EMPOWERING FRAIL ELDERLY PEOPLE
EMPOWERING FRAIL ELDERLY PEOPLE Opportunities and Impediments in Housing, Health, and Support Service Delivery Edited by Leonard F. Heumann, Mary E. McCall, and Duncan P. Boldy
Library of Congress Cataloging-in-Publication Data Empowering frail elderly people : opportunities and impediments in housing, health, and support service delivery / edited by Leonard F. Heumann, Mary E. McCall, and Duncan P. Boldy. p. cm. Includes bibliographical references and index. ISBN 0–275–96651–8 (alk. paper) 1. Frail elderly—Services for—United States. I. Heumann, Leonard. II. McCall, Mary E., 1960– III. Boldy, Duncan P., 1941– HV1461.E464 2001 362.6—dc21 00–025465 British Library Cataloguing in Publication Data is available. Copyright 2001 by Leonard F. Heumann, Mary E. McCall, and Duncan P. Boldy All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 00–025465 ISBN: 0–275–96651–8 First published in 2001 Praeger Publishers, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.praeger.com Printed in the United States of America TM
The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48–1984). 10 9 8 7 6 5 4 3 2 1 Copyright Acknowledgments The editors and publisher gratefully acknowledge permission for use of portions of Chapter 8 based on the articles “Aging in conventional housing: A planner’s evaluation of the new Australian home based care management programs,” parts I and II, by Leonard F. Heumann. Originally published in Australian Planner, XXXIV 3, 4 (1997). Reprinted with permission from the publisher. Figures 9.1, 9.2, and 9.3 Kirkwood Design Studio.
This book is dedicated to Rob, Sarena, Chris, Aaron, Gina, Micah, Sydney, and Allena; to Tom, Betty, Frank, Andrew, Colby and the residents of Satellite Housing, Inc.; and to Arthur, Ruth, David and Phillip Boldy.
Contents
Preface
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Part I. Introduction 1
2
Empowerment: Definitions, Applications, Problems, and Prospects Mary E. McCall, Leonard F. Heumann, and Duncan P. Boldy
3
Opportunities and Impediments in Housing, Health, and Support Service Delivery Leonard F. Heumann, Duncan P. Boldy, and Mary E. McCall
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Part II. Service Providers and Empowerment: Information, Training, and Coordination 3
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Promoting Empowerment in Residential Aged Care: Seeking the Consumer View Duncan P. Boldy and Linda E. Grenade
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Reimagining Senior Empowerment in Service Delivery: Creative Applications in a Global Context Mary E. McCall
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Retaining and Expanding Empowerment in the Transition from a Family to a Community-Oriented Support System: Japan in the 21st Century Tokie Anme Empowerment in Post-Reform Community Care in England and Wales Bleddyn Davies
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Part III. Environment and Empowerment in Conventional Housing 7
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Another Way of Living in One’s Own Home: The Salmon Group Projects Robin Currie, Marie-Jo Guisset, and Niek de Boer The Role of the Built Environment in Holistic Delivery of Home- and Community-Based Care Services to Frail Elderly Persons Leonard F. Heumann When Community Planning Becomes Community Building: Place-Based Activism and the Creation of Good Places to Grow Old Philip B. Stafford
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Part IV. Client Empowerment in Long-Term Care 10
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The Rights of Elderly People in a Nursing Home—A Little Creativity, a Lot of Respect, a Taste for Adventure, and an Allergy to Bureaucracy Germain Harvey. Translated by James Lawler
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Bringing Managed Health Care Home: A New Service Strategy for People with Chronic Illnesses and Disabilities Dennis L. Kodner, Meg Sherlock, and Jonathan Shankman
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Elderly Persons with Severe Mental Illness: Empowering a Neglected and Growing Population Paul H. Carmichael
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Older People with Longstanding Disabilities and Their Caregivers: Empowering a Neglected and Growing Population Lindsay Gething
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Contents
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Part V. Overview and the Future 14
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Empowerment in Pathways Through Care: A Cross-National Comparison of Care Delivery Systems in Britain and Germany Michaela Schunk
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Empowerment of Frail Elderly People and the Vision of a Self-Actualized Society Duncan P. Boldy, Mary E. McCall, and Leonard F. Heumann
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References
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Index
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About the Editors and Contributors
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Preface
“Empowerment” is a term that has become increasingly applied in various human service fields to efforts aimed at both giving power to individuals, or removing obstacles that people may face in attempting to make decisions for themselves. These decisions can occur in such diverse arenas of one’s life as education, health care, living and employment circumstances. In this book, we specifically examine the impediments that frail older persons face in securing and maintaining power over their own housing, health and social service needs and desires. As the number of frail older people continue to increase in industrialized countries around the world, the need for sustaining the rights of older persons to make such decisions for themselves is becoming critical. Understanding the myriad mechanisms and constraints on older persons’ empowerment will help us identify the ways in which we unwittingly contribute to stripping people of the power and dignity that all persons deserve to retain. Properly identified and understood, we can then make our best efforts to both remove barriers to, and increase opportunities for, true empowerment of older frail people, who deserve, as do we all, the right to make decisions for themselves. This includes decisions that others may deem to be unreasonable, unsafe or risky. The case studies in this book provide concrete and creative models of ways to preserve the dignity of frail elderly persons in a variety of housing, health and social service settings. All of the authors uphold the value of honoring the autonomy and freedom of older persons, regardless of their physical, health or mental status. We aim, in this book, to map out theoretically, the broad range of impediments to empowerment that fall into four main areas (service provision, environment, client-related, and society-related), and then to present ex-
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emplary approaches to overcoming some of these impediments. This book, then, is addressed to service providers, health professionals, housing and environmental designers, policymakers, caregivers, and older persons themselves. Chapter 1 is divided into two parts. The first analyzes various conceptual approaches to the notion of empowerment, and the second examines changing societal values and how the values a nation espouses directly affect the efforts to increase or maintain the power of frail elderly persons. Chapter 2 outlines the theoretical framework of this book, in which all of the case studies are embedded. This framework provides an analytic structure for the evaluation of various impediments to empowerment. The four components of this framework are provider-based, environment-based, client-based, and societal-based limits or impediments to true empowerment and provide a reference point for the remaining chapters. We believe the case studies chosen for inclusion in this book together reflect universal values and provide meaning and interest to persons in all countries who seek to maximize personal control and functional independence for even their most frail elderly citizens. Chapters 3 through 6 address issues of empowerment related to service providers. Chapters 3 and 4 outline specific methods of increasing the involvement of older persons themselves in the design and evaluation of services. Chapter 5 analyzes the major cultural changes happening in Japan and the efforts to increase empowerment of older persons in the face of diminishing family caregiving. Chapter 6 provides a unique broad-stroke analysis of the economic implications of choosing empowerment as a social goal over other potential goals, such as increasing the number of days one is able to stay in one’s own home. Chapters 7 through 9 examine the challenges to empowerment within housing and environmental arenas. Chapter 7 presents a unique approach to housing design across Europe by the Salmon Group, setting out how group members in different countries actively enlist older persons in designing their own housing and neighborhood environments. Chapter 8 describes an Australian study that analyzed service providers’ knowledge of and attitudes toward housing adaptations that remove barriers and introduce physical changes that make it easier to live independently and thus empower the resident. Chapter 9 outlines the process an entire American community went through to design housing and services to accommodate the needs of all generations in the community. Chapters 10 to 13 address client impediments to empowerment in longterm care settings. Chapter 10 describes a unique living environment in Canada where design of buildings, daily schedules and the like begin with the desires of the residents themselves. Chapter 11 presents a proposed new approach to home care for frail elderly persons in the U.S., describing the impediments of traditional care systems for the frail that this new program
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is designed to overcome. Chapter 12 examines the needs of a critically neglected population—older persons with severe mental illness. Similarly, chapter 13 addresses the empowerment of an under-noticed and underserved segment of older persons—those with long-standing disabilities. Chapters 14 and 15 are designed to step back and examine from a broad, societal perspective, how policies of different countries reflect different value systems. Chapter 14 specifically compares Great Britain and Germany by analyzing how their policies are manifested in different concrete service systems, with divergent consequences for potential empowerment of frail elderly persons. In our final chapter, we present a vision of a fully selfactualized society, where members of all ages are truly empowered to the full extent of their desires and capabilities. We hope that the examples set forth in this book inspire us all to reach our highest goals of freedom, dignity and respect for all—of any age, and in any country. Leonard F. Heumann University of Illinois Mary E. McCall St. Mary’s College of California Duncan P. Boldy Curtin University, Perth, Australia
PART I
INTRODUCTION
1
Empowerment: Definitions, Applications, Problems, and Prospects Mary E. McCall, Leonard F. Heumann, and Duncan P. Boldy
In a mountainous region of southern Appalachia in the United States, an impoverished 75-year-old man, who is functionally deaf but lip-reads proficiently, proudly displays his new walker. He has had both legs amputated below the knees and wears ill-fitting prosthetic legs. With his new walker, made of PVC plastic pipe by his neighbors, he can happily hobble to the front of the yard where his two-room, cement-walled, tin-roofed house sits uneasily on a sloping cement floor. Here he can lean awkwardly on a crate by the street and talk with the young men and women who gather to play cards and the children who play among the rubble. He is known in the neighborhood as the “wizard” because of his vast knowledge of history and geography. The young man who lives with his small children and wife (who cooks and does laundry for the older neighbor) in the front two-room cement “house” of the “yard,” admirably remarks. “You can ask him anything about that stuff—he knows it all.” While this older man would qualify for government-funded nursing home care, he chooses to stay in his own neighborhood where he is comfortable and well known. In a suburb of San Francisco, California, a well-educated, very wealthy 80-year-old man is taken from the assisted living facility where he has recently moved, following the death of his wife of 60 years. His children are concerned that he is being “taken advantage” of by a woman who lives in his building—she comes over too often, according to the children, and seems to be “taking over” his life. They are afraid that he is too vulnerable and does not know how to protect himself from such people. He is unhappy about leaving, as he now has the ability to be with people his own age and
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have things done for him (meals, laundry, etc.). He accedes to his children’s wishes and moves to another facility of their choosing. In the United States, the “land of the free,” which of these men has more freedom or power to choose for himself what makes him happy? Who has more control over his life? Words such as control, freedom, and power conjure up in our mind pictures of older people making choices for themselves that lead to happy and fulfilling lives. We often assume that, given such control or power, people will make the best possible choices for themselves and utilize all their faculties and resources to assess the available options and maximize their outcome. “But for the elderly, particular conditions affecting their choice-making are entailed by structural and contextual issues” (Rubinstein, Kilbride & Nagy, 1992, p. 4). This chapter is divided into two parts that address both components of the types of situations just described—making choices and what that means to different people, and the structural and social contextual issues that affect decision making by frail older persons. First, we start with a definition of the term “empowerment” and how it might apply to frail elderly people. This first section will show that to some researchers and practitioners empowerment means better “informed” clients, care managers and providers; to others it means clients who are better able to “voice” their perspectives and desires to providers who are better able to listen; to others it means “expanding choices” and options in care delivery; and to others it means giving frail adults greater participation in, and control over, their own care planning and management. The “idealistic” degree of ultimate empowerment is often defined as full control of planning and management of care and all the risks of deciding one’s own fate. Using P. G. Clark’s (1989) four philosophical interpretations of the concept of empowerment, we examine the ways in which empowerment has been defined, applied and evaluated in various service arenas. In this chapter, and this book, our goal is to show that all these definitions may be useful and meaningful in the right setting. But the key is allowing and encouraging all seniors to understand and realize their abilities and desires to meet their needs related to independence. Then we must allow them to control their care planning and delivery to the margin of that ability, desire and need. For them to do this, they need to be served by formal and informal caregivers who understand the meaning and support the achievement of a desired level of personal independence in a flexible and accommodating way. In the second part of this chapter, we look at changing societal values and the aging process. We do this by first presenting a continuum of social value models developed by H. R. Moody (1976). Moody defined four models or stages of support and care for seniors that represent a progression toward more enlightened philosophies of care. These are (1) rejection; (2) social service; (3) participation, and (4) self-actualization. Moody states, and we
Definitions, Applications, Problems, and Prospects
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agree, that most advanced societies are currently in transition between stages 2 and 3, the models of social service and participation. However, full empowerment can occur only when society reaches a self-actualization model where acceptance of and empathy toward all stages of the life cycle has risen to a higher and equally valuable status. As we will argue here, many formal service institutions, individual professional care providers and many elderly persons and their informal support networks still believe in a “social service” model of support and care where only trained “professionals” should be empowered with care planning, management and delivery. Despite rhetoric that espouses true empowerment of frail elderly persons, this widespread consumer acceptance or the belief in the submission of care control in older age to professionals is the key impediment to more enlightened and progressive forms of empowerment. Fuller examination of this and other impediments and illustrations or case studies related to how they can be creatively addressed and overcome shape the entirety of the book. EMPOWERMENT: MANY THINGS TO MANY PEOPLE P. G. Clark (1989), in his article titled “The Philosophical Foundations of Empowerment,” presents four interpretations of empowerment with regard to older persons and their health care. However, these interpretations are appropriate enough to apply to almost any arena of service for frail elderly people. These four interpretations are (1) empowerment as effective deliberation and moral reflection; (2) empowerment as personal process; (3) empowerment as political activism and social process; and (4) empowerment as balance and interdependence. Each of these bears reflection in terms of the ways in which they have been utilized most recently in research, practice and service design and delivery for older people in countries around the world. Empowerment as Effective Deliberation and Moral Reflection In this first interpretation, Clark is referring to empowering individuals in contexts where personal decision making should be with the greatest reflection. For example, arenas of one’s life that might have a major impact on the day-to-day quality of the person’s life (e.g., housing environs, level of service desired or provided) may all be affected by how and what decisions are made. He states that the notion of autonomy is “helpful in drawing our attention to two essential decision-making elements: effective deliberation and moral reflection” (p. 5). These two factors are two of what Liaschenko (1998) refers to as “the four senses of autonomy.” The other two are free action and authenticity. The concept of autonomy has been one that has been extensively discussed in the field of gerontology and debated as to the
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extent of practical application that can be safely engaged in when designing and implementing services for the elderly. Collopy (1988, cf. Hofland, 1990a) defined autonomy as “a cluster of notions including self-determination, freedom, independence, liberty of choice and action. In its most general terms, autonomy signals control of decisionmaking and other activity by the individual. It refers to the human agency free of outside intervention and interference” (p. 5). But the application of the principle of autonomy in the variety of circumstances in which many older people find themselves complicates the seemingly noncontroversial notion of allowing people to make choices for themselves, based on their personal values and preferences. For example, Hofland (1990a) delineates more specific dimensions of autonomy where the elderly are concerned—the physical dimension and the psychological dimension. The physical dimension refers to environmental freedom of movement and the lowest level of physical restrictions. The psychological dimension is related to the ability to freely make choices about one’s environment and to exercise control. And, while one may be completely physically dependent or unable to exercise physical autonomy, this ought not prevent that person from being able to exercise psychological autonomy in making choices about his or her care, environment, and so on. Collopy (1990) distinguishes between “decisional autonomy” and “autonomy of execution.” The former, closely related to the psychological dimension just described, means the “capacity and freedom” to make choices and decisions. The latter refers to “the ability and freedom to carry out such decisions.” Thus, while one may not be able to physically execute decisions, this limitation should not prevent one from being able to make a choice that directs others to implement it. One of the most vexing concerns that many people hesitate to face when discussing autonomy and older persons is the real possibility that some people may choose to exercise autonomy in ways that others (many times family members or service providers) judge to be risky or not in their best interests (Collopy, 1990; Hofland, 1990a; Liaschenko, 1998; Rice, Beck & Stevenson, 1997; Rubinstein, Kilbride & Nagy, 1992). What do we do when 89year-old Dad insists that he can still drive, and refuses to surrender his car keys? Or when Mother refuses to move out of her home of 45 years, even though it’s in a state of severe disrepair? Not uncommon occurrences, these circumstances place the question squarely on the table of when, and under what circumstances, elderly persons should be allowed to exercise their autonomy, even when dangerous results may occur. As Young (1990) states, “The very nature of autonomy is that individuals are able to choose against themselves if they wish.” The ethical principles involved in this dilemma pit autonomy against beneficence. There may be an inherent conflict between the older person’s judgment of what is best for himself and the judgment of another about the risks involved. Young points out that while American society sees itself as the epitome of independence and claims autonomy and
Definitions, Applications, Problems, and Prospects
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dignity for many, we have yet to develop a “communal sense” of what is most important in the care of frail elderly people in our society. Many other countries have social policies that reflect more socialistic attitudes about the rights of older persons to exercise their own best judgment, and will intervene only if there is sufficient risk involved (see Chapter 8 for a discussion of some Western European countries that are developing such approaches to housing design). Collopy (1990) also discusses the danger of judging an older person to be incompetent based on the fact that she is making a choice with which other people may not agree. He says, “to judge the reasonableness of a decision, [others] ought to view her decision not from some outside professional standard of care, but from her perspective, from the woman’s own attempt to balance pain and purpose in what might be the finale of her life.” This is where Liaschenko’s third “sense of autonomy” may apply—that of “authenticity.” As Liaschenko (1998) defines it, “autonomy as authenticity means a person’s actions are congruent with his or her beliefs, attitudes, values, dispositions and life plans. In other words, the person is acting ‘in character.’ ” Such an approach is exemplified by a program in Montreal, Canada, which provides a “Life Context Advisor” to each resident in a residence for frail elderly people (Harvey, 1997; see Chapter 10 herein). This advisor calls for nursing home patients to reassess priorities for an individual and design a unique service program based on that person’s values and needs. And while the exercise of autonomy is obviously complicated by issues of cognitive incapacity, the fine line between supporting a person’s wishes, even in the face of potential risk and danger to him, remains to be carefully evaluated by service providers and family members alike. Rubinstein, Kilbride and Nagy (1992) also argue that even in limiting circumstances, such as a nursing home or other institutional setting, independence and autonomy may be relatively defined by older persons, as opposed to absolutely defined by older persons. “People who are, say, merely physically impaired may feel themselves to be considerably more independent compared to someone with profound cognitive impairments. Practically, one person’s notion of his independence may be different from another’s notion of her independence.” Thus, independence or autonomy are defined individually, and in the context of that individual’s unique set of values and personal history. This notion of being authentic to one’s own set of values is important to discuss because we believe it can lead the way to understanding in a more complex way the manner in which older people may make choices for themselves that others (health care providers, family members, etc.) may not understand or agree with. Authenticity is related to another dimension of autonomy delineated by Hofland (1990b)—the spiritual dimension. Hofland defines this dimension as “an expanded concept of self.” He believes that it is not simply that people are able to make choices for themselves, but
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that those decisions must be consistent with people’s personal values and goals and the meaning with which they imbue their life. For example, a person living in a nursing home might choose to bring with her personal items that have special meaning—photos, a small table, and so on. This ability to shape her immediate environment in a meaningful way contributes to the better mental health and well-being of that resident (Rubinstein, Kilbride & Nagy, 1992). An understanding of what is important to an individual can often be deduced from his or her choices. For example, an older couple, one of whom suffers from deteriorating cognitive abilities, may choose to remain at home, even given the extraordinary burden of caregiving that such a choice places on the lucid spouse. If the family (and, perhaps, their physician) knows that this decision is consistent with the values that couple has maintained throughout their lives with each other, there may be a greater degree of comfort with the choice, and a greater willingness to support that decision. Liaschenko (1998) poses the question of whether the person’s cognitive impairment necessarily means that such a choice is inauthentic. With proper discussion and deliberation, as well as reflection upon the choices made by an individual in light of who that person has been in the past, and who she hopes to be in the future, support of the empowerment of the older person to make and implement those choices may be more likely. Thus, effective deliberation and moral reflection related to empowerment suggests that older persons and their families can benefit from support when making decisions about services and housing. The amount of time needed for such deliberations and reflections is often protracted as each elderly person copes with marginal changes in his or her functional independence, thus making empowerment a process rather than an “outcome.” Empowerment as Personal Process Clark (1989) also defines empowerment as a personal process requiring the kind of time noted above for advance planning to help older persons and their families both to make decisions and to prepare and/or access support systems needed to help them face future challenges (e.g., increasing frailty). Part of this process is helping individuals and families articulate not only their values, but also their preferences, feelings and fears about possible future scenarios. Programs and services are needed to help focus discussions on these issues, since they rarely arise during “normal” day-to-day conversations. Most such conversations take place in emergency rooms (i.e., regarding choices about employing life-saving measures to save a person’s life) or prior to hospital discharge (i.e., whether to go home again, to an interim care facility or to a long-term facility). Some view advance planning as a moral responsibility in which all older
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persons should engage (Pratt, Schmall & Wright, 1987). However, the vast majority of elderly people cannot plan for unknown, and largely unhoped for, future contingencies. Moreover, without adequate resources to actualize any potential plans (e.g., saving enough money for home care), the notion of requiring people to make long-range plans for themselves seems naı¨ve. While many countries around the world are attempting to devise financial, medical, social or housing schemes that facilitate such planning (e.g., continuing care facilities in the United States or Sweden’s movement from a welfare “state” to a “welfare society,” with the meaning of welfare as individual well-being, not welfare as charity or entitlement programs [Henning & Karp, 1997]), most are far off from achieving that goal. Thus, empowerment remains largely a personal phenomenon in the midst of slow-moving social and institutional change. Personal empowerment has also been defined by Gibson (1991) as a “process of recognizing, promoting and enhancing people’s ability to meet their own needs, solve their own problems and mobilize necessary resources in order to feel in control of their own lives” (p. 359). She sees empowerment as a transaction between the individual and providers. She and others (Nystrom & Segesten, 1994; Vander Henst, 1997) agree with Clark that empowerment is a developmental process that will take different forms for different people. Empowerment is a complex concept to define and sometimes, according to Gibson (1991), is more easily understood in its absence: powerlessness, helplessness, hopelessness, paternalism, and an external locus of control and dependency. There have been many studies of programs designed to build empowerment in the elderly, often through the removal of impediments to individuals’ abilities to make choices for themselves. But, as noted before, these strategies often assume that people will become empowered in the way we hope them to be, or that they will even choose to take the power they may have access to. Again, empowerment for some people might be to give that power to someone else—to consciously allow another to make and implement decisions for them (Jones, 1998; Vander Henst, 1997). Another important issue related to the development of empowerment is the role of history—both individual and social—in allowing some persons to claim power and others to be unable to. How can empowerment occur for individuals and groups whose experience over their lives has been one of being marginalized and alienated from mainstream health and/or social services? Groups such as the very poor, those with low levels of formal education, minorities and immigrants, may not even understand the concept of empowerment, never having had experience with it in perhaps any arena of their lives (McMillian & Preston, 1996; Simons-Morton & Krump, 1996; Skelton, 1994; Wallace, Fox & Napier, 1996). As noted above, there may be individual differences in the desire for control. In the United States, with the generation born and raised before World War II, it is common to find
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that individuals are not comfortable challenging authority figures such as physicians. And in Sweden, where large generational differences in perspectives on one’s role in one’s own health care have been observed, it can be seen that current generations of older people may perceive personal power and empowerment in a very different way than the researchers and service providers might wish them to. For example, elderly women, especially, feel it is more important to be seen as self-sacrificing and non-effacing than to be assertive or seen as aggressively desiring power (Nystrom & Segesten, 1994). Patient empowerment may also contradict some cultural practices in which major decisions may be made by the family patriarch, or by family consensus (Alvarez, 1997). Thus, the notion that empowerment is only a personal process is simplistic. There are clearly a number of other factors affecting any one individual’s ability to engage in the process of becoming empowered. For example, according to Kari and Michels (1991), the word “power” means “to be able.” Empowerment, therefore, is not something one does to or for another person, they claim, but rather, is “the ability to act collectively to solve problems and influence important issues. Empowerment occurs when parties influence one another” (p. 722). Therefore, to participate in empowering someone means to participate with them rather than doing something for them or something to them. “The broader goal of the creation of an empowering environment in which persons can assume control over their lives and establish meaningful roles cannot be easily achieved” (Kari & Michels, 1991 724). Empowerment as Political Activism and Social Process The creation of such an empowering environment requires more than a personal process; ultimately, it must include political and social processes (Vander Henst, 1997). Clark (1989) agrees with Kari and Michels (1991) when he notes that “it does little good to speak of personal empowerment without considering the need for sufficient social resources to enable individuals to exercise choice in their lives. Asking people to make decisions in a world with very few or no options—because of inadequate food, clothing, or shelter—is simply a mockery of empowerment. The distribution of social resources is ultimately a problem based on the principle of social justice” (p. 271). Stoller and Gibson (1994) raise the question of how public policy can serve to compensate for life course histories of groups (e.g., ethnic and minority older people) that have traditionally been undeserved in many social and health service arenas. In the United States, advocacy groups such as the AARP (American Association of Retired Persons) have worked to ensure that more elderly Americans have opportunities for a stable life. However, there are still many subgroups of Americans who suffer from poverty, ill health and a profound sense of helplessness when it comes to meeting their needs. Therefore, efforts to provide a minimally decent existence
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for older people have become more clearly focused and sophisticated, dealing with such specifically social and political issues as housing, health care, and long-term care. In particular, relevant strategies adopted by some policy makers and service providers more recently have focused on expanding the supply of services to enhance opportunities for choice. For example, the establishment of funding for community-based services has created new alternatives to institutionalization for the frail elderly people in many countries around the world. But these efforts have been complicated by the myriad factors that affect people’s ability to capitalize on options made available to them. For example, when we examine housing decisions, the choice of living alone in contrast to living in an institution may be based solely on health status. On the other hand, for some older persons, the choice of living with relatives versus living by oneself may depend more on other issues, such as economics, family proximity or social/cultural/familial norms guiding appropriate housing arrangements. In addition, the absence of viable informal supports of the kind needed or in an accessible area may also narrow the choices that people see for themselves. Communities where large numbers of elderly people dwell are more likely to provide formal services where informal support networks among family members do not exist. For elders who might live in a high-density, urban area with no particular concentration of older people, both formal and informal services may be lacking. One interesting change has been in the evolution of the service of discharge planning. Until the late 1970s in the United States, much discharge planning was the responsibility of the staff nurse, who sometimes consulted with the physician and, occasionally, a social worker. The patient and family were simply told what would happen, rather than including them in the planning discussion. As the demand for hospital care by frail elderly people increased, the term “bed blockers” came into use in hospital language. Then, in the 1980s, Great Britain became one of the leaders among countries with universal health care systems to create a more formal structure in the specialized area of hospital care for older people. And while discharge planning in the United States had been part of the American Social Security Act revision in the 1970s, it was not until the 1990s that it became formalized, employing written policies, role descriptions, methods of follow-up and so on. But a study done in 1992 (Dugan & Mosel, 1992) found that 46.2% of hospital records of older people reviewed had no discharge planning information. Given that the outcome of hospital stays are typically either a long-term care facility (with obvious longterm consequences) or home care (with important consequences for health status and future health care needs), the advance planning that is missing is crucial for all constituents. When we examine the delivery of home care service (health and/or social) the complexities of supporting autonomy and empowerment become crys-
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tallized. Young (1990) has identified three major factors that differentiate home care from institutional care in terms of issues of autonomy. First, the location of service delivery in the person’s own home versus an institution highlights the importance of dealing with the individual, her preferences and her values, in an environment in which she is “in charge.” Violation of the autonomy of an individual, in his or her own home, is much more likely to be felt and resented than in an institutional setting. Secondly, the caring mix of both formal providers and informal family caregivers may complicate further the ability for an older person to be and to act empowered. Their family may serve as a buffer between him and formal providers, supporting the older person’s wishes. On the other hand, the family members may cripple an older person’s power by being paternalistic and granting power, by invalid proxy, to the formal caregiver. And finally, home health nurses are caring for more ill patients who require new levels of medical technology to maintain them. With the expansion of home care, new technologies for the home have been developed. Today, patients who wish to return home or want to stay at home, can do so with ventilators, feeding pumps, intravenous fluids or similar technologies. These can allow patients to maintain a greater level of autonomy while in their own personal environs. Thus, the question may no longer be whether home care is cost-effective or not, but what methods are needed to make it cost-effective (Fast & Chapin, 1996). One relatively new approach to social and health service provision in home care is the “strengths approach” (Fast & Chapin, 1996). This perspective focuses on helping people, families and communities, “discover and develop their own capacities, talents, skills and interests while connecting them with the resources needed to achieve their goals” (p. 51). As we know, many older adults do not plan for health-related crises. Very frail elderly people are often subject to short-term hospitalizations, leaving them further weakened and hardly in a position to assert their values and preferences. Many people thus end up in institutions against their wishes. In the strengths model, the case manager would discuss such an emergency plan and negotiate with both the individual older person, his or her family members and doctors, if required, before such a crisis might occur. When such a plan is not in place, then often the most high-cost and formally structured care is the easiest option for health care providers to recommend or choose, even when not the most preferable (Fast & Chapin, 1996). Another recent attempt at empowerment in the arena of home health care is the education of older people in “self-care” skills. This is another way in which health care providers are both advocating for older persons and trying to engage them actively in their own care. Medical self-care is what people do to “recognize, prevent, treat and manage their own health problems” (Mettler & Kemper, 1993, p. 7). It implies self-determination, self-reliance and public/client involvement (Beckingham & Watt, 1995). This self-care “movement” has been compared to other social movements (e.g., the
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women’s movement and the union movement), in terms of its response to general social trends at any given time. In this case, the trend is demographic, portending a dramatic increase in health and social care of the growing number of aging people around the world (Boldy, 1997). In the context of American culture, the self-care movement is largely driven by the cultural value of maintaining control over one’s life, and a strong desire for self-reliance. And while many think of self-care strategies as focused on an individual, they are, in fact, incumbent upon the support of family, communal and social efforts. These efforts involve conscious decisions about balancing risks and resources, including the aid and support of others—both formal and informal. The same delicate balance can be seen when one examines the role of self-care and empowerment in long-term care settings. While laws may set minimal standards for what is required in institutions, ethical standards point out what practitioners and providers should do (Hofland, 1990a). Hofland gives the example of an older woman who has difficulty walking and, therefore, may be limited in her mobility by staff because of their concerns about her falling and injuring herself. However, the woman may be defining the situation not in terms of physical risk, but in terms of her ability to maintain her independence. In the former case, the intervention might call for constant supervision. From the latter perspective, the needed response may be the removal of barriers and the provision of a sturdy walker. He points out that, while there may be “no objective standard for weighing the good of security more heavily than the good of maintaining independence,” the evaluation of the older person’s values and preferences is important in making any decision. Lidz and Arnold (1990) posit that the many particulars of the environment of long-term care institutions require a rethinking of the concept of autonomy and, thus, empowerment. They note that philosophers, as discussed earlier, equate autonomy with “independence from external influences.” They suggest that, instead of thinking of these as synonymous, that our notion of autonomy must acknowledge individuals who live in a specific social, cultural and historical context. They propose, appropriately, we think, that the existence of institutional structures, by itself, is neutral regarding autonomy or empowerment. Thus, rather than asking whether one’s choice is influenced by outside factors, and assuming that all those factors are necessarily negative influences on autonomy, the more appropriate question is how institutional factors affect one’s decisions and behaviors and whether those particular influences compromise or undermine one’s control, reasoning, or personal power. This recognition and balancing of the inherent contradictions in promoting empowerment in frail elders in institutional settings is the first step in beginning to creatively address the challenge of empowering this population.
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Empowerment as Balance and Interdependence Clark’s (1989) fourth interpretation of empowerment addresses another kind of balance; that is, “that each person represents a mixture of dependence and independence, which are balanced by the individual in accommodating to the realities of his or her personal history and life situation.” His concern is that the focus on autonomy only detracts from the reality of the need for all of us—and perhaps even more for frail elderly people—to be connected with others in a meaningful web of interdependence. The process of being able to strike such a balance may result in what Rawls (1971) refers to as “reflective equilibrium”—a state in which the thoughtful comparison of one’s principles and judgments has concluded in a relevant merger of the two. This harkens back to the first interpretation of empowerment—effective deliberation and moral reflection. While this process may be the ideal, there are a variety of factors that can impede a person from reaching this state of reflective equilibrium. While the rest of the book is organized around approaches to overcoming explicit impediments to empowerment, we want to briefly mention four factors here that are not as closely examined in the other chapters: (1) family conflicts; (2) financial considerations; (3) rhetoric and the language of empowerment; and (4) the necessary paradigm shifts that must occur in a variety of arenas, but especially in the area of providers themselves. Family Conflicts Family conflicts—both between spouses, and between older parents and adult children—can muddy the waters of clear decision making by an older person. As Hofland (1990) points out, “the family caregiver faces trade-offs that relate to intergenerational responsibilities and balancing the preferences of the impaired family member against concerns for his or her safety or the needs of the rest of the family.” Unresolved family issues from the past may also further complicate this conflict. For example, a child who resents a parent for “not being there” when she was growing up may be less willing to sacrifice or assist her needy parent later. Sometimes it is the breakdown of informal family support that means that an older person has to enter residential care. Perhaps the caregiver’s own health is ailing, or there are conflicts between family and paid employment responsibilities. In many cases, the transition from home to residential care is fully negotiated between those involved. But a number of older persons in one study reported that it was “not their choice to make”; either they did not want to ‘burden’ their children or they were concerned about ‘being a nuisance’ to friends and neighbors” (Hardy, Wistow & Young, 1997, p. 6).
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Financial Considerations The burden of providing care may be mainly financial, and, in the United States, for example, may be prohibitive. In 1995, the average annual cost of nursing home care in the United States was $37,000, while even home care could cost more than $12,000 per year. This latter figure does not take into account the hidden costs of the in-kind, informal services that families and neighbors may be providing in order to keep that person at home. And current federal financing programs in the United States only cover home care under certain circumstances. Many individuals in countries where private-pay services predominate are left with no option but to spend all their own resources and then rely upon the government for federally funded services, many of which are of lower quality than “private-pay” services. In many countries, creative financing arrangements are being explored in order to lighten the load of individuals needing expensive or long-term care. However, in some places, the stated priority of rearranging financing of care services is simply “lip service,” seen as politically correct to support, but not necessarily practically feasible. Rhetoric and the Language of Empowerment The kind of politically correct language that has more recently been heard around the issue of empowerment, and the closely related idea of patient/ client/consumer “participation” often maintains the status quo by substituting appealing rhetoric for substantive change. For example, the position of professional groups can be perpetuated through coercing people, in the name of autonomy and choice, to engage in behaviors or to make choices that the professionals deem appropriate. In the historical development of aging services (the “Aging Enterprise”) we can see that certain basic principles of autonomy have been espoused (e.g., informed consent). However, the reality of care practice, especially in long-term settings, has been more of a “colonization of the life-world” of old age, according to Harry Moody (1992). He means by this that the last stage of life has been simply reduced to biological survival, and that that goal, of simple survival, is more a manifestation of the values of a particular social and historical period than the result of any one individual’s autonomous choice. So, while current medical ethics might encourage the use of advanced directives, for example, the instruments themselves, and the goals they are meant to help a person reach, are compromised by the institutional framework and oblique language used (Moody, 1992). In one Italian study, the reasoning behind the use of physical restraints on patients in nursing homes reveals a fascinating example of the distorted manner in which the “values” of the providers outweigh the rights of the patients, but within the context of seemingly reasonable and appropriate guidelines for safety. Survey results indicated that use of re-
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straints is extremely widespread (81%) in spite of their ineffectiveness as reported in the literature. Even in this study, the investigators found that staff felt restraints contributed to greater degrees of dementia, anxiety, depression and aggression in patients. But the staff “rationale” was that restraints prevented patients from falling, or from potentially harming themselves or others, and that this “protective” function took precedence. In addition, the vast majority of decisions made about the use of restraints did not include consultation with the patient and/or the family (Constantini et al., 1997). The use of such language to rationalize certain behaviors or to achieve a provider’s goals (e.g., compliance) seems to be in stark contrast to the deeper spirit of empowerment. Gibson (cf. Vander Henst, 1997) recommends an examination of how those with power obtain it and a look at how the powerful relinquish some of their power. Even the lack of consensus as to what empowerment means or how it is defined contributes to the potential for manipulation of its better goals toward other ends. In the nursing literature, for example, Skelton (1994) notes that empowerment has been spoken of in terms of “a way of organizing teaching and learning; a strategy for equalizing power in the health care division of labor; a practice of behavior modification; a technique of pain relief; and as a political intervention aimed at reducing health inequalities between social groups.” Paradigm Shifts Required from Providers Others agree that for health professionals to truly participate and encourage a shift in control from themselves to older persons, they must be prepared to give up some of their own power and status. These changes will require a reorientation in training and education of all health and social care workers around the world (Beckingham & Watt, 1995; Clark, 1989; DeFriese & Konrad, 1993). Part of this change would be for care providers to ensure that initial assessment of older persons is framed by a resolve to support self-care and as much autonomy as is possible and felt by the recipient as appropriate. This must include a deep respect for the client’s capabilities, limitations and cultural preferences and a starting point of asking the question, “How can I enhance this person’s power to improve his or her life situation?” (Beckingham & Watt, 1995). The reality is that health care professionals cannot empower people; only people can empower themselves. Professionals, however, are in a position to create an environment in which personal empowerment can happen, and to work actively to help balance providers’ concerns and clients’ concerns in a functionally interdependent way. Empowerment is the result of self-awareness, self-growth and resources—not any particular program or service that might be provided (Gibson, 1991). Looking ahead, Stoller and Gibson (1994) ask: “How do we fashion public policy that serves to ameliorate the obstacles . . . often constructed earlier in the life course that handicap many ethnic and minority older people? How can public policy offer equal access to social and eco-
Definitions, Applications, Problems, and Prospects
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nomic opportunities to minority and non-minority elders alike?” (pp.xxvi– xxvii). As Clark (1989) concludes: “Indeed, unless empowerment becomes a theme characterizing the philosophies of consumer, provider, and policymaker alike, it is likely that the empowered consumer will become the disappointed and disillusioned recipient of policies, programs and decisions made by others” (p. 283). SOCIETAL VALUES AND THE EMPOWERMENT OF FRAIL ELDERLY PERSONS In this section of the chapter, we now turn to an analysis of how different societies have approached the need for developing a universal theme or goal of empowerment of frail elderly people among all involved in service design, implementation and financing. Here we will refer to the framework offered by H. R. Moody (1976) of a continuum of social values concerning elderly people in any society. While Moody (1976) initially developed this framework in terms of analyzing the role of educational opportunities for older persons, Hofland (1990b) expanded its application to the issues involved in creating residential environments for seniors. The four models or stages in Moody’s framework describe a continuum of social values from materialism to a holistic approach to the role of elders in a society, and they are (1) rejection; (2) social service; (3) participation; and (4) self-actualization. Stage 1—Rejection Repression, segregation or neglect of elderly people in a society exemplify the first stage, Rejection. In many countries, we can see this attitude manifested in mandatory retirement ages, regardless of any individual state of health or functioning, the rationing of health care based on age alone (e.g., organ transplants), and the segregation of older persons in “retirement villages” or the newest “continuing care communities.” In such communities, we can “put” people there at one point and know that they will remain there—often out of contact with the rest of society—until death. Even the removal of death, in many industrialized countries, from the home to a hospital or nursing home, illustrates our implicit or unconscious distaste for the vagaries of old age. In such a model, there is no motivation for conscientious design of policies or services for older persons, as they are barely visible on the horizon of our social awareness. However, given the demographics of aging in most countries today, there are few places left which can maintain a wholesale attitude of rejection of elderly people. Stage 2—Social Service In the second stage, one of Social Service, recognition of the needs of the elderly by government is present. However, this recognition is based on an
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interpretation of “neediness” of the elderly, for which they cannot be responsible. Thus, officials in the “expert-based” government must “provide” what they decide is needed. And while older persons may be receiving more services than under the first model of Rejection, there is still an implicit judgment of their uselessness. The difference is a sense of moral responsibility of the public institutions to care for them. We can see this model embodied in many public policies and program structures in most industrialized countries today. In the United States, we see this paternalistic approach underpinning most social policies regarding the older segment of our population. For example, an analysis of several developed countries revealed that the potential contribution of health-determining factors to lower mortality ranged from health care systems (11%) through environment (19%) and human biology (27%) to lifestyles (43%). However, the percentage of the U.S. health budget allocated for these factors was 90% for health care systems (e.g., managed care) and 1.5%, 1.6% and 7.9% for lifestyle, environment and human biology, respectively (Costa-Alonso et al., 1998). Specific government policies determine which limited services Medicare, the entitlement program of health care, will pay for those over the age of 65. Specifically, in 1993, 85% of Medicare expenses went to institutional care even in the face of evidence that home care might be more economical and psychologically more palatable to older individuals (Fast & Chapin, 1996). According to Fast and Chapin (1996), these current financing schemes perpetuate the use of highcost medical services even when such a high level of service is not needed to compensate for any inability to perform activities of daily living or to cope with chronic illness. There have been recent attempts to creatively address the varied needs of older individuals, such as the Channeling Projects, where individual states (i.e., Oregon and Florida) are allowed to use the block of federal monies assigned to their state to rearrange the way in which services are provided. While this has worked well in the states that have been ambitious enough to develop such projects, the fundamental system of federal limits on assigned spending has not been modified. In Finland, a group has developed a highly sophisticated computer software program to assist local authorities in the planning, monitoring and evaluation of care for older persons. Using a variety of demographic and service utilization databases, it is possible for the user to analyze the balance between demand, supply, resources and cost of services. But, in this case, effectiveness is defined as “the service system’s performance in either satisfying the client’s needs or at least in meeting the (planned) policy goals given to the care system” (Varaama, 1997). In Chapter 6 of this book, a similar plan is presented, which aims more explicitly to incorporate the desires of frail elderly people. On a more direct service level, there are also factors that operate to perpetuate the social service model of service provision. Rice, Beck and Steven-
Definitions, Applications, Problems, and Prospects
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son (1997) believe that Western societies contribute to the lack of potentially empowering methods for service delivery by valuing dependence over autonomy, compliance over individual preference, and youth over lived experience. Specifically, health care providers often expect too little of elders in terms of being able to comprehend technical information and therefore be informed enough to make an intelligence choice. Also, providers often assume that because a person is limited in one way (e.g., physically), he must also be limited in other areas, perhaps cognitively, that would inhibit his ability to participate in his own care. On an interpersonal level, today’s elders in many societies are used to unquestioningly accepting a “professional’s” opinion of what is right for them. Both elders themselves and providers do not yet “expect” that an equal partnership in health or social services is normal or desirable. Both “expect” that elders will relinquish control to the experts (Haug, 1994). This often results in the “learned helplessness” that is observed in many elders, an attitude that may also undermine any attempts to teach or encourage them to now become active in their own care. However, the principle of collectivism would suggest that society has the right to expect citizens to take care of themselves, and to avoid becoming excessive burdens in terms of health care costs and care requirements. The federal health care system in the United States, however, is sending mixed messages. On the one hand, federal guidelines mandate healthy lifestyle changes, such as those cited in Healthy People 2000 (1990); on the other hand, the federal government prohibits Medicare or Medicaid reimbursement for health promotion and preventive services such as smoking cessation and weight loss clinics. In the new managed care environment, elders have not yet been held accountable for their high-risk behaviors (Rice, Beck & Stevenson, 1997). Stage 3—Participation The third stage, Participation, is built on the assumption that some degree of being active in and, perhaps accountable for, one’s own care is important and valuable. Underlying this stage is a broader view of the dignity, social integration and self-determination of older persons. Here, the potential for growth and consistent and meaningful engagement in social life are the underlying values and articulated goals of government and citizens. We see this in the current political philosophy of the United Kingdom, where “consumer rights” are actively promoted (Boldy, 1997; Caraher, 1994; Connolly et al., 1994); Hardy, Wistow & Young, 1997; Trnobranski, 1994). These values were explicitly stated in the 1989 White Paper, “Caring for People,” and in the 1990 National Health Service and Community Care Act. The government made a three-fold commitment to its citizens: first, to enable individuals to live at home or in “homely” settings in the community, rather
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than in residential institutions; second, to provide services based not on what is currently available, but rather based on what a given individual needs; and third, to fully involve older persons and their informal caregivers in the assessment of their need for services, and the design, implementation and review of those services once delivered. While local authority social services departments were given the responsibility for development and management of this model (see Chapter 7 for a discussion of the challenges of implementation), the government has given explicit encouragement to innovation and responsiveness in service provision. In the United States, even while government policies and programs have been slow to change, the rapid growth in the number of elderly people has prompted many health care organizations to modify their attitudes and their policies. Thus, the motivation for development of self-care programs needs to be understood in the context of this changing environment in the health care system. As the amount of money spent on health care grows more quickly than the growth of the U.S. economy as a whole, there is a frantic focus on how to better organize services more efficiently and cost-effectively. A national survey of large group practices in 1990 (Zitter, cf. DeFriese & Konrad, 1993) revealed that over half provided home health care, geriatric assessment teams and a staff member responsible solely for patient care. Financing of preventive and health promotion services is changing from the traditional fee-for-service schemes to more inclusion in managed health care systems (DeFriese & Konrad, 1993). As Mettler and Kemper (1993) point out, patient involvement in health care decisions may make those choices more appropriate and relevant to the person. They believe that patientcentered medicine also helps avoid medical treatments that are not in the best interests of the older person. By encouraging shared decision making about health care, self-care programs promote the inclusion of the older person’s values as part of the deliberation process. This may ultimately result in lower utilization of high-cost, low-benefit treatments. However, because many practitioners have had their services narrowly defined by external, third-party payers, motivating change within the system is a complicated slow-moving political process (Kari & Michels, 1991). Not only do bureaucratic barriers exist, but there are also provider barriers that can block the empowerment of an older person. Jewell (1994) believes that the increasing popularity of the concept of patient participation has resulted in practitioners having “both a cursory understanding of the concept and an unreflective approach to their practice” (p. 435). For many care providers the goal has become getting patients to “be active,” assuming that any action therefore means that the patient is participating and thereby empowered, as well. Participation, as such, may range from sharing information, being involved in decision making, or actually taking part in one’s own physical care. Participation may also include the family members or other informal caregivers. However, how individual older persons would define
Definitions, Applications, Problems, and Prospects
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participation for themselves may not be the same as the way providers would (Hardy, Wistow & Young, 1990; Jewell, 1994). This conflict over the meaning of participation is yet another concrete example of the point Clark makes about the rhetoric of empowerment—meaning that may be manipulated toward ends other than true autonomous power for the individual. Stage 4—Self-Actualization The final stage of Moody’s model of social values is that of selfactualization, where individuals do, indeed, gain a true sense of power over one’s own life. This is characterized by some as a focus on spiritual values and the potential for growth. Hofland (1990b) describes potential housing arrangements under this model as “designed to incorporate the collective practice of meditation and other spiritual practices in an effort to develop individual and group consciousness.” Also, preventive and health promotional support services might be provided on site. While there are no countries that can claim this model as a universal reality, there are a few that recognize self-actualization as a goal. The ultimate goal here is for a society to evolve to a stage where the “giving” or “taking” of power between people becomes obsolete because society recognizes the individual worth and value of each individual and allows them to develop their own potential based on their particular set of values. In Canada, according to Beckingham and Watt (1995), “Health is now viewed as a resource that allows people to reach their potential by interacting with and changing aspects of their environment” (p. 479). Health care is viewed as a social good, not just a social obligation but a common responsibility to be shared by all. The Health Act of 1984 provides for universal, comprehensive, portable, prepaid and not-for-profit health insurance. This insurance covers accessible and equitable health services that are administered at the provincial level, but are provided by a wide range of public and private organizations. While there may be provincial variations in structure, services are similar and are provided in both community and institutional settings. While Great Britain has made great strides in modifying its health care system, as discussed before, there is little or no mandate in the law of social policy for professionals to do more than involve, or encourage the participation of, users and caregivers in decisions about their own future. Involvement in the decision-making process is not, however, the same as having the authority or the resources to act on the decisions made; that is, it does not require users and caregivers to be empowered in the same way as consumers of other types of goods and services. Some have argued that until they are given the resources to purchase services on their own behalf, users and caregivers will be denied real choices in how they live their lives. Empowerment, then, will involve struggles over those resources; its
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achievement will not be some kind of neutral administrative procedure. It will involve disagreements over definitions of what health is and over how to implement health-enhancing policies and actions. For example, nurses, even though professionals, at their “micro level” of direct care, are not independent from but are subject to constraints on their actions from nursing, managerial and medical hierarchies. Furthermore, at the macro level, health services are not independent of socioeconomic and political constraints on their operation. In the recent past in the United Kingdom where so much government-initiated radical change in the structure and funding of the National Health Service has taken place, the point is fairly obvious. A more invisible, but nonetheless real, controlling factor even above the macro level, is a “mega level” of governmental Departments (e.g., Ministers and not least the Treasury), where agendas for health and social care are set and where the constraints on power for patients, clients and service providers are really established (Skelton, 1994). In the United States, as mentioned in the previous section, there are discrete efforts being made to create empowering programs that uphold the values of individual dignity and self-worth and that try to support and encourage self-actualization. For example, the “strengths approach” to selfcare, referred to in the first section of the chapter, is also relevant here, on a case-management level. Collings (1991) asserts that social policy that ensures seniors the right to community-based long-term care, with payment and choice as requisite components, is required for the maintenance of a person’s sense of personal control. While a system modification that guaranteed such care would no doubt be empowering, the strengths approach has the potential to develop empowerment within the current policy and program structures. As will be discussed in both Chapters 4 and 10, there are efforts being made by the states to illustrate the feasibility of putting such values into actual practice. But, as Krivo and Mutchler (1989) state, “Appropriate types of available housing, supportive health care, financial assistance, demographic composition, or normative social support may be necessary to make [independent] living feasible for many elders.” Other necessary resources include transportation (and thus access to other services) and assistance with environmental maintenance. And, many of these resources vary from state to state or even from community to community, let alone from country to country. So, while in some areas such supports will be available, in others the lack of them will force elders into premature institutional care arrangements. Thus, Krivo and Mutchler conclude that individual choices made at a household level are dependent upon the matrix of events, characteristics and resources in and of a given community. Therefore, to develop sound public policy, governments anywhere in the world must take into account the views of older people regarding the degree to which local communities’ programs and policies actually affect the elderly population they support (Beckingham & Watt, 1995; Caraher, 1994).
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ON THE HORNS OF THE DILEMMA OF EMPOWERMENT The type of social policy that supports the notion of the consumer choice and empowerment is not, on its face, controversial. But, as Kapp (1990) points out, “In its application, it is riddled with choices among competing, legitimate social policy considerations.” As has been mentioned throughout this chapter so far, when an elderly person makes decisions or acts in ways that seem harmful, both informal caregivers and professionals are faced with conflicting commitments. The latter must choose between respecting the person’s autonomy on the one hand, and promoting his/her well-being on the other hand. Social policy is riddled with competing values, since it requires choosing not right from wrong, but right from right (Collopy, 1990; Small, 1993). For example, home care practitioners recognize that being able to live alone is not a single capacity but that it might be considered more of a continuum. These providers often care for patients in whom the capacity to care for themselves is not an all-or-nothing situation. When to intervene along this continuum is often the heart of this difficult issue; pat answers are not available. If no incidents endangering the physical safety of the client have occurred, clinicians often take a wait-and-see position in which vigilance is increased in the hope that appropriate caregivers are present in a crisis (Liaschenko, 1998). Jackson (1994) also cites the many ethical questions surrounding discharge planning. Do patients have the right to deny having family as part of the planning process? Do older patients have the right to make what may be foolish and risky choices about where to live after their discharge? Are there patients, given their health status and the costs involved, who should not be in any discharge planning program? What are appropriate screening criteria for such patients? Discharge planning includes the placement of patients in long-term care facilities. A challenge to hospital staff is to ensure that the planning process distinguishes between coercion and choice, especially for elderly patients with diminished or fluctuating mental capacity. According to Kapp (1990), the dynamics of consumer involvement run the gamut from (a) a paternalistic, almost coercive steering based on the case manager’s virtually unexamined judgment of client welfare to (b) a participatory, supportive process entailing active consumer/case manager negotiations to (c) leaving the consumer practically on his or her own to locate, recruit, hire, supervise, document, pay and perhaps fire an independent provider without case management support. Some would describe the last dynamic as an almost nihilistic abandoning of the consumer to his or her theoretical rights. Providing the proper degree of assistance to enable the real, as opposed to the nominal, exercise of choice and control without smothering those rights is a difficult, value-laden balancing act. But, as Kapp (1990) points out, to what extent does providing consumers
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with the power of the purse (that is, allowing them to hire, fire and control payment for their providers) best ensure the quality of home care services? Are older persons really capable of exercising that power responsibly? Do we deal with incapable consumers through benign neglect or by imposing intrusive, overgeneralized government regulation? How do we determine which consumers require social protection? How much risk will we tolerate and who will endure it? Choice and control imply an allocation of risks as well as rights. If we ask consumers what they want, are we ready to live with their answers? To what extent will we permit home-care consumers to assume the risks attendant to their (sometimes foolish) choices and to waive the right to seek redress from providers who accede to consumer choice (Kapp, 1990; Rice, Beck & Stevenson, 1997)? So, while we hope that people choose to do what is “for their own good,” we know they don’t always do so. For example, the opposite of selfcare is self-neglect. We’ve seen this become an issue of growing concern with the increased visibility of deinstitutionalized, mentally ill, homeless elderly people and the increased number of older people still in their own homes or in institutions. Self-neglect is frequently secondary to cognitive and physical limitations that result in institutionalization. But when does self-care turn into self-neglect? And who has a right to make that decision? When does society have an obligation to intervene by requiring individuals to use services that are available to them? What if you create these “better” options and people still choose to behave in a manner deemed unhealthy or inappropriate? Who do you blame? Is it society’s right to intervene because of the eventual cost and burden of the elders’ inevitable health decline, partially stemming from poor care (Caraher, 1994; Rice, Beck & Stevenson, 1997; Small, 1993)? The basic principles of autonomy that we began this chapter with would suggest that frail older persons have the right to live at risk, if they so choose. Therefore, the goal may be to create the most empowering environment we can, as a society, as practitioners and as informal caregivers, so that at least those older persons who would choose to live more healthfully and happily, have the freedom, resources and power to make that choice. In service of this goal, Neill (1994) offers what might be seen as a negative definition of empowerment: “It is not about the things you do to or for people . . . it is the impediments you take away leaving space for folks to empower themselves.” We find this view of empowerment particularly compelling and have organized the rest of the book around presenting programs and policies designed to remove such impediments. Prior to presenting such case studies in detail, the second introductory chapter provides an overview and classification of the various opportunities and impediments to empowerment. In this, the relationship of each case study to the classification scheme and its contribution to mitigating or removing particular impediment(s) is outlined.
2
Opportunities and Impediments in Housing, Health, and Support Service Delivery Leonard F. Heumann, Duncan P. Boldy, and Mary E. McCall
There are fundamental impediments to empowerment models of care and support that are rooted in the value biases of society. These values and biases are reflected in the program and service options available to its citizens and differentiated by its care providers, its social, economic and governmental institutions, and in the physical and social environments in which we all live. In order to structure future discussions and considerations of empowerment related to frail elderly people, we present a classification scheme or taxonomy of the numerous and varied potential limits and impediments. The classification is structured under four groups (or “limits”), as follows: providerbased; environment-based; client-based; and societal-based (see Figure 2.1). In the various chapters of this book we illustrate, via case studies, how particular programs have attempted to address some of the impediments to empowerment under each heading. The particular case studies were chosen because we believe they provide universal meaning and interest to persons in all countries who seek to maximize personal control and functional independence for even their most frail senior members. The impediments addressed by each chapter are summarized in Figure 2.2, a matrix that indicates whether a particular impediment is a central, primary or secondary focus of the chapter. Book chapters are grouped into three sections, namely: • Service Providers and Empowerment: Information, Training and Coordination • Environment and Empowerment in Conventional Housing • Client Empowerment in Long-Term Care.
