, 109Ð110 New Age beliefs, 114 NLD, see Nonverbal learning disabilities Nonverbal learning disabilities, 123 Normalcy, for MR persons, 310Ð312
O Objectivity, in quality of life, 51Ð52 Observing responses, in MR guiding responses, 345Ð350 initial responses guidance, 336Ð337 theory, 337Ð339 visual search, 340Ð345 OESDS, see Opportunity and Exercise of Self-Determination Scale Offenses, in MR, 140Ð142 Opportunity in self-determination, 28 in SparksÕs theory, 151Ð153 Opportunity and Exercise of Self-Determination Scale, 26 Ordinary life model, for residential services, 252Ð253 Organic etiology and behavioral development, 306Ð308 liberal developmental approach, 308Ð309 and MR, 305Ð306 MR differentiation, 309
Organization size, in disability, 86Ð88, 93, 97
P Parent, with MR adequacy, 184Ð186 child interactions, 186Ð189 competence assessment, 192Ð196 competence deÞnition, 189Ð190 competence factors, 190Ð192 and MR children, 179Ð180 prevalence, 177Ð179 proÞle, 182Ð184 research, 199Ð201 services, 196Ð199 stress vulnerability, 180Ð182 treatment, 173Ð176 PASÐADD,see Psychiatric assessment schedules for adults with developmental disabilities Performance, in MR parenting, 193 Personality psychology and self-determination, 4Ð5 science of personality, 4 Personal Outcome Measures applications, 79 data analysis, 82Ð83 dependent variables, 81Ð82 independent variables, 82 program introduction, 80 subjects, 80Ð81 Personal outcomes applications, 79 importance, 78Ð79 program evaluation, 79Ð80 social context, 77Ð78 Personal self-determination, 2Ð3 Personal values, in quality of life, 57Ð58 Physical impairments, in MRDD gullibility, 108 Political self-determination, 2 Practical jokes, credulity and gullibility roles, 113 Preference assessment, in MR, 20Ð22 Problem behavior, see Challenging behavior Problem solving in MR, 16Ð18 self-regulation, 28Ð30 Propagation, by MR parent, 174
365
INDEX
Psychiatric assessment schedules for adults with developmental disabilities, 225Ð228 Psychiatric disorders, and challenging behavior, 213Ð215,218Ð219 Psychological treatment, MR adults, 231Ð232 Psychopathology, credulity as, 124 Psychoses, in MR adults, 217 Psychotherapy, MR adults, 232
Q Quality, social context, 77Ð78 Quality of life behavioral measures, 61 concept application, 64Ð66 conceptualization, 50Ð51 as construct, 54 core dimensions, 52Ð54 discrepancy analysis, 60 ethnographic studies, 59Ð60 measurement issues, 61Ð62 multidimensional scales examples, 55Ð56 informantÐproxyproblem, 56Ð57 measurement viability, 58Ð59 personal values role, 57Ð58 objectivityÐsubjectivity, 51Ð52 people with disabilities, 62Ð63 people without disabilities, 63Ð64 in residential services meaningful activity, 261Ð265 overview, 258Ð261
R Residential services, for intellectual disabilities buildings, 255Ð256 challenging behavior, 268Ð271 cost reduction program pressures, 289Ð291 costs, 257 cotenant effects, 272 deinstitutionalization pressures, 288Ð289 individual planning, 252Ð254 local staff support, 257Ð258 meaningful activity, 261Ð265 placement outcomes, 272Ð283 placements, 254Ð255 poor performance, 284Ð287
project context, 248Ð249 project description, 247Ð248 quality of life, 258Ð261 service user groupings, 255 service users, 249Ð252 skills, 271Ð272 social interaction, 268 specialist and generic services, 287Ð288 staff contact, 266Ð268 stafÞng, 256Ð257 Response class, self-determination as, 6Ð7 Rights, MANOVA analysis, 93 Risk, MR victimization, 145Ð149,152, 161Ð163
