Shifting the Paradigm in Community Mental Health: Toward Empowerment and Community [Paperback ed.] 0802083552, 9780802083555

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Shifting the Paradigm in Community Mental Health: Towards Empowerment and Community Geoffrey Nelson, John Lord, and Joanna Ochocka

This ground-breaking study examines changes in the values and practices within community mental health that occurred between 1984 and 1998 in the Kitchener-Waterloo area. During this period, a distinct shift in policy coincided with a new emphasis on mental health reform. This unique two-and-a-half year study examined one community in depth by looking at the changes that occurred and their effects on individuals, organizations, and policy. Throughout the course of the study most of the changes in policy and practice focused on stakeholder participation and empowerment. Consumer/survivors actively participated in mental health planning and policy making, organization development, and implementation of services and supports. While the specific organizations under study followed their own unique pathways towards change, the authors contend that there were also common elements in the journey towards the 'empowerment community-integration' paradigm. Central to this shift was the emphasis on building an organization based on consensually defined values and a vision for the future. Shifting the Paradigm in Community Mental Health is a valuable guide for future research, and for consumers and administrators in the mental health field as well as in other areas of human services. GEOFFREY NELSON is Professor of Psychology, Wilfrid Laurier University. JOHN LORD is a researcher, writer, and community developer. He is also a founder and former coordinator of the Centre for Research and Education. JOANNA OCHOCKA teaches at Wilfrid Laurier University and is a coordinator of the Centre for Research and Education.

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Shifting the Paradigm in Community Mental Health: Towards Empowerment and Community

GEOFFREY NELSON JOHN LORD JOANNA OCHOCKA

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

www.utppublishing.com University of Toronto Press Incorporated 2001 Toronto Buffalo London Printed in Canada ISBN 0-8020-4823-4 (cloth) ISBN 0-8020-8355-2 (paper)

Printed on acid-free paper

Canadian Cataloguing in Publication Data Nelson, Geoffrey B. (Geoffrey Brian) Shifting the paradigm in community mental health: towards empowerment and community Includes bibliographical references and index. ISBN 0-8020-4823-4 (bound) ISBN 0-8020-8355-2 (pbk.) I. Community mental health services - Ontario - Kitchener. 2. Community mental health services - Ontario - Waterloo. I. Lord, John, 1943- . II. Ochocka, Joanna. III. Title. RA790.7.C3N44 2001

362.2'2'0971345

COO-931872-0

University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council. University of Toronto Press acknowledges the financial support for its publishing activities of the Government of Canada through the Book Publishing Industry Development Program (BPIDP).

To our parents and their legacy: Maryalice and Robert N. Nelson, P.M. Billie and Thomas D. Lord, Wladyslawa and Stanislaw Lukaszewski

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Contents

Preface

ix

Author Biographies Acknowledgments

xiii xv

PART ONE SETTING THE CONTEXT: PARADIGMS, CHANGE, AND RESEARCH APPROACH 1 Looking Back: The Traditional Paradigm in Mental Health 3 2 Moving Ahead: Towards An Empowerment-Community Integration Paradigm in Community Mental Health 19 3 'Nothing about Me without Me': Research Approach and Methodology 37 PART TWO THE STATE AND THE COMMUNITY: POLICY AND MENTAL HEALTH CHANGE 4 The Sociopolitical and Policy Context: A Historical Review 59 5 A Time of Change: The Growth of Community Mental Health and the Emergence of an Alternative Paradigm, 1985-1994 76

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PART THREE ONE JOURNEY, THREE PATHWAYS: CHANGE IN MENTAL HEALTH ORGANIZATIONS 6 Pathways towards Change: The Process of Organizational Change in Three Mental Health Organizations 101 7 Organizational Change: Outcomes in the Three Community Mental Health Organizations 125 PART FOUR IMPROVING INDIVIDUAL LIVES: DEVELOPING 'SELF IN COMMUNITY' 8 Personal Empowerment