Figure 2.1 Framework of Limits and Impediments to Empowerment
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Figure 2.2 Matrix Showing Impediments to Empowerment Covered by Chapters of the Book
This framework focuses on frail and dependent people for whom independence and empowerment have real limits. For them to be empowered to the margin of their ability and desires requires proper training, cooperation, coordination and flexibility of multiple care providers, both formal and informal. Real empowerment may only be achievable after a basic “paradigm shift” in the attitudes and beliefs of formal and informal service providers about the abilities and worth of frail older persons. We therefore intentionally focus first on impediments related to empowering frail elderly people in the area of Provider Based Limits. PROVIDER BASED LIMITS If providers and their service format are not ideologically sympathetic to support provision that puts elderly clients in control at the margin of their
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ability and desire, then they become an impediment to empowerment. This can be reflected in inappropriate or limited formal provider training and education. It can be reflected in a support delivery philosophy that prohibits client involvement in planning, or that is biased or limited by funding mandates, program design or political policy, to specific services delivered only in specific ways. Such impediments can also be reflected in failure to fully and carefully coordinate with other service providers into a comprehensive and unified whole. Poor management of service coordination can intrude on personal privacy and eliminate one’s remaining independence and disrupt or eliminate natural informal support bonds with family and friends. All these limits can lead to atrophy of remaining skills and the will to retain whatever independence remains. This can then lead to inappropriate referral and admission to institutions. Provider Based Limits focus on individual control over lifestyle, housing and care management and retaining or obtaining support settings of choice that fit the preferences of each frail individual, rather than on political empowerment directly. The final Provider Based Limit to empowerment is an example of one that we need to list but cannot go into much detail defining. Civil and criminal law regarding care, risk and professional practice can vary dramatically from country to country depending on economic market structure, social welfare values and legal structure. Laws, codes and regulations that can affect one’s ability to choose housing and support options can even vary within states and provinces of a country. Part II of the book, “Service Providers and Empowerment: Information, Training, and Coordination,” comprises four chapters, each of which address many of the provider impediments in service delivery, as well as common challenges in redesigning service delivery and choice in new ways. Three of the four chapters (3, 4, and 5) present specific and concrete methods by which to increase the involvement and empowerment of frail elderly persons in service delivery. With some similar degree of overlap, three of the chapters (3, 4, and 6) address the challenges that are faced on a societal level in attempting to change service delivery modes. One major challenge is how to capitalize on cultural values to move them in a direction that acknowledges the realistic pressures and changes that are happening in each society. For example, in Chapter 5, we see the poignant reality of a very traditional society (Japan), whose model of caregiving and service provision has historically been the family, facing the challenge of how to move to a new model. This new model is one of more cooperation between informal and formal modes of service and care. In Chapter 6, we are given a much broader perspective on the potential costs and benefits on a larger, economic scale of choosing to focus on “empowerment” as the stated, or even implicit, goal of service delivery. This focus on empowerment may be made versus other, perhaps equally laudable, goals of increasing the days that a person
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may stay in his own home, or reducing caregiver burden. Each of these chapters discusses the challenges and impediments in service provision those four different societies face, and presents ways in which both local and national creative efforts have been made, and are still being made, to overcome these impediments. In Chapter 3, “Promoting Empowerment in Residential Aged Care: Seeking the Consumer View,” Duncan Boldy and Linda Grenade present a new approach in Australia for involving frail elderly persons in evaluation of service provided in residential care. This approach arose from the national recognition of the need to meet the growing care requirements of an increasing elderly population. This recognition culminated in the development of the Aged Care Reform Strategy of 1986. One of the goals was to place an increased emphasis on community care and less emphasis on institutional residential care, and to develop specific outcome standards and measures for residential aged care facilities. This chapter presents the efforts to assess a key component in service delivery, namely the perspective of the frail older resident. While very few would argue the importance of respecting consumers’ views, there are several challenges involved in this process, which the authors discuss. One of the key lessons to be learned from this enterprise is that involving consumers directly in service evaluation is costly and time consuming. While this process may also potentially identify conflicts of interest (e.g., institutional fiscal constraints vs. residents’ desires), the overriding values of individual worth, respect and empowerment must take precedence over easing institutional processes and financial considerations. Knowledge of clients’ views and wishes, and biases in service delivery, are the impediments that form the central focus of this chapter, with primary focus also being directed toward addressing issues related to clients’ mental and physical limitations. In Chapter 4, “Reimagining Senior Empowerment in Service Delivery: Creative Applications in a Global Context,” we see how local agencies and communities can, on a small scale, attempt to empower local residents in a variety of areas of concern to them. Mary McCall presents three different U.S. programs or projects that address issues of housing needs, physical health needs and social-emotional needs of elderly residents living in two communities. One is a relatively affluent suburban community while the other is government-subsidized housing for low-very low income residents in an urban, high-rise building. These three projects reflect common goals of (1) involving elderly persons in defining the objectives of programs designed to “serve” them, (2) providing an avenue for voicing their needs and desires in an arena where providers (either housing managers or local city officials) will hear them clearly, and (3) engaging various agencies and local groups in collaborative efforts to promote empowerment of elderly persons. The projects demonstrate the success that can be achieved in a diversity of settings with the cooperation of a diversity of agencies and constituencies,
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and the ways in which “win-win” situations can be created. Similar to the authors of Chapter 3, this author makes it clear that to conscientiously move toward empowerment a great deal of effort and creative energy must be marshaled to overcome the status quo of “how things are usually done” and the ease of inertia in organizations. But the outcome of respect and dignity of individual persons is worth the time and effort expended. Coordination and biases in service delivery represent the central foci of this chapter, with a primary focus being placed on issues related to the training and knowledge of service providers and flexibility in service design and delivery. In Chapter 5, “Retaining and Expanding Empowerment in the Transition from a Family to a Community-Oriented Support System: Japan in the 21st Century,” we have the unique opportunity to get an “inside” view of a society in the midst of a major cultural shift. Tokie Anme poignantly documents that move from a traditional, Eastern, family-based system of care and support to one where the influences of Western culture have forced Japan to meet the needs of a growing older population (similar to Australia in Chapter 3) in new ways. Some of these ways feel to Japanese citizens as if they are going against their cultural values. We are given an outline of the national effort to install systemic changes in local and national care systems. While on the national level many financial resources have been committed to building the nursing homes and care facilities projected to be needed, on the local level, smaller communities are working to promote a “culture of empowerment.” The strategies used to engage older Japanese in taking personal responsibility for their health and wellness are described—for example, getting them to “buy in” to the new ways through the importance of respecting their values and meeting them on their own terms in their own villages and neighborhoods to convey respect. As in Chapter 3, the importance of good organization and development of methods is emphasized. As in the other chapters in this section, it is clear here that a multipronged and collaborative approach between all constituencies (providers, elderly persons, families and service managers) is a requirement for success. Like the previous two chapters, this chapter has a central focus on service delivery biases and coordination, in the context of a particular set of cultural values. Issues related to the role and place of training, knowledge and informal care are also prominent, whilst particular attention is also given to family dynamics and ageism. In Chapter 6, “Empowerment in Post-Reform Community Care in England and Wales,” Bleddyn Davies gives us a unique economic perspective on the costs and benefits of choosing various goals in community care models. Somewhat similar to Chapter 5, we are presented with a broad national view of changes in the goals and methods of service delivery in a society facing increasing needs for services. For example, the choice to maximize the goal of empowerment of frail elderly persons may be at the cost of the
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number of days that a person could stay in her own home. If empowering a person to choose to stay in unsafe conditions means she needs nursing home care sooner than if she had help at home, we are making a trade-off. Davies’ main point is that many economic outcomes may or may not reflect the explicit goals that government state, but may in fact, be a manifestation of implicit goals of which we are unaware. His call for making the implicit more explicit in economic decisions—which underlie all service delivery systems—is a crucial one that needs to be heeded. This chapter also has a central focus on service delivery biases, in addition to inflexibility of program design, funding and the role of informal care. Attention to the knowledge of clients’ views and wishes is a primary focus, as is the issue of informal care, fragmentation of services and lack of coordination. ENVIRONMENT BASED LIMITS These listed reflect those imposed on empowerment by housing and surrounding environments. The very location of a home can be an impediment. Homes located in areas with high crime, high pollution, steep topography, no pavements/sidewalks and heavy traffic with no safe way to cross streets, are all examples that can limit mobility and trap a frail elderly person in her home. Environmental barriers within the home, like stairs, inadequate heating and lighting and inappropriate room arrangements and furnishings, can all limit functional independence. Certain forms of living arrangements—be they alone, with family or strangers—can limit the ability to empower a person with desired support options. Even homes that are adequately furnished and located can be impediments if they are too costly and difficult to manage and keep clean. The local economy and supply of housing options can be so limited and costly that the preferred lifestyle choices with regard to living arrangements and care options are not realizable. Modern technology can often eliminate human support and increase privacy for those who choose such an option, but lack of knowledge, affordability, training and human service delivery biases can all prohibit or limit the uses of such equipment and devices. Finally, local building codes and regulations can prevent certain housing options from being built in desired locations or prohibit living arrangements between unrelated individuals. Part III of the book, “Environment and Empowerment in Conventional Housing,” comprises three chapters, each of which addresses some major impediments in working with the physical and built environment to facilitate empowerment of frail elderly people living in conventional community housing. All three chapters address the very serious impediment to empowerment of the traditional problem-centered medical model of service and care. The consequence of this biased focus is an underestimation of the role of the
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physical environment in putting power over decisions around daily life activities in the hands of aging residents. In Chapters 7 and 8, we see the constraints put on the employment of environmental options by financing systems and programmatic biases that do not provide the institutional or organizational context in which to incorporate such options in care or service plans. The focus of Chapter 8 is a clear documentation of the lack of basic knowledge about environmental modifications that, while cutting costs, can provide frail elderly people with more freedom and power within their most basic and important environment—their home. Chapters 7 and 9 provide case illustrations of the ways in which some communities and providers have struggled to overcome institutional, organizational and even community impediments to create meaningful and empowering conventional living environments for frail older persons. In Chapter 7, “Another Way of Living in One’s Own Home: The Salmon Group Projects,” we are presented with a clearly articulated analysis of the tensions faced when trying to change the system—to be a “salmon swimming upstream, against the current.” The unique approach to conventional housing—small, homey, community-based residences—serve to illustrate the challenges encountered in truly empowering frail elderly people, especially those persons with severe mental and/or physical limitations. The Salmon Group represents a broad-based effort in countries throughout Western Europe to move from a disease-centered “medical model” of dealing with elderly persons to a person-centered “life model,” which is more processoriented than goal-oriented. This process includes the older person at each stage from housing design, location choice, selection of other residents and staff, to the scheduling of meals, cleaning and other services. The aim is to keep people in their communities, ideally within their same neighborhood, even keeping their same family doctor and other private networks. The challenges of precipitating a paradigm shift in professionals away from the “problem” to the “person,” of helping the helpers give up some of their power in order for older persons to be empowered, and of suggesting alternative approaches to program funding, have been creatively met by the Salmon Group. They clearly acknowledge the risks and potential dangers associated with true empowerment—such as letting someone reject recommended services or support—but believe that the rewards of individual dignity of all persons is worth such risks. Living arrangements and housing options, linked to issues of location, are the central foci of this chapter, along with concerns related to service delivery bias. Inflexibility in program design/funding and cultural aspects are also addressed as primary foci. In Chapter 8, “The Role of the Built Environment in Holistic Delivery of Home- and Community-Based Care Services to Frail Elderly Persons,” Leonard Heumann analyzes the attitudes of care and case managers in Australia toward the use of environmental modifications and adaptations to the
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homes of frail elderly persons. In his survey and interview research, it is clearly shown that the stated goals of managers were to keep at home those elderly persons who were at highest risk of institutionalization, and to help them maintain the highest level of independence and quality of life possible. In spite of these stated goals, however, the actual use of or integration of physical modifications in private homes was virtually non-existent. Not only was this discrepancy found at the individual care manager level, it was mirrored at the bureaucratic and institutional levels as well. The two new home and community based care management programs developed in Australia in the early 1990s were to meet the goals of decreasing costs and increasing efficiency in service delivery. Yet the diversity of kinds of services available, of which most elderly persons were unaware, worked against efficiency, as well as empowerment of clients. In addition, the implicit preference for traditional human social services precluded a need for service providers to become aware of and utilize newer technological devices and barrier-free environmental modifications. Government funding regulations actually prevented providing such technologies and modifications. In most home and community based services, human services continue to be the primary option. Care managers’ attitudes toward, knowledge of, and ability to replace human services with supportive devices or environmental modification remain minimal. This eliminates a choice for residents in need of assistance with independent living who want to maximize privacy and hence limit the presence of human service providers in their homes. Built environment barriers, knowledge of support features/technology and the complexity of maintenance and service delivery bias are the central foci of this chapter. Particular attention is also paid to issues of service provider training and the lack of knowledge on their behalf of the views or wishes of clients. In Chapter 9, “When Community Planning Becomes Community Building: Place-Based Activism and the Creation of Good Places to Grow Old,” Philip B. Stafford presents a truly community-based approach to empowering older persons in creating, as he calls it, “a good place to grow old.” He describes and analyzes the efforts of the Evergreen Institute to conduct collaborative research and community development activities toward this end in the context of the traditional medical model of health care and service delivery. He articulates the novel assumptions of their work—that community is the smallest unit of health, and that aging is not about time, but about place. He also outlines many of the creative methods used to facilitate a new vision of community and care for older persons. Members from all age groups in the community are involved in planning through mechanisms such as focus groups, household surveys, ethnographic research, and interviews with older persons conducted by students and other intergenerational activities. This chapter illustrates the considerable successes that can be achieved, in spite of attitudinal and institutional impediments, when all concerned are
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empowered throughout the process. As stated in the conclusion of this chapter, “the process, when well done, is time-consuming.” But, clearly, for this American community in Indiana, the time has been very well spent. Issues related to support design and complex maintenance, linked to housing choice, form the central foci of this chapter. Of primary concern are the lack of knowledge of clients’ views/wishes, fragmentation of services and lack of coordination; also, problems caused by code and regulation restrictions and wider societal based limitations related to program choice alternatives and the willingness to empower and be empowered are discussed. CLIENT BASED LIMITS Frailty by definition presents limitations, but the obvious ones such as physical and mental disabilities, can be exacerbated by problems with selfesteem, culture and language, and basic expectations about remaining in control in old age. Often it is how the frail senior’s family thinks about empowerment in old age that becomes a major obstacle to empowerment. Family dynamics involving cultural roles, length of life, cost of care tradeoffs between the generations and many other factors can seriously affect the will to retain power over one’s support and living choices. Part IV of the book, “Client Empowerment in Long-Term Care,” addresses empowerment issues for different groups of elderly people receiving long-term care in a variety of settings. Issues of rights, involvement, ageism and care staff attitudes, training and selection are common themes, as are those of cooperation and collaboration between caring “systems.” In Chapter 10, Harvey argues the case for the residents of nursing homes to be granted the right to live at a “level of risk” similar to that considered acceptable in society at large. The rights of residents over those of the organization are emphasized in a particular case study nursing home, which has developed thirty-one components covering five key areas. Kodner and colleagues in Chapter 11 discuss how “consumer direction” can be achieved in home health care, even within a managed care model. They aim at having informed consumers (clients and family caregivers) participating in the assessment of their needs, how these are met and the monitoring of service quality. Carmichael and Gething, in Chapters 12 and 13, respectively, specifically discuss problems of ageism and cooperation and collaboration between the aging network and the mental health and disability systems. Achieving empowerment for clients receiving long-term care is perhaps one of the greatest challenges for caring systems, given the particular vulnerability of the clientele. In Chapter 10, “The Rights of Elderly People in a Nursing Home—A Little Creativity, a Lot of Respect, a Taste for Adventure, and an Allergy to Bureaucracy,” Germain Harvey presents a case study of a Canadian nursing home which puts residents’ rights at the center of its philosophy. Taking
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the stance that elderly residents of institutions are full citizens who should enjoy the same rights as other people, this public institution, in which nearly 200 people live, has developed what is described as a “unique living environment approach.” In order to increase resident choice, a level of risk has been defined, based on what is typically considered acceptable in society at large. Pursuing its philosophy further, the nursing home has created the position of living environment advisor (or residents’ advocate). The role of this advisor is to ensure the quality of life and living environment of the residents, and create and implement the necessary mechanisms to ensure the primacy of the rights of residents over those of the organization. A Charter of Rights and Freedoms has been developed, the thirty-one components of which relate to five major areas, namely: information and freedom of expression, privacy, respect and dignity, continuity, and responsibility and participation. Perhaps the fundamental message of this chapter is that a key judgment of a society is how it treats its most vulnerable citizens, which implies that there should be one set of rights for all, whether living at home or in an institution. Provider based limitations form the central foci of this chapter, in particular those related to training/education, knowledge of clients’ views and wishes, biases in service delivery and inflexibility in program design and funding. Issues of ageism and client self-esteem are also central foci, with primary focus being directed to an awareness of choices and options and the willingness to empower and be empowered. In Chapter 11, “Bringing Managed Health Care Home: A New Service Strategy for People with Chronic Illnesses and Disabilities,” Dennis Kodner and colleagues describe a managed home care program for people with chronic illnesses and disabilities which is being planned according to a consumer directed philosophy. This involves informed consumers (clients and family caregivers) participating in the assessment of their needs, determining how they wish such needs to be met and monitoring the quality of service they receive. The starting point is with consumer desires, not with the problems or availability of services. Clients have a choice of provider, with the option of changing to another provider, or even another multidisciplinary care planning team, if they so decide. Ownership in the program includes clients represented on the governing board (and encouraged to play an active role) and client involvement in the proposed quality improvement process. Particular attention is being paid to the selection of staff who are open to the idea of client empowerment, these staff then being trained to be sensitive to the consumer’s role and point of view. This model demonstrates that consumer direction is possible within managed care, despite it being generally considered to be synonymous with a “command and control” approach. Issues of staff training, fragmentation of services and lack of coordination and inflexibility in program design and funding form central foci of this
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chapter. Issues of personal choice by clients are also central, with a primary focus on the mental and physical capacity of clients and resource limitations. In Chapter 12, “Elderly Persons with Severe Mental Illness: Empowering a Neglected and Growing Population,” Paul Carmichael presents an illuminating account of the various barriers that exist to effective mental health service delivery to elderly people. He spells out the various provider-based and client-based limitations, pointing out that those that are provider-based are especially important to identify and overcome, including inadequate relevant provider training and education. A common problem identified is the general lack of cooperation between the aging network and the mental health system. The concept of “social disability” as a need indicator for people suffering from chronic mental health conditions is presented as providing an opportunity for those concerned about empowerment of elderly people to find common ground and shared “solutions.” Carmichael points out that within the mental health recovery movement there is a strong emphasis on social skills training to help individuals cope with, or to some extent overcome, their social disabilities. This is considered as an essential contribution to more fully empowering frail elderly people with severe mental illness. As already indicated, issues of training/education of service providers are the central focus of this chapter, addressed specifically to the mental capacity of clients. The lack of knowledge of clients’ views and wishes is a primary focus. In Chapter 13, “Older People with Longstanding Disabilities and Their Caregivers: Empowering a Neglected and Growing Population,” Lindsay Gething addresses issues of empowerment related to people aging with longstanding disabilities. She makes the case that a variety of impediments reflect lifelong cumulative disadvantage related to a lack of relevant government policies and service provider neglect. Ageist attitudes prevalent among older people themselves, as well as service providers, policy makers and the general community, exacerbate this situation. Gething points out that particular biased definitions of healthy or successful aging need reworking to ensure that they encompass aging with a disability. Intellectual disability poses particular issues related to empowerment, as many (probably most) people with intellectual disabilities have lived most of their lives in situations where they have little sense of control or freedom of choice. Goal attainment scaling is presented as a strategy for including older people in decision making related to the design and evaluation of service programs. The approach encourages a multidisciplinary group of care professionals to listen to their clients and work together in implementing a care plan. Similar to the previous chapter, issues related to the training and education of service providers, linked to both physical and mental capacity, are the central foci of this chapter. The lack of knowledge of clients’ views and wishes forms a primary focus.
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SOCIETAL BASED LIMITS Finally, if a society does not value its seniors, or only provides very limited program policy choices for care management in old age, these become impediments. This is especially true for those seniors who lack the financial resources to make up the difference in societal ignorance or complacency. In some cases the choices are there but society fails to provide the information or knowledge to make optimal choices. This is most prevalent when certain ethnic or economic minorities are systematically uninformed or only provided with the options available to the majority. The ultimate impediment is always ageism on the part of a society. In the final section of the book, we offer two chapters that step back from specific programs in specific countries and take a broader view of empowerment and the avenues to achieving it for frail older persons. In Chapter 14, “Empowerment in Pathways Through Care: A Cross-National Comparison of Care Delivery Systems in Britain and Germany,” Michaela Schunk offers us a cross-national analysis of the intersection of many levels of impediments in service delivery. Her investigation reveals major variations in the two countries in both the nature and functioning of the social state and in the organization of service delivery through social agencies. Due to this institutional variation, she illustrates how the frameworks for empowerment of frail elderly persons can be very different across countries and societies. In the final chapter of the book, “Empowerment of Frail Elderly People and the Vision of a Self-Actualized Society,” we revisit the two theoretical frameworks we began with in Chapter 1: Philip Clark’s philosophical approach to understanding what empowerment can mean and Moody’s social values continuum in relation to aging persons in a society. We highlight major common impediments found across the chapters but remain strong advocates for the hope of achieving true empowerment for frail elderly persons in all societies. We believe that regardless of the particular definition of empowerment currently understood or used, or the place of any given society along the path to a self-actualized society, the struggle to achieve empowerment for some of the most vulnerable of our world is a worthwhile and dignified endeavor.
PART II
SERVICE PROVIDERS AND EMPOWERMENT: INFORMATION, TRAINING, AND COORDINATION
3
Promoting Empowerment in Residential Aged Care: Seeking the Consumer View Duncan P. Boldy and Linda E. Grenade
This chapter presents an approach developed in Australia by which residential aged care services can provide their residents with the opportunity to express their views and any concerns they might have about the quality of their care. It considers both the extent to which the overall approach contributes to the increased empowerment of frail elderly people in residential care, as well as the extent to which specific impediments to empowerment, as identified in Chapter 2, are (or could be) mitigated through its utilization. First, however, we present some background information about aged care trends and associated policies in Australia, with an emphasis on those particularly relevant to issues of quality improvement and empowerment in residential aged care. Demographically speaking, Australia is a somewhat young country, with only 11.7% of its population aged 65 and older in 1993 compared to, for example, 15.8% in the United Kingdom (Gibson, 1998: 8). However, the Australian population has been aging more quickly in recent years, so that it is rapidly catching up. High rates of growth in the very old (85⫹) population, along with policy considerations, have led to considerable changes in the Australian aged care system, culminating in the Aged Care Reform Strategy, which was implemented over a ten-year period beginning in 1986. Relevant aspects of this strategy include: • a revision of the national planning guidelines leading to a greater emphasis on lower dependency institutional care (hostels—similar to residential homes) rather than nursing homes.
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• the introduction of specific “outcome standards” for residential aged care facilities. • increased resources for home and community care (Department of Health, Housing and Community Services, 1992).
OUTCOME STANDARDS, ACCREDITATION AND THE CONSUMER VIEW A key trend in health and social services in many developed countries is the increasing recognition of the relevance and importance of the consumer’s voice in determining how well services are meeting needs. In the residential aged care sphere in Australia, one of the most notable developments in this regard has been the introduction of outcome standards. These standards, initially developed for nursing homes (1987) then later for hostels (1990), have been used as a basis for external monitoring and assessment of residential aged care facilities by the federal government. While this monitoring and assessment process has always taken residents’ views into account, it has not done so in any systematic way, relying largely on ad hoc, often impromptu “interviews” with a small number of residents during visits by standards-monitoring teams to different aged care homes. Revised residential aged care standards, which reflect a number of recent changes within aged care provision, linked to accreditation, were introduced in 1998. A key feature of these revised standards is the requirement that service providers demonstrate that they have in place appropriate management systems, which permit continuous quality improvement (CQI) across all their operations. This requires that aged care facilities adopt a cycle of monitoring, assessment, action and follow-up. A particular example of CQI given in the standards guidelines is that “consumers are more informed and satisfied.” In addition, it is indicated that CQI activities should be responsive to management, staff and residents; in fact, CQI activities should actively seek their feedback “on all aspects of the services provided” (Department of Health and Family Services, 1998: G-8). Evidence that appropriate mechanisms have been implemented to meet these requirements is now a key aspect of the new accreditation process. At the formal level, this requirement that residents’ views should be systematically incorporated into quality improvement systems is an important development related to the increased empowerment of residents, in that they are being given the opportunity to participate more directly in the planning and provision of their care. KEY ISSUES IN ELICITING RESIDENTS’ VIEWS Consumer satisfaction has been increasingly acknowledged as an important indicator of the quality of care in relation to health and human services (e.g., Westbrook, 1993), including the field of institutional care for older
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people, and a number of studies have provided important insights into matters of concern to residents (e.g., Bartlett, 1993; Willcocks et al., 1987). Resident/patient input related to the assessment of quality of care issues, linked to the standards-monitoring processes, is now quite common in the United States (Phillips-Doyle, 1992). It is acknowledged that consumer views can provide an additional source of information about quality of care issues (including those explored via statutory standards monitoring) and valuable feedback to managers, administrators and staff about the services they are providing, including information about any deficiencies. There are, however, many problems associated with measuring consumers’ views, and these have been well documented (e.g., Carr-Hill et al., 1989; Peace et al., 1997). First, the validity of formal measurement instruments is often questionable. In the absence of any agreed-upon satisfaction criteria or of a direct measure of satisfaction, there can be no guarantee that an instrument is measuring what it is intended to measure. Second, instruments often lack reliability, as stability over time and between different raters is not usually demonstrated. Third, the scale used may influence the quality of the instrument; for example, rating scales using “excellent” to “poor” have been found superior to satisfaction scales using “very satisfied” to “very dissatisfied.” Fourth, there is often little opportunity provided for the collection of qualitative data via open-ended questions, so as to give depth and meaning to quantitative scores. Fifth, measures have often been used by providers to identify unsatisfactory elements of care, but not necessarily to develop consumer criteria for quality of care. There are several other issues concerning the assessment of consumers’ views. Given the increasing mental and physical frailty of residents in nursing homes, it is usually not possible to obtain feedback from them all. The extent to which family, caregivers or health professionals are able to act as residents’ agents or proxies is thus an important question. Who is most appropriate to undertake an evaluation is also an important question. If it is to be conducted by service providers themselves, there are many sensitive issues, including possible bias in the selection of residents. The tendency of residents to give bland responses, and their reluctance to criticize services upon which they are dependent, further hinder the usefulness of consumerderived information. This is exacerbated by the low expectations of many older people; residents’ views may reflect not only their present circumstances but also adverse previous life events and experiences (such as the war years, the Depression and other hardships). Finally, it can be very timeconsuming to administer consumer instruments, particularly interview schedules. AN AUSTRALIAN APPROACH The overall aim of our project was to develop a manual or package that would allow managers and administrators of aged care homes in Australia
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to explore in depth the needs and concerns of their residents and, thereby, to identify any issues requiring attention or action. It was also seen as a means by which residents themselves could voice their opinions about a range of issues relating to living in the homes, which could be used as a basis for both immediate action as well as longer-term planning. The approach developed provides one means by which the consumer consultation and input requirements of the new accreditation system outlined earlier can be met. The project, which was funded by the Commonwealth Department of Health and Family Services, was conducted on a national basis and extended over a period of approximately two and a half years, commencing in mid1995. Residents played a vital role throughout the project, which also involved extensive consultations with service providers and consumer representatives. The process of developing the manual occurred in a number of stages, namely: 1. Development of survey instruments. 2. Testing of survey instruments and development of a draft manual. 3. Testing of the draft manual and production of a final version.
The first stage of the project focused on identifying the key issues and problems associated with obtaining consumer feedback (in particular within residential aged care) as well as any existing relevant instruments that might be useful. A further aim was to identify key dimensions as well as specific issues to be included in the survey instruments. These aims were addressed via a review of relevant literature, focus groups with residents and/or their representatives in a variety of aged care homes around Australia, and consultations with other relevant stakeholders (e.g., staff and managers of aged care homes, consumer organizations, researchers in the aged care area). The involvement of residents (and/or their representatives) in this initial stage of the project was regarded as particularly crucial in that it helped to ensure that the survey instruments developed would be meaningful and relevant to them. Fairly early in the project, the decision was made to focus on the personal interview method as the most preferable survey option. This decision was based not only on evidence from the literature in terms of the strengths and limitations of different methods but also on our own previous experience in aged care research. In particular, it was felt that providing an opportunity for residents to discuss their views and concerns on a more in-depth basis provided a better means for identifying the issues of importance to them. Particularly from a service provider point of view, however, the survey by interview method has a number of limitations in terms of, for example, the time and cost commitments involved. For this reason it was also decided to
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include a self-complete (or self-report) questionnaire as another survey option, this being derived from the interview schedule. The content of the two survey instruments was based on a number of dimensions and issues identified from analysis of the information obtained via the focus groups, discussions with other stakeholders and the literature review (which included various policy documents such as the current outcome standards for residential aged care). Key dimensions included adjustment to moving into residential care, the physical environment (e.g., residents’ rooms, general amenities, gardens and grounds), social life, and services and care. Questions relating to issues such as freedom of choice and resident involvement were also included. A major challenge at this point was to develop an instrument that was not too long but that still managed to be sufficiently comprehensive. Two versions of the interview schedule and self-complete questionnaire, respectively, were developed. One was for use with residents directly, the other was for use with proxies (or resident representatives) in cases where residents, for reasons such as cognitive impairment, were not able to participate directly in the survey process. While recognizing the limitations of the use of proxies, it was felt to be the most preferable compromise, given the general survey approach adopted, in that it at least attempted to obtain a perspective on behalf of the resident. An important feature of the interview schedule, in particular, was the emphasis on open-ended questions, which allowed for in-depth discussion of the different issues covered. It also provided the opportunity for participants to identify other issues and concerns. Given the target group in question, the self-complete questionnaire was of necessity a much more structured instrument, based primarily on a rating scale response format (check a box), although there was some opportunity for participants to raise other issues or make additional comments if they wished. In order to make the latter as user friendly as possible, the questionnaires were produced in large print. The second stage of the project involved extensive testing of the survey instruments developed in the first stage as well as development of the draft manual. Instrument testing, which, as indicated earlier, focused mainly on the interview schedule, was conducted in a range of aged care facilities around the country. This included metropolitan and rural facilities of varying sizes and types (e.g., new, such as modern cluster housing design; traditional or old style), which were sponsored by different types of organizations (e.g., religious or charitable groups, local government). Within each facility, a wide variety of types of residents were involved, although in homes with higher proportions of high dependency residents, selection was largely based on ability and willingness to participate. A total of 258 residents or their representatives, living in 28 facilities, were interviewed. The interviews aver-
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aged 30 to 45 minutes and were conducted by the authors and a research assistant recruited for the purpose. The process of testing and refining the schedule was a cyclical one, involving interviewing residents (and/or their representatives) in a number of facilities, reviewing the appropriateness of the schedule, and making relevant modifications. Throughout this process, residents, as well as service providers and other stakeholders, were also encouraged to give their views on the schedule, in terms of content, wording and so on. The dimensions covered by the final versions of both interview schedules and questionnaires were similar to those mentioned previously with some minor modifications; for example, greater emphasis was placed on covering issues relevant to residents’ involvement with and in the local community. As regards validity and reliability, the former is felt to have been ensured via the consultations and literature review conducted as part of the first stage as well as the testing, refinement and ongoing consultation conducted throughout the second stage. The interview schedule was also tested for inter-rater reliability which resulted in some changes being made, primarily in relation to question wording (e.g., to eliminate possible ambiguity). After appropriate changes had been made, the resulting interview schedule was found to demonstrate a very high level of reliability. The self-complete questionnaire was also tested in a range of facilities (13 in all, covering a total of 159 residents) and modified as appropriate. As for the interview schedule, feedback about the questionnaire from residents as well as service providers and other stakeholders was encouraged throughout the testing process. The questionnaire was found to have a high level of internal reliability (based on Cronbach’s Alpha) and stability (test-retest reliability). The final phase of the second stage of the project involved developing other components of the manual, specifically a means by which the information obtained from both the interview schedules and questionnaires could be summarized (either manually or via computer), a proforma reporting format and guidelines relating to surveying residents using the respective methods. These guidelines included advice regarding resident selection, use of survey instruments, choice of interviewers, (where involved), summarizing and interpreting the results and, importantly, strategies for follow-up action that placed heavy emphasis on the (continuing) involvement of residents. Also included was an appropriately modified version of the Mini-Mental State Examination questionnaire (Folstein et al. 1975) to be used, if necessary, as a means of identifying residents who would not be capable cognitively (e.g., due to dementia) of participating directly in a survey (i.e., necessitating the involvement of a representative). The third and final stage of the project involved distributing the manual to a variety of residential aged care facilities for them to administer independently. Managers of the 33 facilities involved in this stage were free to
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choose whatever approach they wished to survey their residents, with almost two-thirds opting for the survey by interview approach. Feedback about the manual was obtained via a written evaluation form sent out with the draft manual in conjunction with follow-up phone calls and some face-to-face discussions. In general, the feedback obtained was extremely positive, with the manual being considered sufficiently comprehensive, easy to understand and use, and a source of valuable information. Apart from a variety of comments relating to specific sections of the manual (e.g., advice on selecting residents to be included in a survey), the most common issue raised was the overall time involved in preparing for and conducting the survey itself, particularly in relation to summarizing the information provided by residents. The view of the authors is, however, that if facilities really wish to know how residents feel about the standard of care and services being provided, the process will inevitably be time consuming. The final version of the manual has emphasized this point even further. The inclusion of a survey by self-complete questionnaire, however, does provide a less time-consuming (and also less costly) option for facilities if they wish to use it although, as previously mentioned, and particularly in terms of really providing residents with an opportunity to air their views, the survey by interview approach is a much preferable option. OVERALL RELEVANCE OF THE APPROACH TO EMPOWERMENT In terms of Clark’s (1989) four interpretations of empowerment, our approach to eliciting the views of the residents of aged care facilities probably has most relevance to personal process and effective deliberation and moral reflection. It also has a connection with issues related to balance and interdependence, but is only indirectly related to political activism and social process. In relation to personal process, while it may not directly empower residents, a sincere, unbiased and scientific attempt on behalf of the management of aged care facilities to identify issues of concern, as perceived by the residents themselves, with the intention to act where possible/feasible to improve the situation, has obvious positive implications for the residents’ feelings of powerlessness and perceptions of paternalism and limited control. The use of interview schedules or self-complete questionnaires within the approach also provides residents with an opportunity for some degree of effective deliberation and moral reflection, in that it encourages them to think about their situations and care in some depth and to identify any possible areas for improvement or change. A particularly important issue in relation to residential care is that of empowerment related to balance and interdependence. The management of residential aged care facilities needs to balance financial considerations, which are often unavoidable or at least imposed from outside, with the
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desires of residents to exercise freedom of choice regarding such decisions as when to get up, when to have their meals, and so on. Staffing levels in residential aged care, reflecting financial constraints, often limit severely the extent to which personal choice on behalf of residents is permitted. The use of our approach could help in identifying the particular priorities for change desired by residents, which could be more readily accommodated within existing staffing constraints and/or provide evidence for arguing for increased funding (perhaps leading to political activism?). IMPEDIMENTS ADDRESSED BY OUR APPROACH Before discussing some of the impediments to empowerment that can be addressed by the use of our approach, it is worth noting that various aspects of the process employed to develop the manual—in particular, the continued emphasis on resident involvement and feedback throughout the project— can also be regarded as (potentially) empowering. Specific examples include the use of qualitative methods as a means of identifying key dimensions and issues (e.g., focus groups with residents), the emphasis on the in-depth interview method (as the preferred survey option), the continued insistence on the participation of residents as being entirely voluntary, and the attention paid to preserving confidentiality and anonymity. Provider-based Limits As should be obvious, one of the main impediments to empowerment addressed by our approach relates to the lack of knowledge of clients’ views, needs and wishes on the part of service providers. Many service providers may, of course, have some idea of residents’ needs and views (or at least those that residents are prepared to express), either as a result of their own efforts to actively seek such views (for example, via residents’ meetings or ad hoc, in-house surveys) or through informal contact or feedback from residents, family members and/or staff. This is certainly not always the case, however, for reasons such as a lack of time and appropriate tools and/or expertise. The availability of a manual that provides all the tools necessary to conduct a survey, including advice regarding such things as interviewing techniques, interpreting results and follow-up, thus provides one means by which service providers can not only increase their knowledge and awareness of residents views, but can do so knowing that the information they obtain is both valid and reliable. A similar argument can be applied in cases where, for example, service providers assume they know what their clients need or want, this being reflected in the kinds of or ways in which services are provided and by particular biases in service delivery. Biases in service delivery might also be the result
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of service providers responding, for example, to the views of a vocal minority of residents or to pressure from family members. Again, our approach provides a means by which such problems can be addressed; for example, by the inclusion of detailed advice regarding the sampling of residents and how to maximize participation or response rates. It is also our view that the approach, in providing a means by which service providers can become more aware of the particular service and care needs of residents, provides an information base relevant to the development of more flexible and coordinated programs, where appropriate. Environmental Limits Particularly within the residential age care setting, different aspects of the living environment can represent a serious limitation in terms of resident empowerment. Exploring different aspects of this environment—both physical aspects such as residents’ rooms, communal areas, complex maintenance and so on, as well as from a policy perspective (i.e., rules, routines and codes of practice), and the ways in which such impediments might be removed or reduced—represents an important component of the approach. To this end, both survey instruments contain a comprehensive range of questions on relevant topics. In addition, various aspects of the social environment, such as activities and links with the community (e.g., access to and involvement in community activities) are also explored. Client-based Limits In terms of client-based impediments to empowerment, our project presented some major methodological challenges, several of which have already been discussed. One of these was how best to overcome problems associated with people’s physical and cognitive limitations, which, in many cases, particularly in nursing homes, are often severe. As regards physical limitations, such as deafness and blindness, the approach provides a number of ways by which input can be provided; for example, the availability of written questionnaires for hearing impaired people and, for those with sight impairments, the availability of the interview method and/or large-print questionnaires, depending on the extent of impairment. Large-print cue cards are also provided in conjunction with the interview approach for use when respondents are asked to rate a particular aspect of care; this was also found to be useful from a cognitive impairment perspective, in terms of helping residents to remember the various rating options. Involving residents with cognitive impairments has proved a particular challenge and involved considerable research, via existing literature, consultation and discussion. As noted earlier, after careful consideration it was decided that, within our approach, we had no better alternative than to rely
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on the views of representatives (generally family members) for residents who are more seriously impaired, both cognitively and physically. While there is, of course, no guarantee that the views of proxies correspond to those of residents, it at least provides a perspective on behalf of those who would not otherwise be able to participate. On several occasions during pilot testing, representatives were interviewed together with the resident who, in some cases, was also able to provide input. This is an alternative option. In terms of being able to fully participate in a survey, language and cultural background are also important factors. While not specifically intended for use in ethno-specific facilities, the interview schedule has been used with a number of people from non–English speaking backgrounds with the assistance of interpreters and has appeared to work quite satisfactorily. Accordingly, the final version of the manual contains detailed advice regarding how best to deal with language- and culture-related issues (e.g., how to work with an interpreter). At a more specific level, several questions within the interview schedules and questionnaires allow issues relating to language and culture to be explored in some detail. Another major challenge in terms of client-related limits to empowerment was how to deal with issues such as the general reluctance of many elderly people who are dependent on the services and care they are receiving to criticize that care, because of fear of retribution and/or not wishing to offend or make trouble for staff members. As noted earlier, another related issue is the tendency, well documented in the literature, for elderly people to give overly positive or bland responses when asked about issues relating to their care. The approach developed has attempted to address such issues in a number of ways in order to maximize the likelihood that residents will indicate what they really think or feel as opposed to what they think they should say. These include the particular attention paid to issues of confidentiality and anonymity (e.g., detailed advice regarding these issues in the survey guidelines, no identifying information on forms), the emphasis on the interview method as the preferable survey option and the generally relaxed style of the interview schedule. A particular example is the use of open-ended questions (with additional probes) as a means of encouraging discussion. Research evidence indicates that people are more willing to criticize when this type of question format is employed. Recommendations in the survey guidelines that skilled interviewers who have no connection with the facility should be employed to conduct the interviews with residents is another relevant facet of our approach. There are a number of other ways in which our approach could be regarded as, at least indirectly, addressing other specific, client-based impediments to empowerment. First, the very fact that the approach focuses specifically on seeking residents’ views implies that their opinions are important and may hence help overcome problems relating to—perhaps even
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help boost—self-esteem. More specifically, the time involved in conducting the survey, particularly in the case of the survey by interview approach, where residents’ views are sought in some detail in a relaxed, unrushed manner, can have a positive effect and encourage residents to say what they really think; indeed, during piloting, some people actually expressed their appreciation that someone was taking the time to seek their personal views. The tendency of many elderly people living in residential care to accept the current standard of care as the norm (e.g., “what you haven’t had, you don’t miss”), particularly when there is generally nothing with which to make comparisons, is another related problem. While, as noted above, strategies such as the emphasis on the survey by interview method as a means of promoting in-depth discussion and the specific structure of the survey instruments themselves (e.g., use of open-ended questions with probes, careful wording of questions), have been employed in order to encourage people to think about their situations and say what they really think and/ or would like, we cannot expect to overcome this problem completely. In a similar way, our approach, with its emphasis on encouraging people to discuss their situations and various aspects of their lifestyle and care, could also be regarded as at least indirectly helping to overcome barriers relating to personal choice and perceptions regarding the aging process and the meaning of care. Societal Limits As regards societal-level impediments to empowerment, it could be argued that our approach—by virtue of its focus on seeking the views of residents specifically, and the emphasis, in the guidelines, on involving them in later follow-up and development of action plans—implies that their views and ideas are of value and hence represents an important contribution toward combating ageism. Similarly, providing an approach by which residents can influence service provision and planning, particularly when linked with developments in the accreditation process in Australia, implies some willingness, at the broader level, to empower elderly people, as does the increasing emphasis on residents’ rights and the growth of the advocacy movement within residential aged care. Highlighting the importance of resident input can also be regarded as a way of helping to overcome any fear or reluctance on the part of residents to be involved and, hence, can actually increase their own willingness to be more empowered. CONCLUDING COMMENTS Given the institutional setting with which we are dealing, and the fact that, ultimately, residents will always remain, to some degree, dependent on
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the service provider, this chapter is not about ultimate empowerment in the idealistic sense of full control of the planning and management of care; rather, it relates more to interpretations of empowerment that focus on better informed clients, care managers and providers, and clients being better able to voice their perspectives and desires (and providers who are better able to listen) (see Chapter 1). The approach can also be regarded as facilitating the balance and interdependence aspect of empowerment through its potential for promoting greater mutual understanding and cooperation. Nevertheless, the fact that we were funded by the key Federal body in Australia with responsibility for aged care policy and provision to develop the manual and approach described in this chapter indicates that issues related to the empowerment of elderly people in residential care are viewed, by at least some policy makers, as having a degree of importance. While we do not claim that the approach we have described provides a definitive solution to all of the methodological challenges involved in assessing the views of residents of aged care homes, or that it counteracts all possible impediments, we believe that it does represent an excellent and valid attempt to obtain the views of older people in residential care facilities and that it provides a valuable model that other countries might consider replicating.