S Safeguards, MANOVA analysis, 97 Scams, credulity and gullibility roles, 116Ð117 Science of personality, 4 SCT, see Stimulus control topography SDSES, see Self-Determination Observation Skills Evaluation Scale SDT, see Special development team Self-determination as construct, 1 deÞnition issues, 6Ð8 and determinism, 3Ð4 and disability, 8Ð10 ecosystems model, 23Ð26 as efÞcacy expectations, 26Ð28 as empowerment, 10 functional model applied research, 37 behavioral autonomy, 33 behavioral characteristics, 32Ð33 component elements, 35Ð36 empirical validation, 36Ð37 overview, 30Ð32 psychological empowerment, 33Ð34 self-realization, 34Ð35 self-regulated behavior, 33 and individual differences, 4Ð5 as mastery motivation, 26Ð28 meanings, 1Ð2 and motivation, 5Ð6 in MR choice making, 18Ð22 degree, 12Ð13 inßuencing factors, 13Ð15
366 Self-determination (cont.) and personality psychology, 4Ð5 research directions, 38Ð40 as self-regulated problem solving, 28Ð30 types, 2Ð3 Self-Determination Observation Skills Evaluation Scale, 26 Self-efÞcacy expectations, self-determination as, 26Ð28 Self-government, self-determination as, 2 Self-realization, in self-determination behavior, 34Ð35 Self-regulation in MR, 15Ð16 self-determination behavior, 28Ð30,33 Service delivery, in MR victimization, 161Ð162 Services, for MR parent, 196Ð199 Sexual abuse credulity and gullibility roles, 111Ð113 MR adults, prevention program, 157 and MR credulity and gullibility, 102Ð103 Sexual offenses, in MR, 141Ð142 Social behavior, in victimization, 156 Social context, quality and outcomes, 77Ð78 Social factors, for MR parents, 200Ð201 Social intelligence, in credulity, 127Ð129 Social interaction, in residential services, 268 Social learning theory, for abuse, 148 Social support, and MR parent competence, 191Ð192 SparksÕs theory application, 152Ð155 victimization, 150Ð152 Special development team community services cost reduction program pressures, 289Ð291 costs, 257 cotenant effects, 272 deinstitutionalization pressures, 288Ð289 placement outcomes, 272Ð283 poor performance, 284Ð287 service users, 249Ð252 specialist and generic services, 287Ð288 stafÞng, 256Ð257 user groupings, 255 project context, 248Ð249 set-up strategy, 247Ð248 StafÞng, residential services, 256Ð257 Standardized tests, for MR persons, 311Ð312 Stimulus control topography, 332Ð333
INDEX
Stimulus control transfer, in MR compound control, 330 existing accounts, 328Ð330 gradual transfer, 330Ð331 history, 323Ð326 interdimensional transfer, 327 intradimensional transfer, 327Ð328 program failures, 331Ð336 Strategy, in MR, 16Ð17 Stress, MR parent vulnerability, 180Ð182 Structural variables, in victimization, 143Ð145 Subjectivity, in quality of life, 51Ð52 Suggestibility, as personality construct, 118Ð119
T Teaching, in MR choice making, 21 model, 18 Training matching-to-sample training, 345Ð350 for MR mental health services, 234 in victimization prevention, 155Ð161 Treatment MR adults, 230Ð232 MR parent, 173Ð176 Trust, via gullibility, 119Ð120
U Uniqueness, MR persons, 312Ð313
V Variables for Personal Outcome Measures, 81Ð82 structural, in victimization, 143Ð145 Verbal data, in MR parent studies, 200 Victim characteristics, 103 deÞnition, 142Ð143 role in victimization, 149Ð152 Victimization choices, 143Ð145 criminal, in MR offense types, 140Ð142 prevalence, 137Ð140
367
INDEX
MR persons, 103Ð104 prevention broad-based approach, 155 by training, 155Ð161 risk in MR, 145Ð149,152, 161Ð163 SparksÕs theory, 150Ð152 structural variables, 143Ð145 victim deÞnition, 142Ð143 victim role, 149Ð152 VictimÐperpetratorrelationship, 143Ð145 Visual search, in MR features, 340Ð342 guided search, 342Ð345
Vulnerability MR parent to stress, 180Ð182 reduction by training, 156Ð158 in SparksÕs theory, 151, 153
W When Prophecy Fails, 125Ð126 WilkÕs criterion, disability and funding source, 84Ð85 living arrangement, 85Ð86 organization size, 86Ð88,93, 97