151

9 Community Support and Integration 173 10 Social Justice and Access to Valued Resources

195

PART FIVE CONCLUSIONS 11 Living with Change: Themes and Lessons from Shifting the Paradigm 217 12 The Future: New Directions for the Empowerment-Community Integration Paradigm 241 13 Final Reflections on the Research Process 255 References Index

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Preface

The language and practice of 'mental health reform' has been a significant part of community mental health in North America during the past two decades. Critically examining the paradigms used to frame mental health is one way to understand the potential and limitations of this reform. Here we describe a two-year study in one community, where we closely examined a 'paradigm shift' that entails changes in values and practices in community mental health. In this book, we combine theory, research, and practice. In terms of theory, we clarify differences between traditional and alternative paradigms in community mental health in terms of key values and assumptions and related practices. The research component provides an indepth examination in one community of shifts from the traditional paradigm to an alternative paradigm at multiple levels of analysis (social policy and planning, organizational change, and individual change). As well, the research findings suggest new dimensions for the emerging alternative paradigm. Finally, we provide key themes and practical examples of how to create change and shift the paradigm in community mental health. Stories and quotes from participants in the research are sprinkled throughout the book to make theory, research, and practice come alive. Because our study integrates theory, research, and practice, we believe that it will be of interest to policy-makers, planners, researchers, students, practitioners, family members, and consumer/survivors. In its focus on paradigms and change, the book should also be of interest beyond community mental health to anyone who is interested in policy, organizations, and change. We have organized it in such a way that it can be read in its entirety, or the reader can pick and choose particular sections of interest.

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The book is divided into five parts. The first part consists of three chapters, which set the context for understanding paradigms, change, and our research approach. In Chapter 1 we look back at the traditional paradigm in mental health, and we introduce ourselves and our community where the research took place. Chapter 2 provides the theoretical framework, including an outline of the emerging empowermentcommunity integration paradigm and a multilevel, ecological perspective on paradigm change. Our research approach and methodology is outlined in Chapter 3. In keeping with our participatory action research approach, we describe both what we did and how we did it. Part 2 focuses on mental health policy and consists of two chapters. In Chapter 4 we provide a historical review of the sociopolitical and policy context, reviewing literature on mental health reform in the United States, Canada, and the province of Ontario. Chapter 5 is based on data collected for this study regarding changes in policy and planning in mental health in Ontario and in Waterloo Region between 1985 and 1998. Organizational change and paradigm shift is the subject of the third part of the book. There are two chapters in Part 3, both of which are based on study data. In Chapter 6 we describe and analyse the processes of change that three community mental health organizations in our community took to shift towards the empowerment-community integration paradigm. Chapter 7 documents the outcomes of the change that occurred in the three organizations and the factors that facilitated or inhibited those changes. In Part 4 we focus on personal changes experienced by the consumer/survivors who were supported by the three organizations. This part is organized into three chapters, each of which focuses on a key value of the empowerment-community integration paradigm. In Chapter 8 we describe and interpret changes in the personal empowerment of consumer/survivors. Chapter 9 focuses on changes in community support and integration, and Chapter 10 examines changes in access to valued resources, as well as key themes in the process of personal change. The concluding part, Part 5, has three chapters. In Chapter 11 we present key themes that cut across findings at different levels of analysis. For each theme, we note lessons learned regarding both the research process and substantive findings regarding changes towards the empowerment-community integration paradigm. Future directions are discussed in Chapter 12, including the ideal qualities of this emerging

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paradigm, how this approach can include both treatment and support, and the broader implications for social policy and practice for a just society. The last chapter, Chapter 13, consists of the reflections of different stakeholder groups who were involved in this research.