4
Reimagining Senior Empowerment in Service Delivery: Creative Applications in a Global Context Mary E. McCall
Several years ago, Marvin Kaiser (1993), in his analysis of the roles of older people in developing countries, talked about the notion that successful adaptation to aging depends upon the availability of choice plus the retention of a sense of usefulness derived from participation in productive activities. Such successful adaptation clearly incorporates the four interpretations of empowerment (Clark, 1989) as outlined in Chapter 1: effective deliberation and moral reflection: personal process; political activism and social process; and balance and interdependence. This chapter will discuss three health and social service projects in the United States that sought to empower frail elderly people in a variety of ways, all of which reflect the various definitions of empowerment used here. Around the world, it has become increasingly clear that we need to move beyond the traditional views of providing health and social services to frail elderly persons from a “provider-knows-best” perspective. This perspective reflects a “social service” stage of societal development according to Moody’s model of social values (see Chapter 1). There are a variety of reasons for such an imperative. Given the changing demographics reflecting the increase in the number of elders in developed countries, the time has come to move beyond the status quo of pitting expensive government services against uncompensated family provision of care and service to our seniors. In many countries, where government support of services for seniors is decreasing, societies need to envision new and creative approaches to empower citizens in their own care and provide options and information which enable people to make informed decisions about their quality of life. However, if
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a society is firmly entrenched in a “social service” model, such efforts may be futile. In the United States, where we are squarely in between the “social service” model and the “participation” model outlined in Chapter 1, we are facing the same challenges that many industrialized countries are: How do we truly empower individuals and yet be willing to deal with the potential consequences of older persons making choices that, as a society, we have a stake in? This is the theme of the public-private collaborations that have been observed over the last several years. These represent new and needed approaches for nations facing an increased number of very diverse older persons, some of whom are more capable than ever and some of whom are more frail than ever. One of the major lessons learned from this work is the need to look for unlikely sources of assistance and advocacy that can be major contributors to empowerment. It is also important to look beyond the obvious—what may seem to make the most sense to us as providers, may not make any sense to the elderly person. The goal in all these projects has been to meet the needs of frail elderly people at varying levels of independence/dependence both effectively and efficiently while maintaining their autonomy and dignity as individual human beings. Each of these projects illustrates how the different definitions of empowerment (Clark, 1989) can be manifested in various areas of services for frail elders. SENIOR HOUSING NEEDS SURVEY The first project was a survey conducted in a small suburban town in the San Francisco, California, East Bay Area, designed to gather information about housing needs and desires of residents over 55 years of age. As this information was used to try to project future housing needs for the whole of Contra Costa County, it is important to understand the geographical and social layout because the disparate sections represent different constituencies with potentially different needs. This is a case where context became very important in understanding the priorities of different areas of this county. However, these factors of geographical location, neighborhood composition and access to services are relevant in any county or nation. Contra Costa County is geographically divided into three parts: West County, Central County and East County, and a vast delta divides Central county from East county. Elders in East County come from varied minority ethnic groups; Central County is populated by more affluent, mostly white, retirees and is the seat of the county government; West County seniors are mainly blue-collar workers who were left without jobs after the end of World War II, when the main supply point to the Pacific Theater was eliminated. Better transportation in recent years has allowed the separate parts of the county to be less isolated. Nevertheless, the three parts remain fairly distinct in their environmental context and feeling. In a different survey that was completed throughout the entire county, over 1,500 respondents indicated
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health as their major concern, with crime and elder abuse as close seconds. Other concerns were long-term care, income security, mental health, nutrition, housing, and in-home services. While these responses may be a clear case of hearing the obvious, these concerns did differ slightly by county area. In the specific housing survey that was conducted in one town in Central County, adults over the age of 55 indicated their preference for remaining in their community, even if they needed to move out of their existing residence. Most would prefer to remain in their residences, even in the states of disrepair in which some of them exist. While it may seem obvious to us that most older people want to stay in their homes, what is not as obvious is the need for attention to some details that can make this a realistic possibility. For example, simple things such as safety carpets, safety rails in the bath and/or hallways, external lighting, and even inexpensive items such as deadbolt locks and smoke alarms were lacking in many homes. The town’s Council on Aging used this information to identify creative ways in which the community might meet some of these basic needs. For example, some of the more inexpensive items could be obtained by soliciting donations from local hardware companies whose reputation for being communityminded improves their image and, as a consequence, perhaps, their local business. Organizing volunteer labor groups of young persons from the local schools to install items or to clean up debris, perform simple repairs and the like, was another way to use “unlikely sources” to help the seniors in the neighborhood maintain their residences and their ability to stay in those residences. Another way in which larger community organizations and members were involved in this project was through the donation of funds from the local telephone company to cover some of the costs of the project. In addition, we were able to utilize members of the local chapter of the Retired Senior Volunteers Program (RSVP) to conduct some of the surveys. They participated in a day of interviewer training and then each took as many names as they could and contacted community residents to solicit their participation in the survey. Such involvement demonstrates how collaboration can achieve empowerment of some through support from others. This survey illustrates several of the definitions of empowerment. First, involving older persons themselves in determining housing priorities puts them in the position of reflecting and deliberating on their current status as well as imagining where they might be in 10 or 20 years, and how their current values can inform their future desires. Second, this process of collecting information from community seniors clearly engages them in the personal process of planning and advanced thinking that Clark advocates. Third, the involvement of seniors in the town housing planning process allows them to feel empowered in a political arena in ways they have not before. The social process of meeting with other residents, interacting with both peers and persons of other age groups, underscores the sense of inter-
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dependence that Clark also refers to in his typology of definitions of empowerment. However, one of the impediments to meeting the needs of some older persons is often the attitude of the older people themselves, who balk at the notion that they are dependent in any way. They do not want to be seen as “needy” or unable to take complete care of themselves any more. Again, where we may think it is obvious that people will accept the help they need to get what they want—in this case, staying in their home—the situation may not be that simple. Such resistance may be seen in areas of need for financial assistance (some residents cannot afford smoke alarms or safety bars because of their limited income), physical assistance (they do not want to admit they need help getting in and out of the bathtub, or cleaning their roof gutters), or help in making decisions about issues such as health care or medication use. Most providers respond to such resistance with the attitude that “we know best and so you should follow our advice.” In discussing the role of empowerment in health education, Rodwell concludes that “whilst health promoters emphasize the principles of voluntarism—the freedom to make any choice—it is clear that some choices are assumed to be better than others. There is also an implicit assumption that healthy choices are synonymous with rational choices and this is not always the case” (Rodwell, 1996: 309). We can see that allowing for true choice by older people can sometimes be a risky proposition if they choose to stay in their home under unsafe conditions. In addition to the notion that the “obvious” may not always be “right” in a given situation, the problem of overcoming attitudinal challenges may also be very context-specific. As the following example illustrates, this attitude of not wanting to admit the need for help is especially acute in another setting in which frail elderly persons are residing. In a group of buildings that offer government-subsidized housing to very low-income elders, frail seniors do their best to maintain the “independence” that is required by the government to qualify to stay in such housing. Satellite Senior Homes, Inc. is the nonprofit housing management corporation that owns and operates 16 buildings in the San Francisco East Bay Area. These buildings are primarily located in urban areas—some in very high-crime areas—and range from 35 to 150 units, typically in elevator-served 3–8 floor buildings. Residents in these buildings are ethnically and racially diverse (although a few buildings are almost exclusively African American and two are entirely Chinese), speak multiple languages and come from a wide diversity of geographical, educational and social backgrounds. While there is often some resistance among middle-class seniors (such as those in Contra Costa County) to discussing financial issues, or admitting that their physical capabilities are declining, for very low-income seniors, the fears and level of resistance escalate dramatically. For these residents, their
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ability to stay in their apartments is based on their “ability to maintain independence.” However, these residents have been marginalized in our society for most of their lives. They have not received the kind of adequate education, training, employment, and health care that many middle class citizens take for granted. Thus, they are very reluctant to admit any form of neediness. However, the definition of independence, according to the federal Department of Housing and Urban Development (HUD) criteria has changed over the years as these residents have “aged in place.” Many residents are eligible to receive in-home supportive services (housekeeping, meals-onwheels, etc.) and still remain in their apartments. However, trying to explain to them the changing guidelines that govern their ability to stay in their current housing is a challenge, because they are so suspicious. The importance of understanding someone’s background and life history is an important contextual component that we often fail to acknowledge or explore when we try to design or deliver services to seniors. Despite the widespread admission by service providers that each senior is unique, we continue to design support programs, and even make assumptions about what empowerment means, as if all seniors were the same. This is a poignant example of the notion of empowerment as personal process—understanding where individuals have come from in their life, what their values and priorities are, and what they may even want to have power over, if anything. Even within this group of low-income seniors, the importance of context could be seen in how the residents and their respective needs differ from building to building and neighborhood to neighborhood. This became very clear as we proceeded with a health-based project in some of these buildings. HEALTH SCREENING AND EDUCATION PROJECT In one project (funded by the True North Foundation), instituted in two of these buildings, third-year undergraduate nursing students (in a Bachelor of Science in Nursing program) from a nearby college provided on-site health screening and promotion to the residents on a weekly basis during the academic year. Students conducted a weekly “health clinic” where they checked blood pressure, blood glucose levels, weight and vision; conducted an exercise class; and presented health education workshops on various topics ranging from “How to Have a Healthy, Happy Bladder” to “Fabulous Foot Care” to “Coping with Grief and Loss.” The students were responsible for designing the workshops, including graphics and handouts and presenting the material in pairs to the residents. A gerontological nurse faculty member was responsible for supervising the students. Home visits were also conducted and students interviewed all participating residents (in the clinic or at home) to take health histories and fill out a lifestyle profile questionnaire about nutrition, stress, and exercise habits (Walker, Sechrist and Pender, 1987), medication use profiles and
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other basic health inventories. In this way, residents could gain a broader perspective on their health status, and students could provide residents with health information to which they might not otherwise have access. Students and the faculty member also assisted residents in identifying questions to ask their doctors. The goal of this project was to empower residents when it came to their own health status and health-related knowledge through education and support. As they learned more about their current condition, how to maintain it and how to prevent exacerbation of existing conditions, residents gained more control over their health. This is one of the specific goals of the government-sponsored national health agenda in the United States— Healthy People 2000 (U.S. Department of Health and Human Services, 1991). One of the important things that we learned from this project is that individuals who are already health-conscious look for opportunities to maintain and/or improve their health status. At-risk seniors and elders who do not view their health as a priority pose a challenge for health professionals and students. Again, although it may seem obvious that older persons would want to do what is right for their health, and learn more about how to take better care of themselves, that is not necessarily true. This is another example of the potentially negative or threatening consequences of giving people power over their own lives—regarding health care, diet, exercise, environment or anything else. Reaching the residents and engaging them in the services offered required the use of creative approaches. These included game-playing for exercise, use of music, offering individualized home visits and tailoring educational presentations to specific interests and needs identified by the residents. These innovative methods to reach the residents proved to be successful, as over one-third of the residents were served in the first year. Fundamental to the success of such a program is the identification of and collaboration with various sources of input and approval for such an undertaking. And while this may seem obvious, many times program planners do not consult with the most likely sources of support—the recipients of the services themselves. For example, meetings were initially conducted with the resident councils in each building to get the residents to “buy in” to the program, as well as with on-site support staff and personnel (e.g., the social worker for the particular building) to secure their cooperation. Residents gave suggestions about topics for the workshops, and indicated their preferences for the kind of exercise they enjoyed. The nurse faculty was also able to solicit the assistance of one bilingual resident who spoke both English and Cantonese to enlist the participation of many of the Cantonesespeaking residents. While they came at a separate time from the other residents (they always came right at the end of the health-screening session), they did consistently participate in the clinic activities. Such inclusion and cooperation is essential for all to invest in the project and feel that each is
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benefiting from as well as contributing to the overall outcomes. Again, this process facilitated the empowerment of the residents in their own personal process of reflecting on, identifying and planning for what they wanted to get out of the program. One of the most positive outcomes for residents was feeling “needed” and useful to the students, knowing they had something of their own life experience to offer. Their participation in the students’ education increased their sense of usefulness and self-esteem, and helped them recognize and acknowledge their social value. This exemplifies Kaiser’s (1993) point that elders need to retain a sense of social importance and purpose. In addition to the residents’ improving their sense of worth, students also increased their knowledge of and sensitivity to community-dwelling independent seniors. While this may seem an obvious outcome, it is one that is often discounted in its importance to developing a generation of future health providers with a mindset of understanding and respecting the independence and dignity of older persons. One of the most important ways we can all work to maintain the power of older persons is to build that goal into the ways in which all of us in society deal with seniors, no matter what field we work in or what kind of contact we have with older persons. One of the major lessons here is that community partnerships such as these benefit all who are involved. Seniors improve their health knowledge and their health awareness and perhaps improve or at least maintain their positive health behaviors. They learn that they can contribute to the growth and development of a younger generation. Students get a real sense of the range of behaviors and abilities that are encompassed in the term independent, and how to communicate with and listen effectively to seniors with a variety of educational, ethnic and socioeconomic backgrounds. While many seniors of racial minority status in the United States have objectively poor health, oftentimes they report better subjective health status. The students get a much clearer sense of the distinction between the two types of health status and the importance of understanding the subtle differences between them, as well as the role of contextual factors in such differences. The experience of one older woman, who has lost one leg below the knee from diabetes and was in danger of losing the other, illustrates this. Objectively, she seemed to be in dire straits. However, in a building where she had many friends who helped her with practical tasks such as dressing or shopping, as well as provided emotional and moral support, her outlook on life was very positive. Many students continually remarked on the positive attitudes that residents maintained in the face of what, as middle-class Americans, they would consider almost unlivable circumstances. In addition to the benefits to both residents and students, the local college gained a wider reputation within the community as an institution that is open to collaboration in meeting community needs. In fact, one of the commitments that was made at the time of the initial connection between
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the two agencies was that the housing site would become a permanent clinical rotation for the nursing students. That commitment has been maintained since the official project ended and is crucial in circumstances such as these, where residents have often felt used or exploited by researchers for their own purposes. It sends a message that others care for them as individuals, and not just as research subjects. Through such a collaboration, the nonprofit housing corporation can also more fully meet the needs of its residents at minimal or no cost. In this way, all involved are winners. One of the most effective ways of overcoming the impediment of negative societal values regarding the role of elderly people in any society is by changing the attitudes of people across all segments of society. As psychological research has shown, the best way to break down stereotypes is through personal interaction and learning that all people are unique and that everyone has something to offer to the common good. In the United States, as in other countries (e.g., Japan), there has been a push toward expanding intergenerational contact, precisely to create opportunities for people of different ages to get to know, understand and respect one another. Through such contact, persons of all ages come to understand the reality of interdependence among generations, and begin to develop a deeper investment in others, seeing that they, too, were either once part of a younger generation, or will one day be part of an older generation. This is the way in which societies can move from a “social service” stage of values through “participation” toward the “self-actualization” stage. Work in Australia by Borowski and Ozanne (1993) has recommended a move that would reinforce such values—developing a needs-based planning, funding and service approach. This would include a shift in the balance of care from nursing home to hostel (similar to board-and-care homes in the United States) and community care provision and the improvement of assessment services. They also advocate change in federal funding to boost incentives for such approaches, such as the monitoring system presented in Chapter 3. These approaches mirror the “channeling” projects in the United States, where federal monies are channeled to the individual state, which then uses them creatively to meet the needs of elders in ways other than the traditional nursing home setting. The states of Florida and Oregon have been especially successful in utilizing such programs. Currently, the state of California, where all the work discussed in this chapter took place, is also applying for a similar Medicaid waiver status, which would enable the state to use blocks of funding to provide services in a new and, hopefully, more efficient and effective manner. Such a move is based on the premise that more flexibility in meeting the individual needs of frail elders is of greater importance than maintaining an antiquated system that treats all elders in the same or similar ways. In British Columbia, Canada, the government is involved in developing programs such as the collaborative one described above. In Canada’s na-
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tional health system, the government provides all services and has a strong home health care system in place. So the notion that students in the health professions could participate in service delivery was not seen as very viable. Whether a government is structured hierarchically, with consistency in policy and service from the top down, such as in Japan (see Chapter 5), or whether a pluralistic structure exists, such as in the United States, is clearly going to affect the potential success or even possibility of the development of creative programs and approaches. In a recent article discussing collaborative research (between government and academe) in Manitoba, Canada, in the early 1990s, the authors conclude “perhaps expecting a true partnership between academic research groups and government agencies—which have a political agenda in addition to a social agenda— . . . is unrealistic” (Chappell et al., 1998:37). Borowski and Ozanne (1993) also urged that standards be developed to include health care, social independence, freedom of choice for elders, a homelike environment, privacy and dignity, safety, and a variety of experiences. This is a very different model from that found in the United States, where solely objective standards are assessed (e.g., staff/patient ratios) and it is left up to individual nursing homes or senior housing projects to develop, maintain and assess the more subjective quality-of-life issues. This is an area where empowerment through political activism could be instrumental in facing the impediment of the “social service” mentality that permeates much of the health care system in the United States. REMINISCENCE PROJECT The third project was designed specifically to enhance the quality of life of seniors living in this same subsidized senior housing in which we established the health clinics. Research has shown that the most common functional psychiatric condition of late life is depression (Blazer & Busse, 1996; see also McDougall et al., 1997). Because of its association with excess morbidity and mortality, depression in older adults calls for focused and intense intervention. A meta-analysis of 17 studies in which older adults received a variety of psychosocial treatments revealed reminiscence therapy to be an effective method for helping older persons deal with emotional distress. Life-review approaches are much less expensive than clinical treatments, some of which may not be fully covered by insurance. Life-review approaches can also be used to promote social relationships among older persons. Parson (1986, see also McDougall et al., 1997) found a lessening of depression measured by the Geriatric Depression Scale in a small group (n⫽9) of older persons living in similar federally funded housing after only six group reminiscence sessions. The project consisted of a series of 10-week reminiscence “classes” designed for older adults in small groups of 8 to 10. This was based on a
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model developed by Edmund Sherman (1991). Each week the group met for 1–11⁄2 hours, discussing a specified period of time in their lives (e.g., childhood, adolescence, young adulthood, etc.). The process of reminiscence has been shown in previous research and theoretical work to assist in the important late-life psychological tasks of developing what Erik Erikson called “wisdom” and coming to accept one’s impending death (Papalia & Olds, 1995). This project was designed to address these psychological needs, as well as some social needs, of this very diverse group of low-income, urbandwelling seniors. The group was composed of residents from both the “independent living” sections of the building and the “assisted living” areas. Residents from each of these parts were hand-selected by the social worker in order to create a mixed group of residents who, under regular circumstances, might never have any contact with each other. This is another example of how both context (which part of the building they resided in) and the use of unlikely sources (the social worker who knew the residents personally and could capitalize on that relationship to coax people into trying something unfamiliar) come into play when trying new approaches. The psychological goal of the group was to improve the individuals’ selfesteem through reminiscence exercises and oral/written re-examination of important life events, relationships and experiences and their meaning to the individual. The social goals of the group were to break down stereotypes based on living status (independent vs. assisted), race, age and background and facilitate a unique connection and ongoing relationship among group participants that would spill over into areas outside the group setting. Results indicated that success for both individuals and the group as a whole can be achieved, although success may be defined differently by different group members or facilitators. So, once again, we see that, what may seem obvious to one person, is not at all the understanding of another. For example, many people felt they had not lived a particularly “important” life. However, when seen through the eyes of the others in the group, a resident was seen as an effective special education teacher or as someone who had raised productive, gifted children. These elders were seen as valuable and worthwhile people, and this developed a sense of pride in those who had felt that their past achievements were minimal. Admiration from others reminded the participants that “life success” could be achieved in varied, but equally meaningful, ways. Other research (McDougall et al., 1997), using a content-analysis method to understand the process of change over the course of reminiscence sessions, utilized a framework of empowerment/disempowerment themes. Disempowerment themes included anxiety, denial, despair, helplessness, loss, and loneliness. Themes of empowerment included hope, coping, efficacy, trust, and connection. Reminiscence, then, can be one way in which elders living in any circumstance can reclaim some of their self-esteem and dignity
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and also forge new relationships, which can contribute to a current sense of worth, all of which increase a sense of empowerment and control over their lives. The greatest and most unexpected success, because it was not an obvious outcome, was the forging of such close relationships with others in their building that they had not even known before the group. Common historical experiences, like living through the Great Depression and World War II, and common social experiences, like seeing the same first movies and sharing the same music, and common current interests, like writing and dancing, formed the basis for unique friendships that transcended the group and became the foundation for conversations and connections outside the group setting. Networking among other friends spread the sense of community throughout a building where there had previously been a prevailing sense of disconnection and alienation. For example, residents who might never have sat with “strangers” at another table in the dining room now had friends among those “strangers,” and eating with them allowed them to meet other residents as well. This experience empowered residents to see their own lives in a more positive light, as well as established rewarding social relationships that improved the quality of their daily lives. This is another example of how support can come from unlikely sources and facilitate empowerment as both a personal process and a social one. Other research has shown that a holistic approach to health prevention and promotion—both physical and mental—can be very effective in maintaining the independence of frail elders (Lamm et al., 1991; see also Abbey et al., 1994). In one study, they found that a lifestyle-management project that provided counseling, social support and education to chronically ill older adults facilitated development of self-care abilities and self-esteem, while reducing the adults’ reliance on traditional health-care services. The Nursing Department of Lourdes College in the state of Ohio also developed a similar student clinic approach to providing wellness services to senior housing units, which they called Neighborhood Wellness Centers (NWCs) (Abbey et al., 1994). They experienced some of the same obstacles, including reluctance to share functional limitations due to the fear that this information would jeopardize their ability to stay in “independent” housing. They also experienced the complexity of dealing with multicultural populations both in terms of meeting the diverse needs of different groups, but also in terms of the having residents come together with neighbors different from themselves to join in a common activity. Another finding was that good collaboration with facility managers and resident leaders was invaluable in dealing with and overcoming these challenges. A similar collaborative program approach has been used by the Visiting Nurse Association (VNA) of Washington, D.C., which provides home visits to residents of senior citizen buildings, geriatric day care center clients and low-income seniors in housing developments (Van Croft, 1994). This pro-
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gram has incorporated student nurses into their service provision, as well as developed positive collaborative relationships with building managers and residents. CONCLUSIONS A few years ago, having spent a week in Minneapolis with an intergenerational group of people working to design policy and research recommendations for both the White House Conference on Aging and the United Nations’ Year of the Family, it became obvious that there was a pressing need for intergenerational, international and interagency perspectives on many social problems facing nations with aging populations. If we continue to segment our larger society and ourselves by age, using age-based policies to provide services, we will be ignoring the fundamental social truth that we are all interdependent. This is one of the definitions of empowerment that Clark discusses. As societies strive to meet the needs of all citizens, this may be the most important definition or “aspect” of empowerment. This is even more important now, not just locally but globally, where we need to understand that we can all contribute to our communities no matter what our age and we can all benefit from what others may provide at different points in the life cycle. This interpretation of empowerment is one of the most important, I believe, if we are to move toward a self-actualized society. It is people on residential blocks and in neighborhoods, villages and towns who can come together to solve the problems we face as individual nations and as a global village. As Kaiser (1993) concludes, It moves the discussion to one of societal adjustments that ensure the retention of usefulness through the provision of flexibility and choice in how older persons adapt to aging, while addressing their real economic needs. This approach means that appropriate policies and programs must be developed and maintained to support positive social and economic roles for older men and women in developing and developed countries, while ensuring appropriate levels of care for those in need. Ultimately, it means an investment in policies and programs that support human resource development throughout the lifetime of all individuals, including older people. (p. 69)
5
Retaining and Expanding Empowerment in the Transition from a Family to a Community-Oriented Support System: Japan in the 21st Century Tokie Anme
INTRODUCTION Empowerment is one of the most important terms for Japanese society these days, as Japan is facing a turning point in changing societal values from a group orientation to an individual orientation. Historically, Japanese society has been based on Confucianism, similar to other northeast Asian countries. According to the historical concept of mura (a village-based society), all community members help each other meet all needs, with extraordinary pressure from both regional and national levels. Thus, it has been very natural for the Japanese to develop a community-oriented care system for older persons. But this community was not a real one, because complete mutual interdependence was never really developed in these so-called communities. This concept of mura, then, declined after World War II. Since then, the younger generation of Japanese adults has been moving to big cities while rural areas have remained a relatively stable, but closed segment of Japanese society, with a high proportion of elders and delayed social development. It is not too much to say that empowerment for both the individual and the community is crucial to maintaining a sense of social solidarity in this fragile situation. The aim of this chapter is to examine the nature of empowerment within the context of the dynamics of a society changing from a family-based care system to a community-based system. In a larger context as well, we see that while social values are changing, Japan is also dealing with the aging of its population overall, which intensifies the importance of these value changes. The chapter is organized around five sections:
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1. social changes occurring in Japan; 2. trends in community support systems; 3. changes in the national support systems; 4. presentation of a new model for community empowerment in Japan; and 5. development of professional staff and skills needed to facilitate the empowerment of frail elderly persons.
SOCIAL CHANGES IN JAPANESE SOCIETY The Japanese population is aging faster than that in other countries, and Japanese enjoy the longest life span in the world. In 1997, the average life expectancy for females was 83.8 years and for males, 77.2 years. Almost 16% of the population were 65 years of age or over (Ministry of Health and Welfare, 1998). Recent changes in household structure—particularly the increase in households with old-aged single persons or couples, together with the increase in younger adult female workers—have made it difficult for the family to take care of the elderly, as has been the cultural tradition. Income guarantees in the form of pensions are becoming a substantial burden on Japanese society and the needs for health and social services have increased dramatically, but the resources are limited. So the useful utilization of such services is strongly desired and there is much research being conducted to find different ways to use the limited resources effectively. The government is serious about coming to grips with this problem, exemplified by, for example, the establishment of long-term care insurance. These problems are placing tremendous pressure on Japan’s traditional and culturally preferred family care system. The obvious way to ease these growing pressures is to introduce more formal, community-based services, which can be provided at home to the older person and thereby supplement family members’ limited resources to make the life of the elder as comfortable as possible. But this must be done with very special sensitivity to the individual and with the dignity and empowerment of the older person in mind. There is a dramatic separation between the large urbanized areas, where economic pressures and changing social values have meant a rapid decline in family-based care for elderly people, and the rural villages, which remain almost a separate, cloistered segment of society, but with a high number of dependent elders who need care and support. Furthermore, changing social values of care for the elderly disabled have been so rapid that it has evoked confusion and insecurity among contemporary elders in Japan. Historically, family members had provided Japanese elders’ care. Because of the loosening of family ties, many nuclear families are unwilling to care for their older parents. And tremendous urbanization
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has made it difficult for nuclear families to live with their parents in their small houses. It has made it very difficult for them to take care of their parents. This phenomenon has gathered steam and cannot be reversed, only faced openly. So, in Japan, at the moment, we do not face the impediment of governmental obstruction of social goals. TRENDS IN COMMUNITY CARE Because of these changes, several local communities have tried to establish community-based support systems for elderly and disabled people. For example, in a suburb of Tokyo, special nursing homes have established a network system combining consultation, home nursing, day care, rehabilitation and education, and the like. Clients have a chance to visit each institution and can use every service according to their care requirements and plan, which are managed by professionals. This model still has several problems to be sorted out before it can be instituted throughout the country. First, there is the budget problem; second is the shortage of staff; and third is the unwillingness of the community residents to have such facilities located in their neighborhoods. It is very hard to solve the budget and staff shortage problems at this point, so it is vitally important to encourage people in the community to promote the system. Our goal is to get citizens to become committed to such a plan, based not necessarily on expanding the services but on effective utilization of the available resources. However, the community residents themselves need to be empowered if they want real community-based care. Because of the cost, local government supports most of the community-oriented services. One of the features of the health and social support system in Japan is its dependence on the public sector, while private sector or individual volunteer components are still underdeveloped. If the clients are viewed and accepted as consumers, private companies will be seriously motivated to enter the support system market. Also, if community residents are empowered to voice their needs, many nonprofit support systems will emerge in response to residents’ demands. But now, even private companies depend on public money because the consumer field is underdeveloped and the majority of older people think those social services should be free. On the other hand, the younger generation has serious worries about the increasing burden of care for elderly people. Before serious budget and staffing crises emerge, real community-based care systems must be established, and this will have to be done by the residents themselves, not the government. In 1993, the national government decided that all local communities should have their own plan or strategy for dealing with their aging population. The specific goals were given in great detail, including the number of institutes and staff in health and social services, transportation, local environ-
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ment factors such as barrier-free buildings and even the type of education people in the community should have. According to the instructions, all 3,300 cities and 49 prefectures (states) were to devise their own plan to realize these goals. The amount of required services was tremendous and the national government could not afford to bear those costs, so new revenue sources had to be secured. This was the “system of public long-term care insurance,” to which Japanese citizens contributed. One of the few exceptions to this model were “consumer institutes” (called “co-ops”), which developed their own system of care. They empowered their members to provide health and social services for other members in the community. This “mutual self-help system” has become one potential model of service delivery, not only for health and social services, but also for crisis services and natural disaster management (e.g., earthquakes). The most important role of such community-oriented and community-based support is to empower people for the promotion and maximization of independence through interdependent self-care. THE NATIONAL SUPPORT SYSTEM The health and social support systems in Japan have been going through major reforms for the last ten years. The pattern of the reform reveals a dramatic change from the early-anticipated trajectory. The original underlying issue was always the aging of the Japanese society and the urge to find a “Japanese” solution for it. That problem had been evolving since the end of the 1970s. Initially, it was considered merely as a future possibility, highlighted by the maturing of the economy and the decline in the rate of economic growth. But, in the 1990s, it has become a widely recognized, urgent social problem, which reflects not only the demographic realities of contemporary Japan, but also a dramatic transformation of Japanese social and family structures. In order to make our aging society more vibrant, and ensure that people are healthy, secure and have something to live for, the national government established two plans in the field of health and social support services—the New Golden Plan and public long-term care insurance. New Golden Plan The first plan established by the national government is the “New Golden Plan,” which is a ten-year strategy to promote health care and social services for elderly people. It sets forth specific goals to be achieved in the decade between 1994 and 2003. It evolved from the “Golden Plan” that was established in 1990 and now is being energetically promoted. The main goals of the Plan are as follows:
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1. Urgently prepare welfare measures for elderly people living at home a) increase the number of home helpers (those who visit and care for elderly people) b) increase the number of short stays for nursing care c) increase the volume of day care services d) establish care support centers for elderly people staying at home e) promote “projects to develop welfare communities for comfortable living” 2. Drastically reduce the number of elderly people who are bedridden a) improve physical training b) secure places for functional training (e.g., municipal health centers) c) provide lift-equipped buses to transport frail elderly persons to and from physical training centers d) develop cerebral apoplexy information centers e) improve health care education to prevent cerebral apoplexy, bone fractures, and so on 3. Develop a longevity social welfare fund to improve the human services for elderly people living at home 4. Urgently provide new facilities (and budget for such provision) a) provide special nursing homes for frail elderly persons b) provide health service facilities for frail persons c) provide homes for older persons at a modest charge (care houses) d) provide multipurpose senior citizen centers in less densely populated areas 5. Promote measures of “fruitful” lives among elderly persons a) establish organizations to develop comfortable old-age communities b) support “model projects” to promote the health and worthiness of older persons 6. Promote studies on the science of aging a) develop national hospital facilities as part of the aging science medical system b) secure enough resources to promote comprehensive research 7. Prepare comprehensive human service institutions for older people a) promote the idea of “my home town 21”—a program of developing communities that would enable all residents to lead long and happy lives by using an empowerment approach.
All these strategies are designed to meet the overarching goal of providing the most appropriate social and health services for aging Japanese citizens. Public Long-term Care Insurance The second major plan promoted by the national government is a plan for the public financing of long-term care insurance. The Japanese people have decided that they are willing to pay an increased service cost in order to provide social insurance for older persons. The revenues from this plan have provided support for many model projects. The original impetus for the development of such projects came from the increase in needs of elderly
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persons with disabilities who needed more help with activities of daily living and, therefore, needed new and more effective ways to be assessed. However, the outcome has been a move toward empowerment of all community members to whatever degree they need assistance.
A NEW MODEL FOR COMMUNITY EMPOWERMENT Empowering a community requires a step-by-step process based on empirical evidence. Fundamental components that are important to community empowerment are: (A) people-oriented services; (B) empirically based ideas; (C) system flexibility; (D) system consistency; and (E) mutual cooperation. A. People-oriented service means participation of all community members. This implies not only their physical attendance, but also their participation in choosing services and obtaining information. Having some role in the development of services motivates elders to achieve the project goals and, if they feel the project is their own, this will accelerate achievement. This process will facilitate the empowerment of community members. B. Empirical evidence makes it easier for people to accept the prediction of benefits of the project. Comprehensive scientific data, analyzed by well-established methods, confirm for people the merits and limitations of the project. Evidence-based results will give people security and confidence in the programs and, therefore, encourage continued investment in the project. C. System flexibility cultivates greater support in the community for the projects, as it allows for better responses to individual needs. Flexibility includes adaptability to various subjects, methods and timing. Effective utilization of services depends on system flexibility, because people are more likely to use such a system. Flexibility prevents such stagnation and may promote ongoing interest in continued project development. D. System consistency promotes teamwork in the community by requiring collaboration between providers. And working toward common goals through mutual support expands the empowerment of people in the community, because it requires their participation to realize their goals. For example, consistent evaluation makes clear the distinction of various goals and the ways to reach them in a consistent manner. Realistic prospects for project outcomes, based on evaluation research, provide guidelines for people as to what to choose and what not to choose. E. Mutual cooperation directly contributes to empowerment and increases public responsibility for the project. Mutual cooperation toward common goals requires good interpersonal communication, which will also contribute to empowerment within the community. Community discussion is one of the important methods for enhancing empowerment. It promotes the notion of empowerment as a social process, according to Clark (1989; see Chapter 1).
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Incorporating these concepts, a comprehensive longitudinal study to develop and evaluate the “new model for community empowerment” started in 1991 and has continued every year since. The purpose of the project discussed in this chapter was to develop methods for motivating people in a community to become empowered. One of the typical farming communities near a major urban center was selected. The participants were all the residents of the community 20 years of age or older—a total of 952 persons. First, however, we needed to develop an “empowerment culture” for both individuals and the community to promote mutual help. What is an “empowerment culture?” It is a social and value context for developing empowerment. How do you use this culture effectively? Culture can sometimes be a big impediment to overcome, but culture can also be used as a strong means to influence people. To alter the existing but unsatisfactory situation, we needed to change its culture. As a result, more of the participants had the attitude of “Let’s see how it goes.” Empowerment culture helped to promote the goals of self-care and mutual care in the community. The steps in the process of developing such an empowerment culture were as follows. 1. Create a Project Team Societal values regarding elders in a society range across four stages as delineated by Moody (1976, see Chapter 1), namely Rejection, Social Services, Participation and Self-Actualization. Our goal was to develop an empowerment culture that would begin by promoting participation by people and finally, come to realize self-actualization. To start the process, a project team was established that included community authorities such as the chief of the Residents’ Association, health professionals in the community and academic authorities. It was important for all members to embrace the goals of the project team and to feel a strong investment in future community development. 2. Utilize a Scientific Approach to Evaluation The development of individual and community empowerment draws strength from a foundation built on reliable scientific data. Reliable information about empowerment activities makes it easy for people to accept the program. Using statistical methods, a variety of factors were analyzed to predict future physical decline and mortality. One of the factors examined was social interaction, which was measured by the Index of Social Interaction (ISI). The ISI measures the amount and quality of interaction between the individual and the community. Other factors examined were health and lifestyle, individuals’ feelings about themselves and their social activities. The Index of Social Interaction is divided into five subscales: Independence (active approach, lifestyle motivation, health motivation for regular lifestyle);
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Figure 5.1 Score of Social Interaction (1992) and Instrumental Activities of Daily Living (1994).
Social Curiosity (use of electronic equipment, having a hobby, reading books and/or newspapers, feelings of importance); Interaction (communication with outsiders, interaction with outsiders, communication within the family); Participation in Society (participation in social groups, participation in neighborhood affairs, watching television, having an active social role); and Feelings of Safety (having someone to give advice, having someone to give support in an emergency). Lack of social integration was found to be significantly correlated with physical deterioration (see Figure 5.1) and later mortality (five years later) (see Figure 5.2). Cohort analysis revealed that interaction with the community decreased with age. In addition to the simple age factor, the nature of social interaction was changing in general because of the broader social changes discussed earlier (Anme, 1997a). We see this in the findings that one’s sense of importance in the society or in the family also decreased with age. Those changes also seemed to cause physical deterioration. For example, persons who reported that they were “losing their social role” deteriorated earlier than persons who reported still having meaningful roles in the community. Negative attitudes toward aging, such as “Everything becomes more difficult as you get older,” increased with age, and this feeling induced isolation from society. Positive self-reliance factors were also strongly related to the physical deterioration and mortality, such as the feeling about themselves still having social roles and the feeling about keeping good relationships going with family members. As a tool, the Index of Social Interaction was found to be useful for
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Figure 5.2 Social Interaction and Mortality within Five Years
predicting the future status of elders and thus can be used to develop strategies for early intervention. Compared to scales measuring Activities of Daily Living (ADLs), the predictive validity of the ISI is almost equivalent. Using effective predictive scales would strengthen an individual’s and a community’s sense of empowerment. Understanding both the present situation and the possible future will motivate individuals to take an active part in shaping that future. 3. Establish an Empowerment Center After a needs assessment and system development process of three years, the Empowerment Center was constructed as the core of the project. The purpose of this Center was to promote empowerment of people, not just at the participation level of social values, but also at the self-actualization level. Figure 5.3 shows the functions of the Center. First is the Zone of Health Check-Up, which promotes strong health as the basis for empowerment. Second is the Zone of Promotion for Self-Actualizing Activity, which contains a swimming pool, gymnasium, library and place for hobbies. Third is the Zone of Promotion for Mutual Support Activity, which includes several programs such as a volunteer center for facilitating mutual support in the community. Fourth is the Zone of Care Management, which utilizes a targeted systems approach by various professionals and others in cases where individuals need more comprehensive care and support.
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Figure 5.3 Functions of Empowerment Center
Because the Center was located near people’s homes, the residents easily noticed the effects on individuals and the sense of empowerment that was emerging from the Center. This provided strong incentives for the people to utilize the opportunities effectively. 4. Develop New Information Management Systems After setting up the Empowerment Center, systems to manage the function of the Center should be developed to continue the process of empowerment. Key components of such development were information systems, a self-evaluation scale for future well-being, and self-training programs to keep well-being for each person as well as promoting mutual support. Information Systems Information is the lubricating oil for the total system, supplying the necessary means to keep the system fluid and working. Effective usage of information can be a proactive system component in empowering community members. For community situations, it is good to set up one core center and then establish several branches for information services. People can conveniently get information and consultation for any need they have simply by calling the Empowerment Center. An effective information system should also have the flexibility to distribute and diffuse any informational content as soon as possible. Precision and keeping information up-todate are important to maintaining the reliability and validity of the system.
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Self-evaluation Scale for Future Well-being From the data analysis, a self-evaluation scale for future well-being was developed. In this scale, points were assigned to each related item, such as healthy behavior and social interaction, which reflect the magnitude of risk for physical deterioration and mortality. Adding up the points of all items, people get their own total score, which indicates the expected level of future well-being. If the total score is lower than the standard, people realize that their lifestyle had better change to improve their future well-being. This instrument is useful in reviewing activities of everyday life and gives people meaningful information related to their ongoing lifestyle choices. Improved empowerment can thereby successfully utilize an analysis of factors associated with future well-being. Self-training Programs to Maintain Well-being for Each Person Individual action plans, including a self-training program to keep well, were designed, based on longitudinal data collected from the community. Seventy-two patterns of action plans were developed and then each person was given the most appropriate plan, according to his lifestyle. Each action plan had three parts: first was the self-training program at home; second was a training program including activities such as swimming at the Empowerment Center; and third was the anticipated direction and effects of their healthy lifestyle. This individualized prescription for future well-being induced motivation and produced healthier behavior among the people in the community. Promoting Mutual Support Independent individuals may be able to establish a real mutual support system, but it is much more challenging for a dependent culture such as one based on the historical mura or village concept. These social ties have been gradually disintegrating over time, especially in big cities, where most people have lost the old type of community spirit. In the past, familyoriented care was the only choice for many people. Yet clear limitations of contemporary family care opened new fields in social support—for example, co-ops and public long-term care insurance. Furthermore at this point a mutual support system is strongly desired not only by the government, but also by the people themselves (Anme, 1993). To promote this mutual support system, new methods were developed, such as education of volunteer leaders, dissemination of information to volunteers and the establishment of places to exchange information. Self-checking and Self-development Programs The function of self-checking and self-development programs is to provide the foundation for efficient administration maintenance and to refresh
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Figure 5.4 How to Develop an Empowerment Model in the Community
the system when needed. All programs should have feedback and assessment routines for further refinement and development. We have developed software that will allow us to evaluate services and we plan to do so every three years. These procedures are essential to guarantee the system’s reliability and validity. In conclusion, to develop an empowerment model in the community, the effective utilization of a supportive culture is indispensable (see Figure 5.4). Communication, motivation and science are important elements in forging such a supportive culture. Communication must come with acceptance and understanding. Motivation must be achieved through participation and an attitude of do-it-ourselves. Science can capitalize on the respect for logical analysis and clear expectations that make it easier to understand the factors involved in empowering people in the community. QUALITY OF STAFFING To realize empowerment we need high-quality staffing in the provision of health and social services. In order to secure staff for successful empowerment of people, we have developed an evaluation method for professional caregivers. We found that professionals in the health–social service area need three phases of support (Anme, 1998). The first is person-to-person support, the second is teamwork support and the third is system support. Person-to-person support means that the relationship between professional and client is one direct line. Teamwork support means that the relationship between a professional team and their client is more complex and that complexity must be acknowledged and paid attention to. System support refers to a community-based system, the community including the professional team itself that is ready to provide better support for its clients. Our goal for a community-oriented system is predicated on this. So, appropriate evaluation methods are needed to measure the effectiveness of the support. To establish effective community-oriented empowerment, three points are
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crucial: (1) evaluation methods for health-social services, (2) an education system to produce a higher quality of professional staff, and (3) an influential person to motivate the people in the community to promote a better system for the future. Evaluation methods for assessing professional skills and knowledge are the fundamental basis for practice and education. And the basic concept of professional skills and knowledge must be common for professionals all over the world in this time of international cooperation. We have developed a conceptual framework as well as practical methods to assess professional skills and knowledge of health-social professions and their provision of programs (Anme, 1997b). Over 1,100 professionals in the health and social services fields (including social workers, institutional care workers, nurses, physiological therapists, occupational therapists and other health care professionals) were asked to complete an Index of Professional Skills and Knowledge questionnaire. A model of this Index was constructed by using three categories—self-care, mutual care and professional care (see Table 5.1). This model of evaluation is divided into five processes: (a) finding the problem, (b) assessment, (c) intervention, (d) evaluation, and (e) feedback. Each subscale focuses on specific professional skills and knowledge, covering all health and social service professions. The basic criteria of this Index are as follows: (1) the availability for support, meaning that older persons are able to get the information available for practical support; (2) the opportunity to integrate information, which means that data from various areas are integrated into a care plan; and (3) prediction, which means that one can predict how to improve the situation from the present to the future. As the result of our investigation, almost all professionals agreed on the framework and the items in this index (Anme, 1997b; see Table 5.2). Very few differences existed between the mean responses of several kinds of professionals. In other words, this Index should be useful for all kinds of health and social service professionals in helping them to facilitate coordination with other professionals. It should also be effective at the educational stage to help shape the development of professionals in the health and social service fields. It is very important to share methods with other professionals in this field. CONCLUSION: ENHANCING EMPOWERMENT FOR ELDERLY PEOPLE IN THE COMMUNITY Working toward the utopia of a comfortable life for elderly people can be realized by evoking images of control, freedom, or power in people’s minds. In conclusion, five points have emerged that should enhance empowerment (1) prevention orientation, (2) effective evaluation, (3) investigation of
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Table 5.1 Professional Skills and Knowledge Index Chart
needs, (4) utilization of information technology and (5) promotion of participation. A prevention orientation means that empowerment is developed by focusing on the prevention of risks over one’s life span. Even for frail elderly, as well as healthy ones, prevention of decline in physical or mental function is essential to expanding their potential for becoming empowered. Effective evaluation means utilizing all facilities and resources to assess the available options and to maximize a person’s outcomes. Investigation of needs means providing formal and informal services with a clear understanding of their meaning and role in supporting the achievement of a desired level of personal independence in a flexible and accommodating way. Utilization of information technology is an issue of utmost importance for frail elderly people. Alienation from information is a key impediment to more enlightened and progressive forms of empowerment. Promotion of participation, with an eye on self-actualization, means espousing true empowerment for frail elderly persons as consumers, allowing them to understand and realize their abilities and desires to meet their needs related to independence. It also means allowing frail elderly people to control their care planning and acceptance of services to the limits of their ability, desire and needs.
Table 5.2 Index of Professional Skills and Knowledge for Health-Social Services
Table 5.2 (continued)
6
Empowerment in Post-Reform Community Care in England and Wales Bleddyn Davies
The British have been attempting a radical reform of long-term care. The first statement of the logic of the new policy was published in 1989 (Department of Health, 1989). All the legislation of that first phase came into effect in 1993. The administration introducing the reform was one of the most determined in postwar British history. It used the great power of the central government, in a unitary state with a belief in the legitimacy and quality of government, in new ways, which secured greater and faster change in the reality of community care than ever before. That forceful Conservative administration was succeeded by an equally determined Labour administration that was committed to giving the reforms new impetus. The essential elements of the Conservative statements of ends and means were maintained, though with more attention to equity generally. Labour rebalanced and refined the definitions of means and ends by taking into account the lessons learned from the monitoring of policy impact, and by developing new instruments to achieve the implementation of national policy (Department of Health, 1998). The policy statements and the guidance about how to implement the reforms were seen by its authors as highly principled and value-based (Utting, 1996). The promotion of empowerment and independence were key themes. People were to be enabled to lead as normal a life as possible. They were to be helped to achieve the maximum possible independence and their full potential. They were to have a greater individual say in how they lived their lives (Department of Health, 1989). All four interpretations of empowerment outlined in Chapter 1 have been the focus of detailed guidance,
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and of standards used for the central evaluation of local performance through monitoring and inspection. National policy in the United Kingdom is certainly in transition from a mere “social services” model to a “participation” model, in Moody’s terminology (Moody, 1976). So are most of the field agencies, particularly the local social services authorities that are responsible for the policy performance in their areas. Indeed, we shall suggest below that there are respects in which, for most users in many areas, a transition is being made toward a “selfactualization” model, though less in the forms adopted than in the style of specific activities conducted within the forms. The British national government worked the themes of empowerment and independence through at the level of policy logic. The exercise of pressure on field agencies to implement that logic has had an intensity that has been rare—arguably unequaled—in any other country taken as a whole. Perhaps it is for that reason that some of the policy statements and guidance about how to implement them have almost the status of sacred texts in certain other countries. b But the key concept in British policy statements is not “empowerment” but “independence.” Independence is not just the empowerment rose by another name. Partly, it reflects the distinction between an end (independence) and one of the means (empowerment) to that end. And independence has yet other significant meanings. Among its overtones are what some see as the redefinition of the rights and responsibilities of the individual, the primary social units like the family, and the State. The Griffiths Report of 1988 and the Conservative White Paper of 1989 (Griffiths, 1988; Department of Health, 1989) implied rather than stated these rights and responsibilities, defining the responsibilities of the State rather than of others. That, too, was the approach in the Labour white paper of 1998. It describes the social services as “for all of us,” and “an important part of the fabric of a caring society,” with everyone benefiting from “good, effective services for those who need them.” However, its approach is a policy that “spells out exactly what people can expect” (Department of Health, 1998). In contrast, the Minority Report of the Royal Commission on Long-Term Care, one of whose authors (David Lipsey) has been one of the most influential intellectuals of the Labour Party’s middle way, stated the implication of the Labour position with an explicitness and clarity verging on the ferocious (Royal Commission on Long Term Care, 1999). For instance, it argues that elderly persons have responsibilities as well as rights. And, to a degree understated in assertions to the Royal Commission on Long Term Care based on less structured evidence, this emphasis on independence is reflected in the way local managers interpreted the priorities that their authorities had to actually put into effect. This emphasis existed at all levels of management, from the directorate at headquarters to the managers of small facilities and field sections. A series of interviews of 133 managers, as part of the evaluation of the reforms described below, showed
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a high degree of consensus between authorities and levels of management about the effect most desired: providing “a real chance for more users to stay at home rather than enter a care home.” “Empowerment, choice and control over their own lives” and “support for family carers to enable them to have respite” were ranked next (Davies, 1997). But what matters is who benefits in what way and at what costs to whom. Harding (1999) rightly argued to the Royal Commission on Long Term Care that the research and monitoring of the reform impacts have been excessively focused on activities, service change, quantities of services, and impressions of participants. Her review well illustrates the point by alluding exclusively to such evidence, whether pre- or postreform. Judging from what the Royal Commission collated, the British evidence is primarily of ungaugeable representativeness; is small-scale, impressionistic, and narrow in its perspective; and is focused on input factors and processes rather than outcomes. Such imbalance in the methodological basis seriously risks distorting the message. We badly need to correct the balance with larger and more reliable evidence about who benefits in what way and at what costs to whom, and about how and why policies and process influence these outcomes. This chapter has three objectives: 1. to explore who are empowered and to what degree, examining three indicators of the concept; 2. to explore the implications for other benefits of community care of making the maximization of empowerment of users the central aim of community care, given existing relationships between service inputs and outcomes; and 3. to explore the implications for the levels of empowerment of users and caregivers by maximizing other benefits.
First, the source of evidence and methods of analysis are briefly described, because such explanation is essential if the reader is to understand what follows. DATABASE The evidence analyzed here is from a major project, funded by the Department of Health, titled Evaluating Community Care of Elderly People (ECCEP). ECCEP is the second stage of a before–after evaluation of changes in equity and efficiency in community care during the reform period. Two sets of interviews were conducted six months apart during 1985 and 1986, with triads consisting of the three persons who most influence the patterns of community services during the crucial early setup (SUP) stage of care-managed community care. Each triad had one of 419 frail elderly users themselves, their principal informal caregiver, and the worker responsible for performing the most important care-management tasks for
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them. First, the study looked in at baseline need-related risk factors such as perceptions, values and desires, as well as behavior- and decision-influencing factors such as perceived benefits, costs, and other outcomes at the setup stage. Six months later, during the phase of continuing care (COCA), we also monitored changes in utilization, location, and broad need-related circumstances until death. The study also looked at service-input factors and the roles of field personnel in their agency and others. It then examined the policies and structures of the social services department and other agencies. For instance, there were interviews with social service managers at all levels and with a wide range of functions. We measured the relative priority that 133 of them thought had been given during the early stages of the reform by their authorities to the policy’s ends and means. There were also interviews with managers of related agencies, and collections of agency documentation covering a period commencing in the early 1980s, when the first stage of the before–after study commenced. So, priority was given to the range and richness of the information rather than to sample size. METHODS OF ANALYSIS As the best database for the detailed description of postreform community care likely to be available for some years, there are extensive quantitative descriptions of the large number of individual variables. These vary from 24-page accounts to a book (ECCEP team, 1998). A wide variety of themes are being explored in more depth, using modeling and other forms of analysis—particularly care management themes and the evaluation of utilization patterns. The stream of analysis on which this chapter depends uses production function analysis, as adapted for the Production of Welfare Approach (Davies, 1995). By the term production function, we mean the statistical relationship between quantities of service inputs and final outputs; that is, outcomes of value in their own right. For example, desired final outputs might be the degree to which users feel that they control their own lives, the reduction of the felt caregiving burden among caregivers, or an increase in the number of days spent in the community. Thus, these final outputs are the dependent variables of production functions. The independent variables in such analyses include service inputs (e.g., money spent on services) and risk factors (e.g., level of cognitive impairment). Marginal productivities measure the increase in an output indicator that is associated with a unit increase in service input. Productivity curves describe the relationships between service inputs and final outputs for users in general or for subgroups of users distinguished by one or a combination of risk factors or other circumstances. The details of the techniques for using Production of Welfare
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Analysis have been described elsewhere (Davies, 1985, 1995; Davies and Challis, 1986; Davies & Fernandez, in press). Seventeen final outputs were analyzed. In addition to empowerment, choice and control, they cover six domains: • length of stay in the community • satisfaction with service • perceived improvement in functioning in service-related areas and reported unmet needs for help • general psychological well-being • reduction in social exclusion and improvement in relationships • care managers’ retrospective perceptions of the degree of beneficial impact.
Between them, the output indicators measure benefits for principal informal caregivers, as well as frail elderly users themselves. EMPOWERMENT, CHOICE AND CONTROL Three indicators were used to measure empowerment. One indicator, (IMPEMP, a measure of the degree of empowerment felt by users) was a score based on items indicating the degree to which users feel that they control their own lives. This is a score based on items from the Philadelphia Geriatric Center Morale Scale (Lawton, 1975). (Factor analyses for American populations have shown that a subscale based on the items used here is a psychometrically adequate indicator of the locus of control dimension of morale.) A second indicator, (UEMPOW, user empowerment during setup of services), measured the degree to which users felt that they had an influence, were given choice, and were treated in a way that addressed their problems in the care management process during the setup stage. The third indicator (CEMPOW, level of caregiver empowerment) assessed the degree to which the principal informal caregiver felt that she had influence or was empowered during the setup stage of the case management process. Items included whether the care manager involved the caregiver in separate discussions about the user, discussions about her problems of caregiving, discussions about her needs in her own right; and the degree of satisfaction of the caregiver with the extent to which her own needs had been taken into account. The productivity curve represented the overall effect of service inputs on the outcome or output in question. The full structural model consisted of a set of simultaneous equations that showed all the productivity effects, whether direct or indirect.
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RESULTS OF ANALYSES Low morale and high degrees of physical disability at baseline both depressed, to a great degree, the effects of services on subsequent felt control over life (IMPEMP). Results suggest that home care, home-delivered meals and respite care had the highest impact on the most dependent—those in “critical interval need” (see Figure 6.1). [Interval need is a crude measure of the frequency and predictability of the need for help developed by British geriatricians for use in epidemiological studies (Isaacs and Neville, 1975). The circumstances of “long interval users” suggest that help is required less frequently than daily. “Short interval” cases require help at least daily, but at predictable times. “Critical interval need” means requiring help several times daily at unpredictable intervals.] Community nursing inputs, on the other hand, had greater effects among cognitively impaired people targeted for day care, the effect being greater as their day care allocation increased. Several effects showed that inputs had diminishing returns: the improvement in empowerment (IMPEMP) associated with an additional unit of a service or resource was greater at lower levels of outputs than at higher levels. Next, we analyzed how the risk factors impacted the effects of services on empowerment or control over life (see Figures 6.1 and 6.2). The service effects on control over life (IMPEMP) were highest for the most dependent [those with high levels of “interval need”; that is, problems with Instrumental Activities of Daily Living (IADLs)], particularly if they have principal informal caregivers (PICs). Most of the additional impact of the services for those with informal caregivers was due to additional day and respite care. There was a substantial effect for those requiring interventions at predictable intervals at least once a day—those in “short interval need”—largely because of the inputs of day care. Among users as a group, the degree to which the effects of the risk factors in the equation were offset by service impacts is a substantial 24%. We lack estimates for other systems, or for prereform community care in the United Kingdom. However, on the face of it, this suggests a substantial degree of success of the services in offsetting the decline in control or empowerment (IMPEMP), due to varying levels of need. Additionally, some 54% of all users benefited from one or more of the productivity effects. Informal care had a powerful buffering effect on the user’s sense of influence and control during the setup stage of care management (UEMPOW). The better the support structures and relationships, the greater the impact of service inputs on this measure of control. This suggests that when elderly people live with the principal informal caregiver and perceive themselves to have a confiding relationship with the caregiver, these factors are important, and so may be the perception that the caregiver herself is a beneficiary from the services, though the effect is less clearly established. Figure 6.3 (UEM-
Figure 6.1 Returns to Factor: Home Care and Day Care Effects on User Control over Life (IMPEMP)
Figure 6.2 Returns to Factor: Respite Care, Nursing and Meals Effects on User Control over Life (IMPEMP)
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Figure 6.3 Contributions of Services and Need-Related Services to User Felt Control Score
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POW) shows the estimated productivity effects. They suggest productivity effects associated with higher dependency (at the higher IADL range or greater, or among those discharged from hospital at the beginning of the SUP phase to which UEMPOW relates), caregiver (PIC) stress, and homecare users living alone. Three of the productivity effects have sharply diminishing returns. These essentially amount to threshold effects—effects that shift a relationship from one form to another at some level of input. Other analyses (not shown) suggest that the service contributions may be substantial, but very similar across case types (e.g., those with long or short intervals of need, or those with or without a caregiver). Overall, the proportion by which the service effects offset risk factors (such as level of need) was estimated to be a substantial 14%. In addition, the proportion of users likely to be influenced was 74%, suggesting large and widespread service effects on an outcome of importance—felt control during the setup phase of care. A crucially related factor in understanding the felt sense of control by frail elderly people themselves is the experience of control and support that their caregivers have. The indirect effect of caregiver empowerment on the empowerment of the care recipient is one that has rarely been articulated, let alone analyzed in a broader context of service delivery and management. Thus, we analyzed the effects of services on the sense of influence felt by caregivers during the setting up of their community care. We found that empowerment of caregivers is adversely affected by user stress and coresidence with the user, particularly if the user judges that the relationship with the caregiver is marked by powerful affect. Perhaps the user feels that the caregiver might be “engulfed” by the caring role. Indeed, the important variables seem to have more to do with relationships and perceptions of dependency that must be worked through between caregiver and recipient. This may be the most important factor save, perhaps, for severe cognitive impairment. The productivity curves (not shown) for two home care groups (one with mild to severe cognitive impairment and the other with long interval care needs) were quite different. They suggest that home care has increasing productivities as the level of input is increased among the 50% of users predicted to be cognitively impaired. But we found diminishing returns for the 16% of users with only “long interval needs,” that is, needs for care less frequently than daily. On the other hand, there also appear to be diminishing returns for each of the two groups of recipients of day care for which any effects were found (those having suffered a stroke and those with employed caregivers). But the effects of respite care on caregiver empowerment for users with behavioral problems or user-caregiver relational problems do not seem to diminish with the level of the input. Other analyses showed that despite these apparently substantial produc-
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tivity effects, risk factors dominated. The overall proportion of risk factors offset by services is relatively low at only 9%, which is lower than for the other outputs. Perhaps unsurprising, in the context of the literature on the effects of correlates of cognitive impairment on caregiver burden, the degree of cognitive impairment better predicts the risk offset effects than the more general need interval (long or critical) classification. But though the service effects are weak compared with the risk factors, a high proportion (74%) of users are still affected by them. And the estimated productivity effects are not small in relation to the variation in caregiver empowerment, so that service variations do substantially influence how much power caregivers feel they have over setting up care. Thus, the results point to a conclusion that postreform community care does seem to improve the sense of users’ control over their own lives quite substantially, compared with what would be predicted in the absence of such reforms. It does give the users and caregivers (to a lesser degree in relation to what risk factors predict, but still to a degree that is statistically distinguishable), a sense of influence over the processes of assessment, care planning and care arranging. These results help to put some of the more depressed opinions about the effectiveness of community care into perspective. One such opinion is a conclusion by Harding (1999: 43) that, “older people . . . have not had a way of voicing their own priorities or discussing how best to meet them.” Another is a statement by Parker (1999: 53) that “care management, as implemented in the UK, cannot be for the carer; the focus must logically (and some would argue, morally) be on the user.” The latter statement has also to be qualified in light of the finding of the ECCEP study that in approximately one case in ten, care managers expected the principal informal caregiver to be the sole beneficiary of the care plan, the user gaining little (Davies, 1997). ISSUES RAISED BY MAKING EMPOWERMENT THE ULTIMATE GOAL That postreform community care clearly does, on average, substantially offset the feelings of loss of control predicted (and caused) by the worsening circumstances of elderly users is not evidence that the British system is producing the best balance of outcomes given existing levels of efficiency. Nor do these results indicate that attainable improvements in efficiency could do little to improve the levels of what are implicitly the system’s priority outcomes. Two questions are begged. One is whether empowerment itself is implicitly one of the highest priority goals of the system. The other is what would be the consequences for other desirable outcomes of making empowerment the key goal.
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The Relative Importance of the Empowerment Goal Clues to the answer to the first question are found by examining the proportion of cases that could be influenced by a service impact. It is true that real technological constraints on service productivities will affect these proportions, even when trying to reflect user priorities and values. For obvious reasons, care managers and care workers face real limits in trying to change the general sense of empowerment of an elderly person whose medical circumstances cause irremovable constraints. But it is also the case that how things are done can often have a major influence on the perceptions of these constraints. That is, the degree to which the way things are done can make community care services agents for Maslovian self-actualization, and so move both elderly persons and societies further along the Moody progression of social values discussed in Chapter 1. But, the proportion of risks offset by services also reflects the implicit priorities of the system. In an analysis of the proportion offsets for the initial 17 outputs, the “Risk Offset Proportion” for control over life (IMPEMP) is among the highest. So whatever output or combination of outputs it is that actors in the community care system are seeking to maximize, community care is actually producing a pattern that creates good empowerment outcomes compared with the levels achieved for most other outputs. However, these service impacts influence only a small majority, not the vast majority of recipients. Should We Make Empowerment the Overarching Goal? Not only empowerment, but also other outcomes are desirable in their own right. Given the absence of watertight empirical evidence about the preferences of persons before and after experiencing alternative outcomes, an analysis of the hypothetical effects of optimizing other outcomes than empowerment gives us insight into the potential costs of maximizing empowerment over other outcomes. Thus, the most relevant evidence for judging whether empowerment should be the overarching goal would be the pattern of outputs that would be produced if empowerment—rather than one of the other main outputs—were to be maximized. These other outputs can be conceptualized as somewhat analogous to collateral damage in war: an unavoidable consequence of attempting to hit a target. To simulate the effects of explicitly prioritizing empowerment requires that we study the effects of choosing empowerment rather than some other likely alternatives as the output to maximize. Maximization means creating a hypothetical world in which services are used to the best effect given their relative prices and productivities; that is, optimization. But assumptions have to be made about the constraints on the optimization. In this analysis, we contrast the actual patterns observed with predictions assuming that the
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pattern of inputs can easily be adjusted to maximize the output without having to pay higher prices for the services, or accepting services of lower quality: what we call “unconstrained” optimization. (For other optimization scenarios, see Davies and Fernandez, in press.) In Figure 6.4 the levels and mixes of “collateral outputs” given the most efficient balancing of resources to maximize empowerment (IMPEMP) are shown. Some explanation is needed. The figure consists of pairs of columns, each pair relating to one of the final outputs. • The first column of each pair describes the actual level of output produced currently. • The second column of the pair predicts what would be produced given the optimization of IMPEMP. That is, this column reflects the “collateral” level of outputs. • The height of the column shows the proportion of the output that would be achieved with a perfectly efficient combination of services to produce the outcome in question (e.g., days at home, caregiver burden, etc.). • The levels of actual current and collateral outputs are described for six case types, each of which has the characteristic of the average case of that type. The typology combines two characteristics. The first is whether a user has a “principal informal caregiver” (defined as someone whom the user claims to provide regular help with practical tasks of daily living). The second is “interval need.”
The results presented in Figure 6.4 suggest that to maximize frail elderly people’s feelings of empowerment over their own lives would: • actually cause a reduction in the number of additional days in the community produced for all case types but those with principal informal caregivers and critical interval need, leaving the level of the output low in relation to what could be achieved for some case types. That is so even though the current pattern reflects great variations in inefficiency, and this hypothetical optimization assumes the removal of inefficiency in combining service inputs. • reduce the level of user satisfaction with service (USATISF) for most case types, again leaving the level low for some case types. • leave the level of reduction of caregiver stress (KOSBERG) low, usually lower than currently. • for some other outputs (e.g., DLD—a life development score), create unsatisfactory patterns of collateral outputs. Felt sense of control (IMPEMP) is already, and would continue to be, high for users without principal informal caregivers. This result is not surprising.
These patterns would, on the face of it, seem to be unsatisfactory; all the more so because the estimates assume an unattainable level of efficiency in mixing service inputs given their prices and productivities. The question begged is whether seeking to maximize some other output would yield a
Figure 6.4 Collateral Output Levels for Optimization on IMPEMP with ‘Unconstrained’ Optimization
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more satisfactory pattern, including a satisfactory output for control (IMPEMP) but much better levels for other important indicators. We consider three candidates for alternative maximands: the number of days supported in the community (DAYS), user satisfaction with service (USATISF), and the reduction in caregivers’ felt burden of caregiving (KOSBERG). All three are implicitly of the highest priority in the value statements made in the official statements by the two administrations (Department of Health, 1989; 1998). Figure 6.5 shows the results for maximizing days at home (DAYS). Control (IMPEMP) would be improved or much the same as currently for most groups. By our criteria, the levels for users without principal informal caregivers would again be more satisfactory, although it would remain low for those with a PIC. User satisfaction (USATISF) would be substantial and/ or improved for all groups save long interval users with principal informal caregivers. But, once again, the reductions in caregiver burden would be low, and actually lower than currently—a serious weakness. Analyses with user satisfaction (USATISF) as the maximand were also performed. In such a case, DAYS would have a higher collateral output for most case types than if control (IMPEMP) were to be the maximand. But there are important exceptions, particularly for critical interval users with principal informal caregivers. IMPEMP would again tend to be higher for most users without principal caregivers than for others, for which it would tend to be lower than it is currently for critical interval users. One unsatisfactory feature of the patterns maximizing control, days at home, or user satisfaction would be the low level of reduction in caregivers’ felt burden. Would it be better to maximize the reduction in caregiver burden for the case types involved, and choose another maximand for the others? Such an analysis suggests that user sense of control (IMPEMP) would be little different from now. Days at home would be substantially, but not catastrophically, lower than currently for each case type. User satisfaction would be higher for all three groups. So the main cost of very large reductions in caregivers’ felt burden would be in an apparently much smaller proportional reductions in days. However, the caveat is that the reduction is only apparently much smaller because the indicator for reduction in felt burden is not likely to have the properties of a ratio scale. To assess the consequences of adopting different criteria for the case groups without principal caregivers, we need to prevent redistribution between types with and without principal caregivers. An optimization was undertaken that imposes the constraint that there is no redistribution of money spent on services across the six case types. Results suggest that optimizing days at home would yield much lower levels of control (IMPEMP) than with unconstrained optimization, though that level would be higher than currently for all except those with critical interval needs. Optimizing user satisfaction, control or empowerment would be substantially improved com-
Figure 6.5 Collateral Output Levels for Optimization on DAYS with ‘Unconstrained’ Optimization
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pared with current levels for two of the three groups, and much the same for the third. The collateral outputs for days at home in this case, would be better than with unconstrained optimization for long and critical interval cases, but still unsatisfactorily lower than is currently the state. Arguably, therefore, to combine the maximization of the reduction of caregiver stress where relevant with the maximization of user satisfaction for others might yield better outcome patterns than maximizing empowerment. CONCLUSIONS This chapter has shown that the United Kingdom is one of the more interesting cases of a nationally implemented plan for modernization of community care. It also happens to have been the subject of research that directly examines and evaluates equity and efficiency of factors that include indicators of empowerment. Therefore, it is interesting to consider what it teaches us about reform issues. The empirical results suggest that the pattern of outcomes produced by attempting to use the effects of services as they are now to maximize an indicator of empowerment does not yield a general output pattern that achieves some of the main aims of the reform. These main aims have been about independence, rather than empowerment per se, and an important element of independence was judged by the policy makers to give people the opportunity of spending a longer time in their own homes rather than living in conventional residential and nursing facilities. The policy makers also committed themselves to taking account of caregivers’ needs, increasingly doing so not just for those arising from caregiving itself, but from other associated sources of stress. Thus, the goals must not only yield satisfactory outputs for the extension of stays in the community and the reduction of caregiver stress, in particular, but also most of the other outcomes discussed above. So, what the results suggest is that it would be dangerous to overestimate the importance of any one goal, even empowerment. There is probably no single goal, and no simple combination of goals, which will yield an excellent pattern in all relevant respects. The dilemma of goal setting in policy making is that the choices so rarely seem to be between really satisfactory solutions. Of course, that is not an excuse for failing to search for solutions that better reconcile the aims. We are conscious that we are only starting a long journey of exploration and discovery, even in the application of the evidence that we have collected in this one project. However, it would be misleading to attach too much precision to the actual estimates presented here. The empirical argument is based on things as they are—on current productivities and efficiencies—based on current policies, structures and resources, assumptions and skills. Echoing Marx, the point is not to study the world, but to change it. And our estimates are no
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better than the validity and reliability of the indicators and the technical skills, imagination and judgment of the modelers. As a branch of science requiring the practice of what must become a cultivated form, the mapping of productivities and efficiencies in the production of welfare is at an early stage. And that world will always elude capture. “Ah, what a dusty answer gets the soul when hot for certainties in this life our life” (George Meredith, “Seed Time” 1923). But the results certainly provide new insights into how we might conceptualize and handle these important dilemmas of community care policy.