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Author Biographies

Geoffrey Nelson is professor of psychology and former director of the MA program in community psychology at Wilfrid Laurier University, Waterloo, Ontario. He has served as senior editor of the Canadian Journal of Community Mental Health, chair of the Community Psychology Section of the Canadian Psychological Association, and a member of the board of directors of the Centre for Research and Education in Human Services. Geoff is also a fellow of the Society for Community Research and Action and the American Psychological Association. His research has focused on innovation in community mental health, including housing, community support, and self-help approaches for psychiatric consumer/survivors and promotion/prevention programs for children and families. Much of this work is participatory and action-oriented, with an emphasis on improving programs and policies. John Lord is a social research consultant living in Kitchener-Waterloo, Ontario. He works with a variety of communities and groups, utilizing principle-centred approaches and participatory action research. John is a founder and former coordinator of the Centre for Research and Education in Human Services in Kitchener. He has also been a research consultant at Ryerson Polytechnic University and was formerly a faculty member at Dalhousie University. John has completed research and published widely in a number of related areas, including promising community approaches with vulnerable citizens, deinstitutionalization, independent living, and mental health reform. One of his current interests is power and partnerships between disability groups, researchers, and service providers. Joanna Ochocka is coordinator of the Centre for Research and Education in Human Services, a non-profit organization that does research

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and education with a variety of community organizations at the local, provincial, and national levels. Joanna uses participatory action research approaches in her work and has directed a number of largescale research projects involving multiple partnerships. Her areas of interest include community mental health, community support programs for people with disabilities, immigrants, and seniors, and family support initiatives. She is a part-time faculty member in the MA program in community psychology at Wilfrid Laurier University.

Acknowledgments

It was our privilege to work with a fine group of people throughout the course of this project, and we are pleased to thank them for their participation and assistance. The executive directors of the three agencies supported us from the beginning with their interest in this study. Each of them took a risk in exposing their organizations to the scrutiny of outside researchers. We thank Wendy Czarny of Waterloo Regional Homes for Mental Health, Inc., John Jones of the Canadian Mental Health Association / Waterloo Region Branch (CMHA), and Anne Tschirhart and her successor Terry Dick of Waterloo Region Self Help (WRSH) for their participation on the steering committee and for their overall commitment and cooperation. Members of the project's steering committee gave generously of their time to help guide the implementation of the study. We thank Alex Bezzina (who chaired phase 1), Janet Lowrey, Jim McCabe, and Don Roth of CMHA, Gail Anderson, Jane Hildreth, and Suzanna Muir of Waterloo Regional Homes, Dave Weber (who chaired the second and third phases) of WRSH, and Mike Barker of the Waterloo Region District Health Council for their participation. Members of the national/provincial advisory committee also contributed to this study. We thank Bonnie Pape of the Canadian Mental Health Association / National Office, Glenn Thompson of Canadian Mental Health Association / Ontario Division, Mamie Shepherd of the Consumer/Survivor Development Initiative, Allan Strong of the Mood Disorders Association of Ontario, Barbara Everett of the Ontario Federation of Community Mental Health and Addictions Programs, and Roberta Kay of the Ontario Ministry of Health for their participation on this committee.

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Several people ably provided research assistance. During phase 1, Margaret Douglin and Nana Gyamfi-Kumanini reviewed and analysed provincial policy, regional planning, and agency documents, and Maria DeBoer and Patrick Fisher recorded interviews on a laptop computer. During phases 2 and 3, Sylvia Cornell of Waterloo Regional Homes, Barry D'Costa of WRSH, Paul Reeve of CMHA, and Melanie Quickfall of Wilfrid Laurier University conducted interviews and assisted with the analysis of the data from those interviews. Marlene Cox, Judy Nelson, and Holly Williamson transcribed Phase II and III interviews. In phase 3, members of the research team and the steering committee helped by gathering field notes during agency and community meetings. We thank all of these individuals for their work on this project. We would like to thank Rich Janzen, senior researcher with the Centre for Research and Education, who was the assistant project manager during phases 2 and 3 of the study. Rich's strong research and interpersonal skills were a major factor in the success of this project. Thanks Rich. Wendy Czarny, Terry Dick, Jane Hildreth, Peggy Hutchison, John Jones, Isaac Prilleltensky, Don Roth, and Andrew Taylor read parts or all of the first draft of this book and gave us valuable feedback for revisions. We thank these individuals for their thoughtful comments. Finally, we thank Stephanie Austin and Ramona Teichroeb for their help in putting the manuscript into its final form. From all of the people that we have acknowledged, it is quite apparent that this project was a team effort.

PART ONE

Setting the Context: Paradigms, Change, and Research Approach

In this first part of the book we set the conceptual and research context of paradigm shifts in mental health. In Chapter 1 we describe the community of Kitchener-Waterloo, where our study was conducted. We also examine and critique the assumptions of the traditional paradigm. We note the movement from a medical-institutional approach to a community treatment-rehabilitation approach, but argue that while the context has shifted from institution to community, both approaches share the same assumptions. In Chapter 2 we outline the underlying values of an empowerment-community integration paradigm in community mental health and provide some examples of what this paradigm looks like in practice. We also explore the issue of paradigm shift and provide a brief overview of theories of paradigm change at different levels of analysis (policy, organization, and the individual). In Chapter 3 we describe our research methodology, noting the congruence between our research paradigm, which uses participatory action research based on social constructivist assumptions, and the empowerment-community integration paradigm in community mental health.

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Chapter One

Looking Back:

The Traditional Paradigm in Mental Health

'When we noticed people were different... We called them evil We called them a threat We called them idiots And they were still in chains We called them handicapped We called them mental retardates We called them clients A new chain We called them disabled We called them challenged And we were right

And they were stoned And they were chained And we gave them pity And they were deficient And they were trained And they begged for services Yet we were disabling And avoided our own We have to call them something

We have to call them people, members of our community, sister and brother, mom and dad -friend We call 'them' human - and We are One The Disability of Language — Maintaining Barriers, 1991, unpublished poem by Don Roth, Steering Committee Member and Manager, Community Support Services, Canadian Mental Health Association, Wellington-Dufferin Branch

In this chapter we look back to clarify the underlying values and assumptions of the traditional paradigm in mental health. In so doing, we provide a historical perspective on how society has responded to people with serious mental illness. We begin by describing the community context for the study and some of our observations and personal motivations that prompted us to undertake this research.

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Kitchener-Waterloo: The Community Context Kitchener-Waterloo is both typical and unique. The twin cities, with about 300,000 people, are rich in Mennonite history and surrounded by some of the best farmland in Ontario. About an hour west of Toronto, K-W, as it is affectionately called, is the context for our study on change in community mental health. Waterloo Region, which includes K-W, Cambridge, several small towns, and rural areas, was first settled by Mennonite pioneers who came from Pennsylvania almost two hundred years ago. For several decades in the 1800s, thousands of Germans immigrated to the area and eventually established a town, whose original name, Berlin, was changed to Kitchener during the First World War. The area experienced rapid growth in the twentieth century, with housing expansion between 1945 and 1995 among the greatest in Canada. Like many cities in Canada's largest province, the economy of K-W has shifted in recent years from manufacturing (textiles and furniture) to the new 'high tech' sector and service industries. Hit hard by the recessions in 1981-4 and 1990-3, the region has been very resilient and continues to bounce back whenever various industries close. The K-W area has two universities and a college. The University of Waterloo and Wilfrid Laurier University are within blocks of each other in Waterloo. Both die University of Waterloo and Conestoga College, also located in K-W, are key players in the 'high tech' sector which resulted in the formation in 1987 of 'Canada's Technology Triangle' that includes the cities of Kitchener-Waterloo, Cambridge, and Guelph. Despite a relatively flourishing economy and community, unemployment of citizens with disabilities remains more than double the rate for other citizens, and many people with disabilities live on a disability pension because they have either 'given up looking for work' or have been told that they are 'unemployable.' The number of homeless people has increased in recent years, and there are food banks and a 'soup kitchen' that provide some support to people who are poor and/or unemployed. Community mental health services and supports in the region have been put in place to address the needs of one disadvantaged group, adults with serious mental illness. Some services are truly local, provided by the municipalities or the voluntary sector. Most adult mental health services are funded by the Ministry of Health of the province of Ontario, but delivered by local non-profit organizations. The Ministry of Health has district health councils, which advise the ministry on plans and priorities for health and mental health. Some mental health ser-