PART III
ENVIRONMENT AND EMPOWERMENT IN CONVENTIONAL HOUSING
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Another Way of Living in One’s Own Home: The Salmon Group Projects Robin Currie, Marie-Jo Guisset, and Niek de Boer
INTRODUCTION This chapter examines the role of small housing units in the care of older dependent people as developed by different projects in Western Europe. It explores the ideas behind the concept of small housing units, examines the experiences of those involved in the developments and evaluates their contribution to the empowerment of older people and improvement of the quality of their lives. People managing all the projects found that in implementing their ideas they encountered impediments of different kinds arising from various sources. However, they also discovered that the common approach they shared to overcoming these impediments was an important and powerful advantage. The first part of the chapter discusses how in each of the countries concerned older people had expressed fear and hostility toward the idea of ending their days in a large institution. The response to these feelings was at the core of the concept of small units and the development of the individual projects. Arising out of the European Commission’s “Year of Older People and Solidarity Between Generations” in 1993, several projects from the countries formed an informal network, the Salmon Group. The next part of the chapter looks more closely at the Salmon Group—its work and its philosophy. Finally, the chapter provides a brief description of individual projects showing how each has translated the Salmon Group’s philosophy into its daily practice.
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OLDER PEOPLE: THEIR WISHES, NEEDS AND ANXIETIES—AND THE SALMON GROUP’S RESPONSE All the Salmon Group projects are different, yet in each country these projects have constituted a new approach, a different way of working, a reaction against tradition—the approach of the salmon swimming against the stream. Each project has sought to listen and react to what older people have said. Older people have posed specific challenges and led us to adopt particular models and work practices that have best responded to what we have been told. The feelings expressed by older people in our different countries were remarkably similar. Most older people living on their own in the community hoped desperately that they would not end up in large institutions. Some people living in large residential or nursing homes had adapted well. However, the majority regretted that they had moved there. Many were bewildered and depressed and did not seem motivated to adapt to institutional life. Often, the older people had lost contact with their previous lives; for example, in Liverpool a survey of older people living in large residential homes showed that 50% had no outside visitors apart from paid staff (Currie, 1992a). Our own findings have been reinforced by independent academic research. In the United Kingdom (UK) there have been two large studies. The first listened closely to the views of 1000 elderly people living in 100 large residential homes (Willcocks, Peace & Kellaher, 1987); the second talked with and examined the experience of 7,000 older people living in 175 homes (Booth, 1985). The findings of both studies were strongly critical of the way large institutions affected older people. These studies showed that even when enlightened methods of care were used and better training was given to staff, there seemed to be little effect on reducing the damaging effects of institutionalization. The powerful influence of the large institution was, it seems, overwhelming. These major studies, together with our own findings drawn directly from talking with older people in our own areas, have highlighted serious objections raised by older people to traditional large residential and nursing homes. Five major criticisms form the challenges to which the Salmon Group has responded: older people feel that in large institutions (1) it is not their own home, (2) they lack control over their own lives, (3) they become increasingly dependent on others, (4) they lose their own individuality, and (5) it is a strict and isolating experience. The Salmon Group is a European network of small housing units set up in 1993 after the European Year of Older People and Solidarity Between Generations. It comprises projects in Spain, Belgium, France, the United Kingdom, the Netherlands and Germany. The projects of the Salmon Group are essentially about how we have responded to the challenges and criticisms of traditional care of older people. The different situations faced in the dif-
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ferent countries have led to the projects adopting different ways of responding. The size of the houses varies from the largest with 20 residents to the smaller units with just 3 people. Despite the size differences, the projects are based on the same philosophy of providing ordinary housing in conventional residential neighborhoods. The Salmon Group members work together through study visits, seminars, training sessions, exchanges of staff and workshops. These regular activities give opportunities to share practical experiences and to exchange ideas and findings, giving them a collective and individual strength to face impediments in developing their practice. Using the name of a fish that swims against the current is fitting as the group “swims” against the traditional, large-scale “total” institutions normally seen. It also reflects the experience that the salmon often has to overcome enormous obstacles or impediments to reach its goal. The Salmon Group includes, on the one hand, projects that have arisen from traditional institutional care and, on the other, schemes that have developed as an extension of domiciliary care as a way of allowing people to continue to live in the community using ordinary domiciliary services. Thus the conceptual framework that is outlined has arisen from two quite different origins. In spite of their different professional and cultural backgrounds, the Group members discovered that they share the same approach to care and of a “way to be” with frail, handicapped or ill older people who need help and assistance. DIFFERENT PHILOSOPHIES OF CARE: THE MEDICAL MODEL AND THE LIFE MODEL The most essential aspect of the Salmon Group philosophy of care is the paradigmatic shift from the traditional, medical or therapeutic model to what we call the life model. To change from the well-established paradigm to this new paradigm of the life model is seen by the Salmon Group as the most important and basic step to realizing empowerment for frail older people. Many professionals as well as members of the general public talk about older patients, handicapped people or dependent people. For instance, the phrase “demented person” reflects the traditional way of viewing a type of frailty. It is focused on the illness itself, its symptoms and its consequences. It leads to a way of thinking and acting that fits the medical or therapeutic model. The phrase “person with dementia,” however, arises from an alternative way of looking at the situation, where people themselves, their life situations and social surrounding are the central focus. This leads to a different way of thinking and acting, the life model, which can be seen as an extension of the social model of disability developed in the United Kingdom and elsewhere (Oliver, 1996). In the medical model, disabilities or illnesses and their effects are seen as deviating from so-called normality at an organic and/or behavioral level;
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therefore, interventions by caregivers mainly consist of reducing the gap between the normal and the pathological. The objective is to allow or compel the person to behave in a normal, well-adjusted way, which does not disturb her surroundings. In the case of people with disabilities, the professional’s objectives may be to provide a secure and comfortable environment. This is generally done, however, according to an established professional view on how to solve problems or avoid risks. A medical scheme is designed according to the methods prevailing in applied sciences, focusing on the disease rather than on the person with the disease. The model, in essence, focuses on crises, problems and deficiencies. The medical model is based on a well-structured theory, which purports to provide an objective view of the situation, setting out rigid, but clear methods and practices leading to specific goals. According to this model, the expert knows what is best and so the only possible relationship, or “way to be,” is one in which the professional dominates and the older person becomes dependent and acquiescent. This also has the effect of discouraging participation by family members and friends in the older person’s social network who feel outside this exclusive relationship. At best, they tend to view themselves as helpers or even beneficiaries of the professional. So, at the onset of the illness, divisions appear between the position, the power, the role, the wishes and needs of the frail or ill older person and those of the professionals, volunteers and families. The consequences of these divisions are far reaching. A WAY TO BE WITH FRAIL OR ILL OLDER PEOPLE: COMMUNICATION, EMOTIONS AND RELATIONSHIPS The basis of the life model is individual empowerment. In spite of the onset of illness, a person remains an individual and recognition of this is at the center of the relationship between that individual and his caregivers. In the life model, the individual is the central point and not, as in the medical model, the illness or the staff. This point of view raises many questions: Who are the experts? What can be done when people cannot express themselves? Why do we want to make so many decisions for older people who need help and care? Who knows what is good and what is bad for them? As the life model starts from the subject, it has to be flexible and creative and it is pre-eminently subjective. The life model is process-oriented, not goal-directed, which makes it much more difficult to define what is good care or good practice. In following this model, it is less important to find “solutions” than to define a “way to be” for the relationship between the caregivers and the older person with an illness or disability. The life model does not aim to cure the disease but to respond to the person needing help and care—first by understanding the person and second by building or
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maintaining a good relationship and a personal way of living. Help is then given in order to support the realization of the older person’s wishes. When good emotional contact is established, caregivers are more able to understand people as individuals in spite of their illness and disabilities and more able to identify their needs and interests and to promote empowerment. By the same token, a positive caring environment encourages commitment and involvement by family, friends and other community resources. IMPEDIMENTS TO THESE IDEAS Large institutions have traditionally followed the medical model of care. By contrast, the capacity for flexibility in small housing units has made it possible to develop the life model. The different Salmon Group projects have had to fight first to put into practice the life model, then to prove that it is a worthwhile solution, or at least no worse a solution than the traditional response of large-scale institutions. The main impediments to the life model and the practices of small housing units come in the form of resistances from different sources for different reasons using different arguments. A few examples from the most important stakeholders and their concerns follow: • Government, national and/or local resist a new project because it is unknown to them. The norms and values of any different approach are new and not yet clearly defined in the initial phase: therefore, it does not fit in with the existing laws, rules and financial regulations they apply to services for this client group. • Professionals feel that an innovative project constitutes an attack on their own practices, standards and professionalism. If an innovative project is successful, then their body of knowledge or received wisdom, as well as their expertise, is questioned and their authority and security are undermined. At best they might have to reconsider their own practices, at worst they are redundant. • Relatives of older people also experience feelings of insecurity. A new approach means that relatives are confronted with the need to choose which way of care they prefer. They cannot simply rely on the expertise of the professionals but have to take responsibility for their choices.
These general resistances occur with every innovation, but in the case of the life model and small housing units there are even greater resistances located at the core of professional organizations: their goals, responsibility, effectiveness and efficiency—in other words, an organization’s very identity. PROFESSIONAL ORGANIZATIONAL GOALS In general, a professional organization tries to realize goals that justify its existence. These goals are worded in objective and, if possible, measurable terms through which it demonstrates the level of its success to its key stake-
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holders. In the case of housing and care, these stakeholders include not only the direct users, but also relatives, funders, professional associations, and society as a whole, which controls quality through regulations and laws. Generally speaking, managers try to satisfy their stakeholders by adhering to accepted norms and values. Even if managers see their primary objective as satisfying the client’s self-defined needs, they may find a problem in reconciling the client’s wishes and values with those of the other stakeholders. In the traditional health or care situation, managers look for objective goals in terms of therapeutic success or at least controlling deterioration in the situation of the patient or client; that is, they concentrate first on the deficiencies and second on doing something about them. If the situation is viewed from a life model perspective, then the subjective experience and preferences of the older individual—as a person not as a patient—are the central determinants of the action rather than the professional’s goals. This presents the professional organization with an identity crisis. If it is to adopt the model, it will have to change its paradigm, that is, its raison d’eˆ tre, in a way that goes against the accepted values of most stakeholders, except perhaps the primary client, the older person himself. Even if the organization puts the happiness of the older person as its primary goal, it is still adopting a deficiency perspective, that is, the medical model, since it seeks to improve the situation of the client. Happiness is a subjective experience. If one sees it as one’s goal to make people happy, one makes oneself completely dependent on those people. It is as if one gives carte blanche to the client to ask or even demand happiness as a right. One cannot resist because that would frustrate the goal of making someone happy. The life model and small housing units take a different perspective. They are not about happiness. For them the only definable goal is to respond to the wishes and values of dependent older people through empowerment. This means that the organization has no preset outcomes; its goals can only be described in terms of process. It is only to be expected for these reasons that challenging and changing existing practices and values encounters strong impediments. This is borne out by the experiences of Salmon Group projects. PROFESSIONAL ORGANIZATIONAL RESPONSIBILITY In the traditional care and housing organization the managers and professional staff consider themselves responsible for ensuring the attainment of the organization’s goals. Or, in more general terms, they feel responsible for everything that happens inside the institution. In the words of Goffman, they operate within and help to ensure the continuation of a “total institution” (Goffman, 1968). In the life model, older people are empowered, but with power comes responsibility. The control as well as the consequences of choices and daily routines are in the hands of the older people and are no longer the responsi-
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bility of the professionals. This results in role confusion for management and professional staff who see themselves not only as having responsibility because of their position but because of their expertise. They will have to redefine their own roles and goals, together with their professional identity and responsibility; they will have to come to terms with their own disempowerment. In the traditional organization, risks, problems and failures logically should be avoided or solved since they are seen as signs of failure or lack of expertise by the organization. In the life model, risks, problems and failures could arise from the choices made by the older person. Of course, this will generate a great deal of resistance, as it appears to run counter to logical thought as well as traditional practice. However, risks, problems and failures form part of the daily life of every citizen and are inherent in the basic human right to choose and make one’s own decisions with attendant consequences. In other words, the shift of paradigm from the traditional therapeutic model to the life model is a shift from the totalitarian, controlled organization to the open society with the chance and danger of personal growth, change and chaos. The relationship between the helper and the helped changes from control to trust, from fixed roles to open communication and dialogue. The role of the helper changes from caregiver to enabler or personal assistant. In societies where the threat of lawsuits for malpractice is commonplace, management will feel obliged to try to prevent any problem and risk and to make sure that failures do not happen. In this situation it is unrealistic to expect management to readily choose the life model in which they consciously relinquish control over the situation and give responsibility to the client. Hence, projects experience resistance to the introduction of such ideas. PROFESSIONAL ORGANIZATIONAL EFFECTIVENESS By its very nature, each professional organization will strive to optimize its practice in order to reach its goals, if only to survive in competition with other organizations. To optimize practice one tends to specialize and by doing that to break up reality into parts that one can control and influence. In that way, subgoals are created, which, in care institutions, reduce the understanding of the older person of what is actually happening and so erode still further their power and ability to control their private lives. Any goals that define optimal daily life for people categorically keep the power in the hands of the professionals rather than allowing the older people themselves to determine their own quality of life. PROFESSIONAL ORGANIZATIONAL EFFICIENCY By its nature and by the influence of its stakeholders an organization strives for maximum efficiency. To achieve this objective goals and subgoals
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are needed. It is very doubtful if the subjective life goals of any person are focused on maximum efficiency. They certainly will not be focused on the objective goals of the professional organization. Therefore the life model seems a direct threat to efficiency of the organization and the goals of its funding sources. To summarize these arguments, it could be said that all four aspects— professional goals, responsibilities, effectiveness and efficiency—are essential for the identity of a professional organization and are perceived as determining its quality. In many countries governments have introduced laws to control the quality of at least state-financed health care organizations. Such organizations are thus also forced by law to control their operations in order to demonstrate their quality objectively. Seen in this way, the primary client—the older dependent person—is at the same time the raw material, the product and the result of the actions of the organization. The client is the proof of the quality of the professional organization. All this presents a clear message that the professional organization is the expert and what it does is all for the client’s own good. Even if an individual thinks differently, the expert “knows” that the client is wrong and, in fact, thinking differently is part of the individual’s problem as defined by the experts. CONDITIONS AND METHODS TO IMPLEMENT THE LIFE MODEL IN SMALL HOUSING UNITS Diverse Skills and Methods In spite of what may appear as criticism, even an undermining of the professional by the life model approach, in order to put the life model into practice in small housing units, the first requirement is diverse professional and personal skills and methods. These skills can be taught, and the methods can be developed. Among the many skills and methods needed the key ones are the following. Organizational and Practical Requirements • A clear and explicit vision by the project initiators and managers. • An organization willing to take risks. • Sufficient “traditional” professional knowledge, expertise and credibility to withstand professional, funder, relative and societal criticism of the model. • Professional knowledge and ability to establish and manage an organization. • Professional skills, medical and therapeutic knowledge and equipment. • Skills in housing and interior design and the creative use of space. • A system of continuous, critical self-reflection by managers, professionals, caregivers and the support organization as a whole. • A system and style of open communication with all people involved.
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• A constant awareness of the possible dangers arising from management and organization goals, rules and regulations, especially those trying to maximize efficiency. • A management style that strives to be as flexible as possible with a minimum of structured operations. • A regimen in which each rule, protocol and regulation is regarded as temporary, to be changed when no longer needed or appropriate. • A management style of trust and questioning, rather than of command and control.
Philosophical and Personal Conditions: State of Mind • Trust in other people, in oneself and in life. • Basic concept: Everything is possible, until it is proved to be impossible. • Compare everything that is done with the way the older people used to live independently in the community. • Learn to live with uncertainties and feelings of insecurity. • Personal motivation and commitment of people toward the life model. • Perseverance and self-confidence of the project initiators and managers.
Management Methods • Involve key stakeholders, especially funders, with the project aims, developments and achievements. • Involve administrative and financial staff in the wider organization, particularly direct care, so they share the aims, problems and achievements. • Select project staff carefully—values are more important than professional qualifications or even skills and knowledge, which can be taught. • Ensure that staff understand, internalize and live the life model. • Give staff responsibility with support. Ensure that they know they will receive organization backing for any consequences arising from taking risks in the proper implementation of the life model. • Always be ready to introduce new support systems or adjust existing ones, when appropriate. • Join or form a wider network of projects with similar ideals and methods in order to share ideas and achievements and broaden the political and funding support base. • Institute an external system of evaluation and consultation.
EXAMPLES OF SMALL HOUSING UNITS The projects that work together in the Salmon Group share the same philosophy on housing and care facilities for older dependent people. Despite the common philosophy however, a number of key elements are different in each housing unit. The projects are located in different countries in Western Europe, with different political, social and cultural backgrounds,
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different laws and financial regulations as well as community expectations of the role of care services, of the family and of the position of older people in society. These different situations have led the projects to adopt different ways of responding to the challenges. However, no matter how different they are, each has found it easier to respond positively by providing small residential units that stress individuality in a community setting as opposed to institutional living. Because of this, the Salmon Group has shown that, in practice, the life model can be realized in many different circumstances and still share the same basic ideas and goals. Based on resident feedback, the projects have also achieved the same outcome of a higher quality of life, especially in comparison to the traditional institutional solutions (Plaisier et al., 1992). It is interesting that the model of small units can be adapted to different client groups. The following sections describe three examples of Salmon Group projects: Antenne Androme`de, Belgium; Personal Service Society (PSS), United Kingdom; and Anton Pieckhofje, the Netherlands. In each case, the needs for care and housing are caused by different problems in the everyday life and routine of the older people. The Anton Pieckhofje project in Haarlem, Holland, will be examined in the greatest detail. This project demonstrates that small units can also be adapted to the needs of older people in the final stages of dementia with high demands for care and, eventually, medical treatment, because of constant severe mental and physical problems. Antenne Androme`de Located in Brussels, Belgium, the Antenne Androme`de project is designed for older people unable to live on their own any longer largely because of social problems such as solitude, feelings of anxiety, and alcohol abuse. By living with five other people in a house that provides a private sitting/bedroom, and shared central sitting/dining room, kitchen, and bathrooms, these seniors are able to live a largely independent life again. Some outside professional help for housekeeping is available three hours a day. Two social workers assist the residents, if necessary, during weekly group meetings; they also provide individual support and counseling to help residents grappling with specific social and psychological problems and issues arising from living together in a group. Most of the time the residents function without staff on the premises and provide mutual support. Personal Service Society Personal Service Society (PSS) is a large nonprofit organization providing a range of community alternatives to institutional care for disabled people in the United Kingdom. It manages 25 ordinary houses located inconspicu-
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ously in different neighborhoods of Liverpool. In each house three older people live together, sharing the home and supporting each other. Some houses provide help to people who have spent many years living in longstay psychiatric hospitals. Four of the houses cater to older people from particular racial minority groups, for which the model is especially well suited because it is so flexible and the care provided can easily be adapted for individual and cultural needs. For example, in one house three Somali elders live together. The house is located close to their mosque and has been designed to provide space designated as a prayer room for those times when they might be too sick to go outside. They are supported by a paid Somali caregiver who goes in each day, preparing three traditional meals for them, speaking their language, understanding their religion and their customs. ANTON PIECKHOFJE Among Dutch experiments in the care of older people with dementia, Anton Pieckhofje holds a unique place. It can be seen as an innovation in vision and structure of care provision and housing facilities for dementia sufferers. Described below are the main characteristics of the project and the conclusions of the scientific research program that has been carried out at the facility. CHARACTERISTICS OF THE ANTON PIECKHOFJE PROJECT In Holland, when older people with dementia are no longer able to live independently (even with home care and/or care by relatives), they are moved to psychogeriatric clinics. Traditionally, the methods of care provision and the involvement of professional helpers in these clinics are based on therapeutic principles, in accordance with the health care system and the medical model, and on goals based on the needs or the organization. In the vision of Anton Pieckhofje, it does not make sense to have therapeutic aims as the center of the care policy, since the syndrome of dementia is an irreversible and progressive illness, and the stay in the clinic always ends with the death of the patient. A therapeutic approach in a clinical setting might even be undesirable, since it might work against the real wishes of the older person with dementia. For Anton Pieckhofje two principles are important in care and housing for dementia sufferers: 1. to offer residents the opportunity to retain their individuality and to live their lives according to their own wishes, in spite of any confusion or disorientation they may experience.
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2. to offer physical surroundings, daily routine, tasks and activities that are recognizable, well-known and meaningful, and that fit with the way residents see the world.
It is hoped that the realization of these two principles gives the person with dementia a sense of belonging and security in their world, a sense of self-respect, and of being respected and cared for. Description of the Project The two principles presented above are realized in four key features of the project: 1. Anton Pieckhofje is located in the middle of an ordinary residential area in the town of Haarlem. It consists of six houses, in each of which six residents live together. The houses are situated around an inner court. This court provides a secure area in which the residents have relative freedom of movement. Living in a small, familylike group prevents social isolation. It creates a recognizable and safe environment, furnished with the older people’s own furniture and belongings, even including their own dogs and cats. All this contributes to the ambience and feeling of well-being and belonging. 2. The relatives of the residents are expressly invited to continue their contribution to care, with the goal of keeping meaningful family relationships intact as much as possible. 3. Each house has its own small team of professional caregivers, providing care 24 hours a day. They are assisted in their tasks, as necessary, by people from local home help and home care services. The caregivers are responsible for all the personal care of the residents and for running the household in partnership with the residents. In this way continuity and intimacy in care and daily living are realized. 4. Housekeeping and individual care for the residents are combined. All aspects of these activities are incorporated in the normal routine of the day, and are recognizable and meaningful to the residents. As far as possible they fit with the individual wishes of the residents, who can participate as much as they want, ensuring that they are active players in the life of the house. In this way each house has its own unique characteristics and activities, changing from day to day according to the residents’ wishes and the interests and attitudes of the staff working at that moment. Together they live their daily life and make their own decisions in their own way. On occasions, medical or other professional treatment will be needed. Normally this will be given by the older person’s own family doctor, as it would in a domestic situation. If complicated medical problems arise, professional specialists—such as psychologists or physiotherapists from the psychogeriatric clinic— are available for advice or treatment.
Scientific Evaluation A four-year program of scientific evaluation was carried out by a group of scientists from the University of Amsterdam and the Dutch National Hospital Institute. The main conclusions from this project are:
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1. “The project is much more successful than most institutions in providing a high quality of patient-centered care in a situation resembling an ordinary household. The families of residents and the staff speak of a ‘difference between heaven and hell’ in comparing this new form of care with more traditional ones.” 2. “In general the project is very successful. The project attracts well qualified and enthusiastic personnel, and no major problems occur. In operating the project this way, the organization of care also works out to be somewhat cheaper than in ordinary institutions.” (Plaisier et al., 1992, 1995)
THE LIFE MODEL IN PRACTICE As highlighted at the beginning of this chapter, the projects of the Salmon Group are essentially about how they have tried to realize a life model, how they have responded to the criticisms made by older people of traditional institutional care and the consequent challenges these pose. What follows are some concrete examples of each of the major challenges of overcoming institutional living, and highlights of the underlying importance of using conventional housing design, which blends easily into the community in which it is located. It Is Not Their Own Home Salmon projects have found that older people living in large institutions complain that they do not feel they are living in their own home. Our projects have sought to respond to this challenge by demonstrating in very tangible ways that the units we provide and manage are first and foremost the homes of the older people themselves rather than of the staff. This means that in many projects older people participate in the choice of new residents moving into the houses and in the selection of staff. At Anton Pieckhofje, as described in the previous section, each older person brings her own furniture and pets with her, just as any of us would if we were moving into a new house. This is contrast to a traditional institution that provides furniture that is passed on in turn to every new resident and prohibits pets. Older People Lack Power Over Their Own Lives This particular challenge, set for us by older people, has been met in a number of ways. Within Salmon Group projects there is an emphasis on responding to the individual choices of older people, not on domination by professionals. Often, for example, the timing of cleaning of individual bedrooms is varied according to the individual wishes of the particular older person, rather than according to the timetable of an institutional regimen. At Anton Pieckhofje we had a man without any legs and only one arm who wanted physiotherapy. A program of physiotherapy was arranged for him
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even though the professionals and other staff in the unit felt it would not help him physically. Responding to individual choices has meant taking risks, particularly when this has meant allowing vulnerable people to go out into their own communities. For example, at Anton Pieckhofje a highly confused, demented elderly lady wanted to go out and wander around the town on her own. This was allowed and arrangements were made with the local police to bring her back when she had decided she wanted to come home but was unable to find her way. The houses at Anton Pieckhofje have been designed based on a traditional Dutch model, facing an inner court, to provide older people with dementia the freedom to move around according to their own wishes but within a secure environment. Many of the projects have recognized the importance of a garden attached to the houses, enabling the older people to go out whenever they want to without the help of others, which is one more step in the direction of “normal life.” Risks involved in giving people greater control over their lives are accepted by projects but are also shared with family, friends and other professionals. Another example from Antenne Androme`de illustrates this. Staff construct a relationship chart with the older person when they are being admitted and this is used as a focus for discussing relationships, highlighting the strong links the older person has with some family members and less strong links, even conflicts, with others. This provides a valuable opportunity for residents to indicate those whose views they wish to be taken into account. They Become Increasingly Powerless and Dependent on Others Salmon group projects strive to support people according to their own individually defined needs. They are not helped on the basis of preset professional criteria, but rather according to the criteria set by older people themselves. The aim is to maximize the potential of each individual person, to support people in having more control over their lives, not to make them more dependent. If this means assisting people on the basis of their individual needs and choices, then that is what we do. For example, in many of the projects, staff are only involved in household tasks such as shopping or cooking if the older person wants and needs this, and even then the emphasis is on assisting them to do it themselves. In order to stress this, projects often do not employ specific cleaning staff, cooks or care workers but simply support workers who provide assistance as and when wanted. We recognize that there can be a paradox here as there is a need to acknowledge the right of some older people to remain dependent if that is what they want.
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They Lose Their Own Individuality Responding to the challenge that older people in traditional institutions feel they lose their own individuality is at the heart of small units, which aim to be flexible and adaptable; it should not be the individual person who adapts but the institution that changes in response to individual differences. An example from Liverpool highlights this in relation to the houses that have been specifically designed to cater to the special needs of older people from particular ethnic minority communities. In a Chinese house that was established, Chinese staff speak Cantonese, provide Chinese food and ensure that Chinese newspapers and videos are available. Staff are engaged who understand the traditions, religions, festivals and role of extended family— essentially providing support in culturally sensitive ways. The house has been designed around the needs of the Chinese culture with a strong extractor cooker hood in the kitchen to cope with the rice boiler and wok cooking, and raised flower beds in the garden to respond to the enthusiasm of the Chinese community for gardening. Essentially, it is the house and the regimen that have adapted to the individual needs rather than the other way round (Currie, 1992b). It Is a Strict and Isolating Experience Salmon Group projects have responded to this challenge by aiming to provide an ordinary life based on what older people themselves feel that to be. This can be seen with respect to both the design of the houses and their location. In contrast to traditional institutions, houses in the projects mirror conventional housing design and are located in ordinary neighborhoods, where they blend in so well that most neighbors do not know they are special in any way. In Liverpool, for example, it has meant using ordinary houses on ordinary streets, houses that do not have a special name but just have a number like all the other houses on the street; they are not identified as being different. People living in the houses are regarded by their neighbors simply as the people who live next door, not as elderly people under care. Responding to this challenge has also meant trying to ensure that there is continuity for older people with their previous life before they moved into the small units. In many of the projects, as described earlier, support features are designed to maintain continuity with previous community living, such as retaining the same family doctor and community nurse rather than having to accept ones provided by the organization. Many of the projects work hard to maintain family relationships, often encouraging families to continue to provide personal care for their relative once they have moved into the unit. One of the striking features for many professionals visiting the units is the way that relatives are actively involved
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in providing support alongside staff. Indeed, it is often the staff who are providing support for the relative and the older person, rather than the relatives feeling like intruders, as can happen in large institutions. CONCLUSIONS The Salmon Group projects, located in different countries in Western Europe, have arisen as a direct response to the views expressed by older people. The projects found that traditional forms of care—most usually in large institutions—imposed major impediments to realizing the wishes and desires of older people and to their empowerment. Older people said that they wanted to continue to live as part of ordinary communities. In large institutions they felt major impediments to their empowerment: They felt they were not in their own home, they lacked control over their own lives, they became increasingly dependent on others, they lost their own individuality and they felt they were living a strict and isolating existence. In spite of differences in national cultures and local traditions, as well as legal and fiscal frameworks, the projects all focused on certain key impediments to empowerment. Critically, all projects identified a major impediment within the mindset of the service providers and their stakeholders, resulting in a delivery bias based on a medical model of professional control. In tackling this impediment, Salmon Group projects by contrast adopted a life model approach, focusing on the individual person and his or her empowerment. In order to implement this radical change in approach to service delivery, the projects found it necessary to overcome environmental impediments of location and housing design. The vital feature of all the projects has been the use of small housing units of conventional residential design that blend easily into ordinary neighborhood settings, unlike traditional forms of institutional design. This feature has been a key predisposing element in the overall model and has allowed the adoption of a philosophy of management and administration to tackle impediments to empowerment in living style arrangements. It has resulted in much greater levels of control by older people in all aspects of their daily living; for example, over simple things such as the timing and composition of their meals, as well as in more significant decisions, such as the selection of new residents or new staff. The use of small ordinary housing in conventional neighborhoods has also enabled the projects to focus on the individual aspirations of older people themselves. The projects have demonstrated how small housing units can be flexible and adapt to the individual person in contrast to traditional forms of care, where the person has to adapt to the institution she is entering. Flexibility is important, since it is often rules, regulations and rigid procedures that act as major impediments to empowerment. This flexibility, which runs through all aspects of the projects, is demonstrated most clearly in
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relation to overcoming the impediments to empowerment arising from differences in language and culture. Small housing units have shown how they can effectively and sensitively respond to the different aspirations of older people from racial and ethnic minority groups—something much more difficult to achieve in large institutions. Independent research with older people, relatives and staff has shown the viability of the projects’ focus on empowerment based on their location within small housing units within conventional communities. The research concluded that “the concept of autonomy and self-determination as it is promoted by the Salmon Group small housing units is an adequate approach towards care of people with dementia. Especially the staff’s attitudes reflect that the Salmon Group principles have been maintained and adapted as a guideline for living and working with people suffering from dementia. This approach is by and large also accepted by family members whose involvement in the care process is of major importance” (Leichsenring & Strumpel, 1998). The specific research at Anton Pieckhofje similarly found that the life model, as practiced in small units within a traditional community, was well suited to the care of older people even when they had severe mental or physical problems. Not only did it conclude that the quality of care as good as that in traditional institutions but, perhaps more importantly, that the quality of life of older people was much higher. Significantly, the research found that this was achieved at a cost no greater than in traditional institutions. Why, then, aren’t small units more prevalent? The answer lies in the tension between the medical and life models, between empowerment and dependency, and the challenges and threats these pose for organizations, professionals, relatives and even older people themselves. However, unless we face this tension and tackle the impediments to empowerment, we cannot respond to the criticisms of traditional institutional care raised by older people or the consequent challenges these pose. It is in the interests of us all—both professionally and personally—that we do so.
8
The Role of the Built Environment in Holistic Delivery of Home- and Community-Based Care Services to Frail Elderly Persons Leonard F. Heumann
No one has ever directly evaluated the use of environmental adaptations by care management providers, nor are they typically asked why environmental adaptations are included or ignored in the provisions of support with independent living among frail elderly people. This is the purpose of this chapter. By exploring the inclusion or exclusion of environmental adaptations to the home as part of a comprehensive and flexible approach to care management, this chapter addresses a number of potential impediments to empowerment. When environmental adaptations are not part of a care management package it can: (1) limit choices and flexibility in support, which, in turn, limits power, (2) fail to minimize the use of visiting human service providers for frail seniors who prefer to maximize privacy and independence, and (3) fail to achieve maximum integration and coordination of the support options most desired by frail elderly clients. This chapter also addresses environmental impediments to empowerment of frail elderly people. When environmental adaptations are not part of a care management package, at least three types of impediments to empowerment can result. First, physical barriers within the home limit mobility, control, safety and full use of the environment. Second, inappropriate layout and design of the living space may compromise full control and use of the house. Third, maintenance and management of the house become complicated and costly and, in some cases, they are totally neglected, causing faster deterioration of the environment. All of these environmental shortcomings may interfere with the enjoyment of aging in place and can shorten the time in which frail elderly people can live independently in their housing of
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choice. It may also cause premature and inappropriate transfer to institutional care and thus the complete loss of power over one’s environment. BACKGROUND TO THE RESEARCH QUESTIONS Today, more and more elderly people are living alone without the assistance of extended family living. The result is that more frail elderly people have come to rely on either assisted-living facilities or home- and community-based care services to help them stay out of institutions and retain as much independence and power over their lives as possible. By far, the most popular solution has been remaining in their private, preretirement homes and communities (Baldwin & Evers, 1991; Howe, 1992; Kendig, 1990). Informal support from relatives and neighbors has remained a major source of aid, but formal support provided by church groups, fraternal organizations, local government and for-profit service providers has steadily increased over the years. Not only has the number of seniors relying on community-based services grown as society has been aging, but the number and variety of service vendors has expanded as well to meet the expanding level of dependency that we support in private homes. Today, the leading edge of these services can prevent moves to nursing institutions for many seniors with the most advanced levels of dependency. The single most critical invention for enabling multiple visiting services to function effectively has been case/care management. Without this added coordination of services and advocacy on behalf of frail people, we would have gaps, overlaps, and conflicts in scheduling and providing visiting support services, and unneeded and unwanted interference with household privacy and quality of life. When functioning ideally, case/care managers help residents retain maximum control over their private environment, support delivery is as non-intrusive on private living as possible and assistance is provided at the margin of need and desire without either dangerous overor under-caring. As early as the mid-1970s, we saw that planning and coordination of visiting services could contribute to higher levels of satisfaction (Kramer and Kramer, 1976). By 1980 the U.S. Department of Health and Human Services had commissioned a major study of the effects of comprehensive community-based care-managed services (Mathematic Policy Research, Inc., 1987). The findings were largely positive, and since then case/ care management has been spreading throughout the developed countries of the world (Howe et al., 1990). Today, advanced communities can keep even the most dependent seniors in their own homes via care management at lower cost and with greater dignity than moving to nursing institutions. But care management as currently practiced also has its critics, in that the majority of programs have been developed and funded so that human services are the primary and often the only solution to support or assistance with advancing frailty and depen-
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dency. Most care managers are trained as social workers or nurses and thus stress social or medical human support. This seems to ignore modifying the built environment in favor of human service providers, even though studies show that modifying household space and equipment and eliminating barriers allows more independence and privacy for frail individuals and can reduce some of the need for visiting human services (Carstens, 1993; Feingold and Werby, 1990; Haber and Blank, 1992; Harrison and Means, 1990; Koncelik, 1982; Lawton, 1986; Levy and Malcom, 1993; National Association of Home Builders, 1987; Regnier and Pynoos, 1987; Steinfeld, 1981; Struyk and Devine, 1981; Struyk and Soldo, 1980). For some frail seniors, increased independence from visiting services created by environmental adaptations can be translated into empowerment, since it allows people to retain or regain more control over home management and privacy. In 1995, an opportunity to study a new community-based care program became available in southern Melbourne, Australia. The program being implemented was based on a care management model developed in Wisconsin (Bureau of Long Term Support, 1988), so it had ties back to my native United States and to one of the most progressive states when it comes to community-based social welfare services. This chapter is based on interviews with managers of home-based care-management programs, aged-care assessment managers and community-based service provision managers in southern Melbourne to test the relationship between human support and environmental adaptations in addressing the needs of frail and dependent elderly persons. BASIC PREMISES There are two premises on which this research is based. First, if human services (nursing, therapy, homemaking, social work and the like) are the only way offered to address frailty and disability, it is questionable if the care management model is truly holistic in its approach to minimizing costs and empowering clients. Housing gerontologists, unlike social and medical gerontologists, tend to look at advancing frailty and ask whether the environment has become a physical, psychological or cost barrier. They also ask whether the home can be made easier and safer to negotiate and use, easier to care for, more economical to manage, and become a contributing part of the service provision system. This may even eliminate some unwanted or unnecessary human support interventions. In Australia and the United States, close to 80% of seniors live in their own homes. In study after study we find that the vast majority of these seniors want to stay in that home as they age, but they face home maintenance, home management, home financing and environmental barriers that contribute to their functional and emotional dependence (see, for example, Chapter 4). The second premise is that care management, which includes environ-
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mental and home management adaptations, can be an important, empowering, and cost saving element in care planning. There is a rich and rapidly growing array of simple and cost-effective support devices and home modifications in lighting, heating/ventilation, sound systems, security systems, medical devices and home appliances. Some are built in while others are brought in. These devices are being invented so quickly that the average social worker or nurse knows little or nothing about them. Admittedly, some are very costly, state-of-the-art equipment that use home computers and robotics and are seldom cost effective for the relatively short time they are needed. However, others are remarkably cheap and simple and require no special electronic adaptations. These devices and building adaptations need to be part of the support choices and cost options open to seniors to empower them with knowledge to design their own in-home care plan. They will never eliminate human support services for frail and lonely seniors, but they can provide more options, and, therefore, greater empowerment. THE CARE MANAGEMENT PROGRAM DEVELOPMENT HISTORY IN AUSTRALIA AND VICTORIA In 1986, the Australian Commonwealth government established a new aged-care policy to direct all program development: the Nursing Homes and Hostels Review of 1986. This review found an imbalance between residential care and community care and called for more effective communitybased services. The review found that residential care facilities could be rigid and costly solutions to long-term care. Because of the singular funding focus on residential care prior to 1986, persons who could remain in private housing at potentially lower costs and with greater consumer satisfaction and dignity were being inappropriately transferred to long-term care facilities. In order to strengthen home- and community-based care options, the Commonwealth government created two new programs in the early 1990s called the Community Aged Care Packages Program (CACP) and the Community Options Projects (COPs). These programs will henceforth be referred to by their target populations, which divide the care and support continuum into (1) persons aged 70 and older with advancing frailty and in need of care, and (2) persons aged 80 and older requiring a nursing home level of care, respectively. Both programs are designed to meet the same goal—to lower the costs of care by keeping people in the preretirement housing they prefer. One program focused on homemaker services, the other on nursing care. Both programs provide care management through multiple visiting services offered by local vendors. The nursing home–care managers can do their own assessments of eligible clients. They can also employ any support service to meet their clients’ tastes and needs, but because their clients are frequently established users of municipal-based and -funded Home and Com-
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munity Care (HACC) services at full or partial subsidy, these services tend to make up the core of support. This is not unlike the wide array of municipal vendors found in cities in North America and Europe, each providing one of the multiple services needed as frailty advances. In Australia, as in the United States, these services have a history of being “provider driven” so that services are delivered in a categorical format, routed to a client at the vendor’s convenience, and provided only during limited weekly working hours. With the presence and advocacy of the care manager, it was felt that these disparate vendors would be coordinated and support would be delivered to fit each client’s unique support needs, lifestyle, and blend with existing informal support networks.1 THE CHOICE OF STUDY SITE AND STUDY DESIGN A research goal was to study the impact of these case-managed homeand community-care programs in an entire region as opposed to randomly sampling vendors throughout a state or metropolitan area or conducting an in-depth case study evaluation of just one vendor. The southern metropolitan region of Melbourne was selected for three interrelated reasons. First, it is a sizable but manageable urban subarea of about 1.5 million people with well-defined boundaries. Second, these two managed care programs had been up and running longer in this region of Melbourne than any other (1.5 and 4 years). Third, this region had the best coverage of the elderly population by these care management programs. While Melbourne as a whole is a very young metropolitan area with only 7.1% of the population over age 70, the senior population is highly concentrated in this southern region: 11% of its population is over age 70 and 30% of those seniors live alone. As a result of these demographics, it had the greatest demand for care managed services. The study consisted of 23 face-to-face interviews with program managers. This was divided into the 11 homemaker-level care management agencies, the 3 nursing-level care management agencies, the 3 ACATs (Aged Care Assessment Teams) in the region, and 6 of the largest municipal-based support service vendors, none of which had a care management contract.2 The ACATs and single service vendors were included in the study to give needed perspective to the opinions of the care management programs. The three ACAT managers provided all the client evaluations for seniors chosen to enter the managed care programs, and the six municipal vendors were the source of many of the services the care managers and their clients used. THE TYPE AND RANGE OF CARE MANAGEMENT AGENCIES All of the care management agencies were well-established service managers before being awarded a case management contract except one, which
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Table 8.1 Management and Service Models Total In-house Service Staff
“Super Carer” In-house
Case Managers In-house
Total Outside Care Staff
3—Homemaker care 5—Homemaker care 2—Homemaker care 1—combined Homemaker level vendors level vendors level vendors and Nursing level vendor 1—Combined Homemaker and Nursing level vendor
1—Nursing level vendor
was established specially for this purpose. (The homemaker-based service agencies have been operating an average of 60 years; the nursing level of support agencies averaged 39 years in operation.) All of the agencies but one were nonprofit. Four agencies targeted specific non–English speaking language and cultural groups (Greek, Italian, Jewish or Southeast Asian). Four addressed mentally disabled and homeless seniors or very low-income and public housing–linked clients, one targeted the blind, one was a fraternal organization’s members or spouses, and three served the full spectrum of low-income and non–English speaking seniors. While these were among the oldest social or medical service agencies in the metropolitan area, 4 were in their starting month as care managers when interviewed, and 5 others had been into the care management business less than 1.5 years. With the exception of one agency awarded 100 cases, congregate care management agencies were all contracted for between 13 and 30 cases, with an average of 20.3 cases, and all but the large one complained about their inability to attain cost economies with such a small caseload. The three nursing level agencies had case assignments of 30, 120 and 160, and did not complain about case-management cost economies. One vendor, with 160 nursing level clients and 100 congregate care level cases, was arguably the largest vendor of home-based service case management in the state or the country. All 14 of the care managers defined a similar mission for their program: to keep seniors at risk of transfer from their private home, in that private home with the highest level of independence and quality of life possible. Some added a statement about religious or cultural sensitivity; others stressed choices and empowerment in developing support plans. The single most interesting characteristic of these agencies was the variety of community-based service management and delivery models they represent. As shown in Table 8.1, they made up a four-point continuum, with agencies that provided all the visiting and community service staff in-house at one end, and agencies that contracted out all professional and service
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staff, even the care management, at the other end. The totally in-house agencies—the first model—tended to have a service center of some kind out of which all support was administered and managed. This could be a nursing home, retirement housing, a medical center or even an urban social service mission house. In many cases, part of the service consisted of bringing clients to the center for certain services such as respite, day care, recreation, podiatry, daytime meals, and the like. The second model, dubbed the “super carer” model was used by vendors who hired and trained care managers; these single care providers were their only in-house staff. The “super care” provider was a person trained as a family surrogate and expected to establish close bonds with the clients they served, even though the clients remained in charge and were seen as the “employers.” This single “super care” provider could do housekeeping, personal care tasks, shopping, and cooking, provide transportation, and even do some home maintenance and repair. The mix and extent of support was dictated by the client’s needs, tastes, and informal support environment, but as a client’s frailty increased, all these activities could and did become part of the “super care” provider’s job. Flexibility and client empowerment were seen as enhanced by minimizing the number of service personnel brought into the home, and by creating a trusted family surrogate in this comprehensive role of homemaker, friend and confidant. In the third support model, the agency just hired, trained, and monitored the care managers. The care manager and client worked together to choose and then broker all care services. In markets with enough high-quality community and private vendor choices, this model provided each client a high degree of support choices and support flexibility. This model could also put the greatest pressure on the care manager to see to it that each personalized service was providing the correct type and amount of support over time. They also had to make sure that all service delivery was coordinated so as to be the most effective and least intrusive on each client’s private life. In the fourth model there was only an administrative hub. Even the hiring of care managers was contracted out to community-based service vendors. None of the service staff that went into a client’s home on a regular basis were directly hired by the agency contracted to provide care management. The quality of performance of care managers was co-monitored by the service vendor that employed them and the hub agency that contracted for that employment. In the one example of this model, there are nine care managers—two from district (county) nursing services, five with different municipal social service vendors, one at an Aged Psychiatric Program and one with another nursing level care management vendor. From the care management and ACAT interviews, it was clear that potential clients seeking community-based care were not aware of this variety of care management in the region. Nor were they presented with a choice of which of these models they preferred because the 13 vendors did not
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have extensively overlapping markets. Even if the choice were available, it is doubtful that potential clients could really comprehend the differences in this variety of support delivery and how it would affect their lifestyle and tastes. In some future, ideally planned system, client choices across such a variety of care management and support delivery should be possible and understandable to fully empowered clients, and these four models should be compared for costs and benefits in service delivery to clients. This survey of the 23 managers was extensive. The next sections briefly show some critical findings regarding care provision, program costs and service limits, holding the environmental analysis to last, in order to predispose what is a very successful care management program, prior to addressing environmental issues. (See endnote 1 for a source of greater detail.) THE UPPER LIMITS OF CARE PROVISION POSSIBLE The social and medical care funding provisions per resident were tight but working well and the care management was able to keep people in their own homes with minimal risk. The homemaker care level program was able to keep people with even a moderate level of dementia in their own homes. The nursing home level of care program was able to support the most severe level of physical dependency at home, but advanced Alzheimer’s clients were more problematic and expensive, requiring psychogeriatric or neuropsychiatric assessments and a guardianship board. The most interesting finding regarding the limits of care were problems with the interface between the two programs. The care management vendors who had contracts for both programs felt they had a smooth transition as homemaker-based clients began to need nursing care. Neither the residents nor their families knew when funding changed because care management stayed the same. All the other vendors were having trouble transferring or starting services after age 80 with nursing levels of dependency. All felt the split in the two programs was a bad policy. Overcaring of a frail person can lead to the atrophy of their remaining independent skills. Four reasons for overcaring were reported: (1) poor coordination of overlapping support services; (2) inept in-house staff; (3) inept informal support; and (4) requests of the client. All four exist, but are kept to a minimum by the presence of care management and twice-monthly meetings to coordinate, evaluate and reassess all support and care elements among all service providers. Where there was no care management, the problem was shown to be far worse or not even recognized—let alone rectified—according to the six independent community-based service vendors. The most interesting form of overcaring was the fourth, where the client requested it. Care managers stated that clients needed to be empowered with the responsibility to control care planning. As long as overcaring was
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not life threatening it was seen by all care managers as worth allowing in order to keep the client empowered. Usually the request was due to episodic depression, so clients were helped over their depression by being kept in charge of their care planning and delivery. All respondents saw this as an example of empowerment that was only possible where there was a care manager who oversaw the full long-term support picture. Undercaring can be far more serious, resulting in a debilitating or even life-threatening lack of care. There was only one case of undercaring by an inept care manager, and this was caught and rectified by the twice-monthly case reviews by multiple staff. This has been found far more often when clients or their family try to monitor multiple visiting services on their own. COST EFFECTIVENESS OF THE PROGRAMS Client Load to Cases Assigned Each Vendor Both programs used a lump-sum funding per vendor, based on a government-anticipated allotment for the average client. Despite government expectations of the number of clients possible per lump sum, the average vendor served 8% more clients than assigned, and the average vendor said the agencies would peak out at 13% over the assigned load. Cost Differences between Home-based and Institutionalbased Care Determining the differences between home-based support and institutional care requires more than just comparing the formal service costs delivered. It involves monitoring the sundry costs of day-to-day living—the cost of financing and maintaining the housing and property and normalizing those costs so they can be compared—and looking at the flexibility and dignity of care. Crude comparisons that just take into account the care cost outlays by government showed that the care managed home-based support cost about half that of the cost per person reported by residential care institutions in southern Melbourne. The point of providing this overview of these care management programs is to show that they are well designed, efficient and caring programs that seek to empower their clients. Everyone agreed that care management had been successful in coordinating service vendors, advocating on behalf of frail elderly people, and providing holistic planning of support delivery. The only problems the program coordinators identified were the lack of caseload economies per care management vendor and the lack of care management choices for clients.
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Table 8.2 Availability of Services Like Home Maintenance Question: Do Clients Want and Need These Services? All directors of care management programs answered, “Yes, they are important and needed.” Question: Do You Provide Home Maintenance and Building Adaptations? Homemaker Care Level
Nursing Care Level
Have full range of services
18.2%
——
It’s a problem with only partial solutions
45.5%
——
Dealt with on an ad hoc basis with no program or agency to help
36.4%
100.0%
THE PRESENCE OF ENVIRONMENTAL PLANNING AND SUPPORT SOLUTIONS To test if these successful and well-run human service delivery models recognized and included the removal of environmental barriers and provided environmental adaptations, a series of three questions were included in the survey to test awareness and use of environmental options. The first question was open-ended, giving each program coordinator the opportunity to mention such solutions without any prompting. In the heart of the survey, managers were asked which services they used and what they cost. The survey went through the obvious services, starting with care management and moving on through meals, homemakers, personal care, nurses, physical and occupational therapy, respite, recreation, transportation, podiatry and hair care. The very next question asked if there were any other services required/requested or provided that had not been covered. The responses were laundry, religious ministries, personal budget and financial counseling, speech pathology, psychiatric visits, and extended holidays. No one mentioned home care and repair or special environmental adaptations or supportive devices. It was as if the built environment as a support or barrier to functional independence were not part of a holistic care plan. The next question asked specifically if there were services like home maintenance that were not available locally but that clients would like to have or that the care managers thought were important. As shown in Table 8.2, two of the homemaker level care managers said they had a full range of services available for aiding in the care and repair of clients’ homes (18.2%). Five managers indicated this could be a problem for which they had only partial
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Table 8.3 Continuum of Home Maintenance Solutions Beginning With Most Positive
solutions (45.5%). Four homemaker level care managers (36.4%) and all three nursing level care managers (100%) said their care managers dealt with environmental maintenance on an ad hoc basis and had no specific program or agency they go to for help. Table 8.3 presents a continuum of homemaintenance solutions, beginning with the most positive. The majority of responding care management vendors clearly had only partial solutions or no real solution to physical barriers or home maintenance problems. The responses to the first two sets of questions suggested that most of the care management was limited to human service delivery. Making the environment supportive was of secondary concern, or not provided at all if they lacked the community resources, funding streams, or expertise to include environmental upkeep and modifications among their support services. Toward the end of the survey a longer more detailed statement was presented to each program coordinator for comments. The statement was: In the United States, there is some criticism that there is too much emphasis on community-based visiting services and case management, too much emphasis on client assessments that measure physical and mental support needs provided by formal and informal caregivers, and not enough evaluation of the client’s physical environment and how it can be adapted. We are being accused of not assessing the barriers in the home and could do more in adapting the environment and providing me-
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Table 8.4 Should There Be More Barrier-Free Adaptations and Mechanical Devices Added to Homes in Place of Visiting Human Services?
chanical devices, leaving the clients to do more for themselves on their own, certainly with less formal visiting care provision and perhaps easing informal care loads as well. This could provide more client dignity and cost savings as well. Is this an issue here? Should it be? Why or why not?
Table 8.4 shows the responses to this statement. Environmental solutions were declared to be vital and being provided by just 18.25% of the care management vendors. The largest group, 54.5%, said they had mixed feelings about the issue. This group included some managers who liked the idea of providing environmental adaptations but opposed mechanical devices. But the others in this group all felt that frail seniors were so prone to isolation that any solution that diminished human contact would be a mistake. One went so far as to say that no matter how expensive the visiting service was, it was necessary to provide lonely clients with an important friendly visitor. Finally, 27.25% said they agreed that care management was too focused on visiting human services and not enough on environmental solutions. These 14 managers demonstrated the tremendous variety of feelings and responses to both environmental adaptations and the use of mechanical devices. If there were a consensus, it was that both were most effective and welcomed among the younger and less frail seniors. The greater the degree of mental disability and the less lifetime experience the elderly had with technological equipment, the less these solutions would be accepted and useful when compared to human service providers. The more isolated and homebound people were without family visitors, the more importance was
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given to human service solutions to frailty and disability. There was also a general admission that human service–provision systems often lacked the funding to introduce environmental adaptations and mechanical devices, and the service model often didn’t look for these solutions. With a new generation of seniors on the way who are more comfortable with environmental and mechanical support solutions, planning for these options needs to be explored. The following quotes are from the program managers most concerned with the lack of attention to the home environment. Social workers and nurses are not up on the state-of-the-art when it comes to mechanical devices and they are biased in favor of human service delivery. Technical advances and mechanical devices are the future of affordable home care. While there is no overcaring in our program, we do make clients and their families too dependent on us sometimes to serve their needs. Veneration of the home is the primary goal of these home-based care management programs; however, there is no money to support high-tech advanced environmental adaptations, except at the highest income levels. This is ironic because we have seen where the cost of a ramp and simple conventional appliances can decrease the need for home help. For a homemaker to take laundry to a laundromat can take 21⁄2 hours/week, and at $18/hour this can cost over $2,000/year compared to a $700 front-loading washing machine in the home, which will last many years. We ration our dollars and try to provide such solutions but, for better or worse, hands-on care is seen as the highest priority. The isolation issue aside, there is a danger that we do put too much emphasis on visiting services without taking steps before there is a pressing need for human support to make the environment barrier-free. Our assessments are made by people who want to provide human support, and getting a medical/social assessor to say all a person needs is home maintenance and modifications to the environment is hard. We see “our” needs as providers and we are lateral thinkers, so we bring in a service provider. But you are right, controlling wandering among dementia clients, for example, can be done via environmental design changes and technology, but it is a major solution we don’t address.