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vices and supports are innovative and reflect the best of caring and community values. We also have some systems of services that are really 'nonsystems.' By this we mean that there exist duplication, gaps in service, and no coherent approach for the consumer or citizen who is trying to find support. K-W is similar to many North American communities. It has grown and continues to grow in population into a large urban area from what was originally a farming community. The steady decline in the manufacturing sector and the expansion of education, training, and jobs in the information and technology sector reflects larger social trends. Finally, like many other communities, K-W has experienced deinstitutionalization of people with mental health issues and the development of an array of community mental health services over the past twenty or so years. Also, as the reader will learn shortly, the main types of community mental health services and supports in K-W (housing, community support, and self-help) are quite common in other communities. Noticing Small Changes In May 1995, when we first started meeting to develop the proposal for this study, we were struck by the changes that had occurred in our community in recent years. We noted that there were leaders and organizations in mental health working towards significant change. One organization had been through a long 'change process,' while another had individualized its support services. Case management services in both of these mental health agencies had shifted away from a clinical, management orientation towards a strengths-oriented, collaborative approach with psychiatric consumer/survivors. The local self-help organization for consumer/survivors, which had been operating since 1991, had developed a series of peer support groups that were very well attended. Psychiatric consumer/survivors in our area were much more visible than they had been even a few years before. People were active within the boards and staff of the main agencies, and they were very involved in mental health planning bodies. We knew some consumer/ survivors who were active in our local community as volunteers, workers, and church members. In recent years, support groups for families had also expanded, with three groups now very involved in our area. We noted that several Mennonite churches had started an Inter-Church Chaplaincy Project that reached out to consumer/survivors and families who were interested in mental health and the Christian faith.

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We each knew citizens with mental health problems whose lives had changed dramatically in recent years. Eric Freison was a good example. He had spent several years in and out of London Psychiatric Hospital (LPH as it is called locally), which is located one and a half hours west of Kitchener-Waterloo. Six years ago, he had an opportunity to receive housing and support from our local housing agency. It was not an easy transition for Eric, but with the support of the housing staff and his family, he started on the road to recovery. Cautious at first, he became very involved in the local self-help organization and attended several peer support groups. There he learned to have more self-confidence and to better express his feelings. In his third year, he joined the board of the self-help organization and became active in his mother's church. Although he still goes to the hospital when he has a crisis, he no longer needs to use the hospital in London, but can use the local community hospital instead. In many ways, what we were noticing in our community were small changes. We were reminded of 'small wins' theory, which suggests that change occurs as building blocks of small wins as opposed to one major change. A small change can be thought of as a concrete, complete outcome of some importance (Weick, 1984). Even as we identified many small changes, we also observed that these small changes seemed to be having a broader impact on our community and on the lives of psychiatric consumer/survivors. We found ourselves thinking ahead and imagining a future where people with serious mental health problems would be able to live in dignity in our community. We also found ourselves looking back to earlier times when mental illness was dominated by fear and ignorance. We wondered if things had really changed for the better. Many advocates were proposing new paradigms and new approaches. Were these 'small changes' in our community reflective of an alternative paradigm? Did the small changes add up to and have more impact than each of the small changes by themselves? Did this reflect a paradigm shift? Although new language was now very much a part of community mental health, to what extent did this rhetoric make a difference in the actual lives of citizens? Throughout North America and other Western countries, there are currently many efforts under way to reform the way services and supports are provided to people with serious mental illness. As we thought about the small changes that we identified in Kitchener-Waterloo, we wondered if we could study this paradigm shift right here in our own community! We discussed the possibility of applying for a research grant

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from the Social and Economic Integration of People with Disabilities, a joint program of the Social Sciences and Humanities Research Council (SSHRC) and Human Resources Development Canada (HRDC). Locating Ourselves: Researchers and Citizens As researchers and citizens of the Kitchener-Waterloo community, we have relationships with each other and with our community. Our values and experiences in this community motivated us to undertake this study. A brief story from each of the authors relates some of their background and experiences that pertain to this work. The Researchers