These three statements, while very good, still imply some incorrect assumptions and barely scratch the surface of technological innovations to assist the homebound and frail senior. When these care managers referred to expensive gadgets that senior couldn’t or wouldn’t learn to use, they mentioned computers and motorized robotics that required user manipulation. What most of them didn’t even know was that, for example, there is a toilet that by just sitting down on it each morning can check your pulse, take your temperature and even take a urine sample and send the data to a nurse or lab miles away for monitoring or analysis. Now that is expensive but relatively non-intrusive or complicated to use. But modern technology
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need not be any of these things. For example, all the windows in an older home may be impossible to open by an arthritic or frail resident or because the resident is afraid that an open window will make her vulnerable to criminal intrusion. So she never gets fresh air and natural ventilation unless a homemaker or other visitor is in the home to open and close the windows. This does not empower the resident; it only makes her more dependent. Now there is a type of window that could be placed in just two locations to save money and still get cross ventilation. The window requires only a tap on a bar (like the escape bar on a fire door) to open it about two inches. A second tap opens it to four inches. A third tap brings it back to the first setting, and a fourth tap closes the window securely. At its full opening, only the cat can get in and out. It is equally secure from burglary open or closed. Similar things can be said about removing thresholds from exterior doorways and still keeping the weather out, but allowing people who can only shuffle walk or are limited to a wheelchair to get in and out easily. There are cabinetry redesigns for ease of access and better safety. In fact, the number of new solutions coming onto the market each year are numerous without even mentioning the familiar ramps, grab-rails or safer kitchen appliances. Most care managers don’t even know these inventions exist. Sure, a fully state-of-the-art house can add up to a great deal of cost. But a home that is carefully analyzed and modified with the limitations, privacy and independence of the resident in mind, can be cost effective. When compared to the cost of visiting services, especially when they are going to be needed for five years of more, environmental changes can become a vital part of cost-effective care management and resident empowerment. In summary, only two of the program managers in the Melbourne study felt they had fully integrated environmental solutions into their care planning, which may or may not have been the case in fact. Three strongly agreed that the home and community care model was incomplete and lacked a very important environmental assessment and design component. The other answers all revealed either ignorance about, bias against, or lack of funding for, environmental solutions. All three circumstances made it hard to see how these program managers could ever fully appreciate or incorporate environmental solutions into their support planning. They all expressed little interest in knowing more about mechanical aids for frail and disabled people, and three managers saw their role as solving isolation with visiting human services to such a degree that no other solutions were considered. LARGER PLANNING ISSUES OBSERVED AT THE REGIONAL LEVEL A major benefit of the introduction of care management was the way it could lead to regional planning and coordination by an advisory group made
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up of all the community-based assessment and support agencies. In the case of southern Melbourne, the introduction of community-based care managers allowed networking of care assessment teams, district nurses, private and local government social and activity service vendors, hospitals, hospices, respite and daycare services. The list included everyone except environmental assessment, management, repair and renovation organizations, either because they didn’t exist or they didn’t fit with the health and human service industry’s view of care management. Working together, this advisory group assessed the efficiency of the current distribution of funds in care management to the region. This highlighted several planning problems. One was that 10 of the 11 homemaker level care management agencies were all too small to reach cost economies of scale in the use of care managers. The average vendor had only 20 cases, yet the program managers all agreed that it took between 30 and 40 clients to employ one full-time care manager at this level of support fully and effectively. When asked to look at their waiting list for care management, the average agency reported a waiting list that would increase their load by 65%. This would bring the average to 36 clients, which is at the point where they could efficiently utilize their care managers. As a result, the advisory group had become a political lobbying body, asking the Commonwealth government to “top off” all existing programs at 30–40 slots before adding any new vendors to the region. While totally logical and laudable, this plan might have also included looking at environmental issues when assessing efficiency in the distribution of funds. By doing so, they might have also concluded that some of the excess demand over supply for care management might have been addressed by removal of environmental barriers to functional independence, thereby at least postponing some of the care management load and the number and amount of human service delivery. The single largest design flaw that the regional planning and advisory group uncovered was the development of two separate care management programs with categorical ranges of service eligibility, eliminating a smooth transition from the homemaker levels to nursing care levels of care management. At the very time when frail seniors wanted and needed continuity of care management, they faced having their care plans and support staff bonds disrupted. The two agencies in this study where both programs were under one vendor reported a seamless continuum of care, so that the clients and their families didn’t even know when they had been moved from one program to the other. Beyond the holistic care advantage, there was also no duplication of care or project management; in fact, it actually simplified and strengthened program administration. For example, the dual-program administration identified a reduction in inappropriate referrals to nursing levels of care. Inappropriate referrals resulted from care assessors not fully understanding the range of support possible under the two programs, but also because assessors knew full well that “younger” seniors now in need of
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homemaker services would most likely require a transfer in the future to nursing levels of care. Therefore, some assessors would try to avoid a future transfer and disruption in care by entering a client into a nursing care management program prematurely. Furthermore, having both congregate and nursing levels of care under one program helped community-based care managers with a strict nursing perspective identify other forms and a wider range of support available in the community—something they could do in theory but tended not to do before when they were handling only frail seniors in need of homemaker services. Looking at the program split from the other side, the purely homemaker level care managers all complained of a tendency to postpone the transfer process to the nursing level care program because of the inevitable disruption in care planning and support staffing. Once again, the call for one continuous stream of uninterrupted care management and support was well argued, but every part of the argument was limited to a health and human services focus. One thing that could have helped ease the premature transfers and postponed transfers between the two programs was the most accommodating home environment possible. And with seniors staying with one stream of support for a longer time, and remaining in their homes for that entire time, more environmental modifications would become economically viable. The fact that the nursing care managers gained a wider perspective on social service options was also laudable; now we just need both the nursing and homemaker care managers to be trained to appreciate and consider a wider range of environmental solutions to client satisfaction and quality of life. ADDRESSING THE IMPEDIMENTS TO EMPOWERMENT UNCOVERED IN THIS CHAPTER Based on simple observation of home- and community-based care management in the United States, the author has seen results very similar to those in this study of southern Melbourne. The funding streams and the view of care managers all tend to be biased toward human service delivery at the expense of modifications to the built environment. If seniors want to maximize environmental support and independent living when faced with advancing frailty, they almost seem to be encouraged to look for a purposebuilt retirement or assisted-living solution. There don’t seem to be many program options for modifying a conventional home and staying put. Those that do exist seem to be very crude and not coordinated under a single care management model. This can only be seen as a limitation in support choices and flexibility, which limits empowerment of frail elderly people who want to retain maximum control of their support system. The added material and psychological cost of depending on others to manage a barrier-ridden environment has to take a considerable toll on personal empowerment—
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especially if visiting human support is entering a private home to complete tasks residents could do on their own with the right design, layout and equipment modifications. This can ultimately affect one’s desire and ability to remain in what was once and could still be an independent environment. Thus, both the material and psychological costs can cause the ultimate loss of power—a premature move to a totally dependent environment. The solution to this problem and the way to empower frail elderly people under these circumstances seems at once both very simple and very complex. In a 1993 book I co-edited we concluded that: One of the keys to an holistic approach to housing frail elderly people in conventional housing is the development of a “comprehensive community case worker” concept with persons trained and authorized to assist residents in managing their entire environment, including their housing, health, and human service-support needs. (Heumann & Boldy, 1993: 172)
While such a “comprehensive care manager” makes sense, I cannot find a program that encompasses the full range of knowledge and authority needed to do this. The programs and funding streams that generate health care managers, social service care managers and built environment care managers are all controlled by different government agencies with different policy initiatives and political constituencies in every country I have visited. In addition, no professional training programs present the full range of skills needed to be a comprehensive care manager. Instead, each of these professional areas has solidified a separate and limited view of support management and client empowerment. As long as we have only specialized care managers, there is serious doubt that any of them are truly empowering frail elderly people because they each ignore the others’ options when advising their clients. The categorically conceived program within which each care manager type must operate has only a limited view of total empowerment. The two levels of care management I analyzed in Melbourne were separate programs administered by different agencies with separate funding streams, care management and support networks but serving similar clients at different stages on the same support continuum. This makes no sense, nor does it make sense to overlay home care assessment, repair and renovation with yet another separate funding and management stream. If anything, it is a continuation of the categorical bureaucratic responses to needs and support fiefdoms that have no place in holistic care of frail elderly people, and make it impossible to empower them with at least a share of the management of their own support planning. In December of 1998 I attended an American Society on Aging conference titled “Care/Case Management at the Crossroads: Which Way to Quality.” While claiming to be in search of comprehensive care management, I only found several hundred examples of the common human
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services–based model presented at this conference. The key to a holistic system that empowers frail elderly people is a process that encourages them to remain active and knowledgeable participants in all their support and housing choices and decisions, making them their own best planner. To do this, a wide variety of support and housing choices must be developed into an integrated and smooth continuum of compatible housing and support transitions that are natural to a diverse community of elderly persons. We are only at the beginning stages of comprehensive and holistic care management that knows how to reliably measure “goodness of fit” between service provision, housing environment and client needs and wants. NOTES 1. The body of this chapter is drawn from a two-part series on this research published in Australian Planner (Heumann 1997a, 1997b). 2. One of the nursing level care management agencies is also funded as a homemaker level care management agency, so there are 14 program manager interviews in this group among 13 agencies holding care management contracts.
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When Community Planning Becomes Community Building: PlaceBased Activism and the Creation of Good Places to Grow Old Philip B. Stafford
This chapter outlines a community development model for the creation of healthy environments for older adults. It presents the philosophy and programmatic actions of the Evergreen Institute on Elder Environments of Bloomington, Indiana. The Institute was founded to conduct collaborative research and community development activities that would enable elders to age in place.1 As the following sections will show, the Evergreen philosophy challenges some basic assumptions about aging and health, and suggests an alternative paradigm in which “aging is not about time, but place” and “community is the smallest unit of health” (Berry, 1994). Moreover, planning for aging in place should be a community-wide project involving persons across the age spectrum. INTRODUCTION The concept of power and its related cognates—powerlessness, empowerment, and the like—traditionally finds its exegesis within the fields of political science and sociology. The fact of its frequent mention and its centrality here in a discussion of health care systems, suggests an implicit recognition that medical care is embedded within a field of, usually unequal, power relations. This is good, for while the field of medicine stakes its basic claims in science, and sometimes prides itself on being an art, rarely does it acknowledge its essentially political core. To understand the Evergreen philosophy, one must begin with an understanding of what it is not: a traditional medical service delivery model premised on the professionally
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defined needs of so-called frail elderly people. Following Estes (1979) and Chapter 1, I will refer to this traditional model as the aging enterprise, and state that this model has some of the following characteristics: 1. Patients are, for the most part, perceived and treated as individual entities divorced from their social/cultural/economic matrix. This is reflected in the fact that the overwhelming amount of care is delivered in the clinical setting (be it hospital, clinic, or long-term care facility). a reimbursement system that differentially rewards acute over chronic care; hospital nurses earn more than both long-term care and home-care nurses; physical therapists earn more than occupational therapists, and so on. 2. A disease model of old age takes precedence over an understanding of aging as a natural, entropic process. This is reflected in an exaggerated interest in longevity and life extension as a goal of medical research. the well documented and recent bias toward disease research in geriatrics as opposed to research on the basic biology of aging (Estes and Binney, 1988; Adelman, 1995). the precedence of cure over care and the privileged stance of acute care medicine vis-a`-vis long-term care. 3. Despite recent changes, medicine is still largely reactive and corrective rather than preventive in nature. This is reflected in the differential reimbursement of illness care versus prevention services and support for functional, albeit non pathological changes associated with aging.
That medicine has achieved remarkable results in the past century is also self-evident, though many of the best advances are derived from public health measures rather than clinical medicine. Yet, there is a growing sense of unease and uncertainty about the potential for medicine to be our salvation. Consider the following points: • Public interest in alternative and complementary medicine is growing by leaps and bounds. • While older persons express high levels of satisfaction with Medicare, our local research nevertheless reveals a certain degree of fatalism among elders that the health care system is not effective in addressing their primary goal, often expressed as “managing at home.” The modern system’s primary answer to the long-term care needs of elders—the nursing home—remains one of the most consistently feared institutions in our society, yet many elders see this as an inevitable locus for the end of their lives. • The call for greater empowerment of individuals and groups at all levels of health care is yet another indication that systems are coming into question; this publication is emblematic of this movement. And changes are clearly beginning to be implemented. Lay advocacy groups at the national level wield significant influence on
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federal policy and program funding decisions. Increasingly, legislatures are debating questions of science on the State House floor and developing bills related to specific diseases and treatments, requiring, for example, minimum insurance standards for mammography or overnight stays for childbirth. And, within the field of medicine itself, it would be fair to say, some increased attention to the issue of empowerment is evident, particularly with respect to calls for greater patient education.
In reviewing these forms of empowerment—lay advocacy, grass-roots legislative change, and improved patient education—we might, however, question whether they indeed imply a basic change in the paradigm governing health care. While bringing more care to more individuals is fundamentally important, if the character or premises of that care remain in place, it does not constitute a paradigm shift. A better-informed patient does indeed have the potential to exert more power over her destiny. But if empowerment is seen as a gift the physician provides to the patient—a form of noblesse oblige—the fundamental paradigm remains unchanged, the basic power relationship is unaltered. As the authors remind us in Chapter 1, “Empowerment is not something one does to or for another person.” In sum, a critical impediment to empowerment is constituted by the basic premises of biomedicine, which tend to place illness and disease within the context of the individual, objectified body. To “personalize” illness by paying attention to the subjective human patient is a step forward, but still falls short of a more radical orientation to illness and disease as fundamentally social, cultural, and political entities. A NEW PARADIGM FOR HEALTH CARE? A rethinking of illness as a sociocultural phenomenon has been an important starting point for research and program development in the Evergreen Project. For us, the new paradigm is based upon two simple premises: • Community is the smallest unit of health (Berry, 1994). • Aging is not about time, but about place.
First, thinking of community as the smallest unit of health merely suggests that no suffering is only individual but occurs within a context that includes other people and other elements. Conversely, we could say that when suffering is individualized it might be made worse than it needs to be. This is to say that illness, that frailty, that disability, and its resolution, is place-based. Second, it is fair to say that time, not place, is the privileged independent variable in traditional studies of aging and human development. In a medicalized model of old age, moreover, it is not time as experienced but time as chronology that assumes primary importance. The patient’s chronological age assumes a clinical significance far beyond that actually felt by the patient.
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It becomes a distinctive piece of identifying information even though chronology may have no felt meaning for the patient. Or, if it does have felt meaning, it is because the patient takes on the interpretation of signs and symptoms attributed to a “person of this age.” Insofar as old age has a generally negative connotation, then, feeling bad comes to be equated with feeling old. A vibrant old age becomes an oxymoron, as this subtle ageism pervades the semantic system. But what if we saw aging as being not about time, but about place? If this were the case, the proper study of aging would focus on the life world of elders. Time would not be ignored but would, more likely, re-enter our studies not as age, not even as cohort, but as life course, with the life course being interpreted as the intersection of personal and extrapersonal history (see, for example, Gubrium, 1993; Moody, 1994; Murphy & Longino, 1997). THE EVERGREEN PROJECT Following these two premises, the Evergreen Project has been, in a sense, an attempt to locate old age (Stafford, 1997a & b) and build community through this place-based activism (Stafford, 1998). Since 1995, the community of Bloomington, Indiana,) has been engaged in a series of activities and events designed to understand the life world of elders and, more recently, create good places in which to grow old. The effort has been entirely fascinating, at times frustrating, and overall, rather fruitful. The balance of the chapter will describe this project and conclude by returning to the subject of empowerment and its relationship to models of community planning for aging in place. If aging is about place, then the goal of community planning should be to create good places to grow old. And a planning model that emphasized empowerment would not predetermine what those places should be but, rather, promote citizen participation in answering the question of what constitutes good places to grow old. Moreover, involving people of all ages in that research can be justified on three grounds, at least: (1) community building that doesn’t involve the whole community runs the risk of failure; (2) everyone will grow old if fortunate enough; and (3) a place that works well for older people might just benefit people of other ages as well. The initial goal of the Evergreen project, therefore, was to promote a “shared vision of healthy urban environments for older adults” in Bloomington. The starting point for developing a shared vision, then, was to investigate the meaning of place. Previous studies in philosophy (Bachelard, 1969, Heidegger, 1971); literature (Berry, 1974; Sanders, 1993, Snyder, 1990); cultural geography (Golant, 1984; Relph, 1989, Rowles, 1978; Tuan, 1977); anthropology (Jackson, 1995; Rubinstein, et al., 1982, 1986), and gerontology (Lawton & Nahemow, 1973)—generally qualitative in nature—
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have provided insights into the dwelling experiences of elders and offered theoretical and methodological models for us. The goal of the Evergreen research, however, was not to contribute to the disciplinary understanding of old age (though that is a consequence) but, rather, to publicize and localize this understanding—that is, to make public for a local audience what we learned about the meaning of our place. In this sense, research and publishing are also seen as local enterprises and separate from but complementary to the academic enterprise. In pursuit of the meaning of place in old age, a number of participative and interactive strategies were employed during the period from 1995 to 1997. Separate reports were created for each but a summary listing can be provided here: • Eleven localized focus groups, involving 155 persons of all ages, were charged with discussing the question, “What makes a neighborhood healthy for older adults?” These groups were held in settings such as churches, senior luncheon sites, and community centers. Trained volunteers led and reported on each focus group. • A randomized household survey enabled us to gather voluminous data on the dwelling experiences of 200 older adults in five downtown census tracts. Interviews averaging 90 minutes in length were piloted with older adult community center volunteers, and conducted by graduate students in folklore and anthropology. • Ethnographic research with a smaller number of elders (n⫽27) was conducted over a period of six months and provided rich, detailed descriptions and interpretations of the life world of elders at home and in the community. • Interviews (17) with elders in their homes and in adult day care were conducted by high school students as part of a social studies learning experience about growing old in Bloomington. • A creative writing project involved two groups of elders and two classes of elementary school-aged youth in an extended exploration of place and the meaning of home and neighborhood. • Mapmaking activities produced compelling child-centered visions of neighborhood for viewing by the larger public in an exciting multimedia exhibit held at the local arts center. These maps, along with collages produced by adult day care participants and audience-participation murals complemented a series of lectures held at the center over a period of four months. • Interior design focus groups and visual questionnaires led by consulting architects and their students provided valuable information regarding perceptions and opinions about interior spaces, textures, needs and amenities. • Census studies and photographic-archive research provided numerical and visual records of changing demographics and patterns of development relevant to the aging of the specific neighborhoods. • Two successful neighborhood design workshops produced valuable input from a wide range of citizens regarding ways to create more livable environments and a
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large number of visual renderings of ideal spaces, suggesting new themes for development.
By the end of the initial research phase, over 800 citizens had been directly involved in one form of research or another—all contributing to an important public dialogue. To reach an even broader public, the results from individual studies, along with eloquent quotes and exciting visual renderings were published in an attractive and readable format and distributed as a newspaper insert to 25,000 households in the community. A summary of the various themes identified in the research was included and we summarized what we now refer to locally as the Evergreen Design Principles. These five principles, simply stated, include: 1. Neighborliness 2. An environment for growth, learning and autonomy 3. A positive image of the environment 4. Diverse and affordable housing options 5. An intergenerational retirement community.
Each principle was accompanied by numerous corollaries and now, widely affirmed, has become the basis for community development activities, as applied to a variety of environmental issues. Indeed, the compelling and shared vision that emerged from the first phase of research enabled the successful acquisition of funding to begin to address the task of manifesting the vision in a second, program development phase, described below. MANIFESTING THE VISION OF A GOOD PLACE TO GROW OLD If one strong theme emerged from the first phase of research, it was centered around the notion of aging in place—what we locally call staying put.2 Moreover, our local interpretation of the concept of home entailed not merely the house but also the neighborhood and the larger community of Bloomington. Insofar as a sense of home entails a sense of community, it was felt that program innovations themselves should build community in form and process, just as the research had. Moreover, it was felt that focusing on assets rather than needs would enable us to avoid the social service approach that emphasizes old age as a period of dependency, following Moody (1976). Asset-based community development is well defined in the work of Kretzmann and McNight (1993). A review of our research findings, in light of desired design principles, revealed just such a set of community-based assets, that, we felt, could provide a base for community change. Three basic assets were taken as starting points:
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• Housing equity • Social capital • Principles of cooperation and communitarianism
Housing equity refers to the value of the house itself to the older resident. We discovered that not only are a large majority of elders homeowners (80%), but that the physical environment of the house (for renters as well) provides daily reinforcement of positive strengths. The house anchors financial wellbeing, plus a sense of aesthetics, security, and stability. It provides a locus for a meaningful and active daily routine, provides a mirror for the self as a guardian of memory, and (with its yard) serves as a base for social interaction. Social capital refers to the stock of human relationships built up over a long life, the knowledge of the community and its resources, and the ability to create and sustain interdependent relationships with family, neighbors, friends, and service providers. Our research discovered that older adults have longstanding connections to place. The average length of time spent in one location was thirty years. This contributed to knowledge of place and extensiveness of networks, though this capital was threatened by the changing demographics of neighborhoods and the isolation caused by mobility impairments. Principles of cooperation and communitarianism speak to the willingness of persons to enter into networks of cooperation and mutual benefit. Our survey research revealed an openness to diversity, an interest in novel lifestyle options, and support for new forms of collective action. What followed quite naturally from a consideration of these assets, in light of Evergreen Design Principles, was an effort to build a community-based aging-in-place program that would include the following components: • • • • •
A reverse equity mortgage counseling program An expanded range of home modification resources and services A home-sharing clearinghouse A health/home care program based on principles of cooperation New housing options in core neighborhoods
Over the course of a year, with a second round of funding from the Retirement Research Foundation of Chicago, we proceeded to explore these concrete program ideas with local elders and other community audiences in an attempt to identify potential barriers to their success and to access additional monetary resources that might be needed to implement them. Returning once again to the baseline of collaborative research, we conducted additional focus groups, interviews and market research to help us delineate the outlines of the programs, identify potential users and broaden the base of community support. Each program idea is discussed with respect to impediments that might prevent its successful development.
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Reverse Mortgages Focus group research with elders revealed significant suspiciousness about the concept of reverse mortgages.3 While elders definitely saw that their houses represented a chief source of equity—a financial “cushion”—there was great reluctance to actually spend from that resource until they perceived themselves to be in dire financial circumstances. The idea that this strategy could prevent nursing home admission, however, was appealing. Many elders are credit-averse simply because they lived through the Great Depression and maintain strong ethics of thrift (not an undesirable trait, of course). The lack of a local (read, trustworthy) financial product, moreover, was seen as a deterrent. The desire to leave a legacy to one’s children was also identified as a downside to reverse mortgages, though other research indicates this factor is stronger for seniors whose children are lower income. While not evident from focus group research, reverse mortgages would also be less useful in distressed neighborhoods with low or declining property values. With these considerations in mind, we proceeded to develop a local reverse mortgage education program and solicit the involvement of one or more local lending institutions to develop a product. We made wide use of an excellent educational video developed by the American Association of Retired Persons (AARP) and the municipality invested in training for federal certification of a local housing counselor. While face-to-face community education efforts have reached approximately 250 seniors, only a handful have sought substantive financial counseling. One local lending institution studied the issue for several months and then decided against getting involved. A second local institution agreed to implement a reverse-mortgage program but has yet to decide on a particular set of products. Once a decision is made, concerted marketing effort will be launched and we are hopeful of reaching a wider audience with direct mail. Home Modification Research on home modification has accumulated over the past five years and promoters are now well aware of a long list of impediments (Ohta & Ohta, 1997; Silverstein & Hyde, 1997). Local focus group research, surveys, interviews and ethnographic inquiry have shown that many of these impediments surface in the local community. These barriers include elders’ lack of knowledge about home modification options and local resources, perceived high cost of home modifications, and lack of trust of local contractors and remodelers (Ahmadi & Stafford, 1998). Survey research with remodelers has also revealed a lack of awareness of home modification strategies, a lack of knowledge among contractors about how to work with older customers and perceived low volume market (Earhart et al., 1998). Nevertheless, among both elders and remodelers, there was interest in obtaining greater
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knowledge and this was manifested in the very positive evaluations of educational programs developed and provided for both audiences in the form of intensive half-day workshops (Ahmadi & Stafford, 1998; Earhart et al., 1998). Yet, follow-up research to document completed home modifications revealed fairly low levels of activity among those participating in educational programs. Among 75 elder participants in our Six-Hour Staying Put Seminars, a mere 12% had initiated some concrete action regarding home modification, either implementing changes or contacting service providers. Currently, our community-wide effort is being transformed into a neighborhood-based program in hopes of securing greater levels of implementation. A collaboration in a pilot neighborhood involves the neighborhood association as the major sponsor, Habitat for Humanity to provide volunteer labor, the Agency on Aging to handle solicitation of materials, the City Neighborhood Development Department and the local disabilities agency to devise in-home assessments and work plans, the local mail carrier to make referrals, and the Evergreen Institute to lay the community development groundwork that integrates the program with an oral history project and block party. Home Share Clearinghouse Research that compared local with national attitudes revealed a greater than average interest in home sharing as an elder housing option in Bloomington. Interviews with local elders already involved in home share situations documented many positive experiences and demonstrated that the most successful matches involved relatively independent elderly women and both local and international students at the university. Hence, a local home share clearinghouse was created to foster matches and has been modestly successful. A pool of 15 elder home shares and an equal number of home seekers was created, resulting in four successful matches over a six-month period. As the program grows in visibility, we anticipate approximately 12 matches annually. Health Cooperative Research employing a number of strategies revealed both measure of dissatisfaction with allopathic medicine and an interest in the application of the principles of cooperation to health care. Hence, a community organizing effort was implemented and a small core of activist citizens emerged to create and develop HealthShare, Inc., a not-for-profit, member-owned organization designed to support health and well-being for persons of all ages and the dignity of elders who desire to remain in their homes. Since its incorporation in late 1997, HealthShare has attracted 150 members, who pay a membership fee and, in return, receive significant discounts on healthrelated products and services in the community; participate in educational
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programs on wellness and alternative/complementary medicine; and volunteer (or receive volunteers) in the home. These HealthShare volunteers provide such supports as friendly visiting, light housework, grocery and medicine delivery, health advocacy, and other “good samaritan” services. The volunteer program is being developed in collaboration with community faith organizations and reaches beyond the limits of the health cooperative membership. The HealthShare Board of Directors is also organizing an effort to explore the development of a low-cost wellness clinic, emphasizing alternative and complementary medicine in collaboration with the Indiana University School of Nursing. New Housing Options in Core Neighborhoods Perhaps the most ambitious project involves the development of new housing for elders in older neighborhoods. This contrasts with current industry trends that continue to marginalize elders in congregate housing projects on the fringes of communities where land is less expensive and zoning less restrictive. Employing Evergreen Design principles and current thinking about urban revitalization (Chiuini, 1997; Mendelsohn, 1997), we are moving to develop a 51-unit, mixed-use, affordable housing project in the intergenerational environment of an urban park. This project involves the historic restoration of an existing building as well as new construction. Ground floor retail/service elements will provide supportive amenities to elder residents living above. An innovative shared residence for seven elders with dementia will be incorporated into the project. This $6.4 million project will combine local public sources of financing, foundation funding and private investment through the Federal Low Income Housing Tax Credit Program. If successfully financed, the project will break ground in 2000. (See Fig 9.1, artist’s rendering of the project.) A second model project, just under way, will involve a collaboration between the City Neighborhood Development Department and Bloomington Restorations, Inc., a local historic preservation group. Based on input provided in design focus groups, we are developing schematics for an “infill elder cottage.” We define an elder cottage as a small house (900–1,100 square feet) that will fit on empty lots in existing neighborhoods. The cottage will be constructed as both accessible and architecturally compatible with the neighborhood design fabric (see Figures 9.2 and 9.3). In Bloomington, common styles include bungalow and arts and crafts styles typical of the first twenty years of the century. The first prototype will be sold with a light maintenance contract held by HealthShare, Inc., and fulfilled through volunteer labor provided through the membership. A second prototype will occupy a corner lot and feature either a secondary caregiver unit or be built as a duplex unit as a means to maintain affordability, while still fitting within acceptable neighborhood design and density standards.
Figure 9.1 Evergreen Institute on Elderly Environments: Washington Street Housing
Prepared by Kirkwood Design Studio.
Figure 9.2 Infill Housing Prototype
148 Prepared by Kirkwood Design Studio.
149 Prepared by Kirkwood Design Studio.
Figure 9.3 Infill Housing Prototype
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SUMMARY AND CONCLUSIONS When considered overall, our community development results have been mixed. We take some satisfaction in knowing that programs initiated as pilots are now becoming institutionalized with ongoing support through a variety of local private and public funding sources and we are confident of success with new housing development. As for issues of home modification, reverse mortgages, and home sharing, it is interesting, but perhaps not surprising, that some of the same core values that account for elders’ strong attachment to place contradict the very changes that might indeed prevent institutionalization. In the language of this book, what is a strength in one respect is an impediment in another. Accepting home modifications may require some sacrifices regarding the personal aesthetics of the home. It involves the acceptance of a stranger into the house and a period of instability, along with new expenditures from a limited budget. Taking a reverse mortgage may mean forgoing the ideal of providing a legacy to one’s children. Sharing one’s home with another may entail a loss of privacy and a change of routine. Hence, it is no small issue for an elder to make adaptations within the home, even if, on the face of it, it may forestall the dreaded fate of nursing home placement. It is but one more manifestation of the “horns of the dilemma” of empowerment. As community organizers we push for change while always finding that people take change on their own terms, as it should be. A Paradigm for Collaborative Community Development In searching for an appropriate visual rendering and metaphor for the community development model discussed heretofore, I have considered a variety of boxes, fishbone diagrams, charts, graphs and trees. The process is somewhat difficult to model since, while it has a definite starting point, it should, in some sense, be nonlinear. Moreover, the model has several dimensions, making it difficult to visualize in space. I have come to think of the process as a movement of ideas through a sequence of filters (see Figure 9.4). While each filter could be seen as a kind of impediment, in fact, it serves to concentrate and enhance energy and reduce noise along the way. The starting point, the ground substance, is no less than critical theory itself, being, in this instance, the particular identity we have posed between dwelling and being—our sense of what it means to be “at home in the world,” as the anthropologist Michael Jackson calls it (1995). This consciously avowed premise becomes the essential starting point for our research and infuses the process of idea making and program development all along the way. Indeed, a return to critical theory and a view of how elders dwell often help explain why some of our well-intentioned program efforts may fall short of our grand expectations.
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Figure 9.4 A Paradigm for Collaborative Community Development: The Evergreen Experience
A second filter is constituted by a set of core values that inform both research and community planning. These core values include: • Inclusion: Both research and planning shall be highly participative, democratic, and collaborative, valuing local knowledge over expert opinion. • A mosaic of perspectives: Research shall be multidisciplinary and range across the sciences and the humanities (Gubrium, 1991; Moody, 1988). • Engagement: Research and planning should tap creativity and alternative learning styles. It should be fun and engaging for participants and mobilize community energy. • Community building: Research and planning should, in and of themselves, build community. • Place-based activism: Participants in community research and planning efforts should be motivated to be involved by a sense of place and the goal of stewardship, not by an abstract cause.
The third filter gathers the diversity of voices into a chorus by identifying resonant themes and characterizing them in a widely legible and compelling way. The Evergreen Design Principles emerged, for us, at this point. While many voices participate, each should see its contribution mirrored and feel a sense of ownership in the common product. The fourth filter transforms literally voice into vision. A future for the built and natural environment is conceptualized as design professionals render ideas into visual form, whether they are schematic designs or diagrams of proposed programs or services. The fifth filter reveals impediments, yes, but more importantly it reveals
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community-based assets that have the potential for moving visions to action. Assets may be financial, but more commonly are intangibles such as social capital, networks of support, community voluntarism, or widespread mobilization of human resources. In fact, it is the intangible supports that will, inevitably, lead to the development of financial capital necessary to carry actions forward. This process, when done well, is time consuming. It requires a constancy of values and a bias toward process over content. It requires strong faith in the ability of informed citizens to build community and nurture one another. While experts and professionals may play important facilitative roles, the planning process itself is a bottom-up, not a top-down venture. This requires some revision of traditional planning models that rely heavily on professional expertise and configure the role of citizen involvement only in terms of advisory bodies and public hearings, which, as Daniel Kemmis argues, usually involve more listening than hearing (1990). In Moody’s terms, the process most closely approximates the “participative” model of values associated with societal roles of elderly people. Indeed, the model transcends particular notions about how elders can be empowered and suggests that the process should work across the life span. Young persons should be empowered to offer assistance in helping to create healthy elder environments, just as elders should be expected to assist in building community for all ages. In short, when people move from cause-based to place-based activism, stronger age-integrated communities will emerge. NOTES 1. For more information about the Evergreen Project, contact the author, Philip B. Stafford, Ph.D., Director of the Evergreen Institute on Elder Environments, Inc., 501 North Morton, Suite 210, Bloomington, IN, 47404. (812) 856–5526, FAX (812) 855–4506, or e-mail
[email protected]. Web site address: http://www. indiana.edu/˜evrgreen/institute.html. 2. In Great Britain, it seems that staying put programs are part of the ongoing system of support for elders. In Bloomington, the phrase staying put is felicitous, owing to its use by our local author, Scott Russell Sanders, who writes eloquently about the notion of place and home. 3. A reverse mortgage, sometimes called a reverse equity mortgage (REM) or home conversion equity mortgage (HCEM) is a financial product purchased by elders that enables them to extract monetary value from a house’s equity basis and defer repayment on the amount, with interest, when the home is no longer occupied by the individual. AARP has produced an excellent videotape on the subject for viewing by lay audiences, Reverse Mortgage Choices. 1996. AARP Home Equity Information Center, 601 E. Street, NW, Washington, DC, 20049.
PART IV
CLIENT EMPOWERMENT IN LONG-TERM CARE
10
The Rights of Elderly People in a Nursing Home—A Little Creativity, a Lot of Respect, a Taste for Adventure, and an Allergy to Bureaucracy Germain Harvey Translated by James Lawler
CONTEXT We live in a society of rights. For most of us, these rights are taken for granted, and are inherent parts of our quality of life. We don’t pay much attention to them unless they are threatened or violated. Then we mobilize all our energy to defend them. However, there is a time when this energy is no longer available, a time when these rights can easily be infringed, even with the best of intentions. This time is when we become very old. Our institutions—which we call nursing homes, retirement homes, seniors’ residences, long-term care facilities—are home to elderly people who need care. But what about respect for their rights, values and lifestyles? By their very nature, institutions have a strong propensity to multiply the impediments to their residents’ empowerment. Be it for practical reasons in delivery of services, biased perception of needs, lack of information, inflexibility, or an erroneous conception of their role, they directly hinder the residents’ ability to act for themselves (see the section in Chapter 2, titled “Provider Based Limits”). This is exacerbated by the fact that residents of an institution have often lost their capacity or will to exercise their rights. (see the section in Chapter 2, called “Client Based Limits”). Furthermore, society in general, and health care providers in particular, find it difficult to accept the risks inherent in very old people becoming more empowered (see the section in Chapter 2, titled “Societal Based Limits”). Re´ sidence Yvon-Brunet is a public institution in Montreal, Canada, in
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which nearly 200 elderly people live, all of whom have lost some degree of autonomy. Over 15 years, we have created and developed a unique living environment approach for our residents. This unique experience has enabled us to refocus our institution and base it on respect for the rights of people who no longer have the energy to defend them—namely, our residents, whose average age is 85 years. FREEDOM AND INSTITUTIONS Every day of our lives we exercise our free will without paying much attention to it. Even though we may feel tied down by work and family responsibilities, we make decisions every day on a multitude of details that comprise our freedom of thought and action related to these responsibilities. But imagine for a moment that you become a prisoner. Imagine that someone else, without consulting you, decides when you can take a bath, what you are going to eat, with whom you can pass the time. Imagine further that they enter your room without warning, move around your personal possessions, and eliminate part of your wardrobe without your consent. Imagine that they insist on administering medications and drugs you don’t want. They force you to walk when you simply want to remain sitting, or strap you in a chair because you tend to wobble slightly when standing. To make you feel even more useless, under the pretext of “caring” for you, your jailers have you live in a “cell” perfectly identical to that of everyone else. You are prevented from being overly exposed to events in the external world around you. They then multiply the padlocks and guards to prevent “accidents,” they tell you! After a few months of this “treatment,” you find yourself a little confused, looking haggard, feeling almost demented. You hide yourself in your “cell,” and spend most of your waking time in bed, dreaming of a time when this nightmare will end. This is not an exaggeration. These are often the living conditions imposed on elderly people in numerous nursing homes and similar institutions, under the guise that it is for their own benefit. However, nothing is forcing us to make elderly people undergo such treatment. Only old ways of doing things and apathy impede us from seeing even the possibility of change. Given the above observations, the staff at Yvon-Brunet felt the need to give the residents a central role, put them unequivocally at the heart of life in our nursing home, and, without reservation, acquaint them with their rights and their ability to exercise them. RISK AND INSTITUTIONS There is no freedom without risk. If there is one taboo subject in our institutions, it is the notion of risk. Yet the absence of discussion and, above all, consensus on (1) an acceptable level of risk and (2) the inevitable balance
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we seek between freedom and safety in our institutions has had serious effects on the quality of life of nursing home residents. Example: Mrs. Tremblay (fictional name) came to Re´ sidence Yvon-Brunet a few years ago. She is 92 years of age, and suffers from arteriosclerosis. As a result, her bones are very fragile. She walks with great difficulty, but manages to do so with a walker. Upon her arrival, the doctor prescribed a wheelchair because he knew that a fall would have serious consequences, resulting in her probably no longer being able to walk again. After receiving the prescription, the unit nurse met with Mrs. Tremblay to tell her that from then on she would have to move around using a wheelchair— for her own safety. Furthermore, her family came to see the nurse that very morning to clearly indicate that it had no longer been safe for their mother to remain at home, and this is why they had convinced her to move into a nursing home. They therefore expected her to be kept “safe and sound,” and would take all the necessary steps at their disposal if they found her safety had been compromised in our institution. Mrs. Tremblay, a very lucid woman, totally aware of the nature of and risks associated with her disease, decided—in spite of all this—to continue to walk, and did not want a wheelchair.
How many nursing homes would permit Mrs. Tremblay to continue to move around without a wheelchair? Everyone involved in this situation had good intentions. But if we look at the subtext, other motives become clear— fear of pressure or lawsuits from the family, fear of being criticized by peers, fear of not being supported by the boss and employer, guilt. What weight does this woman’s opinion have when confronted with the enormous pressure facing her from family and staff? We know very well that at her age, she does not have enough energy to defend her point of view for very long, so the outcome seems obvious. To allow the choices of our residents to supersede any other consideration, our board of directors, doctors, nurses and all other staff agreed on an acceptable level of risk, essentially based on that which exists in the society at large, neither more nor less. The enormous advantage of this was that the weight of a decision and all the risks it entails would no longer rest on the shoulders of one person in authority, such as the doctor, head nurse, staff nurse, or the like. Specific decisions would therefore be made within the context of the general risks that everyone has discussed, which have been verified by legal advisors, and which conform to those found in society at large. The result is that respect for a resident’s “right to choose” is no longer threatened by the potential risks involved, perceived or real, assessed alone by the staff member present at the decision-making moment. Re´ sidence Yvon-Brunet has also developed an approach—the main elements of which are described in the pages that follow—based on respect for the freedom of each resident, a value given priority over all other considerations. This value
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was chosen because, by their very nature, old age homes and similar institutions have a voracious tendency to attack it first. VERY OLD AGE IS A STAGE IN THE CYCLE OF LIFE We start with the principle that very old age, what we see in our nursing homes, is a stage in life, not a disease. Of all the conceptions of aging, retaining one that views it as a stage in human development means opting for life. It is extremely sad to define people in the third and fourth stages of life as those “waiting to die.” Focusing on the road that remains to be traveled, even if it is shorter, means offering elderly people good, even very good times. Calling on older people to benefit from the opportunities offered by a living environment, organized and based on what they themselves want, means giving them the chance to still experience a satisfying, gratifying and fulfilling life. THE INSTITUTIONS—A LIVING ENVIRONMENT Treating very old age as a normal stage in the development of a human being leads us away from viewing an institution as a temporary, curative environment such as that found in a hospital. First and foremost, it means constantly creating an environment in which people come to live, whatever their health status. It follows that: 1. A nursing home is place to live, a “home,” not a hospital. 2. The primary goal of an institution for very elderly people should be to maintain interest in life, not just to maintain life.
Therefore, Re´ sidence Yvon-Brunet has transformed itself from a hospital into a place to live. As much as possible, life here resembles life at home and life in society—with the same rights and respect for personal habits, values and traditions that the residents enjoyed before their admission. To arrive at this point, major changes had to be made to replace the hospital culture with a more human-centered, less invasive one. Among these changes was the Living Environment Advisor (residents’ advocate). In the months following the opening of the nursing home in 1983, it became obvious to us that we had to find a better way of understanding the needs of the residents. The difficulty in even identifying these needs was due to a number of factors: 1. A wide gap usually exists between the age of service providers ( 40 years) and the residents ( 85 years). This leads to a narrow, rather biased perception of needs, often completely at odds with the real ones of residents. This can be illustrated by the following example, representative of thousands of similar situations:
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Re´ sidence Yvon-Brunet is located close to downtown Montreal. In front is a busy boulevard; behind are magnificent grounds with lawns and flower beds. One year we had some funds left in our budget, so we decided to construct a patio area that would allow our residents to make more use of the grounds and gardens, and benefit from the beauty of nature. Plans were drawn up, taking into account the physical limitations of our residents. The patio area would be built near the rear entrance, making it easily accessible to the gardens. By chance we overheard some residents discussing it. “What a funny idea—building a patio area in the back. At home, we used to always sit out front, to watch the people passing by—it’s full of life. Our back yard was used to store the garbage!” In general, the management and professionals at Yvon-Brunet live in the suburbs, where people usually make patios and decks in the back yard precisely because there is less noise and traffic! 2. The residents, born in the 1910s, are a generation for whom the reflex to protect and assert one’s rights, form groups to defend them, and above all question and criticize authority, is simply not as evolved as it is today. 3. One of the characteristics of very old age is the low level of energy available. What energy there is, is mainly used to survive the next 24 hours. There is not much left over to make requests that risk—rightly or wrongly—antagonizing the staff or administration. When residents used to complain at Yvon-Brunet, it was generally in confidence to their children, taking great care to explain that they did not want anyone to know. 4. The medical model of very old age, and concentration on only the physical needs that flow from it, was impeding a more comprehensive vision of the needs of residents.
We therefore found ourselves in a situation, where, on the one hand, we had residents who were not easily expressing their needs and on the other, we were dealing with a very organized institution, with its rules and regulations, professional corporations, unions, managers and all the energy it requires at its disposal. To prevent the latter from devouring the former, we created a new position—the residents’ advocate. This person reports directly to the Director General, and is called the Living Environment Advisor. The first three tasks in the job description of the living environment advisor summarize his or her role (see Appendix 1 for a complete job description): 1. The living environment advisor ensures the quality of life and living environment of the residents and creates and implements the necessary mechanisms to ensure the primacy of the residents’ rights over the routines, interests, and concerns of the organization. 2. The residents’ advocate ensures that the rights and interests of the residents are represented at all levels of decision making, in all the systems, policies, procedures, and services put in place by the organization.
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3. The advocate ensures that the contrast between a resident’s life before and after admission is reduced to a minimum, taking into account certain constraints.
If we are not vigilant, if we easily surrender to the false truism that “silence implies consent,” elderly people in a nursing home will have no line of communication through which they can make their concerns understood by the administration. Respect for very old age implies a kind of “reverse” attitude to needs assessment. This requires going beyond perceived needs, to welcome, indeed provoke, questions and protest. In the Yvon-Brunet model of assisted living the residents’ advocate, essentially an ombudsman, embodies and puts into practice the major principles that should characterize interventions with people in the fourth stage of life. Indeed, the living environment advisor’s work has led to a new understanding of this stage of life, which constitutes a significant asset in facing complex problems that will continue to crop up as the proportion of our elderly population increases in the coming decades. As far as qualifications are concerned, the advisor should be gifted with strong synthesizing skills and be proficient at establishing relationships of trust with the residents. She can thus clearly identify their real needs, and close the gap between these and the services provided by the institution. She therefore acts as a kind of official voice and advocate of the residents, who no longer have the energy to fight to have their rights respected. It suffices to say that after 15 years, this position has resulted in literally thousands of changes in the nature and quality of services provided at our nursing home. Because of her interventions, priorities have had to be revised and services that we thought were essential were reduced or simply abolished, and new ones implemented to respond to the requests of the residents. A second major change was in the view of very old age as seen by professionals with various educational backgrounds. The people who traditionally work in our institutions for elderly people have a medical or nursing background. The key position of head nurse is a good example. However, at Yvon-Brunet, to ensure that the perception of residents’ needs would not be limited exclusively to health care, we replaced the position of head nurse with a more comprehensive one, titled unit head. This person may have an educational background in psychology, social work, special education, occupational therapy, physical education or indeed nursing. These various backgrounds have resulted in a much greater variety of responses to residents’ needs. In addition, there is less risk that psychosocial needs go unnoticed, and they have become as important as the physical ones. The following illustrates this. One day, we asked two unit heads, with different educational backgrounds, to give us a one-page list of needs they deemed to be priorities for their respective residents.
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The result amazed us. Though the residents were virtually identical, living in the same nursing home, and the lists had been drawn up on the same date, none of the needs judged to be priorities by one unit head appeared on the list of the other. There was no duplication whatsoever.
This shows to what degree a variety of educational backgrounds can lead to a greater scope in the perception of needs. And, indeed, this variety characterizes the department and unit heads who exercise direct authority over the staff at Yvon-Brunet. All of them have the same role—to ensure the quality of life of their residents. Certainly their educational background may “color” the way they do their job, but they do not directly exercise their profession as a unit head. This differs fundamentally from being a member of the multidisciplinary teams that are so familiar in our institutions, because these so-called “teams” are generally consultative. Furthermore, each team member in the traditional setup has a kind of veto power over anything to do with his specialty. He can use the veto at any time, and it is a virtual guarantee that other team members will defer to him, the specialist, when differences in opinion arise. This is not the case with the unit and department heads at Yvon-Brunet. They have direct authority, and are all on an equal footing. Therefore, they do not have a veto that they can fall back on: ideas stemming from their field of expertise are challenged and confronted by those of other unit heads. They are not constrained by their fields of training. This approach has proven itself many times over. We have a much richer, more diversified range of solutions for the specific problems we encounter. This obviously requires an open mind, a departure from tradition. It is an approach that perhaps threatens the comfort zone of “corporate style” administrators and managers. A third major change was in developing a homelike interior design—the complete opposite of a hospital. If very old age is a stage in life, why do so many of our nursing homes resemble hospitals? Who would like to live in a hospital? Living in a hospital means receiving a multitude of messages, all day every day, through words, symbols and interior design, related to trauma and disease. The interior of Yvon-Brunet was therefore re-examined, and redesigned to resemble that of a home. All the hospital “symbols,” such as nursing stations and uniforms, were removed. 1. The room—inviolably private. The primary characteristic of a living environment, the most important, is one’s room. Personal space is inviolable. In the larger society, no one can enter one’s home without authorization. But in a nursing home, one’s room—one’s personal space—is rarely respected by people. At Yvon-Brunet, we adopted a straightforward policy with regard to this: A resident’s room is a private space over which she has total mastery. Only in cases of force majeur or acts of God, such as a fire,
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do we allow employees to go into a room without the express authorization of the resident. Isn’t this what we would expect in our own private lives? There are no visiting hours at Yvon-Brunet. Why should there be? Don’t we receive guests when we want to in our own home? A resident can lock his door and forbid access to his room to whomever he wants. Staff must always knock on a resident’s door and wait for a response before entering. They must also notify a resident before cleaning his room. A resident can decorate her room and arrange her furniture in whatever fashion pleases her. The policy at Yvon-Brunet will always be the same: Current practices in society are accepted as current practices in our institution. 2. “Familiar” surroundings—spaces, clothing and appliances. At YvonBrunet, nursing stations have been replaced by living rooms, and uniforms by everyday clothing. Vibrant colors have replaced the beige, drab green and pale yellow of hospitals. Kitchenettes and home appliances have replaced industrial equipment (the latter may be more durable, but colder, and more impersonal). 3. A public place in the heart of the residence—“Main Street” (see Appendix 2). Residents in a nursing home have the right to participate and remain in contact with the outside world. However, their health status often curtails the exercising of this right. This is why we decided to bring the outside world in. Since time immemorial, commerce has been an essential activity, a means of not only exchanging goods, but of communication. In villages and towns, public places slowly establish themselves, fulfilling the need for business and exchange. Commercial areas create public life. They become meeting places, where a sense of community is built and maintained. “Main Street” was designed with just this purpose in mind. It was established over a number of years by redesigning the space in the basement level of our nursing home. Directly accessible by elevator, it is at the residents’ doorstep, so to speak, since they cannot go very far for very long periods of time. A veritable public space, Main Street is bright and colorful. With its variety of storefronts, signs and posters, it recreates the atmosphere of a small commercial artery. For elderly people, children are an important part of their personal history and the legacy they will leave behind them. The relationship between grandparents and children has always been marked by warmth and gentleness, by ease and serenity, which neither experience with anyone else. It was with this in mind that we made the first component of Main Street a fully functioning community daycare center. The daily presence of children in the heart of Yvon-Brunet really triggered the residents’ interest in the new concept of a “Main Street.” Next came the bakery and the kitchen: The aromas coming from the family-type kitchen plunge the residents into an atmosphere that reminds them of their youth. Decorated in traditional style, it helps residents recall
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their traditions of seasonal cookery, such as making preserves in the autumn and baking before Christmas. A cafe´ , convenience store, plant nursery, hairdressing salon, tavern and clothing boutique were added. Then came a library, travel agency and bank. One end of Main Street opens onto a rather large space used for dances, concerts, bingo games and church services. The design and decoration of the “street” make it a lively, colorful place, which helps keep elderly residents rooted in everyday life. Over the years, it has become a real neighborhood street, always full of life, where children play beside very elderly people, where the men get together for a beer, where the women dress up and meet. With the decor of a mini–shopping mall, Main Street motivates the residents to get out and move around. It fosters social interaction, acting as an immense magnet that invites residents to leave their rooms and keeps them from retreating into themselves, an unfortunate situation often accelerated by admission to a nursing home. 4. In the line of fire—institutional constraints, bureaucracy, norms and regulations. In the early 1980s at Yvon-Brunet, all the constraints then thought proper to the institution were reviewed in light of the following simple question: If the resident were living at home, would this constraint exist? If the question generated a negative response, every means at our disposal was used to eliminate, or if this was impossible, circumvent or reduce the constraint to a minimum. A great number of bureaucratic constraints, rules and regulations had to be revised. Since Yvon-Brunet is a public institution and, therefore, highly regulated, the impact of these changes would be even greater. If a resident is really in her own home at Yvon-Brunet, why impose regulations, behaviors or lifestyles that differ from those we normally see in society? A CHARTER OF RIGHTS AND FREEDOMS— ENSURING THE PRIMACY OF THE RIGHTS OF VERY ELDERLY PEOPLE The whole process culminated in the creation of a Charter of Rights and Freedoms of the Elderly, which proclaims the values extolled by the institution, and guarantees that the residents have the same rights as all other citizens (see Appendices 3 and 4). Posted in the entrance, it enshrines 31 rights, all susceptible to being violated in any institution. They are the cornerstone of our approach to life at Re´ sidence Yvon-Brunet. In force since 1984, the charter acts as an ideal to which staff and management aspire. It is also a powerful motivator, priming us to continually invent new ways of conforming to its high standards. Without the charter, we might become too comfortable, and be tempted by easy solutions requiring much less energy. It therefore acts as a kind of guarantee that the rights enshrined in it—those most easily infringed in an institu-
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tion—will be protected. Specifically adapted to life in an institution, it constitutes a complement to existing charters of rights. For example, the right to vote is not included because, in general, it is not threatened in a nursing home, whereas the right to privacy, which is, figures prominently. Hence the charter directly addresses the rights most often transgressed in an institution. The 31 rights can be subsumed under 5 major rights: 1. The right to be informed, and freedom of expression. This responds to the residents’ need to be informed about anything that affects them personally, and about what is happening in the residence in general. First on the list, this major right reverses the traditional power ratio between the beneficiaries, who don’t know what’s going on, and the staff, who do. It obliges the staff to recognize the limits of assisted living and discuss things with the residents. This has serious consequences. For example, no decision on the life, health, privacy, relationships or property of a resident is made without the express consent of the person involved. 2. The right to privacy. This right is revolutionary in an institution, where deeply rooted work habits show little concern for the private lives of residents. Because of it, the notion of living “in your own home” has become a reality at YvonBrunet. The residents can entertain whoever they want, whenever they want, without seeking permission. Being “at home” means being free to make your own choices. 3. The right to respect and dignity. This restores elderly people to the rightful place they merit in society, notwithstanding their health status, attitude or incapacities. It obliges staff to change their behaviors in their relationships with elderly people and treat them with deference, shunning familiarity, infantilism and personal prejudices. 4. The right to continuity. This right returns to elderly people the security and stability of which institutionalization has deprived them. It challenges the institution to find imaginative solutions rather than to surrender to the easiest. It obliges administrators to come closer to fulfilling the real needs of the residents. For example, the work schedule of employees at Yvon-Brunet is set up in such a way that each elderly resident is, as far as possible, always seen and assisted by the same people, thereby ensuring a sense of continuity. 5. The right to responsibility and participation. This gives real power to the elderly residents—the right to participate in the organization and administration of the nursing home. The organizational structure must allow the residents to truly play an active role. At Yvon-Brunet, the residents feel they are really involved in the running of the home.
CONCLUSION As indicated at the beginning of this chapter, institutions have a natural tendency to multiply the impediments to their residents’ empowerment. Adopting a less medical conception of very old age; developing a whole-
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person, living milieu approach; creating the position of living environment advisor (to represent and advocate for residents’ interests); ensuring that unit heads come from a variety of disciplines (to develop a broader vision of residents’ needs); and implementing a Charter of Rights and Freedoms of the Elderly—these are some means, among others, of reducing the invasive nature of an institution. Our experience has also shown us that it is indeed possible to imbue management and personnel with a more precise understanding of residents’ needs. It has shown that we can change the way we train the key people who respond to these needs, thereby facilitating their acceptance of a range of risks that allow residents to fully exercise the rights to which they, like everyone in society, are entitled (see “Matrix Showing Impediments to Empowerment” in Chapter 2). Furthermore, pursuing such an ideal results in staff seeking and implementing imaginative ways of compensating for the mental and physical limits associated with very old age. It helps families respect their parents’ need for autonomy, leads to greater self-esteem in the residents, and uses the limited financial resources of the institution in such a way as to encourage a greater degree of empowerment. Given the serious limitations of residents, one of the fundamental objectives of Yvon-Brunet has been to limit, as much as possible, the obstacles to residents’ empowerment, so they can enjoy virtually the same degree of freedom they had before their admission (see the negative definition of empowerment given by Neill [see Jones, 1998] and a discussion of this topic at the end of Chapter 1). Very elderly people admitted to a nursing home are at a stage in their lives where their living environment is of prime importance. It can compensate for their physical inadequacies, thereby helping them conserve their already low reserves of energy. Institutional constraints weigh heavily on achieving the quality of life to which residents have a right, but no longer have the strength to lay claim to. It is the responsibility of the institution and its personnel to create a living environment that goes beyond accommodating mere physical deficiencies, that overcomes institutional constraints and allows its residents to lead full lives in the last stage of it, namely very old age. We hope that our experience over the past 15 years at Re´ sidence YvonBrunet can serve to: • Remind institutions that their elderly residents are full citizens who enjoy the same rights as other people. • Remind institutions that policies and procedures, rules and regulations, norms and collective agreements are but tools and/or constraints, and are not their raison d’eˆtre. • Remind health administrators and employees that to defend an ideal, namely the
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fundamental right to individual freedom, is an extraordinary adventure, and they are among those who have a unique opportunity to lead the way. • Remind health administrators and employees that this ideal, even if it requires additional effort, gives meaning and value to their work that no working condition can ever replace. • Remind all those who work in the health sector that they themselves (and their own parents) are aging, and that their rights need to be maintained, if only because, some day, they may be admitted to an institution and no longer have the strength to defend those rights. • Remind citizens that we judge the progress of a society by the way it treats its most vulnerable, and that therefore there should not be two sets of rights for elderly people, based on whether they live at home or in an institution, but one set of rights for all.