John

When I first arrived in K-W in 1978, community mental health was in its infancy. The hospital had a psychiatric ward and the Canadian Mental Health Association had a few programs. At that time, there was a new self-help group for families, but no self-help groups for consumer/survivors. I had previously been involved in research and advocacy in the area of developmental disabilities and was deeply involved in the integration of vulnerable citizens into community life. As one of the founders of the Centre for Research and Education in Human Services in 1982, I soon became involved in mental health research. Working with the National Office of the Canadian Mental Health Association on their Framework for Support project, I was struck with the growing commitment to consumer/survivor and family involvement across Canada. I also soon learned that there was limited understanding or commitment to community integration of citizens who had experienced serious mental health problems. Over the past fifteen years, my research on the social world of vulnerable citizens has focused on deinstitutionalization, community integration, empowerment, and promising approaches to community support. In some ways my research and education interests have paralleled extensive change in the mental health field. My community looks much different today than it did fifteen years ago, and my research reflects many promising approaches and the continuation of significant barriers to change. My personal life is also embedded in these issues. One of my children has Down syndrome and experiences the challenges of living with it in our society. I have also lived for years with my father's mental health

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problems. Both of these experiences have enriched and challenged me and my family. Joanna I moved to Kitchener-Waterloo in 1990. Looking for employment opportunities, I learned about a research position with the Centre for Research and Education in Human Services. Meeting people from the centre, talking about the centre's work, its involvement in the community, and its commitment to social change helped me in making the decision to get involved. Previously, I was engaged in research in the area of physical and developmental disabilities around community integration, social support, and social change. My enthusiasm grew as a centre researcher when I listened to discussions during the process of implementation of the Graham Report, where consumer/survivors and family members were given, for the first time, a voice in what they wanted to see in mental health policy in Ontario. I was also excited by the direction of the new executive director of the Canadian Mental Health Association, who saw the need for social change and who became an active participant in the centre's work on promising practices in community support projects. I witnessed the changes at Waterloo Regional Homes and the beginnings of Waterloo Region Self Help, one of the first self-help and mutual aid organizations for consumer/survivors in Ontario. So, over the past nine years, I have become involved in community mental health research locally and nationally. I practise and teach collaborative approaches that link research closely with community action and believe in the development of supportive and responsive communities. In my personal life, Kitchener-Waterloo has become home for me and my family. My daughter went through the school system in K-W, and my son was born in K-W Hospital. My partner and I have met great people in K-W and have made friendships that will last forever. Geoff

In 1979 I was hired by Wilfrid Laurier University to help with the development of the MA program in community psychology, one of the few of its kind in Canada. Since then K-W has become my home and the centre of my personal, family, and working life. My partner and I have found K-W to be a wonderful place to raise our three children; people are friendly; the crime rate is low; and the community is prosperous. But there are still many disadvantaged people in the community whose needs are not being well met.

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There is a wide range of community organizations that address a variety of human needs, and there are plenty of opportunities to volunteer. I have coached minor sports in which my children have been involved for years; I served as a board member of the local branch of the Canadian Mental Health Association for ten years, including three years as president; and I have participated in coalitions and social justice activities. My job has afforded me a number of opportunities to pursue work in community mental health, including research on housing for consumer/survivors. I have been interested in innovation in community mental health for some time, and as I have grown as a researcher and community developer, I have learned how to use participatory and action-oriented approaches to make this work useful in sustaining innovation. K-W has been good to me, and I know very well that I am privileged. Part of my motivation for this study was to make K-W a better place for everyone. Our Involvement in the Community