APPENDIX 1: ROLE DESCRIPTION OF LIVING ENVIRONMENT ADVISOR POSITION: LIVING ENVIRONMENT ADVISOR IMMEDIATE SUPERIOR: DIRECTOR GENERAL
SUMMARY The Living Environment Advisor ensures the quality of life and living environment of the residents, and creates and implements the necessary mechanisms to ensure the primacy of the rights of residents over those of the organization.
SPECIFIC MANAGEMENT RESPONSIBILITIES 1. Ensures that the rights and interests of the residents are represented at all levels of decision making in all the systems, policies, procedures and services put into place by the organization. 2. Ensures that the contrast between a resident’s life before and after admission is reduced to a minimum, taking into account certain constraints. 3. Analyzes the needs of residents and ensures, as much as possible, in collaboration with other personnel, that they are fulfilled. 4. Ensures that the nursing home respects the autonomy, creativity, initiative and personal growth of the residents. 5. Ensures the participation and collaboration of all personnel in the goal of targeting the best possible quality of life for the residents. 6. Ensures the smooth functioning of the Residents’ Committee, and the optimum participation of the residents in the running of the nursing home. 7. Creates and sees to the smooth functioning of the Relatives’ Committee or association, and involves them in the life of the nursing home. 8. Ensures the optimum accessibility of the nursing home to the local population. 9. Ensures that relations with the residents’ families are maintained. 10. In concert with the management of the nursing home, puts into place the required mechanisms to foster healthy social interaction and group life. 11. Contributes to defining the objectives of the organization. 12. Keeps informed of the latest research in gerontology, and ensures distribution of these studies.
APPENDIX 2: COMPLETE (ILLUSTRATED) CHARTER OF RIGHTS AND FREEDOMS OF ELDERLY PEOPLE
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APPENDIX 3: EXAMPLES OF HOW A RIGHT IS RESPECTED AT YVON-BRUNET Sample right taken from the Charter of Rights and Freedoms of the Elderly1 Right 7, which falls under the major right to privacy. What follows describes situations observed, and Yvon-Brunet’s responses to these types of situations in light of the right to privacy. The elderly person has the right to feel at Home in the Re´ sidence Yvon-Brunet, and to enjoy the benefit of an inviolable, personal space. A resident notices that someone has moved a decoration in her room. “They came into my home without even asking,” she says. “When I’m asleep at night, anyone can enter my room.” Someone goes into a room. A resident there is undressing. The resident becomes really angry. “In my home it’s a custom to knock before you enter. I never undress in public.” “How can you expect me to feel at home when I can’t even lock my door!” “I’m afraid of sleeping with my door closed because there’s no air and, at the same time, I’m afraid of leaving it open.” When one of her possessions appears to be missing or moved, a certain resident often accuses a staff member or another resident of having stolen it. “I’m sure someone stole it.” “They can enter my room when I’m not there.” “Wake up, it’s breakfast time. The dining room will be closing in thirty minutes.” “I want to sleep in in the morning. I don’t want them to wake me up. I can make my own breakfast, toast or whatever, when I feel like it.” Like everyone else, the residents don’t want anyone but family or close friends to enter their room without warning. They have said this in a thousand different ways. This is why at Re´ sidence Yvon-Brunet, the elderly residents can: • Lock their door, and be the only person who has a key (the general pass key is used only in case of emergency.) • Leave their door slightly ajar with a special door-chain designed for the Re´ sidence. • Let only the people they want to enter their room. • Refuse to answer when staff knock on their door. • Demand to be present when their room is being cleaned or maintenance is there.
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Only when a resident really feels at home, can he or she really trust that the residence is their home.
NOTE 1. Extract from a 44-page booklet, which describes each of the 31 rights using this same format. This booklet is available upon request, in English or French, from: Re´ sidence Yvon-Brunet, 6250 Avenue Newman Montreal, Quebec Canada H4E 4K4. e-mail:
[email protected]
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Bringing Managed Health Care Home: A New Service Strategy for People with Chronic Illnesses and Disabilities Dennis L. Kodner, Meg Sherlock, and Jonathan Shankman
Almost 100 million Americans living in the community have one or more chronic conditions, and 39% have partial or total limitations in their major activities. As we enter the 21st century, there will be far greater numbers of people affected by chronic conditions (Robert Wood Johnson Foundation, 1996). The United States is likely to see a 40% increase in the number of people affected by activity limitations due to chronic conditions and a doubling in the number of elderly people needing long-term care, along with a proportionate drop in the number of potential caregivers (Institute for Health and Aging, 1996). Whether old or young, people with chronic, disabling conditions are a particularly vulnerable sector of the population. In addition to complicated health and social needs that often demand a mix of acute and long-term care services, their network of social support is often overextended and at risk of breaking down. For patients and families, providers and payers, the nature of chronic disease itself presents a set of difficult challenges: It is incurable and unpredictable in its progression, complex and with frequent comorbidities, and intrusive and costly in the course of daily life (Kodner, 1995). On the personal side, chronic illness is managed by people primarily at home. It is necessary for patients and families to carry out treatment regiments, prevent and manage medical crises, adjust to changes as the condition progresses and cope with social and emotional issues caused by intensive needs and reduced independence. On the professional side, it is important to control symptoms, monitor patients closely to avoid medical crises, respond rapidly
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to acute flare-ups and coordinate services through periods of maintenance, rehabilitation and transition. A partnership between patients and providers is critical. The ability of consumers and providers to deal with these challenges is compounded by numerous system shortcomings, particularly those found in the United States. The delivery of acute and long-term care is often fragmented and uncoordinated (Kodner, 1995). Services are the responsibility of many professionals, agencies and jurisdictions. The various components of the health care system, whether based in the home, the community, or an outpatient or institutional setting, work in parallel with separate funding and budgets and distinctly different clinical responsibilities and approaches (Brickner et al., 1987). The absence of a single institution with broad clinical and financial responsibility and accountability creates overlaps, leaves important needs unmet, and is partly responsible for unnecessary hospitalizations and institutionalization as well as less than optimum quality of care. Moreover, the economic burden of providing chronic care is enormous. This is especially the case in the United States, where a patchwork of government financing programs and private insurance are inadequate to cover these catastrophic expenses, and individuals are forced to pauperize themselves to get needed help (Weiner et al., 1994). NEW MANAGED CARE MODELS Despite global differences in the funding, organization and delivery of health and social services, countries nonetheless share a common interest in better models of integrating care for people with chronic disabling conditions, including elderly people. The United States, although lacking a universal health system, has led in experimentation with such models for more than 25 years. The evolution of innovative programs such as the Social Health Maintenance Organization (Social HMO) (Saucier, 1995), the Program of All-inclusive Care of the Elderly (PACE) (ibid.), and the HomeFirst program discussed in this chapter has taken place against the backdrop of a paradigm shift in the American health system. Emphasis has shifted from traditional fee for service or pay-as-you-go care to managed care. While the concept of managed care has sprouted many meanings in the United States and lately in other countries, it is used here to specifically denote an organized health system in which access to care for an enrolled population is controlled by physician gatekeepers and services are paid for on a capitated basis (Robinson and Steiner, 1998). Today, over 90 million Americans are members of managed care organizations (MCO) of one kind or another; this includes more than 6 million elderly beneficiaries of Medicare (the federal health insurance program for elderly and disabled people) (MedPAC, 1998).
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The oldest form of managed care, Health Maintenance Organizations (HMOs), have the following characteristics: • Comprehensive package of services; • Defined, primary care-based delivery system; • Defined population; • Clinical responsibility for the entire package of services in all settings; and, • Prepayment based on capitation with financial responsibility for the entire package of services.
For the most part, HMOs and other MCOs operating in the United States have been designed to meet the broad preventive and acute-care needs of children and working-age adults. With rare exceptions (as in the case of the Social HMO, PACE and HomeFirst), even programs that specifically serve elderly people emphasize wellness and medical care rather than supportive services for chronic conditions and long-term care (Wagner et al., 1996). With providers positioned as “gatekeepers” to control access to outpatient and in-hospital specialty services, there is narrow scope for consumer involvement in coping with the complex needs and circumstances that affect independent living and quality of life. There is widespread belief that managed care offers the potential of better coordinated and more cost-effective care for people at all levels of health and ability (Kane, 1996). However, there is also growing recognition of the need to strengthen consumers’ role in managed care for people with chronic illnesses and physical disabilities in order to ensure that their special needs and desires related to personal independence are suitably accommodated (Newell, 1997). It is within both of these contexts that the HomeFirst model was developed. BRINGING MANAGED HEALTH CARE HOME HomeFirst is a new model of home-centered managed health care known as the Chronic Care Organization (CCO). The CCO has several goals: • Enhance the appropriateness, continuity, quality and cost-effectiveness of chronic care; • Improve integration between primary care and long-term care; • Maximize the ability of clients to live in the community; • Foster consumer choice and involvement; and, • Reduce government expenditures for health care services.
Developed with a generous three-year grant from the Robert Wood Johnson Foundation, HomeFirst is sponsored by the Metropolitan Jewish Health
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System (MJHS) in New York City. MJHS is an integrated health system widely known for its historic roots in elder care, extensive post-acute continuum of services, pioneering home- and community-based programs, and Elderplan, its innovative Social HMO for elderly people. The CCO target population comprises community-dwelling individuals aged 21 and over with serious chronic or disabling conditions who need multiple services and daily supervision or care, and are at-risk of institutionalization. Given the organizational expertise and traditional referral base of MJHS, enrollment will initially focus on elderly people. Community outreach will be used to voluntarily enroll 300 clients. The program is expected to begin some time in mid-2001. Funding will be on the basis of pre-paid capitation from Medicare and Medicaid (the federal-state health care program for poor and indigent people). HomeFirst members must be dually eligible, that is, covered by both Medicare and Medicaid. HomeFirst will offer a comprehensive array of preventive, acute, rehabilitative, long-term and social support services through a network of community providers under contract with the plan. A physician and nurse practitioner, a nurse with advanced training in primary care, will lead a multidisciplinary team of professionals and paraprofessionals to assure coordination and continuity of care across time, place and discipline. Assessment tools, clinical guidelines and extended care pathways will form the matrix of clinical decision making and care management. A strong focus on outcomes is expected to improve clinical and functional results for consumers and help contain costs for payers. Health education and self-care activities will be incorporated into individualized care plans, and consumers will have opportunities to be involved in the operation of the program and the planning and delivery of their care. The HomeFirst CCO is home-centered. Every effort will be made by the multidisciplinary team to bring health care home to the client. This is designed to make care more accessible, convenient and less disruptive. The emphasis on at-home acute- and long-term care is one of the program’s unique features. More traditional, medically oriented managed care programs in the United States are built on an outpatient base. HomeFirst, on the other hand, recognizes the importance of the home setting and delivery of in-home care to people with chronic illnesses and disabilities. First, the focus fits well with the demands of living with chronic or disabling conditions. Except for serious acute episodes, most people with chronic illnesses and disabilities manage their conditions at home, with or without professional help. Second, the home offers distinct advantages over other settings in accommodating at-risk populations that differ by age, condition and need. The CCO’s centralized management and clinical structure and home focus enable it to address the needs of various populations at the same time. And, third, home care organizations, well-developed and widespread but costly
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because of their fee-for-service financing, are a potentially new frontier for the efficiencies of a managed care approach. If HomeFirst is successful, it could open up the possibility of converting home care programs into managed chronic care programs. INTEGRATING A CONSUMER-DIRECTED PHILOSOPHY INTO A CAPITATED MANAGED CARE PROGRAM While MCOs guarantee access to care, they closely govern and often restrict the use of certain health care services—for example, high-cost specialty and hospital care. Consumers have been frustrated and sometimes even alarmed by these stringent cost-containment measures. Advocates for elderly people and those with disabilities have been especially vocal about the lack of consumer choice and involvement in managed care, and the need to create new, more flexible models. The lack of a consumer-directed philosophy in managed care is particularly worrisome to people with chronic illnesses or disabilities, because their health and social needs directly affect two inseparable concerns: quality of care and quality of life. HomeFirst is seriously committed to changing the relationship between MCOs and consumers by fostering choice for and giving a voice to its members. This orientation is inspired by a broad range of service innovations generally called “consumer-directed care,” which is defined as a philosophy of and orientation to service delivery in which informed consumers participate in assessing their needs, determining how to meet those needs and monitoring the quality of service they receive (Kodner, 1996). According to Sciegaj and Capitman (1994), consumer-directed program options span a broad continuum of interventions, all designed to respect individual autonomy within the context of particular relationships, circumstances, policies and capacities. The roots of the consumer-directed approach are in the advocacy movements of younger people with disabilities who have successfully demanded the demedicalization of care and the development of service options offering greater self-determination, more freedom of choice and less professional intervention in their daily lives. This new direction, although seemingly at odds with the “command and control” approach of managed care, is supported by a growing belief in both the medical and home care fields that strong professional-consumer relationships add health care value. From a medical perspective, it is increasingly understood that primary care practitioners dealing with people with chronic conditions should encourage patients to become active participants in their own care. Wagner et al. (1996) indicate that strategies such as collaborative problem definition, joint target or goal setting and the use of selfmanagement tools, plus sustained, active and personalized contact between patients and providers can lead to improved outcomes.
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A similar approach in home care planning calls for strengthening the role of clients, their informal caregivers and advocates in the decision-making and care delivery processes. The starting point is what the consumer wants, not the problems or available services. Assessing consumer expectations and goals (and, where appropriate, those of family members) places the recipient of services in a partnership role at the beginning of the care process, not at the end. Professional evaluations of functional capacity and risk factors, as well as available services are combined with the consumer’s perspective to negotiate a care plan that all parties—client, provider and payer—can accept (Riley et al., 1992). CONSUMER-DIRECTED STRATEGIES IN THE NEW MODEL HomeFirst will use a variety of strategies that enable individuals to select levels of involvement best suited to their personal interests and capacities as illness and functional ability change over time. Further, these strategies will take into account both the recipient of care and the family caregiver, both “consumers” in their own right. The consumer-directed strategies described below fall into three major categories: (1) shaping care; (2) monitoring care; and (3) involvement in program management. Shaping Care Clients will be full partners on the multidisciplinary team, and will be actively involved in the design and implementation of their care plans. Through negotiation with the team, clients (as well as their family caregivers) will be afforded maximum opportunity to choose the type, frequency, and duration of services. In order to lay the foundation for a successful partnership in care planning, the CCO will make a determined effort to educate consumers about patient rights, service options and treatment alternatives and their risks, and expected outcomes. The goal is not to make clients and family caregivers “experts” but to better equip them to direct their own care (Charles and DeMaio, 1993). Education is an important method of enhancing knowledge and encouraging changes in behavior that can help clients and family caregivers to cope with and effectively manage chronic conditions (Lubkin, 1990). Because successful adaptation is crucial for living with chronic illnesses and disabilities, education has an important role in the CCO design. Therefore, HomeFirst will use a variety of teaching methods and tools (demonstration and practice, individual and group discussion, role playing and lecture) to provide information, promote understanding, enhance coping, develop self-
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care skills, and encourage support and involvement in decision making. There are, however, many obstacles in the target population associated with the inability to effectively learn—namely, emotional and physical factors, language barriers and lack of motivation. In response, the team will use a holistic approach to remove these impediments so that real learning can take place. Information from the comprehensive assessment of clients and ongoing consumer feedback will be used to guide the educational program. The comprehensive assessment process begins with the use of a simple questionnaire, based on the Canadian Occupational Performance Measure (COPM) (Gage, 1994). The instrument, as modified by HomeFirst, is designed to assist recipients of care as well as family caregivers in articulating problems and goals from their own personal perspectives. Based on available options identified by the team, clients and caregivers are then encouraged to select the interventions that best “fit” their needs. Using this approach, team members are free to address issues they feel were overlooked by the consumer. They must also concur that the choices made are safe and can be adequately handled by the team. Thus, assessment and care planning in HomeFirst will be largely driven by the desired outcomes of consumers. The result will be services that are negotiated, rather than the more traditionally prescribed. There will inevitably be consumers who are reticent about or overwhelmed by this kind of empowerment. In this case, a decision tree, which clearly lays out the pros and cons of each of the available options, will be used to make the process less intimidating and to facilitate decision making. In addition, to maximize choice HomeFirst will contract with multiple providers for each service. This will enable the client to select the most appropriate provider and change to another provider if desired. Also, the client will be able to transfer to another team if she is dissatisfied. HomeFirst is also committed to implementing a voucher option through which clients can purchase their own services directly in the open market. The advantages of a voucher program are two-fold: First, it provides maximum client autonomy. Second, the strategy has the potential of creating a more responsive market for services, including greater consumer sensitivity and higher quality care (Cameron, 1995). On the other hand, HomeFirst is acutely aware of the logistical problems that this may pose to a managed care program. In addition to the challenge of integrating outside workers into the HomeFirst multidisciplinary team, the option precludes potential cost savings from “cluster care” or “shared-aide” models many home- and community-based programs in the United States employ to pool limited personal care resources in urban areas. Currently, HomeFirst is prevented from exercising the voucher option because of legislative and regulatory constraints on both the federal and state levels. As it stands, in-home personal care cannot be provided without medical authorization and nursing supervision. Also, paraprofessional workers
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delivering this care must meet strict training requirements. To remove these obstacles, HomeFirst plans to appeal to the government to waive the rules. However, this is anticipated to be a lengthy process. Lastly, the self-care ethic has been incorporated into the CCO philosophy and design. In this context, “self-care” means “activities that individuals initiate and perform for themselves in connection with their health and wellbeing” (Slee et al., 1996: 546). HomeFirst’s modus operandi is vastly different than the attitude of the traditional medical system, which tends to foster dependency. The latter is particularly troublesome for people suffering from chronic and disabling conditions, for whom the remedies of acute care are limited, overly intrusive, and act to further diminish feelings of independence and self-control. Therefore, the program will educate clients (and their family members) about their particular conditions and on appropriate self-care techniques to address them. An added benefit is that self-care can reduce the inappropriate use of medical services, thus freeing up resources to meet other client needs. Monitoring Care In HomeFirst, consumers will be encouraged to play an active role in the delivery of care by monitoring the provision of services, changes in personal health status, and progress toward goals in the negotiated care plan. To accomplish this task, the team will encourage clients to make use of a selfmanagement log and a variety of consumer-oriented, condition-specific protocols. The log will assist clients in tracking problems and progress. By doing this, clients will feel more motivated, better engage themselves as a collaborator in their own care, and also provide important clinical feedback to team members. The consumer-oriented protocols are analogues of the same clinical protocols used by the team. Written in simple, clear, nonclinical language, they provide useful information (e.g., warning signs, symptoms, clinical course and anticipated outcomes) to clients and family caregivers about what to expect now and in the future with particular conditions and their management. As is the case with the self-management log, this tool is intended to move the individual from being a passive recipient of services to an active participant in the ongoing care process. Both tools will be introduced at an early stage of the care planning process, and an emphasis will be placed on educating staff and consumers in their appropriate use. Involvement in Managing the Program Empowerment in the CCO model also entails giving “ownership” in the program to clients. The purpose is to engender recognition that HomeFirst exists to serve them and to ensure that their voices are heard. There are two
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ways this will be accomplished. First, clients will be represented on the governing board. And, second, they will be closely involved in the all-important quality improvement process. Both activities are crucial for the maintenance of a consumer-directed, managed care program like HomeFirst. Currently, all HMOs in New York must have consumer representation on their boards, and HomeFirst will follow suit (although this is not specifically required as a CCO). However, unlike most HMOs, where the consumer role is more symbolic than real, HomeFirst plans to amplify the participation of consumers in overseeing the program. This means several things: Consumer involvement will be extended to participation on board committees (e.g., quality improvement); transportation will be provided as necessary; and an effort will be made to hold meetings by phone in those instances when consumers cannot be physically present. Issues will also be presented in terms that lay people can understand. In this way, consumers will be given a meaningful opportunity to participate in setting policy, altering the program’s philosophy, and guaranteeing that the organization’s management, staff and vendors meet with their approval. If, over time, this and other aspects of consumer empowerment prove successful, it is conceivable that HomeFirst and future CCOs will evolve into consumer-run cooperatives, in which clients would be truly in the driver’s seat. Another critical component is client involvement in quality improvement. The active and open participation of clients in these activities is critical from the empowerment perspective for several reasons. First, a consumer presence in this area can demystify the care process, which, in turn, has the potential of increasing client knowledge. Second, it builds the organization’s credibility with its consumers. Most important, it ensures that the program reflects the concerns of consumers and also meets their needs. Since subjective valuations play a large part in determining the effectiveness of outcomes in longterm care, it is difficult to think of an appropriate and credible evaluation of quality without the client’s involvement. In this regard, consumerresponsiveness defines quality care (Sciegaj & Capitman, 1994). By serving on the quality improvement committee and agreeing to participate in focus groups and surveys, consumers will be encouraged to give their frank views on how the program is working for them. In particular, this will enable HomeFirst to determine what program features are useful, how service is perceived, which needs are not being addressed, and the best way to improve and respond. EMPOWERING THE FAMILY CAREGIVER As mentioned earlier, HomeFirst sees the family as a unit of both care and caring. Therefore, the program’s consumer-directed philosophy applies as much to family caregivers as it does to clients. Engaging family members
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in the process of care integrates health and supportive services at the home, client and family levels and, thus, furthers the previously mentioned goals of the CCO model. In HomeFirst, empowerment of the family caregiver begins with the assessment of their goals and expectations as part of the process described earlier in the chapter. By taking into account the family’s expressed values, preferences, needs and apprehensions in the client’s care plan, HomeFirst will strengthen their support and commitment, thereby improving everyone’s quality of life and the quality of care. Family empowerment also means removing the impediments of social isolation from other caregivers and any ignorance associated with this valued, but vulnerable, role. Finally, education, emotional support, coordination of care, respite, and assistance with transitions will also be part of HomeFirst’s effort to empower caregivers to make the right decisions and help their family members at the same time. These activities can also reduce the stresses of caregiving in chronic illness, which are well-documented (Biegel et al., 1991). The centerpiece of these family-focused services will be an array of groups. These groups will serve as the primary vehicle to deliver information, education and emotional support. A group structure was chosen because it facilitates caregiver-to-caregiver socialization and mutual learning. Caregivers have much to offer one another and do not routinely have the opportunity to interact. Social and didactic formats will be used. For example, a weekly group (in person or by telephone) will meet for the primary goal of socialization and emotional support. Another group will be held on a monthly or more frequent basis to cover specific skill-oriented topics chosen by the family members (e.g., skin care). The schedule and location of the groups will be dictated by the needs of the caregivers. To free up time for caregivers to attend, respite care will be arranged to cover clients at home, when necessary. Because different people will choose different levels of involvement over the course of time, some members will attend on a regular basis: others may drop in when needed. To ensure that the groups are addressing the needs of families, the program will regularly solicit their evaluations and ideas. At the most basic level, caregivers want information about the client’s condition, what may happen, and what services are available to help them (Friss, 1993). To meet this need, HomeFirst will provide information that caregivers themselves have identified as being helpful. In addition to orienting family members on how HomeFirst works, general emphasis will be placed on making sure that families understand the: • Nature of chronic and disabling conditions and their everyday challenges; • Importance of making advance plans for health care decision making; • Methods to avoid and deal with medical and other crises;
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• Specific personal care techniques to assist family caregiving at home; and, • Practical approaches to recognizing and coping with stress.
As a consumer-directed program, oriented to both clients and their family caregivers, HomeFirst recognizes the potential conflict between the wants and needs of the client, on the one hand, and the caregiver, on the other. For example, what happens when a client wants to remain at home but the caregiver is unwilling to continue in her role? When such conflicts occur, HomeFirst intends to follow an “ethic of accommodation” proposed by Levine (1998). Apart from decisions about client care that significantly affect the interests and well-being of family caregivers, the autonomy of clients will outweigh that of families. To create a safe climate for the client and caregiver to make their decisions, the staff will be prepared to offer guidance in these difficult situations. The multidisciplinary team meeting will be used as a forum to support staff in addressing such dilemmas; particularly difficult issues will be referred to an ethics committee for recommendations. When staff feel supported in addressing tough situations such as these, they are more likely to practice empowerment with families and clients on an everyday basis.
ACHIEVING STAFF BUY-IN TO CONSUMER DIRECTION The implementation of this consumer-oriented model demands that attention also be focused on the program staff, who comprise the third part of the service triad. There is a natural tendency for most clinicians to think that clients cannot be trusted to prudently oversee their own affairs. Although this thinking is outmoded, in the real world, health care and social service workers utilize all sorts of persuasions and threats, subtle and not so subtle, to dominate the client and control the services. All of this is done under the guise of the traditional health care mindset, which seeks to foster compliance, avert real and perceived catastrophes, and counter “unreasonable” client demands. HomeFirst will attempt to overcome these biases by carefully selecting team members who are open to the idea of client empowerment, and then training them to be sensitive to the consumer’s role and point of view. This training will include the presentation of case studies and hypothetical scenarios, as well as the use of role playing to teach the meaning and importance of consumer direction, and the practicalities and limitations involved. The goal is two-fold. First, professionals and paraprofessionals in the program should be motivated to always ask, “How can I give the client a voice and a choice in a particular instance?” Second, they should be comfortable
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with and have the skills necessary to share decision making with clients and their family caregivers. HOW HOMEFIRST ADDRESSES IMPEDIMENTS TO EMPOWERMENT The CCO model that is being implemented by HomeFirst will address a number of impediments to empowerment on the provider, environmental, client and societal levels, as outlined in Chapter 2. The challenges addressed by the new program at these various levels are discussed below: Provider As discussed earlier, HomeFirst represents a novel approach to the provision of health and social services for people with chronic illnesses and disabilities, especially the growing elderly population in need of long-term care. As a managed care program, the CCO model is designed to overcome the kinds of problems, discussed earlier in this chapter, that are associated with putting together and coordinating a package of comprehensive services from disparate providers and funding sources. This is accomplished through a financial control model in which access to needed care is guaranteed and the use of care management methods and multidisciplinary teamwork, as well as partnering with clients and family caregivers, are emphasized. The CCO also focuses on bringing health care—both acute and long term—home. This represents a major effort to redirect services away from the traditional institutional biases of the hospital and nursing home, and toward accommodation more suited to the preferences and needs of clients with chronic, disabling conditions. Additionally, the inflexibilities inherent in the usual way chronic care is organized and delivered in the United States and many other countries, is remedied by HomeFirst’s enhanced ability to access needed services and its willingness to collaborate with the consumer in both shaping and implementing the care plan. Lastly, the shift to a consumer-directed modus operandi among professional and paraprofessional staff is a challenge in and of itself, regardless of the model in which it takes place. To overcome the obstacles involved, HomeFirst, as mentioned above, will pay particular attention to carefully recruiting individuals who are open to this role change, and providing ongoing training and support to help them play this new and demanding role. Environment Although HomeFirst is responsible for the provision of comprehensive services in all settings, its design is primarily home-centered. This stands in opposition to the rest of the health care system where, for the most part,
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consumers are compelled to get care where and when it is most convenient for providers and appropriate for funders. In this way, HomeFirst recognizes that consumers prefer care at home and that such care is less disruptive to their lives. The HomeFirst approach best responds to differing lifestyles and housing preferences, and the many difficulties involved in living with chronic illnesses and disabilities. Client Chapter 2 cites a number of impediments to empowerment on the client level. HomeFirst will address several of these: negative perceptions about personal choice; biased attitudes toward aging, disability and care; and financial and other resource constraints. Education directed to both consumers and staff will play a pivotal role in the CCO model in making clients and their family caregivers aware of the meaning and value of consumer direction, as well as helping them to express preferences and make choices. This mechanism will also be used to make consumers more knowledgeable about their conditions and necessary care, dispelling biases that they hold about themselves and their needs. Tools, such as the consumer preference questionnaire, self-management log and consumer-oriented protocols, have also been developed by HomeFirst to encourage and support the active participation of clients and families in the planning, delivery and monitoring of care whenever possible. And, to foster ownership of and confidence in the program and its consumer-directed philosophy, clients will be represented on the governing board of HomeFirst and offered opportunities to become involved in quality improvement activities. Lastly, the program is designed to bring together and coordinate Medicare-funded medical care and Medicaid-funded long-term care in a managed care environment. This provides complete health protection and eliminates the fragmentation and discontinuity that often limit access and appropriate care, especially for people with chronic illnesses and disabilities who need multiple services. By overcoming these financing and delivery system obstacles, HomeFirst clients should feel more confident in their role as empowered consumers. Societal Fiscal constraints on government spending for health and social services are found in all industrialized societies. Programs for elderly people and those with disabilities cannot escape these pressures, which often result in more limited client choice and fewer opportunities for consumer empowerment. The paradox of HomeFirst is that it embraces both cost containment and a consumer-directed philosophy to address major societal concerns re-
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lated to resource limits, and the adequacy of care for clients with complex needs. The model will test, in part, whether the cost-cutting demands of funders and the desire of consumers for health care empowerment can both be satisfied. This issue is discussed at length in the concluding section. CAN MANAGED CARE AND CONSUMER-DIRECTED CARE COEXIST? HomeFirst is a new approach to the vexing problem of how best to bring acute and long-term care services to people struggling with the burdens of chronic illness and disabilities, at a cost that society can afford. The model is unique because of its managed care focus on the home setting and its consumer-directed philosophy. While the model has yet to be tested, it nonetheless raises an interesting question about the compatibility between these two basic features. HomeFirst does not embrace a consumer-directed philosophy with its eyes closed. As an MCO, it recognizes that it must do a better job than the fragmented, fee-for-service system in managing care and costs. Therefore, the program cannot escape using many of the same care-management techniques employed by traditional managed care plans. However, because HomeFirst is specifically geared to people with chronic illnesses and disabilities, the CCO model must also be judged on the basis of how well it understands and responds to consumer needs and makes room for their participation in developing and directing their care. The seeming conflict between efficiency and professional dominance, on the one hand, and consumer autonomy and control, on the other, creates a dilemma that must be addressed if managed care is to succeed with, and be accepted by, elderly people and other special needs populations. The sense, however, is that HomeFirst will ultimately find it impossible to eliminate all of the tensions that come from a kind of health care delivery model that Rosalie Kane (1988) describes as trying to be both a resource controller and a client advocate simultaneously. Given this constraint, it has always been understood by the CCO designers that “autonomy” and “choice” are each relative concepts. As Kapp (1991) argues, it is impractical to view autonomy in an abstract manner, as an all-or-nothing benefit, but rather in terms of “contextual autonomy.” Contextual autonomy considers not only the individual’s unique situation and the available options, but also recognizes the limitations of the particular delivery system (Sciegaj & Capitman, 1994). The philosophy and methods that HomeFirst will employ to afford consumer direction will take all these variables into consideration. The program’s consumer-directed philosophy does not seek some ideal form of ultimate empowerment. It represents only the first in a series of calculated steps down the new and unmapped road of consumer empowerment. These beginning strategies were explored in this chapter. Initially, our
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goal is to create a workable middle ground between what Moody (1976) defines as the social service and participation models. As part of these developments, we will be searching for a set of effective consumer empowerment strategies that fit the needs of elderly people (today’s and tomorrow’s generations) as well as those of younger people with disabilities. Our belief is that consumer empowerment cannot succeed in the CCO model unless HomeFirst successfully adapts itself to the major differences we already see between these populations in terms of their ethos of autonomy and self-direction and their sense of consumerism. We are beginning with a more homogeneous design for the sake of simplicity, but will make necessary adjustments along the way. By bringing managed care and consumer-directed care together under one roof, the stakes will be higher for HomeFirst than for more conventional health and social service programs. The challenge will not only be to find effective ways of shifting power from professionals to consumers, but to do it without harming outcomes and undermining the model’s cost-containing potential. If the right balance can be found, we will have advanced the cause of humanized managed care.
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Elderly Persons with Severe Mental Illness: Empowering a Neglected and Growing Population Paul H. Carmichael
Frail elderly people, as suggested in Chapter 1, do not represent an isolated or passing phenomenon, but constitute a significant part of the life cycle that is expanding in many countries around the world. The populations of the United States, Europe and other developed countries are aging. By the year 2020, for example, more than 20% of the U.S. population will be aged 65 or over; the population aged 85 and over is expected to grow even more rapidly (Cornman & Kingston, 1996). The increased survival rate for Americans and Europeans, in general, can be attributed to a host of factors, including a general improvement in health and life circumstances, and a growing array of community-based and institutional services (Light & Lebowitz, 1991). Despite the general improvement in people’s health, there remains a specific subgroup of elderly persons who are at great risk for unmet service needs: seniors experiencing mental health problems, and, in particular, seniors suffering from severe and chronic mental disability. This chapter examines the state of mental health services for elderly persons with serious and persistent mental illness (SPMI), and promotes an enlarged research agenda and new techniques of empowerment for building the relationship between the aging and mental health communities. While much of the following discussion will focus on the American mental health system, many parallels can be made to the experience of other countries struggling with a rapidly aging population. Several interrelated themes are addressed: severe mental illness among elderly persons; mental health services for elderly persons; social disability and old age; mental health
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empowerment and social skills training; and empowering seniors with severe mental illness. SEVERE MENTAL ILLNESS AMONG ELDERLY PERSONS Advancing age is accompanied by an increased risk of physical and mental disability, and may be associated with serious mental health–related concerns. Studies consistently indicate that elder adults tend to experience substantial comorbidity, that is, direct interaction between physical and mental health (Cohen, 1990). Unfortunately, studies of elderly people also indicate that the proportion with, or at risk of, unmet psychological and social needs increases with age. There is a tendency for mental disease in elderly persons to be overshadowed by medical illnesses, and a significant proportion of patients with mental disability may be overlooked and left untreated. This concern is especially relevant for frail elderly people with a severe or chronic mental illness. The question of how to empower elderly people who experience serious mental health needs will require increasing attention from the gerontological and mental health communities. Empowerment with respect to elderly persons with mental disabilities is not an easy term to define and must be understood, at least in part, through an evaluation of the elderly person’s values and the social context within which she may exercise individual control. As discussed in Chapter 1, the concept of empowerment may be more easily grasped by focusing on the impediments that prevent seniors from making choices for themselves. Existing barriers to empowerment relevant to the life experience of seniors with mental illness include provider-based, client-based and societal-based impediments. A classification matrix of these impediments to empowerment is discussed earlier in Chapter 2. Providerbased impediments to the empowerment of older people with serious mental health problems are especially important to identify and overcome, because these include inadequate provider training and education about this specific population. The research knowledge base essential to our understanding about the nature, treatment and outcome of chronic mental illness remains severely limited (Light & Lebowitz, 1991). While chronic mental illness is predicted to become an increasing social problem and concern for the mental health community (Gatz & Smyer, 1992), it is not well recognized that seniors make up a significant proportion of the category of people commonly referred to as the “serious and persistently mentally ill” (SPMI). Estimates vary, but research carried out in the United States suggests that between 15% and 25% of American citizens over age 65 experience significant mental health problems (Flemming et al., 1986; Meeks et al., 1990; Roybal, 1988). In long-term care settings, it is estimated that 30% of nursing home residents have a chronic mental disorder, excluding dementia (Knight
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& Kaskie, 1995). The SPMI designation includes those with schizophrenic and paranoid disorders as well as bipolar disorder and severe or chronic cases of major depressive disorder. The mental health needs of elderly people within this subgroup are especially overlooked in the research literature; they are also neglected in many human service settings. Empowerment of frail elderly persons with severe mental illness, as with any other underserved or neglected population, must include the identification and recognition of this vulnerable group by providers, programs and social policy. This point may appear obvious, in that a frail elderly person cannot be expected to receive professional treatment for mental health concerns or enter into an empowering relationship with others if that person is not identified by a caring system. However, the reality is that the mental health needs of elderly people often go unrecognized by providers and, therefore, untreated; thus, these individuals never become integrated into what can be termed an empowering process. Committed efforts toward defining and understanding mental disability should be an essential part of our work to eliminate the barrier of provider ignorance. The definition of the serious and persistently mentally ill (SPMI) is not simple to state or operationalize, especially as it applies to elderly persons. SPMI, like a previously used term, CMI (chronically mentally ill), implies the notion of chronicity, including diagnosis and duration of illness, level of disability, and duration of hospitalization (Faulkner, 1991). Traditionally, the criteria for including a specific disorder in this definition relate to the effect the disorder has upon reducing or preventing an individual’s abilities to carry out three or more primary areas of daily life: personal hygiene and self-care, self-direction, interpersonal relationships, social transactions, learning, recreation, and economic self-sufficiency (Department of Health and Human Services, 1981). Definitions of severe mental illness usually include those persons in institutional care or outpatient care, as well as those receiving no treatment and at risk of institutionalization. Many problems have been raised concerning the standard definitions of chronicity and mental illness. Issues of incidence and prevalence are problematic regarding persons with serious and persistent mental illness, especially when looking at cultural subgroups. Moreover, duration of hospitalization may be more accurately seen as an outcome of chronicity rather than a definition. For example, many people with chronic illness do not need hospitalization, many illnesses called chronic may not follow a chronic course, and some acute illnesses may become chronic. Although many researchers and professionals agree we need to learn more about the interactions among mental illness, elderly people, and culture, the definitions of SPMI frequently used are not specific to elderly people (Faulkner, 1991). Some of this difficulty is clearly related to the lack of longitudinal studies and agreed-upon criteria for measuring elderly persons with severe mental illness. Literature on aging has recognized the critical need for future epide-
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miological studies on the nature of chronicity of mental illness, especially with respect to the life span and old age (Gurland & Toner, 1991). The urgent need for more research on the SPMI senior population is due, in part, to the lack of reliable data; the list of relevant studies is very scanty. In a recent review of studies that have used a longitudinal approach to understanding chronic mental illness, the authors found only 12 that came close to meeting their research criteria. These criteria required that a study (1) follow the course of an individual’s disorder and treatment across a range of many years, preferably from adulthood to old age or death; (2) collect enough measurements over time to describe the events between the onset of a disorder and the stage of old age; and (3) include sufficient detail to elucidate the nature of chronicity. However, even the 12 studies selected were limited by such considerations as cohort sampling bias or insufficient length of follow-up, and only five of the studies included subjects achieving a mean age of 65 or higher by the end of the study (Gurland & Toner, 1991). Overall, research dealing with chronic mental illness tends to use samples comprising younger persons. Surprisingly, in research studies that specifically focus on old age, elderly people tend to be simply lumped together into a single group, even though they may differ in age by more than 30 years and may exhibit significant differences in terms of health, social status and other variables. In fact, much clinical data are based on atypical older patients and settings, and much treatment research ignores the needs of frail elderly people (Schneider, 1995). Clearly, a renewed and concerted effort to conduct epidemiological studies on chronic mental illness and old age is a primary step in an empowering process that seeks to enlighten providers who serve this neglected subgroup and to inform associated policy and programs. MENTAL HEALTH SERVICES FOR ELDERLY PERSONS Earlier in this book, Chapter 1 described a very useful four-stage framework for analyzing how different societies have developed their goal of empowerment of frail elderly persons. These stages are (1) rejection, (2) social service, (3) participation, and (4) self-actualization. Applying this model to the U.S. service delivery system, societal values have tended to place efforts at empowering frail elderly people somewhere between stage 1 and stage 2 along this continuum. Presently, in the United States, although more than 7 million seniors may require professional mental health services, relatively few of them are actually receiving treatment. Historically, elderly people have been on the “periphery of mental health care” (Cohen, 1991). Researchers have estimated that as many as 80% of elderly people with mental health problems will not receive services from the mental health profession (Pratt & Kethley, 1980; Rosen et al., 1995; Roybal, 1988). Societal-based impediments to empowerment of elder citizens with men-
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tal disabilities have included ageism and an unwillingness to consider or recognize their empowerment needs. Elder Americans are typically underrepresented among psychiatric patients, despite 20% over age 65 having a dementing illness, and 15% having substantial dysphoric symptoms (such as states of anxiety, dissatisfaction and restlessness). Twenty-two percent of adults in both institutions and the community over age 65 are estimated to have mental disorders (Gatz & Smyer, 1992; Reifler et al., 1982). Older adults are more likely to use inpatient than outpatient services, more likely to use general hospitals than other treatment sites, and far more likely to be treated by general medical practitioners than by mental health professionals. In fact, only 56% of all service use by elderly people for mental disorders is provided by the mental health sector (Estes, 1995). The lack of services and professional interest concerning mental illness among elderly people is a disturbing fact that needs to be addressed. Numerous reasons have been cited by researchers in gerontology to account for the barriers to effective mental health service delivery to elderly people. These include various provider-based and client-based limitations; for example, service delivery biases that prevent access to services, negative stereotypes on the part of provider, misinformation on the part of both seniors and providers, and fear by seniors of admitting an emotional problem or mental illness. In addition to these obstacles, there exist both a lack of trained professionals and a lack of specialized programming regarding geriatric mental health (Knight et al., 1995; Roybal, 1988). The lack of staff education and the lack of professional experience concerning the mental health problems of elderly people have long been cited as significant barriers to services, and these are often associated with problems of access between patient and practitioner (Cohen, 1991; Pratt & Kethley, 1980). Therapists frequently believe they have little to offer older people because older people are not able to change their behavior, or the sources of their psychological problems are intractable (e.g., organic brain disease). Therapists also tend to fear they will be overwhelmed by the diversity of problems older people may present. Despite these fears, research has shown that the presenting problems encountered in residences for elderly people are very similar to those encountered in any general psychiatric practice (e.g., depression, anxiety, paranoia, and situational reactions to loss) (Cohen, 1991). A further barrier, and one that perhaps underlies all the other providerbased impediments, is the system segregation of mental health programs and aging services (within the impediments classification scheme in Chapter 2, this is referred to as “coordination,” which includes formal care fragmentation). Researchers point to the historic lack of cooperation between the aging network and the mental health system (Rosen et al., 1995; Gatz & Smyer, 1992). The elderly citizen with a chronic or emerging mental health problem is frequently unable to be adequately served by either system. In the United States, mental health policy historically has lacked leadership in
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the development, financing, and staffing of mental health programs for elderly persons and their families (Rosen et al., 1995). Despite passage of the Older Americans Act of 1965, and the establishment of both the National Institute of Aging in 1975 and the Center for Studies of the Mental Health of the Aging in 1976 (within the National Institutes of Mental Health), mental health services for elderly people have typically been branded “insufficient and inappropriate” (Gatz et al., 1980). More than a decade ago, researchers concluded that the American mental health system had failed at adequately serving the older American. The Administration on Aging has since issued Requests For Proposals for demonstration projects promoting and testing innovative methods and programs for linking the aging network and the mental health system (Gatz & Smyer, 1992). Today, the struggle continues among mental health agencies, nursing homes, social work organizations and other senior citizen providers to find appropriate solutions to help serve and empower elderly people with mental health problems. Fortunately, in both the mental health and aging fields, recent literature emphasizes the important relationships between old age and mental health. Indeed, there is perhaps no other age group in which “the interplay of the psychological, social, and biomedical factors influencing mental health is so obvious” (Cohen, 1990: 360). Many researchers and interested professionals in both the United States and Europe have called for innovation in mental health services and service delivery to their elderly populations (Cohen, 1990; Gatz, 1995; Lebowitz et al., 1987; Norman & Redfern, 1997; Santos et al., 1995). Professionals in both the aging and mental health fields have proposed a reconceptualization of how we serve elderly people—from a social service model of treating an individual’s deficits to a person-oriented systems model wherein an individual’s strengths are tapped and the potential for recovery is grounded in the everyday world of human interaction and social acceptability. Such a restructuring of elder services provides a critical backdrop to the senior empowerment movement by seeking to reduce the impediment of formal care fragmentation. In terms of Chapter 1’s analytical model, it shifts the focus of societal values beyond the “social service” stage of the continuum toward the goals of individual “participation” and “selfactualization.” SOCIAL DISABILITY AND OLD AGE For the subgroup of elderly people with severe mental illness, the lack of mental health services, or the lack of integration of mental health and services for elderly people, has been particularly disempowering. One area that provides hope in this regard is the growing professional interest in social disability as a separate category of need among people suffering from chronic mental health conditions. Social disability has been characterized as one of four major types of disability (the others being physical, emotional, and
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mental). Social disability within the population of serious and persistently mentally ill people is increasingly an important focus of research and treatment. Social disability was originally defined as a limitation, in, or inability to perform, social roles or obligations (Branch & Jette, 1981). The study and treatment of social disability represents an important opportunity for those concerned about severe mental illness and those concerned about the empowerment of elderly people to find common ground and shared solutions. Researchers promoting this collaboration have recommended policies that include approaches to both preventive and direct services, and have emphasized new empowerment strategies for developing coping skills and social supports for seniors (Gatz & Smyer, 1992; Rentoul, 1997). Other literature, as well, has outlined practice challenges for professionals serving the social needs of elderly people with SPMI (Light & Lebowitz, 1991; Norman & Redfern, 1997). The search for a better definition and criteria for chronicity of mental illness has led researchers to seek new understandings of the experience of severe mental illness, including the formulation of quality of life and quality of care criteria. Few studies on the chronicity of mental disorder in old age have focused on people’s quality of life or the presence of social disability as substantially determined by the course of the disorder (Cutrona et al., 1991; Gurland & Toner, 1991; Norman & Redfern, 1997). Standard definitions of the chronic patient have not addressed the essential nature of chronicity as a function of the quality of life and care. Quantifiable criteria such as the duration of hospitalization and the count of affected life areas (e.g., self-care, economic independence, mobility and communication) may simply be outcomes of chronicity rather than constituting a meaningful understanding of the experience of chronicity. An empowering definition should capture the meaning and importance of social disability to patient, family and professionals. Mental health professionals will assist the empowerment movement by emphasizing quality of life criteria in our understanding of chronicity (Gurland & Toner, 1991). For example, client-based impediments to empowerment—like low social expectations, low self-esteem, and perceptions of the aging process and the meaning of care—would be more clearly illuminated and linked to possible intervention strategies. Researchers examining institutionalized populations of elderly residents increasingly are operationalizing the concept of “social disability.” A number of established “quality of life” scales have stressed the need to include a dimension of perceived adequacy of social needs fulfillment (Diener et al., 1985; Heinrichs et al., 1984; Lehman, 1983). The Resident Assessment Instrument, for example, developed as a standardized measure of quality of life within nursing homes, includes scales to measure dimensions of social communication and psychosocial well-being among elderly people (Mor et al., 1995). In an earlier study, a panel of professionals determined that one critical dimension of social need of older persons was skills training, therapy
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or other opportunity for rehabilitation; another dimension was social contact and recreational activities (Reed & Washington, 1984). Increasingly, gerontologists are also concerned about who and what we measure regarding elderly persons with serious and persistent mental illness. Research instruments must be specifically designed for elderly populations. A quality of life scale would encompass five dimensions: physical health, mental health, everyday functioning in both social activities and role activities, and general perceptions of well-being (Schulz & Visintainer, 1991). In Great Britain, recent literature has suggested positive effects of supportive social relationships upon people’s mental and physical health, and has indicated linkages to the mortality rates of older people. Researchers in this area need to design more rigorous methods to test specific strategies for reducing social disability and increasing social empowerment. Desired social outcomes among frail elderly people might include positive adjustment in later life, increased autonomy and social support, increased social connectedness, and subjective measures of well-being (Rentoul, 1997). MENTAL HEALTH EMPOWERMENT AND SOCIAL SKILLS TRAINING One of the most encouraging signs in the senior empowerment movement is that empowerment is being sought and defined for even the most severely disabled people. As discussed in the first chapter of this book, the empowerment process involves not only the removal of external impediments to increased autonomy of people with disabilities, but also attempts to respect and integrate the personal perspective and values of these individuals. Providers must actively participate with their clients in this developmental process; empowerment is not something one simply does to another human being. Recent literature in the American mental health field espouses this philosophy in the development of a recovery model for patients with long-term psychiatric disability (Anthony, 1993; Anthony & Liberman, 1986; Morley & Selwood, 1997). This vision of service delivery for the 1990s and beyond, increasingly referred to as “psychiatric rehabilitation,” is proactive and emphasizes recovery from mental illness. Recovery-oriented mental health systems seek to structure their settings so that the seeds of recovery are sown and nurtured through creative client-centered programming. An underlying assumption of the recovery vision is that our thinking affects our feelings and specific empowerment strategies attempt to reflect this assumption. Within the mental health recovery movement there is a strong emphasis on social skills training to help sufferers cope with and, to some extent, overcome their social disabilities. The primary client-based impediment to empowerment concerning frail elderly people with severe mental health problems clearly involves mental capacity limitations, which, in turn, may affect self-esteem, personal choice
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and expectations, and perceptions about aging and disability. Researchers agree that there is overwhelming evidence that a majority of people with severe mental illness perform basic life skills poorly and are able to participate only marginally, at best, in life’s major roles. Many of these people are typically isolated and in poor physical health. They lack the basic survival skills needed for achieving social competence (Wallace & Liberman, 1995). Many persons with serious mental illness experience learning disabilities and require the use of highly directive behavioral techniques for training in social skills. Most have attentional and information-processing deficits, and many tend to experience overstimulation from emotional stressors or even from therapy sessions if not carefully structured and modulated. Moreover, people with severe mental illness generally lack conversational skills, a basic building block for social competence and autonomy (Liberman et al., 1993). The overarching goal of psychiatric rehabilitation has been defined as helping individuals to change their “attitudes, values, feelings, goals, skills, and/or roles” in order to live “a satisfying, hopeful, and contributing life even with limitations caused by illness” (Anthony, 1993: 15). Indeed, the cornerstone of psychiatric rehabilitation is “skills training” (Wallace & Liberman, 1995). Although a multistage process to help identify and plan for developing missing skills (e.g., money management, medication management, problem solving and basic conversation) has been practiced for some time, only recently have curricula been developed for clinicians that focus on specific areas of skills training. Perhaps the best-documented examples of these skills training techniques are those developed by Wallace, Liberman, and colleagues at UCLA’s Camarillo Neuro-psychiatric Research Center. They have developed and published a series of training “modules” that provide highly structured and standardized methods for teaching the competencies of community functioning (Liberman et al., 1989, 1993). Currently, five modules have been developed to assist clinicians: medication selfmanagement, symptom management, recreation for leisure, basic conversation, and community reentry. Social skills training, frequently referred to as SST by its proponents, appears to provide exciting promises for addressing the problems and needs of many of our frail elderly citizens with mental illness. Each area of social skills training, while not eliminating disability altogether, serves the empowerment process by helping the individual, in spite of mental limitations, to improve competence in key life areas and to increase self-esteem and personal choice. The essential core of skills training modules is the assessment and modification of behaviors by systematic practice and positive feedback (Wallace & Liberman, 1995). A further purpose of these modules is to clarify the procedures for established practitioners, that is, by utilizing a stepby-step program for teaching the social and problem-solving skills of a major area of independent living. Each module “consists of a trainer’s manual that specifies what is to be said and done to teach the skills, a videotape that
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demonstrates the skills, and a participant’s workbook that includes additional written materials to help participants learn the skills” (Mueser et al., 1995: 36). Many studies have explored and documented the effectiveness of cognitive and social skills training, including outcomes of the social skills modules developed at UCLA’s Camarillo Neuro-psychiatric Research Center (Bellack et al., 1990; Eckman et al., 1992; Liberman et al., 1987, 1986, 1985; Scott & Dixon, 1995; Wallace et al., 1992;). A meta-analysis of related studies concluded that people with serious and persistent mental illness are able to learn new skills and retain them over periods ranging from two months to one year and longer (Benton & Schroeder, 1990). A few earlier studies examined the independent and combined effects of skills training and pharmacotherapy on relapse rates of patients with SPMI. Although findings are not unequivocal, patients receiving skills training in addition to medication had a significantly lower relapse rate than patients receiving medication only (Benton & Schroeder, 1990). A number of more recent studies measuring the effectiveness of skills training modules administered to samples of SPMI patients suggest that not only were persons able to learn the material and retain it for one year, but line-level staff could easily and reliably carry out training instructions. These studies suggest cautious optimism about the clinical benefits of social skills training (Dobson et al., 1995; Mueser et al, 1995). Few studies have looked at the generalizability of teaching methods across naturalistic settings. Results of those research studies that have included some measure of participants’ interpersonal functioning within natural settings suggest that persons do perform better in their own environments after training than before, yet not as well as they performed within their teaching environments (Benton & Schroeder, 1990). It is believed that social skills training may require overlearning through repeated practice. The need for supplemental training and supports, to facilitate the transfer of skills to home environments is becoming more recognized. The challenge of teaching social and living skills to clients, in conjunction with the development of supportive and accommodating environments, must be met as psychiatric rehabilitation matures (Wallace & Liberman, 1995). Thus, increasingly, social skills training is becoming recognized as an effective teaching and empowering strategy among concerned researchers and practitioners who promote a recovery-oriented vision of mental health services. EMPOWERING SENIORS WITH SEVERE MENTAL ILLNESS To more fully empower frail elderly people with severe mental illness, research and practice must include a social skills training agenda. In reviewing the literature on social skills training, it is apparent that these empowerment strategies have continued to grow in popularity in the past 25 years
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across a number of populations. Social skills training is popular within the self-help literature in the treatment of social phobias and depression, and, as mentioned above, is now recognized as a cornerstone of psychiatric rehabilitation. It is one of the most widely practiced rehabilitative methods applied to the SPMI population. Within the broader mental health community, there seems to be a growing acceptance that social skills training is a vital component of treatment for at least some patients with severe psychiatric disorders. The American Psychiatric Association, in fact, has issued practice guidelines that include an endorsement of social skills training as a key intervention for the stabilization and recovery phases of schizophrenia (Mueser et al., 1995). In the recovery phase, for example, training would focus on specific areas of social empowerment: skills in conversation, recreation, problem solving, and friendship. Despite this endorsement, however, virtually all published studies on social skills training methods for people with severe mental illness tend to leave out persons who are elderly. Even in countries with active mental health research agendas, like the United States and the United Kingdom, there have been no reported research studies directly addressing and evaluating the use of social skills training with elderly patients. Yet, various researchers concur that social skills training would be useful in the senior patient population (Morley & Selwood, 1997; Wallace & Liberman, 1995). Techniques of social skills training are particularly applicable to seniors with severe mental health problems. Many of the previously discussed impediments to empowerment of frail elderly people are client-based and must be addressed by involving individual clients themselves in efforts to reduce or eliminate them. These impediments included limitations in mental capacity, poor self-esteem, lowered expectations, lack of personal choices, and biased perceptions regarding the aging process and care providers. Social skills training would directly involve the conscious participation of the elderly client; systematically address the removal, or at least minimization, of many of these barriers; and consistently focus on the objective of increased personal autonomy. The series of training “modules” described above provides methods for teaching the competencies of community functioning. Each of the modules (i.e., medication self-management, symptom management, recreation for leisure, basic conversation and community reentry) addresses the removal of client-based impediments by providing social and problem-solving skills to assist clients in major areas of independent living. The basic conversational skills module, for example, trains the client to initiate simple interpersonal exchanges and begin friendly conversations with others. Such basic skills can easily be taken for granted or their importance overlooked by providers, families and caretakers, yet these skills are vital community-building blocks for many elderly people with severe mental illness. Newly developed social competencies, whether they be skills in basic conversation, self-management
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of medication, or the directed use of leisure activity are associated with increased self-esteem and greater personal choice. Moreover, skills training strategies are tailored to the needs and abilities of the individual: Elderly people with severe mental illness represent a broad range of personal experiences and individual capacities. In empowerment terms, social skills training promotes some relative measure of psychological autonomy, but equally recognizes the importance of connecting to others, and, by definition, seeks to remove impediments that prevent people from making choices for themselves. Of course, for frail elderly people themselves, personal power may be perceived differently than it is from a family member’s or service provider’s point of view. Indeed, as indicated in Chapter 1, empowerment may sometimes mean consciously giving away one’s power to another. Again, empowerment should not be envisioned as a specific outcome but as an ongoing developmental process. The important point here is that social skills training encourages the empowerment process and represents a desirable empowering tool for both clients and clinicians alike. The proponents of social skills training have sounded the call for more research and improved clinical techniques. Far more information is required about who will benefit from psychiatric rehabilitation and to what degree (Wallace & Liberman, 1995). Standardized skills training curricula should permit widespread dissemination and adaptation among rehabilitation practitioners, including those who work with the elderly population with severe mental disabilities. Social skills training, including techniques for stimulating the process of social empowerment, should continue to emerge as one of the fundamental categories in elder services. The reasons for its increasing importance include enhancing the knowledge base and practice effectiveness of therapists, as well as the need for short-term, cost-effective models of intervention. Prominent researchers have argued that all mental health programs servicing seniors should include “survival skills training” (that is, skills of daily living) (Cohen, 1991). Today, there remains a critical need for development of a systematic body of knowledge describing the frail elderly population with severe mental health problems. Substantive issues for research include epidemiological and demographic studies, social support among this subgroup, behavioral and cognitive empowerment strategies, subjective quality of life measures, and the personal meaning of chronic illness. Currently, a very limited number of trained researchers exists in the area of mental health and aging, and only a minority of these are interested in the specific problems of older persons with severe mental illness (Zarit, 1991). In the United States, researchers have called for a specific NIMH research agenda for elderly people with severe mental disabilities (Faulkner, 1991). Others have promoted the development of a training curriculum in clinical geropsychology for people who train and supervise psychologists working with older adults (Knight et al., 1995). In summary, our seniors with serious and persistent mental health prob-
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lems make up a significant proportion of the population with chronic mental illness. The need to find common ground between the proponents of services to the SPMI and those serving the aging communities is enormous (Meeks et al., 1990). In this era of managed care, local assistance dollars are generally declining, and, therefore, brief, intermittent-type therapy is becoming increasingly desirable. The importance of community outreach and cost-effective services for elderly people has been clearly demonstrated. More research is needed to understand severe mental illness among elderly people, especially from the perspective of their own direct experience of social disability, and to systematically evaluate the effects of social skills training among this population. Mental health services should increasingly include shortterm practical services to empower seniors with severe disability in the use of basic social survival skills and thus help them remain in independent living situations.
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Older People with Longstanding Disabilities and Their Caregivers: Empowering a Neglected and Growing Population Lindsay Gething
The next generation of older people (the “baby boomers”) differs from previous cohorts in many ways. These differences will demand major changes in approaches to service provision if society is to preserve the rights and dignity of older people while providing services that meet needs within the limited resources typically available in modern Western countries. Existing policies, practices and behaviors are likely to be resisted by the next generation that is more vocal and has higher expectations than previous cohorts. On the other hand, service agencies and personnel are likely to resist the changes demanded by consumers because of attitudes and values promulgated during professional training and because of models that better serve the agendas of service agencies than those of clients (that is, agendas that are “program-based” rather than “needs-based”). This chapter considers factors that act as barriers or impediments to achieving empowerment for people aging with longstanding disabilities and their caregivers. It argues that these impediments reflect lifelong cumulative disadvantage and the effects of service policies and professional practices. These disadvantages are compounded by negative attitudes and beliefs about aging and older people (“ageism”) that are widespread in the community, among older people themselves, and among health and community care professionals. After discussing impediments to empowerment, Goal Attainment Scaling is presented as a methodology with the potential for empowering older people by including them as integral and genuine participants in decision making.
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THE ‘BABY BOOMER’ GENERATION The next generation of older people differs from its predecessors in several ways: It is better educated, more ethnically diverse, has not lived through a world war, has different expectations for retirement, is familiar with a “consumer-oriented culture” and accepts that it is appropriate for both men and women to work both inside and outside the home. In her description of the older people of tomorrow, Silverstone (1996) noted that areas in which the baby boomer generation appears to be particularly vulnerable with regard to aging are: income, security, productivity, health and disability, and social supports. She concluded that they are “likely to be more confident about being old, more uncertain economically, and more aware of their health needs” (p. 28). As Silverstone comments, such trends will necessitate changes in practice in terms of the rights of people with disabilities, professional skills, long-term care, clinical assessments and community organization skills. These differences from previous cohorts mean that the next generation of older people will define empowerment and quality of life differently from earlier cohorts and also will have different expectations for service delivery. AGING WITH LONGSTANDING DISABILITY The baby boomer cohort has a longer life expectancy than previous cohorts and is the first generation to contain a substantial proportion of people with longstanding disabilities. Advances in technology, medical care and community supports mean that many people who once would have died before reaching late adulthood now have a life expectancy that approximates that of the general population. These changes are impacting on the age profile of people with disabilities. For example, ParaQuad, an Australian organization representing people with disabilities, estimates that by the year 2020, more than 50% of its members will be over 60 years old (Cooper, 1996). Kunkel and Applebaum (1992) estimate that the number of older Americans with long-term disabilities will increase from around 5.1 million in 1986 to around 22.6 million in 2040 (an increase of 343%). The aging of the population means that the number of people with age-related disabilities is also increasing. Until recently, aging with a longstanding disability has not been a major consideration for governments and service providers. As a result, unlike aged care, disability policy and practice have not evolved to meet these needs. According to Crewe (1990) and Kunkel and Applebaum (1992), the United States lacks a planning and research strategy that recognizes future challenges with regard to the aging population of people with disabilities. Similar comments have been made about Australia (Gething, 1999a). Unless ad-
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dressed, lack of flexibility in service models, poor coordination between services and the failure of models to take into account the needs of people aging with longstanding disability will continue to form major impediments to achievement of empowerment, and their effects will become exacerbated as these people move further into old age. THE EXPERIENCE OF AGING WITH A LONGSTANDING DISABILITY Disabling conditions are not static (Marge, 1994). Change is an ongoing part of life for all people, whether they have a disability or not. We all experience change as we progress through the life span. Recent research indicates that people with severe physical disabilities experience the changes associated with aging that occur for others in the population, but these changes tend to occur earlier and can be more debilitating (Marge, 1994, 1995; White et al., 1994). It also has been suggested that people with severe physical disabilities experience “secondary disabilities” or health complications that are not a direct result of the acquisition of disability, but reflect longer-term effects of changes in function (Foley, 1995; Marge, 1994). There has been some debate as to whether these changes reflect duration of disability or the “premature effects of aging” (see, for example, Turk et al., 1995). Either way, such changes form some of the myriad of environmental and personal factors mentioned in Chapter 1 as influencing the balance or equilibrium that underlies empowerment (Clark, 1989). The following discussion illustrates the impact of living with a longstanding disability on empowerment and confirms the view of Stoller and Gibson (1994) that minority groups of older people experience obstacles often constructed earlier in the life course that can become handicaps to well-being in later life. The baby boomer cohort of people with longstanding disabilities has many life experiences that affect their attitudes toward service provision and their ability to negotiate service systems. Many people have experienced deinstitutionalization, have been active in the human rights movement, and have experienced barriers and reduced access to opportunities such as employment, community acceptance, friendships and close personal relationships. These disadvantages throughout life have cumulative effects on well-being, empowerment and quality of life in old age (Ashman & Suttie, 1995). These people are less able to build up financial security and do not have the necessary life skills for making decisions and exercising freedom of choice. Many are not financially able to retire or are anticipating a lower quality of life and less freedom of choice as compared with others in old age. Many have experienced reduced access to the recreation, leisure and community activities used by other older people (Bigby, 1992). Thus, inequities in access to opportunities throughout life deny people aging with
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longstanding disabilities the security, well-being, sense of empowerment and experiences that others expect from old age. This results in increased vulnerability, feelings of powerlessness and low self-esteem (Ashman & Suttie, 1995). AGEISM The term ageism has been coined to refer to attitudes and stereotypes about a particular age group within the population. Ageism refers to generalizations and misconceptions about age groups in our society, with these stereotypes being particularly marked and negative with regard to older people. Such misconceptions are dehumanizing and form major societal impediments to empowerment. They influence expectations within the community of older people and beliefs about their preferences, capabilities, weakness, reactions and personalities. Ageism results in the tendency to see all old people as alike and to overlook differences between individuals. Hoyer (1996) argued that ageism is reflected in the common view that older people are a burden, contribute little and are largely dependent on the finances of others. Smith (1997) added to the stereotype the commonly held beliefs that growing older is associated with increased dependence, loss of selfcontrol, social isolation and disengagement from life. Ageism, discriminatory practices and attitudes are said to permeate every aspect of the lives of older people in many Western countries (Picton, 1992). Prevailing attitudes determine the treatment and quality of services offered to older individuals (Koenig, 1995). They influence the behaviors and decisions of policy makers, health and community care agencies, and service providers. They impede the extent to which older people are able to feel in control of their own lives and make choices, and so impact on empowerment and well-being (Sherman, 1993). Older people themselves tend to embrace ageism more than young people. A lifetime of messages from others means that, by the time a person reaches old age, negative beliefs are firmly entrenched and have the effect of creating a self-fulfilling prophecy, in that the individual comes to believe and act in accordance with them. The result is limitations in horizons, opportunities and freedom of choice. Ageist attitudes also affect a person’s willingness to seek treatment for conditions that can be alleviated, because it is assumed that they just a part of old age. Ageist attitudes are prevalent among older people, the service providers who work with them, policy makers and the general community (Gething, 1999b). For people aging with longstanding disability, the effects of ageism are compounded by the negative community attitudes toward people with disabilities that they have experienced throughout their lives (Gething, 1994, 1999b). If society is to foster empowerment among its older members
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with a disability, it must implement strategies to address negative attitudes toward aging, older people and people with disabilities. FREEDOM OF CHOICE Essential to the concept of empowerment is freedom of choice, which is often denied to people aging with long-term disabilities. Limited freedom of choice is particularly evident in decisions made about where to live and with regard to the receipt of services and supports necessary to maintain independent living. Aging in place implies that people are free, if they choose, to remain in particular residences they now occupy and to interact with their peers who have similar interests and experiences (Australian Council for the Rehabilitation of the Disabled [ACROD], 1997). It seems that many people aging with disabilities are denied this fundamental component of empowerment and usually regard entering a nursing home as unavoidable, whether or not this is their preferred living option. They anticipate that independent living in the community will be impossible once their caregiver is no longer able to provide support and without the availability of increased levels of care provided at affordable prices (Gething & Fethney, 1998). As Cooper (1996) reported, “Concerns have revolved around what will happen to them if something happens to their spouse (who is also aging), or if their physical support needs increase to the point where they can no longer manage at home” (p. 1). In Australia, government policies of cost-cutting through reduced availability and increased costs of services, together with the cumulative effects of lifelong disadvantage, act to reduce freedom of choice for people aging with longstanding disability. The nature and structure of programs and government agencies also act as barriers to empowerment. As already indicated, programs have not evolved to meet the needs of people aging with disabilities. Existing structures in many countries hamper effective service delivery. Boundaries between services, poor communication and territoriality of services are wasteful and add to the difficulties encountered by consumers when trying to navigate their way around service systems. Crewe (1990) cites a need for greater coordination between services in order to enhance opportunities, to reduce the fragmentation of the service system and to remove the traditional chasm that has existed between service providers in aged care and rehabilitation. In many countries, funding programs for aging and disability differ in ways that impact on eligibility and availability of services. For a start, they usually operate under different philosophies and objectives: The emphasis in the aged-care area typically is on “healthy or successful aging,” whereas for disability it focuses on “citizenship” and minimizing the effects of disability. Minkler (1990) argues that these different philosophical boundaries
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must be bridged if appropriate services are to be provided for people aging with a disability. If services are to meet needs, they must advocate concepts of wellness and the presence of disability must not be equated with deficits and lack of wellness. It must be acknowledged that it is possible to age successfully with a longstanding disability. Furthermore, widely used definitions of healthy or successful aging need reworking to ensure that they include aging with a disability. Healthy aging is generally defined in terms of the maintenance of mental, physical and social health (Battersby, 1998). Butler (1991) defined successful aging in terms of four types of fitness—physical, intellectual, social and purpose. Physical fitness refers to bodily strength, resilience and ability. Intellectual fitness refers to keeping the mind engaged and active. Social fitness involves forming and maintaining significant personal relationships. Purpose fitness refers to having positive feelings of self-esteem and control over one’s life. It can be argued that such definitions reinforce prejudice against older people with disabilities (Office on Disability, 1999). Concepts—particularly of physical and intellectual fitness—need to be redefined in order to acknowledge that it is possible to age successfully with a disability. In order to achieve the above paradigm shifts, radical steps are required to change the attitudes and knowledge of professionals. Education is required to enhance understanding of issues associated with aging with a disability and in separating out the effects of aging from those of having a disability. As Tremblay et al. (1997) noted, professionals are not fully informed about issues associated with aging with a disability. This lack of knowledge, combined with negative attitudes and beliefs (ageism) form impediments to empowerment because they create situations in which older people receive less than optimal treatment, and are not provided with opportunities for treatments or therapies that could address physical and mental changes in functioning, which are wrongly assumed to be an inevitable part of aging (Gatz & Pearson, 1988). QUALITY OF LIFE Quality of life is closely linked with empowerment. The literature demonstrates considerable overlap in definition of these concepts. Thus, Brown, Bayer and Brown (1992) and Goode (1994), argue that freedom of choice and empowerment are underlying structures within quality of life models, while Cummins (1997) argues that definitions of quality of life generally incorporate notions about people’s needs and choices within the context of well-being. Like so many other terms, quality of life is a term that forms part of the rhetoric of politically correct professional language and thinking. It is easy to use the term without thinking about what it really means or about whether well-meaning professional behaviors designed to enhance quality of
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life actually have detrimental effects on empowerment because they can limit a sense of control and freedom of choice. Quality of life is a broad-ranging concept that incorporates physical health, emotional health, social and economic relationships, and personal beliefs (Cummins, 1993; Shalock, 1990). Narrower definitions emphasize objective or normative characteristics, such as income and social status, or focus on illness or disease as the sole determinant of quality of life. Broader definitions, such as that proposed by Cummins et al. (1994), argue that quality of life is “a universal, multidimensional construct which includes an individual’s personal values in determining the level of satisfaction with various aspects of life conditions.” A succinct description given by Skantz et al. (1992) is that “quality of life is a person’s own subjective evaluation of his or her life situation.” By examining quality of life, the older person’s own evaluation of his or her life quality becomes the prime measure. The focus is on the client’s view of his or her life situation, not that of the professionals. This means that health and welfare programs that aim to enhance empowerment and to promote quality of life should do so on the client’s terms and in terms of the client’s values, not the currently dominant values within service provision. This view involves a paradigm shift for professionals in many service providers and agencies who think they “know best” or that clients “don’t know what’s best for them.” Thus, concepts of empowerment and quality of life can be seen to conflict with traditional models of service delivery, which prefer clients who do what they are told and do not question decisions made by professionals. Clients who question may come to be regarded as “difficult” and “challenging.” Behavior that reflects a person’s efforts to gain control over his or her environment may be regarded as a threat by those administering service programs (Brown, Bayer & Brown, 1992). Concepts of quality of life and empowerment demand acknowledgment of diversity between clients and the need to be flexible in implementation of services in order to meet individual needs. Such flexibility is difficult when governments and service agencies are implementing policies designed to conserve resources. According to Cummins (1993) seven life domains are important in any assessment of quality of life. These are: material status, health, productivity, close relationships, safety, community activity and emotional well-being. The Comprehensive Quality of Life Scale (Cummins, 1993) measures these domains in two ways. An objective scale is based on societal norms and a subjective scale requires respondents to indicate their importance and satisfaction with each life domain. In this way, respondents’ perceptions of their lives can be compared with their actual life circumstances. Research conducted in Sydney, Australia, by Gething, Fethney and Blazely (1998) explored quality of life for older rehabilitation patients following hospital discharge. Results indicated that actual (objective) and perceived (subjective) quality of life both fell during the three months following discharge. The
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greatest impact on subjective quality of life was experienced one month following discharge. After this time, subjective quality of life began to improve, but at three months was still lower than that at hospital discharge. Comparison with other samples (Ferris, 1993; Fogarty, 1994) revealed that the objective circumstances of older people following hospital discharge were comparable with other older Australians. However, subjective circumstances were substantially lower, suggesting that the experiences of hospitalization, discharge and having a condition requiring treatment and rehabilitation had major impacts on quality of life. Furthermore, perceived quality of life was significantly related to perceived confidence in carrying out daily activities. In this project, perceived confidence was a more accurate predictor of quality of life than the standard measures of function and mobility widely used by health professionals when planning hospital discharge. The conclusion was reached that rehabilitation of older hospital clients must build up a person’s functional ability to carry out the activities of daily living, but must also build up confidence in order to ensure that older clients do not become housebound because of lack of confidence. Such a situation would mitigate against participation and reintegration into community life. Thus, the process of empowerment must build upon the client’s perceptions of what is important in life and perceptions of her capabilities. Reliance on professional assessments over client perceptions of ability and desired goals of treatment is likely to work against success in rehabilitation. Such an approach to rehabilitation is less likely to equip the older person to resume life in the way she would like and impedes the achievement of empowerment. This study demonstrates the importance of considering the personal perspectives of older people. It is important to include strategies in treatment programs that enhance the extent to which older people feel they have control over their lives. This factor underlies the success of rehabilitation, perceived well-being and the ability of the person to make maximal use of their remaining abilities. The project demonstrates the interplay of a complex array of factors associated with empowerment and how these can impact on health and well-being. It demonstrates why it is important for health professionals to take a holistic view regarding the well-being and recovery of their older clients. QUALITY OF LIFE, EMPOWERMENT AND INTELLECTUAL DISABILITY The nexus between empowerment and quality of life raises particular issues for people with intellectual disabilities, many of whom have lived most of their lives in situations where they have little sense of control or freedom of choice. When discussing issues for people with intellectual disability, em-
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powerment is defined as a “process by which individuals gain mastery over their lives and critical understanding of their environments” (Zimmerman et al., 1992: 7). According to Koenig (1995), in this context empowerment is associated with movement from a rule-oriented to context-oriented formats. He views the context of empowerment for people with intellectual disabilities as a combination of factors that enable people to exercise personal influence and to perform valued roles. Writers in the intellectual disability field have tended to blur the boundaries between the concepts of empowerment and quality of life. Koenig (1995) argues that the most powerful components of empowerment are autonomy, interdependence and social responsibility, while Koenig (1995) and Shalock (1993) argue that quality of life for people with intellectual disability relates to dignity, well-being, and functional competence along with growth and personal fulfillment in spite of frailty and disability. FAMILY AND INFORMAL CAREGIVERS Any discussion of empowerment, quality of life and well-being of older people with longstanding disabilities is not complete without reference to the life situation of family and informal, unpaid caregivers. The presence of disability impacts on the life of many people, not just the person with a disability. In countries such as Australia, the United States, Canada and the United Kingdom, spouse, family and friends play an indispensable and largely invisible role within the community. Family/informal/unpaid caregivers are the major providers of community-based services for older people. It has been estimated that in Australia they provide 74% of all services to people needing care and support. In comparison, paid welfare and health workers provide 26% of the community-based care (Australian Bureau of Statistics, 1993). Without unpaid caregivers, many older people would have to be institutionalized and community care as we know it would collapse. Caregivers make a very important contribution to our community in financial terms. They also make a vital contribution in terms of a person’s psychological outlook and overall well-being. By looking after someone within the community, a caregiver is enabling a person to live in his or her own home, in familiar surroundings, and near friends. As Hanger and Sainsbury (1997) concluded, the main factor influencing successful return to the home following hospital discharge is the presence or absence of a live-in caregiver. In this regard, the presence of a family or informal caregiver is a vital factor facilitating the achievement of empowerment and well-being. A considerable body of research indicates that caregivers themselves need more attention and “care” from others and that the experience of caring negatively impacts on well-being and their sense of empowerment. Research conducted by Payne and Erlich (1998) indicates that the majority of care-
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givers experience high levels of stress as a result of their caring. Schofield (1998) reported that over one-third of caregivers have significant health problems, said they felt exhausted and had little time for themselves. Schofield (1998) also reported that feelings of resentment were mingled with a sense of purpose and satisfaction for caregivers: “You love them and yet you feel trapped.” Feelings of helplessness also were reported by many caregivers, as were depression, loss of independence, guilt over neglecting other family members and physical strain. The caring experience negatively impacted on family relationships and resulted in a neglect of friendships. Thus, being an informal caregiver can impact on quality of life and wellbeing. It also can restrict freedom of choice. Taking on the caring role may mean that a person has to forgo full-time employment. This can result in major changes in life circumstances, as opportunities for career progression disappear, income is decreased and the likelihood of financial security is diminished. For those who continue to have paid employment, difficulties are likely with regard to juggling paid work and unpaid caring responsibilities. The caring role also can reduce freedom of choice, in that caregivers may have little time to pursue their own personal interests or life goals. Caring may mean ongoing, unremitting work for 24 hours a day with few breaks or personal time. It may restrict social life and involvement in community activities. Many caregivers report that isolation and loneliness are the most difficult aspects of their lives (Schofield, 1998). Service providers and the wider community must not overlook the impact that caring can have on a sense of empowerment in the caregiver. In designing and providing services, it is important to consider the life situation and needs of both the caregiver and the care recipient. The way most service programs are currently set up means that service providers tend to place greater focus on the care recipient and only consider the needs of the caregiver in terms of what is required to assist the person in her caring role. As Edgar (1995) noted, community care options provided by government and professional agencies should take into account the needs of caregivers, who should be included in planning and evaluation. In a similar vein, Askham (1997) argued that strategies to empower caregivers should be implemented to support them “through needs-led rather than service-led programs, and offering choice and active participation in decision making” (p. 6). CONSUMER INVOLVEMENT AS A KEY TO EMPOWERMENT Gibson (1991) sees empowerment as a transaction between the older person and the service provider. Diversity among older people with disabilities and their caregivers must be acknowledged and services must be tailored to meet the needs of individuals and particular groups. A prerequisite to em-
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powerment is a relationship between client and professional in which each values the other’s expertise and knowledge. Previous generations of older people were more willing to accept an unequal relationship between the “expert” professional and the “passive” client or patient. But, as a result of their long experience of frustration, many baby boomers with disabilities and their caregivers are less willing to be passive recipients of care and strongly believe that service providers have a responsibility to listen to them. People with disabilities, like others, are entitled to opportunities for choice and control over their lives (Brown, 1993). However, two major barriers mitigate against this. First, many people with longstanding disabilities lack the skills necessary to exercise freedom of choice because of a life of diminished advantage and opportunity. Limited access to community life and to learning life skills through “the school of hard knocks” mean that many of these people have not developed the skills necessary to be informed consumers or to make informed decisions about important life events. Second, attitudes and knowledge levels of service providers make them resistant to change. In Australia, most service providers and government agencies are still operating within Moody’s (1976) “social service” model of support, as described in Chapter 1. This model proposes four stages in approaches to service provision and legislation. The “social service” model represents the second stage and is an advance in thinking over the first stage (“rejection”). Services in the second stage are paternalistic and based on the assumption that older people are “needy” but cannot be expected to make responsible decisions. The service provider is seen as the “expert” who knows best. The following scenario, reported by consumers in consultations conducted by Gething (1999a), is consistent with the above description of services operating at the second stage. Consumers reported that service providers assumed that they knew best and that the client was not well informed. They reported a negative and frustrating history of dealing with service providers who did not listen to them and who gave authoritarian— often incorrect—predictions (in regard to the negative impacts of disability, negative expectations of declining health, and loss of ability to function independently) that never materialized. Consumers also said that service providers failed to benefit from the tremendous expertise that most consumers have developed with regard to their conditions and bodies. People with longstanding disabilities have often had substantial experience with health care providers and with service systems (Crewe, 1990). However, many professionals are reluctant to recognize the expertise that these individuals and their families have gained from a lifetime of managing disabilities (Brody & Morrison, 1992). An illustration of this reluctance lies in the statement made by Brock and Wartman (1990) in their discussion of the risks for older people following hospital discharge. These
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authors made the comment that respecting a person’s right to selfdetermination does not “mean accepting their apparently irrational choices” (p. 1597). Such a statement reflects thinking that is contrary to the empowerment model and does not recognize or respect the expertise and values of the older client. It is time for professionals to move aside from their own set of values and priorities to look at the experience of discharge through the client’s eyes. By doing so, service delivery personnel, such as those involved in Brock and Wartman’s study, may come to realize that choices that seem apparently irrational to them, make sense when considered in terms of the priorities and goals of the client. Many service providers seem reluctant to adapt to changes sought by those in the baby boomer generation who are aging with a disability. Their way of thinking conflicts with the wishes of consumers. It also is in conflict with government policy that emphasizes consumer rights. Emphasis on independence and rights is characteristic of the third stage of Moody’s (1976) model, the “participation stage,” which is built on the assumption that being active in, and accountable for, one’s own care is important and valuable. This thinking rests on a view of dignity, social integration and the selfdetermination of older people. In the Australian context it is promoted by government in its focus on consumer consultation, community-based living and acknowledgment of the importance of regular assessments of needs of both the person with a disability and his caregiver (New South Wales Ageing and Disability Department, 1998). However, although it is a feature of government policy, the participation model is yet to become an integral and genuine part of service delivery in Australia and many other countries. “Self-actualization” is the most advanced stage of service provision according to Moody (1976) and is demonstrated by a system where people have a true sense of power over their own lives. This situation is still a long way off, but is conveyed in the following principles espoused by the Australian Council for Rehabilitation of the Disabled (1998): • Older people with disabilities have the right to access services and to receive support that maximizes their independence and function. • As people with disabilities age, they have a right to maintain their independence and their capacities, as individuals, to participate in the community.
GOAL ATTAINMENT SCALING Goal attainment scaling (GAS) is a strategy that could facilitate the move toward self-actualization. It has been applied in rehabilitation settings for older people and is presented here as a model for a wide range of programs and services delivered to older people. This method shows considerable promise for including older people as an integral part of the decision-making process because it involves them in setting goals and evaluating outcomes
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of programs of treatment or care. Its advantages are that it achieves genuine consumer involvement in the design and evaluation of a program of care or treatment; it is a vehicle for adapting care to suit individual needs; and it encourages a multidisciplinary group of professionals to listen to their clients and to work together in the implementation of a care plan. These features were all found to be lacking in the study of in-hospital rehabilitation treatment of older people, mentioned earlier in this chapter (Gething, Fethney & Blazely, 1998). GAS was originally developed over thirty years ago by Kiresuk and Sherman (1968) to evaluate the results of mental health and other rehabilitative measures. Rockwood (1994) argues that it is particularly useful with regard to rehabilitation programs for older people because it is flexible and can take into account the complexity of health issues presenting in a single older individual. These two features provide major advantages over traditional methods of evaluation that tend to focus on a restrictive number of outcome measures and that may not necessarily be relevant for the particular individual. According to Rockwood (1994), traditional approaches run the risk of emphasizing the wrong few measures and of distorting the evaluation. Goal attainment scaling reflects the problems and needs of each individual client. In GAS, up to five outcome goals are developed by the client and professionals who work collaboratively in the design stage of the treatment program. A scale is then attached to each of these statements in order to provide a subsequent measure of the extent to which the goal has been achieved. Stolee et al. (1992) argue that GAS provides a direct method of assessing the amount of change brought about by an individualized program. It provides a clear statement of what the program is intended to accomplish and also a structured assessment of the level of attainment reached in relation to the goals outlined at the beginning of the program. It involves the participation of all parties and provides a positive environment for bringing about change. According to Smith (1994): GAS not only can serve to organize and focus treatment, it can, by openly communicating the goals, marshal the help of others in reaching those goals. Clearly specified goals generated by a patient and therapist, and shared with other staff, can facilitate the mobilization of staff energies into a more coherent pursuit of relevant, feasible outcomes. Therapists working with outpatients have reported fewer misunderstandings early in treatment when they employed GAS. Additionally, some have cited the client’s greater involvement with and commitment to the treatment process. (p. 3)
GAS has been demonstrated to be effective with older people (Stolee et al., 1992) and has been shown to achieve satisfactory levels of reliability and validity (Rockwood, 1994; Stolee et al., 1992). It is currently being used in Sydney, Australia, in a project being conducted by the author with funds from the National Health and Medical Research Council. This project is
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evaluating the application of GAS with older people at two major hospitals. One is a large general hospital where patients aged over 55 years in the orthopedic ward are being invited to take part in the project. All these people have been admitted to the hospital for total hip or knee replacements. The other hospital specializes in geriatric rehabilitation, with patients presenting with a wider range of medical and health conditions, including hip and knee replacements, cardiovascular accidents and fractured neck or femur. These people are older in age and present with more medical or health complications than do participants from the general hospital. For both hospitals, there are two main data collections, involving a control and an experimental group. The control group receives rehabilitation therapies as currently practiced, while the experimental group receives current therapies plus the GAS intervention. Participants in the experimental group set goals in collaboration with a goal setter. Participants nominate at least two goals that must be realistic and achievable within the time frame of the project. Goals are then disseminated to all involved staff and addressed during rehabilitation. To date, goals set by the patients fall into four broad categories: mobility; reduction or removal of pain; return to social activities and hobbies; and resumption of activities of daily living. Mobility goals were the most frequently nominated. At the time of writing, the project was still under way. At the three-month follow-up stage, over 80% of participants from both hospitals had achieved at least the expected level of their mobility goal. Some success also has been demonstrated in terms of achieving goals related to pain reduction. Rehabilitation has been less successful in achieving social goals. On the early results of this project, it would seem that GAS is effective in steering rehabilitation so that it is tailored to suit the priorities and needs of older patients, at least in terms of mobility goals. It is also providing direction for modifying the nature of rehabilitation strategies in order to address other priorities for older people, such as social goals. It is hoped that the increased use of Goal Attainment Scaling will provide a mechanism to help service providers move one step closer to the ideal of the selfactualization model of empowerment of older people. CONCLUSION This chapter has demonstrated the impact of a range of factors that act as impediments to empowerment. The focus has been on issues for people aging with longstanding disabilities, although many of the arguments can be readily generalized to older people in general. It is important to recognize the impact of government policies and professional practice on empowerment, well-being and freedom of choice. Policies and practice that appear on the surface to be in the interests of the older person, if implemented without consideration for each individual’s particular
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life situation, can inhibit empowerment and well-being. Rhetoric and policies that look admirable on the surface may actually act against the interests of the consumer. For example, the decision to discharge someone from the hospital should be based on the readiness of the individual and not the hospital’s goal of freeing up a bed or the insurer’s goal of saving resources. The planning process should take into account the impact of discharge on others; for example, whether early discharge places undue demands on the spouse or family and thus interferes with their quality of life and freedom of choice. Unfortunately, insufficient consideration is given to the consequences of early discharge and the move toward greater community care that can adversely affect the well-being and health of informal, unpaid caregivers. If not taken into account, this increased burden on others (who often are frail themselves) will thwart the intention of governments to reduce costs, because it detrimentally affects family caregivers. Ageism and lack of knowledge among the community and service providers act as impediments to empowerment, in that they result in the assumption that an older person is frailer and less competent than often is actually the case. These misconceptions restrict opportunities and may mean that older people are not given access to services and treatment that could greatly enhance their well-being. A lifetime of messages from others means that older people themselves are often the loudest advocates of ageism and negative beliefs about aging. These beliefs limit horizons and so restrict freedom of choice. Older people with disabilities experience a range of additional impediments to empowerment that reflect a lifetime of reduced opportunity and decreased ability to build up financial security. In old age, many have few options with regard to lifestyles and housing. Terms such as “freedom of choice,” “empowerment,” and “quality of life” form part of the rhetoric of socially and politically correct language. These terms are often used by service providers and by older people themselves. However, it is debatable as to whether many fully understand what the terms mean or their implications for professional practice. Genuine uses of a model of empowerment, such as those described in this book, will require a substantial paradigm shift in the thinking of professionals, in professional education and in models of service provision for older people. Goal Attainment Scaling is a method that has considerable potential for encouraging professionals and their clients to rethink their values and to promote the principle that professionals and clients should work together to enhance empowerment.
PART V
OVERVIEW AND THE FUTURE
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Empowerment in Pathways Through Care: A Cross-National Comparison of Care Delivery Systems in Britain and Germany Michaela Schunk
INTRODUCTION This chapter analyzes and compares determinants of processes of empowerment in local care delivery systems in Britain and Germany. It pursues the argument that the goal of increased personal autonomy and individual decision making, which is highlighted in the discussion of empowerment of older people with long-term care, is contingent on options and constraints in the care delivery systems—“Choice in welfare appears as a complex, iterative process whose rationality can only be understood in the context of social and institutional settings within which decisions are made” (Klein & Millar, 1995:321). A case-study approach has been adopted, comparing two countries and two cities. This approach yields much needed micro-level data and advances greater understanding of the process effects of welfare state arrangements (Alber, Esping-Andersen & Rainwater, 1987). A closer look reveals considerable variations between countries, both in the nature and working of the “social state” and in the organization of welfare provision. This chapter will demonstrate that because of institutional variation, frameworks of empowerment for older people with long-term care needs turn out to be very different across countries and societies. Micro-Level Comparisons It is important to recognize that the effects of institutional welfare state arrangements and public programs on the processes of empowerment can-
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not be tapped by a focus on the national level only, which is the view taken so far by most cross-national studies of elder care (see Tester, 1999, for an overview). What is missing in research and literature is a closer study of care provision at the local level. This may provide far more understanding than overviews at a national level, because it is anchored in the perspective of the individual in a particularized environment, at the micro-end of care regimes. It is here that entitlements and rights, but also expectations and choices, are transformed into care arrangements. In order to analyze and compare care provision I use care options as an operational concept. Care options describe differences in service range and quality and the nature of individual control and choice over care arrangements. In the foreground of this examination of care options stand the study and comparison of pathways through care in one city in each country— Manchester in Britain and Nu¨ rnberg in Germany. The pathways denote the sequence of care arrangements that an older person with a specific illness is likely to experience, and they are exemplified by using constructed cases of a stroke patient and an Alzheimer’s patient. The pathways are, by definition, constrained by the particular welfare mix environment of a specific locality. Service organization, benefit packages and assessment procedures are crucial factors in service availability and access. Different modes of access to care-related benefits and availability of services are revealed. Service provision, in its range and organization, is shaped differently by institutional arrangements and by the local welfare mix environment. Within this framework, I will explore how elderly people and their caregivers can exercise choice and control. To promote empowerment for people using health and social care services, policies that aim at enhancing participation, collaboration and inclusiveness are of central importance (Townsend, 1998). Others have advocated the aim of overcoming personal dependence on family members and/or dependence on state or charitable agencies, as a universal goal of social policy (Anttonen & Sipila¨, 1996; Dalley, 1988; O’Connor, 1993; Oliver, 1989). This would turn control over care arrangements to the people with disabilities and, thus, enhance their empowerment. Estes, Caspar and Binney (1993) call for an increase in the availability of health and care services as well as for policies that reduce inequalities in access based on age, gender, race and class. Availability and equitable access to long-term care services are central to the empowerment of people with disabilities; they are also key to promoting gender justice by reducing the need for informal caregiving, which is mainly performed by women. Recent reforms across a number of countries have introduced policies that can be seen as building a stronger framework for empowerment in care delivery systems. The new policies foster community-based forms of care provision, more individualized care arrangements and support for informal caregivers (Baldock & Evers, 1991; Hennessy, 1997; Jamieson, 1996).
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However, a simultaneous growth of rationalization, privatization and marketization of long-term care services has been identified. It has been argued that these developments may impose severe constraints upon processes of empowerment because they aggravate failures in the care delivery system (Estes & Swan, 1994; Walker, 1995). The narrow orientation toward disease and acute medical interventions in the care of older people has been described as the “biomedicalization of aging” (Estes & Binney, 1988). For example, formal services rarely meet personal and social care needs, even though chronic illness in old age is characterized by such needs. Furthermore, little emphasis is given to rehabilitation and possible recovery from illness in old age. Such failures in care delivery reinforce structural dependency in old age, against which the “empowerment imperative” stands (Estes, Caspar & Binney, 1993). Following the call for micro-level studies, the approach taken here is to look at two local care delivery systems that constitute and structure care arrangements in two countries, and to compare them in terms of which options and constraints they convey related to the processes of empowerment of older people with long-term illnesses. Previous studies have shown that long-term care (LTC) provision is embedded in national health and social security systems and in the frameworks of regulation, finance and delivery (Walker, Alber & Guillemard, 1993). Health system legacies affect the range and organization of medical services, while regulation more specifically affects the form, extent, quality and costs of service provision (Alber, 1995; Wiener, 1996). National and Local Context Important differences can be found between the health and social services systems of Britain and Germany and, for this reason, their comparison is particularly interesting. The health system in Britain is tax-funded, while in Germany it is social-insurance driven. Moreover, LTC provision in both countries offers a view on new policy developments and, possibly, change. Both Britain and Germany underwent the implementation of important new policies concerning care provision and the public share of care costs in the first half of the 1990s—the 1990 National Health Service and Community Care Act in Britain (implemented in 1993) and the Care Insurance Legislation in Germany in 1994. In Britain, financial responsibility for elder care services has been transferred to the local level, although some benefits and an allowance for institutional care is contributed by the national social security scheme (Glendinning, 1998). Germany now operates a non–meanstested “middle tier” benefit scheme for long-term care costs, both for home care and institutional care (Schunk, 1998). Britain and Germany differ as to the provider mix between public services, private services and services run by third-sector/voluntary sector organiza-
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tions, which is a reflection of the historical alignment of welfare provision in each country and the actors involved in public policy making (Kuhnle & Selle, 1992). Germany’s longstanding “institutional subsidiarity” principle has given third-sector welfare organizations a primary role in the provision of services and this is responsible for the dominance of the voluntary sector in welfare provision in Germany (Lorenz, 1994). This contrasts with Britain and its history of public sector welfare provision. Recent legislative changes in both countries have invited a more diversified and more market-driven provider mix (Baldock, 1993). Very little empirical work has been done on the question of how service delivery itself is affected by differences in institutional frameworks and longterm care policies. At the level of service delivery, the respective provider mix has a major impact, for example, in terms of different provider cultures, diversity of service provision, but also in terms of the need to coordinate the development and organization of services (Evers & Svetlik, 1991; Room & Perri, 1994). Provider spectrum, service types, levels and service organization need to be examined to see how responsive service provision is to diversity and meeting local needs. Moreover, the effects of and the interaction between, the particular provider mix and regulative and financial arrangements need to be examined—at the local level—regarding how they affect service planning, coordination, costs and quality and, hence, facilitate empowerment. The findings reveal substantial impediments in the way and degrees to which older persons can exercise control over care arrangements, and in the care options that are available. A new picture emerges of distinct types of rationality and social value systems in the two countries. These frame care options and affect groups of people with LTC needs in different ways, depending on their resources and versatility in dealing with the respective “cultures of care.” More generally, the findings highlight the importance of a more detailed look at the national and local institutional context of service delivery for improved understanding of the frameworks of empowerment for older people with long-term care needs. METHODOLOGY Because data structures are very complex, at national as well as at local levels, a case-oriented qualitative methodology was chosen. Each case was viewed as a combination of characteristics reflecting the specific sociocultural context. Smelser (1976) speaks of this method as a “systematic comparative illustration” for studies with a small number of cases. The scope of the comparison is confined to two countries and cities to permit a detailed account of distinctive features. Localities are interconnected with national patterns of provision, regulation and finance of care services embedded in wider institutional arrange-
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ments, policy programs and social welfare cultures. However, “to be certain that the differences found between, for example, two cities in two nations arise out of cross-national differences in structures, it is therefore necessary to [provide] a detailed national context” (Ungerson, 1996:65). National and local case studies inform and substantiate each other; they illustrate how national and local policies come together and give an indication of local variability in each country. The data collection on the national level drew to a large extent on secondary literature and documentary material with the aim to describe national service developments, provider structures, regulation and funding arrangements. Abstract and theoretical accounts of elder care in each of the two countries were collected from various sources, as well as executive and legislative statements of national and local governments, and social statistics. The data collection at the local level used a combination of sources: analysis of primary documents, participant observation and interviews. The document analysis covered information on services and service providers of elder care, and drew to a large extent on directories, local reports and surveys. Statutes and regulations of agencies and service providers provided insight into the organization of services, as well as assessment and documentation forms. A sampling frame for interviews and services to be visited was drawn up for each city, based on knowledge of local structures. Interviews were conducted with health and social care providers, local public and para-public agencies dealing with LTC benefit claims and bodies involved in local elder care service planning. A two-stage research design in both cities was used. The first stage produced a comprehensive overview of welfare mix patterns by constructing a service provision map, charting the range of service, service levels and costs across the local geography. In the second stage, interviews were coded and analyzed as to any information about service provider and delivery characteristics, such as position, ethos and organization of service providers by provider sector, as well as about the coordination and planning of services at the local level. Data from the service provision maps and interviews provided the empirical basis from which processes and organization of care service delivery in the two cities could be compared. Model cases were constructed according to medical needs in order to consider the interaction between service availability and access from the perspective of the individual elder person in closer detail (Schunk, 1996). The first case considered an older person who had suffered a stroke and was in need of rehabilitative treatment. The second case examined the situation of a person with Alzheimer’s disease. Clearly, these profiles are not representative of all elderly people with care needs. However, both diseases lead to a wide range of different health and social care consequences and exemplify two of the most common diseases of old age (Go¨ rres, 1992; Vetter et al., 1999).
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The value of using constructed cases for research into complex social phenomena is that it allows for systematic variation of a number of factors thought to be influential for the research problem, and to study the relative impact of different combinations of these factors. The method bears some similarity to the vignette technique, which has been used in a number of studies (Finch & Mason, 1993; Soydan, 1996). A similar technique—that of model families—has been employed in recent studies of the social security system to illustrate how welfare systems operate and to approximate the performance of welfare systems in terms of welfare outcomes (Bradshaw et al., 1993; Eardley et al., 1996). CASE STUDY FINDINGS This comparative study will show that care options for older people with long-term care needs in the local care delivery systems differ significantly as to availability, range and access to services. First, we will consider impediments in service availability and access. Differences in the medical service trajectories and funding of health systems in Britain and Germany are shown to impact upon the availability of rehabilitative and psychogeriatric services at the local level. Second, impediments in assessments and care management procedures will be compared. Assessments play a pivotal role in the establishment of eligibility for LTC benefits and services. Together with care management practices, they also constitute gatekeeping for service access and thus impose constraints upon care options. Both assessment formats and care management have been laid out very differently in the newly implemented LTC policies in Britain and Germany, and this study will show the effects of this on care options and pathways through care. Third, impediments in service organization and the provider mix are shown to differ significantly between the two cities, Manchester and Nu¨ rnberg, according to the different purchaser/provider models and differences in the regulation of care service provision. Service and provider profiles, however, also reflected local policy guidelines and particular local histories of welfare provision. Service organization and provider patterns not only affect individuals’ pathways through care, but also constitute the context for local service planning and quality control. Differences in service diversity and in the responsiveness of local care delivery systems to address local needs and shortfalls will be exposed and their impact upon care options discussed. Impediments in Service Availability and Access Model Case 1: The Stroke Patient After the treatment of acute health needs in the hospital, the stroke patient is in need of rehabilitation services that are quickly accessible and pro-
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vide a flexible input of services according to the individual’s medical needs. There is little difference in availability and access to acute hospital care between Manchester and Nu¨ rnberg. However, differences clearly appear when looking at the decision-making process involved in obtaining rehabilitation services and the type of services available. The admission to specialist rehabilitation is more medically oriented in Nu¨ rnberg than in Manchester. Rehabilitation clinics in Nu¨ rnberg are separate from hospitals and reimbursed for their services by sickness insurance (with copayment per diem). Screening for admission to rehabilitation in Nu¨ rnberg prioritizes patients with good chances of recovery. Thus, older stroke patients with good recovery chances are more likely to get fast admission to intense rehabilitation services in Nu¨ rnberg than in Manchester. In Manchester, rehabilitation is part of hospital services and free of charge at the point of delivery. Each of Manchester’s three hospitals had rehabilitation beds or units in 1995, some making the distinction between “fast stream” and “slow stream” rehabilitation. Allocation of rehabilitation services in Manchester is determined by multidisciplinary teams, including doctors and nurses and the paramedical professionals working in the hospitals. In the interviews, rehabilitation therapists said that good recovery chances were regarded as important, but not the ultimate priority for access to rehabilitation. Slow-stream rehabilitation with relatively minor service input was provided to patients with lower recovery chances. Depending upon the therapists’ workload, rationing measures, such as waiting times or upper limitations in service inputs per case, were common. It was found that although the level of rehabilitation beds was higher in Manchester (counting “fast stream” rehabilitation only), service intensity appeared to be generally lower than in the specialized rehabilitation clinics in Nu¨ rnberg. In the German health system, rehabilitation services can also be prescribed by the doctor, reimbursed by sickness insurance and supplied by paramedical professionals in the community. Although the sickness insurance funds need to approve the doctor’s prescription, this is less dependent upon good recovery chances than inpatient rehabilitation, and is usually granted following the doctor’s prescription. In Manchester, services may continue on an outpatient basis through attendance at a “day hospital,” a service attached to each of the hospitals’ rehabilitation units. In addition, small paramedical teams were identified in each day hospital for community services. Size and organization of these outreach teams varied across the three Manchester hospitals. However, waiting times and rationing of service input according to the therapists’ workloads were frequently mentioned related to community rehabilitation services in Manchester. Overall, rehabilitation services for stroke patients after discharge from inpatient rehabilitation, either at the hospital or at a rehabilitation clinic, appear to be critically less available in Manchester than in Nu¨ rnberg. In conclusion, impediments to service availability and access for elderly
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stroke patients in the two exemplary cities closely relate to differences in service types and provision as well as funding modalities in the two countries’ health systems. Older stroke patients in Nu¨ rnberg have a higher availability of rehabilitation services in the community and of high intensity rehabilitation services, compared to stroke patients in Manchester. Access for inpatient rehabilitation, however, appears less equitable in Nu¨ rnberg. Model Case 2: The Alzheimer’s Patient As a result of wide differences in the onset and severity of the illness, Alzheimer’s patients have less standardized ways into care and more diverse care needs. Arguably, their access into care is facilitated by the primary physician model of the British National Health Service. In Manchester, the person’s general practitioner (GP) may assess and diagnose the illness at a regular checkup appointment or when being consulted by family members. The GP usually refers the person to the outpatient psychogeriatric clinic in order to obtain a specialist/consultant opinion. Outpatient psychogeriatric clinics are part of hospital services and attached to each of Manchester’s three hospitals. In Nu¨ rnberg, by contrast, the point of entry to see a general or specialist physician is less focused or coordinated. Because in the German health system any doctor can be consulted, much depends upon the patient’s and/or the family’s own initiative. Crucial differences in the availability of community-based services for Alzheimer’s patients were found between Nu¨ rnberg and Manchester. Alzheimer’s patients in Manchester can draw on a wide range of psychogeriatric services, both center-based and home-based. For specialized care, Old Age Psychiatry services operate as part of hospital services and have as core workers Community Psychiatric Nurses (CPNs), who assess new patients, provide regular checkup visits and coordinate/monitor the care arrangements. Furthermore, all hospitals in Manchester operate psychogeriatric day hospitals, to which an Alzheimer’s patient may be referred. Several small-scale voluntary sector services in the community provide respite care services to caregivers of Alzheimer’s patients. Services available to Alzheimer’s patients in Nu¨ rnberg comprise only the standard home care/home help organizations. They can also attend the (relatively few) day care centers, whose users are typically older persons with dementia and/or mental health problems. However, staff are not specifically trained to respond to their needs; there is no such training available in Germany. The only service specifically oriented to Alzheimer’s disease in Nu¨ rnberg is an information service for caregivers run by a voluntary sector organization. New developments in the 1980s and 1990s have led to the establishment of psychogeriatric day hospitals at the two district psychiatric hospitals, located at some distance from Nu¨ rnberg. However, not only is geographical distance a problem, but also provision levels are very low compared with Manchester. In sum, by delineating the pathways through care
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of Alzheimer’s patients, the impediments exposed were the relative lack of specialized services and of professional guidance in Nu¨ rnberg, compared to Manchester. The comparison of impediments in service access and availability has shown that while the German health care system allows for greater availability and faster access to rehabilitation for stroke patients, the British National Health Service encompasses a wider range and more coordinated care in the case of the Alzheimer’s patient. The latter difference marks the impact of the relative prominence of geriatrics and psychogeriatrics within the United Kingdom (Tinker et al., 1994), which led to a significantly broadened and more specialized service range for older people with mental illnesses such as dementia (including Alzheimer’s disease) and depression. The former difference exemplifies the German health care system with its orientation toward acute treatment. Sickness insurance is part of a highly stateregulated system of social insurance programs, where beneficiaries have the codified right to receive covered benefits once eligibility has been established. By law, service availability must also be guaranteed by the respective sickness insurance funds. The health system in Britain, by contrast, follows a service-based approach and does not operate with individual entitlements to services. However, in Germany, sickness insurance entitlements for rehabilitation services for older people still have the status of optional benefits, contrary to rehabilitation services for people of working age. In a similar vein, psychogeriatric services in Germany are optional insurance benefits, and sickness insurance funds make discretionary decisions as to whether or not to grant them. Access to rehabilitation and/or psychogeriatric services is thus impeded, in Germany, by restrictions in entitlement, and, in Britain, by limitations in service levels. Impediments in Assessment and Care Management Procedures Long-term care policy and legislation in both countries under study have established one central assessment, which aims to establish the extent and severity of long-term care needs. In Britain, this is the Community Care Assessment under the 1990 National Health Service and Community Care Act; in Germany, it is the Medical Board Assessment, following the 1994 Care Insurance Legislation. Both Community Care and Medical Board Assessments constitute the gatekeeping mechanism to institutional and community-based care services in the countries concerned. However, there are important differences in the formats of the two assessments, which limit the pathways through care in a number of ways and thus may act as impediments to empowerment. The Medical Board assessment in Germany is standardized and applied in the same format nationwide. The single and uniform definition of care dependency and its different
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degrees of severity in Germany preclude regional variation in the criteria of eligibility and assessments, although it does not eliminate variation entirely (Jonas, 1996). This contrasts with the local procedures and criteria of the Community Care Assessment, drawn up by each local authority in Britain. As a result of this, significant regional variations have been identified (Department of Health, 1998). Once the Medical Board assessment in Germany establishes eligibility for care insurance, this leads to benefits that are codified rights for the caredependent person. Unlike this, evidence of care needs established through the British Community Care Assessment does not constitute any right to a service. Instead, the assessments in Britain aim to measure service need and, subsequently, to determine eligibility for public coverage of care costs through a financial assessment. While the charging policies of British local authorities vary with regard to home care, the financial assessment for residential or nursing home care mirrors the means test for eligibility for general public assistance, at a poverty threshold set by central government (Wittenberg, 1999). Costs for LTC services in Britain, otherwise, require out-ofpocket payments or private insurance. The care insurance benefits in Germany are, by contrast, non–means tested but have a ceiling for each level of assessed care dependency, after which out-of-pocket payments are required. Apart from issues of standardization, codification and means testing, the assessment in itself is quite different. Considering the screening procedure related to receiving a Community Care Assessment in Manchester in some more detail shows that much of the substance of the criteria are linked to crisis responses. In fact, the Community Care Assessment is particularly called for, and its criteria are most clearly defined, for two situations: first, the hospital discharge process; and, second, when admission into institutional care seems likely. This also applies to assessments for informal caregivers, who in Britain are entitled to request an assessment of their respite care needs. The more acute the risks of breakdown of the caregiver, the more prompt the assessment and service input. The focus on acute care needs in Community Care Assessments in Britain, it can be argued, is a disadvantage for people with mild to moderate disabilities—such as the early stages of Alzheimer’s disease or long-term impairments following a stroke—who only need a small measure of support. Service access for them is likely to be impeded by longer waiting times for the assessment, and very often service providers, in their own assessments, will prioritize people with more acute care needs higher. In Germany there have been concerns that older people with cognitive impairments are generally disadvantaged in the Medical Board Assessment, because guidelines are less specific as to how to assess their care needs (Kliebsch & Brenner, 1995). Although mental health needs are explicitly included in the assessment guidelines, there has been much criticism that
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Alzheimer’s patients’ care needs are commonly underestimated in the assessment (Evers, 1996). Thus, the comparison of impediments in the access to services related to assessments indicates that in both countries these may disadvantage Alzheimer’s patients over stroke patients. There are different reasons for this: In Britain, restrictions most affect those with less acute care needs, including early stage Alzheimer’s patients. In Germany, assessment instruments may give more weight to physical limitations and thus restrict care insurance benefit eligibility for older people with psychogeriatric impairments. Another set of impediments to empowerment concerns the role of care management in the care delivery systems. Care management is notably absent in the German system. There, the Medical Board assessors (commonly doctors or nurses, employed by the Association of the Care Insurance Funds) do not have any role beyond the assessment of needs, such as care planning or mediation of interests. In the Nu¨ rnberg case study, it became obvious that people with care needs were likely to become highly dependent upon the decision making of their informal carers and/or on the interests of service providers. On the contrary, care planning and mediation are tasks for the care manager in Manchester (who may be the Community Care assessor or another member of the municipal social service team). Depending on their knowledge and contact with services, care managers in Manchester may facilitate varied and flexible care arrangements. However, it has been pointed out that the interests of a care manager as an advocate for an older person easily conflict with her or his knowledge about what services are available or where resources are scarce and managers control resource allocation (Caldock, 1995; Cornwell, 1992). Due to the involvement of a care manager in Manchester, the selection of particular services emanates from a negotiation process rather than being an individual choice. Moreover, the care manager is the ultimate decision maker if there is a public share of costs. There may be choice in the selection of services too, but this choice is not extensive (with few exceptions, e.g. choice between three institutional homes). In addition, every single provider of services in Manchester carries out specific assessments in addition to the Community Care Assessment and may have waiting lists or other measures to ration service access, which additionally limits choice. By contrast, the care insurance program in Germany divorces the assessment for benefit eligibility from the selection of services, which is entirely up to the individual. Service providers do not assess the person, but carry out tasks that are of either a medical nature, in consultation with the person’s physician, or a combination of personal care/home help tasks defined by the older person, in conjunction with informal caregivers and service staff. The care insurance program also gives each beneficiary the choice of benefits in cash or benefits in kind (or a combination of both). Every beneficiary then decides which combination of benefits best suits his or her needs. In
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contrast, the cash-benefit for care in Britain, the non–means-tested attendance allowance is taken into account in the financial aspects of the Community Care Assessment and has to be used to cover service charges. Overall, the impediments to service access in Britain and Manchester ranged from regional variation in assessment criteria to the discretionary nature of service allocation. As regards decision-making processes in the pathways through care, the main difference is that of managed pathways through care (with some elements of individual choice) in Manchester versus individual choice in selecting the benefit package in Nu¨ rnberg. However, the absence of a care manager in Nu¨ rnberg was also shown to be a likely impediment to empowerment for people who possess little control over their pathways through care when decision making is taken over by family members or service professionals. These findings provide a basis from which to explore and further define the difference between the assessment culture in the British care regime and the entitlement culture in the German care regime and their empowerment consequences. It is apparent that these different types of rationality and social value systems regarding service access, are key determinants of care options and impediments to empowerment in elder care. Impediments in Service Organization and the Provider Mix Service organization and the provider mix must be studied together when looking at care arrangements and pathways through care, as they are presented to the individual. Each locality has a particular set of service and provider types, often dependent upon the area of residence. The provider profiles in the two cities vary with each type of LTC service—home care, day care and institutional care services. Area-specific variations in service availability lead to differing degrees to which older people can exert individual choice in service and provider selection in the two cities. Further impediments arise through differences in service organization, which are closely related to underlying purchaser/provider models. Care services are offered by a wide range of providers in Nu¨ rnberg, with many provider organizations operating either citywide or with branches (e.g., churches in every area of the city). Service delivery is organized in a relatively “horizontal” or “flat” manner and service elements are standardized because of the fee-for-service funding approach. For almost every service type in Nu¨ rnberg there is a variety of provider organizations and identities, ranging from nonprofit, such as parish-based church services, to for profit. With individually held entitlements to service provision as part of the care insurance program, there is free choice as to which provider is approached. However, when the service of one’s choice has no spare capacity, other services may have to be approached to bridge the waiting time. Less provider variety but more variation in service types can be found in
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Manchester. The much higher presence of geriatric and psychogeriatric specialists and their respective services in the health system have already been mentioned, and this is of particular importance for differences in the pathways through care of Alzheimer’s patients. However, there are area-specific variations in the availability and organization of services, and service capacities seem to be severely constrained in some areas more than in others. Services in Manchester (with the exception of institutional care and private care services) generally operate within a specific catchment area and are not accessible to residents of other parts of town. The municipal social service department runs by far the largest share of home care services, with various offices throughout the city. Voluntary sector input consists of small-scale, specialized services, such as caregivers’ support services, home and day-care services for minorities and a variety of statutory and independent information and advice services. For public and voluntary sector home and day-care provision, it is usually not possible for the older person to approach a service in another area of town in order, for example, to receive additional service input or to switch to another service. This can be considered as a closed or vertical service organization, which does not allow for side entries. From the point of view of the user, this results in a more limited choice between, and choice in, access to services. Each of the two types of service organization—the horizontal and the vertical service structure—is shaped by historical trajectories in provider patterns (both at the national and the local level), as well as by underlying purchasing models and by the relation between the local state or authority, and service providers. Service providers in Nu¨ rnberg are dependent on relatively distant purchasers, which mainly determine service specifications, contracting and price fixing, and leave service planning and quality control to the providers themselves. By comparison, service providers in Manchester are under far more direct influence and purchaser-led control regarding service types, range, costs and also quality control at the local level. Service planning in Manchester can be characterized as localized, both in the health sector and in the social service sector (including home care and day care services, as well as a range of publicly funded voluntary sector support services). As a result, service provision is more varied and responsive to local needs in Manchester than in Nu¨ rnberg. Older people in Nu¨ rnberg, whose needs are not met through mainstream services, experience impediments in service availability, in particular. This mismatch is likely to occur, for example, because of social and cultural barriers. Service delivery patterns in Nu¨ rnberg appear to be tightly related to providers’ interests, especially financial incentives. Unlike in Manchester, there is little surveying of local need and little data to inform providers about unmet needs. Quality assurance policies regarding care services in Nu¨ rnberg were found to be discretionary and rather a neglected function of the local administration. In fact, legislative change to improve quality assurance in
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care provision is a prominent policy issue in current debate in Germany (Nakielski, 1999). Alber (1995) points to the negligible influence of citizens and consumers in service planning and quality assurance, both at national and local levels, as one of the main reason for the limitations and gaps in care service delivery in Germany. CONCLUSION This comparative analysis of the pathways through care and decisionmaking processes has exposed a number of main differences in the form and extent to which the individual older person can exercise control and choice. These relate to different welfare state institutional arrangements and underlying models of service availability, organization and access, which reveal important impediments mitigating against the empowerment of older people at national and local levels. Comparing Britain and Germany, considerable differences in the availability of rehabilitative and psychogeriatric services were found. Older stroke patients may find it easier in Germany to access fast-stream rehabilitation because of the health system’s orientation toward acute medicine and the entitlement-based reimbursement system. The two countries differ, as well, with regard to the position of the older person in assessment and care management procedures. Service organizations follow either a vertical or a horizontal mode of community-based delivery, with local provider mixes that differ in the relative strength of public, voluntary and market sector shares. The range and diversity of service types is greater in Manchester, but service access is constrained there through assessments of various kinds. In Nu¨ rnberg there are less diverse and responsive services, but also fewer constraints to service access due to the nature of the care insurance benefits, which are individual entitlements. These findings have identified important determinants for the increased empowerment of older persons. One of those is equitable access to care services; another is the quality of such services. Both Britain and Germany, for example, must deal with questions of the extent of publicly financed services on the one hand and their quality and costs on the other hand. This includes the critical question of the extent of state regulation on providers to guarantee equitable provision to all. Furthermore, problems of medicalizing elder care and compartmentalizing care between various services—in particular, between health and social care services—lead to inadequate and provider-led service delivery in both countries. Giving frail older persons much more choice and control over their care arrangements, that is, empowering them more, implies first an increase in the availability of sustainable care arrangements beyond the unpaid labor of informal caregivers or facility-based care, and second, service delivery that is not provider-led but rather responds to users’ needs in innovative and flexible ways.
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The comparative nature of this study enabled us to explore how some of these impediments to empowerment may be overcome. We have indicated that a broader range of health services works better for older people with chronic and multiple care needs, as the example of health services in Manchester showed, particularly for older people with mental illnesses. The results also illustrate opportunities for the greater empowerment of older people and care providers within specific sociocultural contexts. For Nu¨ rnberg, one could usefully consider some of the advantages of pronounced local service planning such as is the case in Manchester, where a substantial variation in service provision was identified. On the other hand, Nu¨ rnberg offers lessons for Manchester. There is more provider variety in Nu¨ rnberg but more variation in types of services in Manchester, and stronger individual entitlements in Nu¨ rnberg. Care-dependent older people in Nu¨ rnberg have considerable choice between service providers and a high degree of autonomy in determining the form of their care insurance benefit under a uniform national framework of rights and rules. However, there is more individually differentiated guidance on care arrangements in Manchester. Greater involvement of users and caregivers in the organization and delivery of services, and the separate inclusion of informal caregivers in assessment procedures are some of the resolutions in the local welfare mix of Manchester to overcome low expectations and a sense of helplessness toward service availability and access. In the German care regime, much attention is directed at the standardization and consolidation of care insurance at the national level. For the individual elderly person, this provides, on the one hand, a high degree of equity across geographic areas with regard to uniform eligibility criteria, the codified right to receive covered benefits, and service availability. On the other hand, there is little opportunity for older people with care needs and their caregivers to voice their concerns and to shape services and delivery systems accordingly. The entitlement culture in Germany and the assessment culture in Britain both still reinforce the influence of provider-and societal-based impediments on the structural dependence of older people with disabilities and their carers. Future research into empowerment must continue to pay attention to individual and micro-level patterns of welfare and care arrangements. Theoretical approaches and the associated methodology using model cases and small locality research within cross-national research is still in its infancy. The findings of this study offer valuable insights into the options and constraints related to care options at the national and local level. Further research is needed to continue to apply this framework to other regions and for other groups of users of care services, and to provide an improved understanding of the complex linkages between policies and political and institutional structures.
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Empowerment of Frail Elderly People and the Vision of a Self-Actualized Society Duncan P. Boldy, Mary E. McCall, and Leonard F. Heumann
In this book we have set out to explore the concept of empowerment as it applies to frail elderly people and then to consider the various impediments to and opportunities for achieving increased empowerment, related to housing, health and support service delivery. Our overall approach has been, first, to define and discuss key concepts related to empowerment; second, to present a classification scheme delineating impediments; and then, third, to illustrate, via case studies, a variety of programs which, individually and/or collectively, provide multiple or, at least, partial opportunities to increase empowerment for frail elderly persons. However, much still remains to be achieved if we are to change a society’s attitudes and values regarding frail elderly people away from one of paternalism toward one that accepts the unique dignity and worth of each individual citizen. It is the purpose of this chapter to review some of the major impediments discussed by the various authors and then to consider future opportunities for solutions related to these impediments. But, first, we shall review the larger societal context in which empowerment can or cannot happen successfully. Moody’s model of changing social values, introduced in Chapter 1, is eloquent in its simplicity and accuracy at representing the continuum of attitudinal platforms for designing and providing care and support over time. Moody defined four stages of support and care by society: (1) the rejection model, (2) the social service model, (3) the participation model, and (4) the self-actualization model. In this book we have seen that all advanced soci-
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eties have evolved past the rejection model stage and developed extensive social service models with numerous professions and government agencies dedicated to maintaining and perfecting norms of practice in the delivery of support and care. The case examples presented throughout this book have argued that the more institutionalized the government programs, regulations and the professional practices, the more control of support delivery is placed in the hands of the care and support professionals, and thus, the more difficult it is to empower the care recipients. It is our conclusion that empowerment of frail and disabled people is no more possible under a highly politicized and institutionalized social service model of care than it is under a rejection model. Moody also states, and we agree, that most advanced societies are currently in transition from Stage 2, the social service model, to Stage 3, the participation model, where it is possible to introduce concepts of client empowerment into social welfare planning and programs. However, in most cities and localities of the developed world, we are still laboring at the entry point into the participatory age of support care. We see relatively few frail and disabled people seeking the right or displaying the will to take control over their care provision. We also see few government funding agencies or regulators, formal care professionals, or informal family-care providers encouraging such action through education of consumers, or by directly relinquishing their control and power over support service delivery. The very concept of “participating” in plan making and program implementation implies a continuum of degrees of involvement and thus empowerment. In a society still largely embracing social service institutions and professional control of care delivery, what we are often “offering” as empowerment today is a far cry from what society is capable of providing for frail and disabled people. There are still few real choices among programs or meaningful flexibility within programs, let alone full control over support service delivery. As Moody has envisioned, we would like to see a further evolution to the ideal fourth model—a self-actualized society. Such a society would be completely devoid of social prejudices and willing to govern its actions in such a way that all persons are empowered to the margin of economic resource limits tempered by individual needs and desires. If there is one common message the authors of this book present, it is that impediments to empowerment are still the norm. There is a feeling when the general public in many developed countries is polled these days that human or civil rights movements are no longer needed. There seems to be a feeling among the middle classes that we have passed appropriate laws and leveled the playing field of life for women, people of color and elderly and disabled people. But those of us who have been working to break down the old institutions protecting the power bases of the social service status quo know that the exemplary models and examples of empowerment presented in this book are the exception not the rule, and that
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true enlightenment and change have been, and will continue to be, very slow. The case examples of programs and service models we have presented describe increased empowerment of frail and disabled persons. These cases are not only the exception to the rule; they also face constant battles to prove themselves superior to the old social service models and struggle for funding and recognition. These case solutions are, as the authors of Chapter 7 call their group of affiliated members, the “salmon” swimming against the stream of accepted practices. We are still just entering the participation stage and its hope for empowerment of elderly and disabled people, and the battles being waged are no different from any other human or civil rights struggle for equality of power. Just like the movements fought by women and people of color, we have our examples of successes and some signs that some fields and institutions of “care provision” are taking heed and starting to change. But the message that is echoed through this book is like the other struggles: After an initial spurt of success, progress has slowed up considerably and many cases of outright resistance to empowerment are becoming evident. The successes are still the work of isolated “revolutionaries” both among the people in need of support who are willing to seek power over their care provision, and revolutionaries in the professional service fields willing to relinquish power in order to become more effective and enlightened providers. PRIMARY IMPEDIMENTS TO EMPOWERMENT In Chapter 2 we presented a classification scheme of four major groups of impediments under which 27 specific types of obstacles to empowerment are grouped. The four major groupings are: (1) provider-based limits; (2) environmental limits; (3) client-based limits; and (4) societal-based limits. For this concluding chapter we went back through the case examples in the book to find what we feel are the primary impediments, one from each of the four major groupings of impediments in our framework. Provider Impediments Provider impediments cover the actions of the medical and social service professionals, and the government agencies, which create the social service policies and programs. Governments also assess and evaluate what they deem to be good practice, and tend to fund practices that follow the established procedures. The medical model is still dominant here, and the medical model sees disability and frailty as deviations from the norm, so care is designed to reduce the gap between the norm and the pathology. This often means providing a secure and comfortable environment and providing prescribed types and levels of care based on the degree and type of disability or frailty. At its worst, it is a total inhibitor of empowerment of the individ-
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ual to define the environment of care and support that will maximize personal functional independence and allow a lifestyle that yields the greatest satisfaction and dignity. Medical and welfare experts and professionals are, by definition, people who “know what is best,” and at their worst they are threatened by the empowerment of the people they are trained to care for. They dominate their clients and encourage dependence and acquiescence to their prescriptions for care, thereby encouraging the atrophy of independent thinking and living. They sometimes even discourage informal input by family and friends. When this is the norm in society, empowerment is not just discouraged, but it no longer becomes an option or concept that older people with growing dependencies even consider. At their worst, medical and social welfare professionals will oppose new and innovative projects to empower frail and disabled people because such practices are seen as an attack on their standards, their authority and their power. They can even be seen as efforts to make their role and practice inconsequential and redundant. Thus, the biggest provider impediment is the need for a paradigm shift in beliefs, attitudes and practices of service professionals. The irony is that, in the projects included in this book, each and every one of the service professional roles remain as important as ever, taking on new more creative and dynamic functions as support planning becomes more individualized. True, they cannot rely on standardized and categorical solutions, so their job becomes harder, but they also become jobs worthy of their professional title. We saw in the chapters by Boldy and Grenade (3) and McCall (4) that it is possible for providers to use new approaches to assessing the needs of their clients. Carmichael (12) and Gething (13) demonstrate poignantly the need for a shift in perspective by professionals who deal with traditionally underrepresented groups—the persistently and severely mentally ill and those with longstanding disabilities. Harvey (10) and Kodner et al. (11) give us examples of the creative ways they have challenged the status quo of provider predominance by adopting a more personcentered service design and delivery. Professionals such as these, who are pioneering such an empowerment shift, are finding that there are actually new roles and skills for them to learn and develop. But, after years of acquiescence to professional authority, many frail and disabled persons and their families are afraid of empowerment. Therefore, the proactive professionals must see their roles as becoming advocates and teachers, educating and training elderly and disabled people and the general public to this new way of thinking and acting. They face a very insecure public, many of whom are vital informal care providers, who must learn that the recipients of care actually have preferences about how and when care provision comes into their lives.
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Environmental Impediments There exist a wide range of environmental barriers to independence and, thus, empowerment of frail and disabled people. There are also many simple adaptations and physical devices that can be brought into a private home that can minimize or eliminate the need for human intervention and service delivery for people who value privacy and independence from human support as the epitome of empowerment. The vast majority of seniors want to age in place in the conventional preretirement housing they have always known. Owning that home is empowerment, managing and running that household is empowerment. They don’t want to have to be dependent on visiting service providers who take over more and more tasks and decisions and come more and more at their own convenience. Empowerment and dignity mean honoring their independence as much as possible, even to the point of some undercaring and reasonable risk taken on the part of the frail and disabled homemaker, by choice. The major impediment in the environmental arena is when those who are expert at adapting the environment are underfunded and understaffed in favor of one categorical solution—community-based human service delivery. Even where both care services management and environmental service management exist in the same community, funding streams often dictate categorical service delivery and prohibit full coordination of and cooperation between various care providers. Developing options that blend environmental solutions with human service solutions, so as to meet the frail or disabled person’s desire for both privacy and human contact within a preferred lifestyle, becomes almost impossible. Heumann (8) and Stafford (9) illustrate clearly the deficits in awareness and knowledge of the range of options available to persons in their homes and communities. Carmichael (12) and Gething (13) also illustrate the additional severe constraints the physical environment can place on those who are dealing with mental or physical constraints already, thereby undermining efforts to maximize the degree to which empowerment can be achieved with these groups of older persons. Similarly, Currie et al. (7) demonstrate the difficulties in securing the cooperation of funding agencies, noting the focus on the outcome, not the process by which that outcome is achieved. This elegantly illustrates what Schunk (14) calls structural dependency—the focus of funding systems on maintaining the current system and therefore taking a program-based rather than a needs-based approach to services. Client-based Impediments The most important client-based impediment to empowerment is the loss of confidence and self-esteem that comes with a loss of independence from
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living in a support environment that does not encourage people to continue to seek independence to the margin of their ability. All of the contributors to this book are fully aware of the paradox here, which is that any program or strategy that society develops to empower frail elderly people must also recognize that some older people will consciously choose dependence. We are clearly for programs and practices that are sensitive to this choice and have the flexibility to accommodate it as equally as providing full empowerment. From our perspective, however, it is the empowerment model that our societies are having real trouble fully addressing, not dependence by choice. A number of the chapters in this book deal with seniors whose skills at independent living have atrophied and whose will to be in control of their lives has waned. Often these are people who have taken on victimization traits. They no longer know how to ask for help, much less remain in charge of the amount of help and how it is delivered. These are people who are too polite or too afraid to object or register a complaint when a care provider graciously and with the best of intentions steps in and takes over a task or decides to make a change in the home environment. It doesn’t matter if the environmental change is the most innocent and temporary, like opening a window, or a permanent room rearrangement. If it’s not wanted and the client is powerless to complain, the effect is the same. A related issue here is that of how to validly assess what a frail older person does want when she may not be able to envision it for herself, let alone feel confident to communicate it to others. Several authors have addressed the topic of valid assessment of client needs and desires. Just as Anme (5) has done in Japan, Boldy and Grenade (3) have developed and validated an assessment instrument for use in Australia’s care system. They have noted obstacles such as the fear of stating one’s honest opinions about care (especially to those who are providing the care), and the complications of proxy information. Carmichael (12) and Gething (13) also address these issues of assessment when discussing their special populations of older persons. Davies (6) offers a unique, macro-level perspective on the issue of validity and measurement, asking what it is that we, as a society, are really trying to achieve. In other words, what does real empowerment “look like” when we try to measure it? If the experts are not sure, can we legitimately expect elderly people to have a clear concept of it? The fact that frail elderly people typically do not ask for empowerment is the most often quoted reason that empowerment isn’t wanted or requires only trivial modifications in care management patterns. This has been the argument by defenders of the status quo at the onset of every single human or civil rights movement, but it is in fact the biggest obstacle to empowerment because it signals the need for the most fundamental change in human relations. Many of the contributors to this book have given examples of this acquiescence to the substantial power of a care manager or provider.
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The successful examples of awakening a desire for individual empowerment on the part of passive care recipients is a dynamic, circular process, requiring the reinforcing of trust, education and experimentation between care recipients and providers, which very often must be initiated through the encouragement of the care provider. Societal-based Limitations The last type of impediment, societal-based, as the previous sections suggest, is the most fundamental obstacle to overcome. Society must get over its fears of aging and its remaining stereotypes about the aged. This means that our goal is not docile, happy and secure people with disabilities. Our goal is to meet the wishes for support and values for independence through empowerment, providing flexible choices and training and explaining the options and risks associated with different choices. Beyond this, there are no institutional norms, no prescribed categorical solutions. Risks, problems and failures on the part of disabled people should not be eliminated, avoided or “solved” for disabled people. Nor should the allowance of risk or problems to exist in individual care planning be seen as unprofessional or project failures. These are essential parts of life being lived to its fullest. We need to define, measure and reward professional caregiving in ways that encourage empowerment in flexible, humanistic and creative ways. If we can’t find these types of solutions, there will never be any real empowerment of frail and disabled people. Table 15.1 summarizes how policy toward frail elderly people relates to Moody’s social value models. If we consider services, as we have emphasized many times, in most cases these are categorical, isolating and segregated; that is, they equate to the ‘social service’ model. Some service providers (such as those described in Chapter 11) have placed an increased emphasis on participation, and we must move away from a service-driven care philosophy toward a person-centered empowerment philosophy, if we are to progress towards self-actualization. Case management models (see, e.g., Boldy et al., 1993) typically espouse such an empowering care management philosophy (see social actions advocacy in Table 15.1). But, as Sykes (1995) emphasizes, we must devote more energy and resources into removing the “barriers that exclude older persons, and then get out of their way” (p. 47). As already indicated, perhaps the greatest barrier is ageism itself. As Table 15.1 indicates, self-actualization is only really possible when society values all people highly. This means that frail and disabled people would be fully engaged to the margin of their capability and desire, and that care responsibility would be holistically integrated into the life cycle processes, and conventional housing would be adapted over time to support need. While empowerment is partly external and about reducing or minimizing impediments, Donelan (1995) reminds us that there is an internal side as
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Table 15.1 Changing Societal Responses to Aging in Policy and Action
*Moody, H. R. 1976. Philosophical presuppositions of education for old age. Educational Gerontology 1:1–16.
well: It also “resides within the psyche.” The Oxford English Dictionary states that empowerment means not only “to give power to” but also “to make able.” Until society loses completely its ageist aspects, we are unlikely to see frail elderly people “made able” or “self-actualized,” so that they can follow the example of Napoleon, who “when about to be crowned head of the Holy Roman Empire, took the crown from the Pope’s hands and crowned himself” (Donelan, 1995).
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COMPETING GOALS: COSTS OF EMPOWERMENT Any change from an existing model to a new model involves new costs that didn’t exist under the status quo. As the previous section suggested, a fully participatory model that includes the empowerment of frail elderly people means setting new, more flexible standards and forms of service delivery, and retraining of care providers. It also means the creation of new types of care providers, new programs and even a greater variety of program types, as well as new problems in gauging demand and costs of over- and undersupply. With a change in power and responsibility, there are added costs, at least during the transition from one type of equilibrium to another. Costs result from such disequilibrium, stress and confusion as roles, rights and responsibilities are redefined. In Chapter 6, Bleddyn Davies set out to measure what it means to maximize empowerment of elderly people as part of a community care reform program. He shows that, in the particular reform program he studied, maximizing empowerment means sacrificing length of stay at home with maximum secure care. He also points out the attendant cost of not relieving the stress on informal caregivers. Both of these are real costs, at least in a transition period as care providers and recipients redefine security and stress relative to freedom and empowerment. There are real opportunity costs and real inefficiencies that are introduced by the uncertainty and confusion of a major change in power and support delivery program design. Not everyone is happy with the change, and not everyone fully understands what changes have been set in motion, how a new equilibrium will look, and when it will be established. All this produces real costs, both in the financial sense and from a wider social cost framework. Nevertheless, it is our belief that these costs are warranted. The quality of life, the quality of human interaction, the satisfaction with and dignity of the roles of both care recipient and caregiver will improve as a result of maximizing empowerment over care delivery for frail elderly people. A new equilibrium of service delivery efficiency will evolve. This does not mean that some people who were totally satisfied with the previous model won’t suffer long-term or even permanent costs. Elderly people who thrive in a dependent role that maximizes their sense of security in home-based care may, at the very least, feel threatened and stressed by a program that offers more choices and decisions, whether or not they take them. Similarly, for some informal caregivers, more control and power over care delivery might be seen as the way to relieve their stress, so that the dynamic negotiations introduced by increased service delivery choices to the care recipient will not imply only chaos and more stress for them. It is our belief that a great deal of care provider and care recipient stress is the result of the manifest inequality in care planning and delivery decisions that characterize past programs. This should sort itself out as caregivers and recipients learn new
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Table 15.2 Concepts of Empowerment and Key Implications
appreciation for and gain gratification from their roles under this more progressive system. Nevertheless, we must acknowledge that there are real and substantial costs to this or any social adjustment process. OPPORTUNITIES FOR EMPOWERMENT In Chapter 1, we examined the way in which empowerment has been defined, within the context of the four philosophical interpretations of Clark (1989). These, and some key implications, are summarized in Table 15.2. How far has society gone and, more specifically, how far do our case study chapters go, in addressing these key implications and overcoming the impediments we face? And what still remains to be achieved? With regard to empowerment as effective deliberation and moral reflection and as personal process, the interview approach of Boldy and Grenade (see Chapter 3) provides an opportunity for the residents of nursing homes (and the like) to consider their situation, confidentially and in some depth.
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The goal is to identify possible areas for improvement or change. However, the very need for such interviews implies that staff are not sufficiently aware of the views of residents, who are presumably not expected to routinely identify their own personal preferences or choices and are certainly not in control of decision making. Taking consultation and resident input to a higher level, Harvey (see Chapter 10) describes a particular nursing home that has instituted a deliberate policy of putting residents at the heart of life, by emphasizing their rights and their ability to exercise them. A living environment advisor (also known as a residents’ advocate or representative) has been appointed, whose role includes ensuring that the quality of life and living environment of the residents takes precedence over the routines, interests and concerns of the institution. This appointment also relates to the concepts of empowerment as social process and as balance and interdependence, and helps to address a number of the related implications summarized in Table 15.2 (particularly 3a, 3b and 4d). Nevertheless, it is still based on the premise that the residents of institutions need such a special appointee if society is to go some way toward providing them with a degree of empowerment. This is still a long way before achieving self-actualization, which would require, as a prerequisite, a deeper understanding of the reasons why society needs (or at least provides) institutions at all. Part of the answer (or the problem) lies in the adequacy and appropriateness of existing housing and community care programs. In Chapter 4, McCall illustrates the importance for each concept of empowerment of involving older persons themselves in community planning and social processes as well as in their more day-to-day care, with an emphasis on self-care. A key aim is to avoid paternalism and permit informed older people to make wrong and/or unsafe/risky choices (see Table 15.2, particularly 1b, 1c, 2a, 2b, 2c, 3b, 3c and 4d). To achieve this, radical change is required in the training and education of all health and related professionals likely to care for elderly people. Involving nursing students, or other health professional students in projects that provide insight into the value of the life experiences of elderly people—thus instilling the idea of a more equal relationship between patient/client and care professional (see Chapter 4)—is one example related to empowerment as balance and interdependence. Anme (see Chapter 5) considers empowerment related to a society (Japan) that is changing from a family to a community orientation regarding the care of elderly people. In this situation, the main empowerment issues seem to relate to political activism and social process (e.g., 3c in Table 15.2) and balance and interdependence (e.g., 4a in Table 15.2). As in the American situation described in Chapter 4, so in Japan, it is crucial for empowerment that older persons themselves are intimately involved in devising (i.e., owning), the plans and strategies that local communities have been called on to develop by the Japanese national government. Models based on consumer
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institutions (co-ops), which develop their own system of care based on mutual self-help linked to an Empowerment Center, appear to fit well within an increased empowerment philosophy, which other, less homogeneous societies, might learn from. In discussing the reforms to community care in Britain, Davies in Chapter 6 makes the point that independence rather than empowerment per se is the key concept. He also comments that “It is dangerous to overestimate the importance of any one goal, even empowerment.” Davies presents empirical results suggesting that solely maximizing an indicator of empowerment may actually compromise the stated goal of independence (i.e., giving people the opportunity of residing longer with assisted living services in their own homes may be a political goal, not necessarily divorced from financial considerations rather than a philosophical goal of truly empowering frail elderly people). The important message that follows from this is that empowerment should be considered in a holistic context, in particular involving the immediate caring system (formal and informal) and not simply from the older person’s perspective; that is, empowerment as balance and interdependence. After painting a depressing picture of the damaging effects on older people of large institutions—even those with enlightened methods of care— Currie and colleagues in Chapter 7 examine the contrasting role of small housing units and assess their contribution to empowerment. Examples from different European countries are provided, one of which demonstrates that small units (in this case six houses with six persons living together in each house) can provide a viable, cost-effective and more desirable (i.e., “normal”) alternative to institutional care for older people in the final stages of dementia and with the high demands for care. Increased empowerment in this model appears to be mainly related to personal process, particularly 2b and 2c in Table 15.2, but with connections to other elements, such as a paradigm shift by professionals (4d). After posing the question, Why aren’t small units more prevalent? (i.e., compared with institutions), the authors respond that “The answer lies in the tension between the medical and life models, between empowerment and dependency, and the challenges and threats these pose for organizations, professionals, relatives and even older people themselves.” They could have included society in the above list, for surely the challenge is that broad and fundamental. Continuing the theme of empowerment in conventional housing, Heumann in Chapter 8 discusses the provider-based limitations brought about when environmental considerations or adaptations are excluded from the deliberations of care managers. This can be viewed as an aspect of empowerment as “political activism and social process” (e.g., 3a in Table 15.2) and also of empowerment as “balance and interdependence” (e.g., 4d in Table 15.2). In both cases, key factors in improving services would seem to be wider and improved coordination between provider and holistic approach to case management (with patient/client control or, at least, involvement).
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The Evergreen project, described by Stafford in Chapter 9, had as its initial goal the promotion of a “shared vision of healthy urban environments for older adults.” This involved a number of participative strategies to explore the importance and meaning of place within a particular community, with over 800 citizens being involved in one way or another over a 15month period of consultation. In relation to empowerment, this approach is obviously strong on effective deliberation and moral reflection as well as political activism and social process, and provides an impressive model of consultation and collaboration at the planning, and later implementation stages of a community-based aging in place program. In its involvement of younger as well as older persons in the consultation process—“Younger persons should be empowered to offer assistance in helping create healthy elder environments, just as elders should be expected to assist in building community for all ages”—the model contributes to building a healthier ageintegrated and interdependent community. This is strongly related to all four concepts of empowerment represented in Table 15.2 and also to concepts of self-actualization. In Chapter 11, Kodner and his colleagues describe how, in the United States, a consumer-directed philosophy has been integrated into a capitated managed care program, which has a home-based emphasis, catering to people with chronic illnesses or disabilities. Informed consumers participate in assessing their needs, determining how these should be met and monitoring the quality of service they receive. A self-care ethic is promoted and empowerment of family caregivers addressed by taking into account their expressed values, preferences and needs related to the client’s care plan. When conflicts arise, the autonomy of clients outweighs that of families, except where the interests and well-being of family caregivers are a significant consideration. In this latter situation, the staff offer guidance to achieve a mutually satisfying resolution (empowerment as balance and interdependence— particularly 4a of Table 15.2). Only staff who are sympathetic to the idea of client empowerment are selected and such staff are subsequently trained to be sensitive to the consumer’s role and point of view. This case study represents a valuable example of how two apparently opposing concepts— efficiency and professional dominance (managed care), on the one hand, and consumer autonomy and control (empowerment), on the other, can, at least to some extent, be reconciled. Given that managed care as a philosophy is probably here to stay and likely to spread to more countries, the experiences and lessons learned from this United States case study should have broad appeal for those wishing to assess the extent to which selfactualization for elderly people is realistically achievable in such a climate. Carmichael, in Chapter 12, addresses the issues related to empowerment for elderly persons with serious and persistent mental illness (SPMI), a growing group in society. In addition to societal-based impediments and those that are obviously client-based, he identifies provider-based impediments as
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especially important to identify and overcome, including an increased understanding, leading to a reduction in provider ignorance. The implications for the improved training and education of providers, in relation to mental health issues, are not difficult to recognize. Society still appears to espouse a social service (and even rejection) philosophy, rather than a participatory philosophy, regarding its views and treatment of older persons with SPMI. Empowerment as political activism and social process, covering all the areas under this category in Table 15.2, would seem to be a key requirement. The importance of social skills training to help older people with SPMI to cope better with their social disabilities is particularly emphasized. Older people with longstanding disabilities and their caregivers are the focus of Chapter 13. Here, Gething stresses the strong negative effects on this group of ageist attitudes among policy makers and service providers, and even among many older people themselves. This is similar to the group with SPMI, and perhaps constitutes their strongest impediment to empowerment. Goal Attainment Scaling is presented as a methodology related to including older people in decision making and hence as a contribution to empowerment as effective deliberation and moral reflection and as personal process. In Chapter 14, Schunk considers the determinants of processes of empowerment in local care delivery systems. She argues that these are, to a great extent, defined by the options and choices available; that is, empowerment related particularly to political activism and social process—3a in Table 15.2—and personal process—2a in Table 15.2. Based on her two case studies (Manchester in Britain and Nu¨ rnberg in Germany), Schunk concludes that the frameworks required for empowering older people with longterm care needs are likely to vary considerably between different countries and societies; hence, the need to tailor solutions to particular circumstances at the local level. THE MACRO VIEW OF EMPOWERMENT At a recent conference attended by many of the contributing authors, Phil Stafford, the author of Chapter 9, suggested that we might all benefit by taking a macro view of empowerment from three perspectives: consumerism, individualism and citizenship. In its broadest and most ideal form, consumerism might define the protection of the rights to independence and control over one’s life when empowering frail and disabled people. However, consumerism as applied more literally to the support and care of frail elderly people is about honesty in service delivery, fair practices and pricing and improved standards of care. These are all issues, measures and standards that tend to be interpreted if not “owned” by professional service providers or government regulators, rather than by elderly consumers. This is by no means all bad, if it is the enlightened evolution of these norms and standards
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from a social service model to a participatory model of support and care delivery and beyond that toward a self-actualized society, led by these enlightened professionals and government planners. But it is not an approach to empowerment that easily and readily invites input, let alone control, by individual and empowered care recipients. Whereas consumerism tends to get “owned” by institutions, be they professional or governmental, individualism is quite the opposite: From this perspective, the individual’s desires or interests take precedence over the state or any social or professional group. The economic practice in capitalist societies of rugged individualism, when related to empowered frail elderly people, conjures up images of people surviving or even succeeding to function independently without any help, or only with help called on under their terms and using their resources. Short of this extreme, it would mean that we retain the ideals of individualism whenever a care manager or provider plans a support strategy with the full involvement of a frail elderly person. But clearly this model of empowerment stresses the individual and individual choices—made one person at a time—and is devoid of the consequences of social trends or the need to be aware of the wider “public good.” Citizenship suggests not only a compromise between consumerism and individualism, but a higher order of empowerment, at least for citizens in heterogeneous, free market and democratic societies. When such societies are defined ideally, citizens should have access to the greatest variety and most flexible solutions regarding support and care, and therefore be the most empowered. Freedom, education and equality of opportunity are also goals if not entitlements of such open societies. In the U.S. context, the full definition of citizenship is the “status of a citizen with its attendant duties, rights, and privileges” (American Heritage, 1981). The mixture of duties, rights and privileges suggests that individuals must not only seek and preserve their own rights, but they have duties to be cognizant of and responsible to a “public good” as well. Personal empowerment is not an end in itself when linked to citizenship. It encourages us to be both givers and takers of power. It encourages us to temper our care decisions. If we take risks or accept assistance or care responsibilities, we do so by keeping in mind the quality of life, safety and rights of the entire community. Therefore, citizenship-empowerment suggests a self-actualized citizenry and a society that seeks the lifelong empowerment of all people. In such a state, empowerment should not need to be sought as a special right when a citizen becomes a minority or dependent member of society. CONCLUSIONS We have seen progress toward empowerment in society. Elements or sections within medicine, nursing, social work, the therapies, housing and social planning professions, and the like have all shown signs of recognizing the
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importance of empowering frail and disabled people. There has always been a segment of the population that has had the tendency and tenacity toward self-actualization across the life cycle, who have retained this despite advancing frailty and despite social encouragement to disengage and relinquish power to the care providers in society. For the most part, these have tended to be people with more choice options throughout their lives due to wealth, education, personal resources, and a will to fight social norms that contradict their lifestyle and values. With a growing and enlightened middle class, more people who reach old age are willing to assert their rights to self-directed care. But there is a point where, despite the best and most enlightened efforts of individual care providers or care recipients, society as a whole must embrace these values and commit its planning, research and resources to the goal of empowerment of all people. Without such a societal realization and commitment we won’t progress to a higher level of human self-actualization. This is what we do not see happening. As a society, we continue to embrace our fears of aging, to see aging as pathology and not a natural and fulfilling completion of life. Our biological, chemical/pharmaceutical and medical approaches to aging are still focused on the extension of life, not the quality of living in old age. As long as this bias or value persists, we will fail to bring the resources or human creativity to bear on this concern, fail to design environments to facilitate and empower those frail and disabled among us, and fail to fully encourage or support their efforts to empower themselves.
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Index
Accreditation, in residential aged care, 42, 43, 44, 51 Advance planning, and empowerment, 8–9, 11 Aged Care Assessment Teams (ACATs), 123, 125 Aged Care Reform Strategy, in Australia, 29, 41–42 Ageism, 27, 36–37, 140, 205, 208–9, 219, 246, 248 Aging in place, 137, 142, 209 Alzheimer’s disease: assessment of care needs, 230–33; and care management programs, 126. See also Pathways through care Assessment: of health-social professional skills and knowledge, 77–78; of long term care needs in Britain and Germany, 226, 229–31, 234; of residents’ views in aged care facilities, 42– 43, 52, 242. See also Alzheimer’s disease; Consumers’ views; Index of Professional Skills and Knowledge; Stroke patients Assisted living facilities, 120 Authenticity, 5–8. See also Autonomy
Autonomy: contextual, 188; interpretations of, 5–8, 13 Baby boomers, 205–6; and longstanding disability, 206–8, 215–16 Care Insurance Legislation, in Germany, 225–26. See also Social care insurance Care management: in Britain and Germany, 231–34; and empowerment, 236–37; focus of, 129, 186–87; holistic approaches to, 135–36; home and community-based models of in Australia, 123–26, 132–34. See also Community-based care management programs; Environmental adaptations Care managers: awareness of environmental solutions, 33, 131–32, 134; comprehensive, 135; empowerment issues and constraints, 83–84, 126, 105–6, 107; power of, 242; role and functions of, 120, 122, 127. See also Care management; Overcaring; Undercaring
274 Care options, meaning of, 224 Care providers. See Service providers Case management. See Care management Case managers. See Care managers Channeling Projects, 18, 60 Charter of Rights and Freedoms of the Elderly, 35, 163–64, 165, 168–71 Choice, 56, 218; factors affecting, 4, 5– 8, 10–11, 13, 37; and informal caregivers, 213; and people with longstanding disabilities 197–212, 214– 16, 218–19; over care arrangements, 14, 35, 156–57, 236. See also Autonomy Chronic Care Organization (CCO), 177; goals of, 177–79. See also HomeFirst program; Managed care Citizenship, and empowerment, 252–53 Collaboration, public-private, 54–55, 59, 63–64 Community Aged Care Packages Program (CACP), 122 Community-based care, trends in Japan, 65, 66–68 Community-based care management programs: benefits, 132–33; cost effectiveness, 127, 132; limits, 126–27; planning and design issues, 133–34; recognition and inclusion of environmental solutions, 128–32, 243; stated mission, 124. See also Care management; Environmental adaptations Community Care Assessment, in Britain, 231–32, 234 Community development: asset based, 142–43; paradigm for, 150–52 Community Options Projects (COPS), 122 Community partnership, benefits of, 59. See also Collaboration Community planning, for aging in place, 140 Community psychiatric nurses (CPNs), 230 Consultation, benefits of, 58–59
Index Consumer direction, in managed care, 35, 177, 179–83, 185–86. See also HomeFirst program Consumer institutes, 68, 75, 250 Consumerism, and empowerment, 251 Consumer participation, 78, 237; and community empowerment, 70; in managed care programs 180–81 Consumers’ views, problems in assessment of in nursing homes, 43, 158– 59. See also Quality of care Continuous quality improvement (CQI), 42 Control, in managed care, 251; effects of services on perceptions of, 85–91. See also Autonomy Co-ops, 68, 75, 250 Coordination: of care services and management, 191, 249; effects of lack of, 207 Cost: of community-based care and residential care, 122; of environmental adaptations and home help, 132; of life model and traditional institutional care, 117. See also Community-based care management programs Dementia, care and housing for people with, 111–13, 250. See also Alzheimer’s disease; Small housing units Disability: attitudes of service providers towards, 214–16; and healthy aging, 34; life model of, 104; medical model of, 104; people with longstanding, 205, 206, 207–8, 252 Elder cottage, 146 Empowerment: and social policy, 23–24; Center, 73–74, 250; costs of, 247–48; culture, 71; impediments to, 5, 14– 16, 25–26, 27–28, 31–32, 34–35, 37, 241–46; importance relative to other outcomes of community care, 92–97; interpretations of, 4–14, 24, 239; measurement indicators of, 85. See also Autonomy; Choice; Control; Independence
Index Environmental adaptations: benefits of, 121, 131–32; within communitybased care management programs, 119, 121–22. See also Communitybased care management programs; Home modifications Evaluating Community Care of Elderly People (ECCEP) project, 83 Evergreen Institute on Older Adults, 33– 34, 137, 140–41, 251; project design principles, 142 Family caregivers: empowerment of in managed care programs, 183–85; and people with longstanding disabilities, 213–14. See also Informal caregivers Family care system, in Japan, 65–66 Flexibility, and community empowerment, 70 Freedom, in institutional care, 156. See also Autonomy; Choice; Independence; Risk Goal Attainment Scaling (GAS), 36, 216–18, 252 Health Maintenance Organizations (HMOs), 177; Social, 176, 178 Health professionals: attitudes and practices of, 240, 241–42; evaluating skills and knowledge of, 77, 78, 79– 80 HealthShare, Inc., 145–46 Health status and knowledge, relevance to empowerment, 58–59 Healthy aging, and older people with disabilities, 207–8 Home and community-based care: models in Australia, 132–34; programs in the U.S, 179–80; services, 120–21. See also Community-based care management programs; Home and Community Care Home and Community Care (HACC), services, 122–23 Home care, 128
275 HomeFirst program, 177–180; consumer direction in, 180–83; selection and training, 185–86. See also Family caregivers; Managed care Home maintenance, 128–29 Home modifications, 121, 130–32, 144– 45, 150. See also Environmental adaptations Home sharing, 145, 150 Hostels, 60; and outcome standards in Australia, 42 Housing: gerontologists, 121; holistic approaches to, 135. See also Small housing units Human services delivery, bias in care management, 120, 121–22, 128–32 Independence, 4, 82, 97, 121; consequences of loss of, 243–44; definitions and meanings, 7, 82, 121; and empowerment, 247; and health prevention and promotion, 63. See also Autonomy; Empowerment Index of Professional Skills and Knowledge, 77–80 Index of Social Interaction (ISI), 71–73 Individualism, and empowerment, 253 Informal care: and elderly people living in the community, 120; and sense of control, 88–91. See also Family caregivers; Informal caregivers Informal caregivers, 85; empowerment of, 90–91; and people with longstanding disabilities, 213–14; stress on, 247. See also Family caregivers Informal carers. See Informal caregivers Institutional care, and impediments to empowerment, 113–16. See also Nursing homes Intergenerational interdependence, 60, 63–64 “Life Context Advisor,” 7 Life model of care, 32, 103–4, 105, 116–17, 250; benefits of, 113–16; goals of, 104–5; impediments to im-
276 plementation of, 105; requirements for implementation of, 108–9; resident feedback on, 116–17 Living Environment Advisor, 35, 158– 61, 167, 249; approach, 156 Local care delivery systems, in Britain and Germany, 223, 228, 252 Longstanding disability. See Disability Long term care: facilities, 122, 155; policies, 224–25, 231; provision, 224– 25, reforms in Britain, 82–83, 225– 26; reforms in Germany, 225–26; Royal Commission on, 82–83 Managed care, 176–77, 250, 358, 359; compatibility with consumer directed care, 188–89; organizations (MCOs), 176–177, 179. See also HomeFirst program Managers. See Care managers Mechanical devices, use in care management programs, 130, 131 Medicaid, 60, 178, 187 Medical Board: Assessment in Germany, 231–32; Assessors, 233 Medical model, 32, 103–4, 105, 106, 117, 137–38, 139, 241 Medicare, 138, 176, 178, 287 Mental health, service delivery for the elderly, 36. See also Disability; Social disability Mura, 65, 75 Mutual care, 71 Mutual cooperation, and community empowerment, 71. See also Mutual support Mutual support, promotion of, 75. See also Mutual care; Mutual cooperation National Health Service and Community Care Act, 225 “New Golden Plan,” 68–69 Nurses, and care management, 120, 121, 131, 133, 176 Nursing homes, 42, 61, 102, 138, 155, 157, 165; creation of home-like envi-
Index ronment in, 161–63. See also Institutional care Nursing Homes and Hostels Review, findings of, 122 Nursing students, involvement in services for the elderly, 57–61, 249 Older people, attitudes of, 55–57, 62, 72; attitudes towards, 62. See also Ageism; Service providers Outcome standards, in residential aged care in Australia, 42 Overcaring, in community-based care management programs 126–27, 131 Participation, model of social values, 19– 21, 216, 239–41. See also Consumer participation Pathways through care: Alzheimer’s patient case study, 230–31; decision making processes in, 231–34; meaning of, 224, stroke patient case study, 228–30 Place-based activism, 137, 151, 152 Postreform community care, in Britain and effects on control, 91 Privacy, in nursing homes, 161–62, 164 Production function analysis, explanation of, 84–85 Program of All-inclusive Care of the Elderly (PACE), 176, 177 Provider mix in health care provision, in Britain and Germany, 234–36 Psychiatric rehabilitation, 198; effectiveness of, 200; and empowerment, 200– 203; goal of, 199. See also Recovery model; Social skills training Public long-term care insurance, in Japan, 68, 69–70, 75 Public-private collaboration, 54–55, 59, 63–64 Purchaser/provider models, 228, 234 Quality improvement, in managed care programs, 182. See also Continuous quality improvement; Quality of care
Index Quality of care, 108, 181; relevance of consumers’ views, 43; and social disability, 197. See also Outcome standards Quality of life, 207–8, 210; and informal carers, 213–14; and intellectual disability, 212–13; measurement of, 196, 210–12; in nursing homes, 61, 156, 165–66; and people with longstanding disabilities, 206–7; in senior housing, 61; and social disability, 196– 98 Recovery model, for patients with longterm psychiatric disability, 198–200. See also Social skills training Rehabilitation, of stroke patients. See Pathways through care Rejection, social values model of, 17 Reminiscence therapy, 61–62 Residential homes, effects of living in, 102 Residents’ views, in nursing homes. See Consumers’ views Responsibilities, of older people and organizations, 106–7. See also Independence Reverse mortgages, 143, 144 Rights, of nursing home residents, 34, 155, 163–64, 249. See also Charter of Rights and Freedoms of the Elderly Risk, in nursing homes, 156–58, 165 Satellite Senior Homes, Inc., 56 Self actualization, 93, 245, 246, 249, 251, 253–54; model of social values, 21–22; and people with disabilities, 194, 214 Self-care, 12, 71; in managed care, 179– 81; movement, 12–13; programs, 20; and self-neglect, 24 Self-checking and self-development programs, 75–76 Self-esteem: enhancement of among elderly, 59, 60, 62–63; loss of, 243
277 Self-evaluation scale for future wellbeing, 75 Self-training programs, 75 Serious and Persistent Mental Illness (SPMI): elderly persons with, 191, 192, 201, 242, 251–52; issues surrounding definition of, 192–94, 197– 98 Service professionals. See Health professionals; Service providers Service providers: attitudes, values and assumptions of, 16–17, 17–19, 20–21, 28–29, 32–33, 56, 116, 202, 214; limits to empowerment 28–30. See also Care managers; Disability care, 120, 126–27 Small housing units, 101, 105, 106; benefits of, 116–17, 250 Social care insurance, programs in Germany, 225–26, 228, 231–34. See also Care Insurance Legislation; Public long-term care insurance Social disability, 36, 196–98 Social Health Maintenance Organization (Social HMO). See Health Maintenance Organizations Social integration, link with physical deterioration, 72–73 Social service values model, 17–19 Social skills training (SST), and mental disability, 36, 198–203, 252 Social value models continuum, Moody’s, 4–5, 17–22, 239–41; and policies towards frail elderly people, 246 Social workers: and community-based care management 120–21, 131; involvement in small housing units projects, 110; role in reminiscence project, 62 Strengths approach, 12, 22 Stroke patients: assessment of care needs, 231–34; rehabilitation of, 228– 30 Structural dependency, 225, 243
278 Support devices, in the home, 122 Supportive devices, 128. See also Support devices “Systematic comparative illustration” method, 226 Undercaring, in community based care management programs, 127, 243 Unit heads, in nursing homes, 160–61, 165
Index Vendors, 120, 126–27 Visiting human service providers, and care management, 119, 132, 243. See also Visiting services Visiting human services, need for, 120. See also Community-based care management; Environmental adaptations; Visiting human service providers Visiting services, and care management, 131, 132. See also Visiting human services
About the Editors and Contributors
TOKIE ANME is a senior researcher at the Research Institute of the Division of Psychology and Rehabilitation Management at the National Rehabilitation Center for the Disabled in Japan. She holds a Ph.D. in health science and is the author of numerous studies and scientific papers on the support needs of elderly and disabled people in Japan. DUNCAN P. BOLDY is a professor of health policy and management at Curtin University of Technology, Perth, Western Australia, where he has been since 1983. Previously he held appointments at the University of Exeter, United Kingdom. He holds a Bachelor’s degree in mathematics and statistics, a Master’s degree in computing and operational research, and a Ph.D. in social policy and social administration. Among his many publications are two earlier books coauthored or coedited with Leonard F. Heumann on housing for the elderly and aging in place. PAUL H. CARMICHAEL attended McGill University as an undergraduate, received a Master’s in Social Work from the State University of New York at Stony Brook, and earned his doctorate in social welfare policy at Brandeis University. He has worked in the fields of mental health and aging as a medical social worker and as a faculty member in the Graduate School of Social Service, Fordham University. He is currently the director of research and assessment for three colleges in the Connecticut Community Colleges system. ROBIN CURRIE is chief executive of PSS, a large nonprofit organization providing innovative residential, day, and domiciliary services for people with
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mental health problems, elderly and disabled people, and children in the United Kingdom. He has wide experience as a director, manager and social worker in government, nonprofit and private sector organizations. He holds a BA in social administration, an MA (in social work) and an MBA (in management) in addition to a Certificate of Qualification in social work. BLEDDYN DAVIES was trained as an economist, graduating from Cambridge University and completing a doctorate at Oxford University. He lectured in economics and then social policy at the London School of Economics before becoming the founding director of the PSSRU, a unit for the research and analysis on equity and efficiency issues in community and long-term care. The PSSRU has branches at the London School of Economics and the universities of Kent and Manchester where he is a professor. NIEK DE BOER studied clinical psychology and earned his doctorate in the field at the University of Groningen in Holland. For the last twenty years, he has been managing director of a psychogeriatric clinic and also the founder of a small psychogeriatric housing and care unit. For the last eight years, he has been vice president of the board of the SHDH foundation, which has responsibility for three geriatric clinics (including his own) and four retirement homes. LINDSAY GETHING, Ph.D., is professor of community, disability, and aging studies at the University of Sydney, Australia, where she is director of the Research Centre for Adaptation in Health and Illness. She is registered to practice as a psychologist in New South Wales, Australia. She has published widely on psychosocial issues associated with living with a disability and those associated with aging. Her current research projects focus on quality of life and well-being issues of people with disabilities and people aging with a longstanding disability. LINDA E. GRENADE holds a BA and a BSW from the University of Western Australia. As a social worker, she has been involved in migrant welfare and refugee resettlement, and has spent a number of years working with people with intellectual disabilities. Her research experience has been primarily in relation to aged care and disability and has included an evaluation of case management programs in Western Australia and the Northern Territory. MARIE-JO GUISSET has a diploma in social work and a Master’s in Social Policy from the University of Bordeaux. Her work at Fondation de France (Paris), as manager of the program for elderly people, has given her an expertise in innovative action. She works closely with both nongovernment organizations (NGOs) and governments to promote innovations in care for older people at an international level. GERMAIN HARVEY received his MBA in 1971 from the University of
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Montreal. For many years, he has been the director-general of three public nursing homes where 450 very elderly people live. He is well known for the creation and implementation of a charter of rights and freedoms of the elderly in an institutional setting. This puts the balance of power back into the hands of the residents who live in these institutions. Re´sidence YvesBrunet and Germain Harvey have received many awards, including the Rights and Freedoms Prize, awarded by the Human Rights Commission of Que´bec, and the Merit Award of the Bar, issued by the Que´bec Bar Association. He lectures widely on the oldest-old and on the benefits of a more client-centered approach to services provided by government, public institutions and similar organizations. LEONARD F. HEUMANN is a Professor of urban and regional planning and psychology at the University of Illinois at Urbana-Champaign. He holds a Ph.D. in city planning from the University of Pennsylvania, and a Master’s in urban planning and a Bachelor’s in architecture, both from the University of California at Berkeley. He is the coauthor of Housing for the Elderly: Planning and Policy Formulation in Western Europe and North America (1982) and The 1988 National Survey of Section 202 Housing for the Elderly and Handicapped (1989); coeditor of Aging in Place with Dignity: International Solutions Relating to Low-Income and Frail Elderly (1993 and 1996); and editor of Managing Care, Risk and Responsibility: The Challenge of the 21st Century as the Aging and Disabled Population Grows and Diversifies (1997) and the 1999 National Survey of Section 202 Housing for Elderly Persons (2000). DENNIS L. KODNER holds a Ph.D. from Union Graduate School. He is senior vice president, research and innovation, at Metropolitan Jewish Health System, New York City, and executive director of its Institute for Applied Gerontology. Dr. Kodner’s policy, research and practice interests include case/care management, home- and community-based services, and managed care for elderly, chronically ill, and disabled populations. He is on the faculties of New York Medical College and the Wagner Graduate School of Public Service at New York University. MARY E. MCCALL is a professor of psychology at St. Mary’s College of California. She earned her Ph.D. in human development and aging from the University of California at San Francisco. Her major areas of research have been in the health, housing, and service delivery components of improving the quality of life for very low-income elders living in federally subsidized housing. MICHAELA SCHUNK received her Ph.D. in social policy from the University of Manchester, United Kingdom. Her cross-national, comparative research into long-term care for older people examines public policy and delivery systems with a focus on comparing access to care at the micro-level.
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Currently, she holds an appointment as a visiting assistant professor at the Institute for Health and Aging at the University of California at San Francisco. JONATHAN SHANKMAN is a gerontologist at the Metropolitan Jewish Health System in Brooklyn, New York, where he has been part of the development team for the Managed Long-Term Care Plan demonstration called HomeFirst, Inc. He holds an MPH in gerontology, an MBA, and a BA in English—all from Columbia University in New York City. MEG SHERLOCK, R.N., M.A., has an M.A. in nursing from New York University and completed a post-Master’s certificate in family systems theory at the Center for Family Learning. For over twenty years, she has worked in community long-term care with the chronically mentally ill and the frail elderly. Her experience in remaining involved with clients as they traversed the care continuum convinced her that working with the client’s caregiver is as important as the work with the client. She is delighted to have had the opportunity to work with, and learn from, clients and caregivers to develop highly individualized plans of care that promote agreed-upon, positive outcomes. PHILIP B. STAFFORD holds a Ph.D. in Cultural Anthropology from Indiana University. He is the director of the Evergreen Institute on Elder Environments, Inc., in Bloomington, Indiana. A cultural anthropologist, Stafford is also an adjunct associate professor in the Indiana University Department of Anthropology and at the University’s Center on Aging and the Aged. He has published numerous articles on the interface between aging and culture and currently directs an organization that conducts applied research and community development to create healthy environments for older adults. His research and activism is premised on the notion that aging is about place, not time.