As we met to plan this study, we felt an excitement that we could work together on a project that reflected many of our personal values and common research interests. We talked about some of the potential pitfalls of doing a study in our own community. We recognized the value of 'distance' in doing research, where a certain degree of disinterest enables the researcher to 'see' without predetermined assumptions. On the other hand, in studying the complexity of a community, we recognized the importance of relationships in building understanding, trust, and commitment among participants. We knew that if we wanted to study personal and community change, that we would have to build on the relationships we already had in the community. We all had experience as citizens, facilitators, and researchers in K-W and were known as people who lived the values of our work. This experience gave us a base to approach these groups to join us in this research endeavour. We also made a commitment to work as a team in an open, critical manner, thus ensuring the principle of some critical 'distance' in our research work. Thinking about Paradigms 'Paradigm' is certainly a word for our times. We can think of a paradigm as a set of basic beliefs that define the nature of the 'world' and the boundaries and relationships within it (Condeluci, 1991; Cuba and Lincoln, 1994). Many fields of endeavour are struggling with different

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approaches. Whether it be psychology, health, business, or human services, new approaches to research and practice are being explored. Often called a 'paradigm shift,' these approaches usually reflect new assumptions and a different world-view. The views that the earth is round, rather than flat, or that the earth revolves around the sun, rather than the sun revolving around the earth, are examples of paradigm shifts. In our research on paradigms and paradigm shift in community mental health, our goal was not to 'prove' which paradigm is best. Rather we wanted to clarify the differences between the traditional paradigm and an alternative paradigm and to document how three organizations in one community tried to make the shift from the traditional paradigm to an alternative paradigm. In reflecting upon paradigms, we returned to Thomas Kuhn and his 1962 book, The Structure of Scientific Revolutions. In describing physics, Kuhn noted how paradigms become dominant and the people supporting them become defensive when a new paradigm emerges. Kuhn noted that new approaches uncover inconsistencies, which are not well explained by the dominant paradigm. In the remainder of this chapter, we describe the traditional paradigm in mental health and note some of the inconsistencies and problems that have led to the emergence of an alternative paradigm, which we describe in Chapter 2. The Traditional Paradigm for Adults with Serious Mental Health Problems As researchers, each of us has experienced the traditional paradigm in a variety of institutional and community settings. We believe it is fair to argue that the dominant institutional-medical approach and the more recent community treatment-rehabilitation approach are based on the same paradigm. While community treatment-rehabilitation approaches represent an improvement in many ways over institutional-medical approaches, they both still reflect quite similar underlying values and assumptions. In this section we look briefly at each of these approaches. We begin each section with a short story about one person's experiences with these approaches. Institutional-Medical Approaches When Gary Wilson walked onto the ward, he felt himself starting to perspire. Memories flooded his consciousness. The smells, the green walls,

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the locked doors. Gary knew he had to listen and be helpful to others who were now 'imprisoned' in the institution, but he found it hard to stay focused. He had to fight his memories of fear and powerlessness. Gary was visiting a psychiatric institution as part of the KitchenerWaterloo Welcome Home Initiative. As a consumer/survivor himself, he had spent years in and out of such places. Gary had managed to stay out of 'psych' hospitals for the past seven years. This visit brought Gary face to face with the power and control of the institutional-medical approach to mental health. Since the late 1800s services for people with serious mental health problems have been dominated by institutional-medical approaches. More specifically, large provincial and state mental hospitals were the primary location of treatment. Many of these institutions were created through the campaigning of reformers such as Dorthea Dix, who argued that people with mental health problems, who were previously segregated in prisons and poorhouses, needed medical treatment in hospitals (Deutsch, 1949). Much later critics, such as Thomas Szasz (1961), noted that conceptualizing 'problems in living' as disease has perpetuated a 'myth of mental illness' that focuses narrowly on the organic causes of mental health problems to the neglect of environmental causes. In the institutional-medical approach, people with serious mental illness are viewed as 'patients.' Numerous studies of mental hospitals (Dunham and Weinberg, 1960; Goffman, 1961; Rosenhan, 1973; Stanton and Schwartz, 1954) have documented the tremendous imbalance of power between mental hospital patients and staff. It is presumed in this approach that the doctors and hospital staff know what is best for the patient, and they are in total control of the treatment approach. The patient's role is a passive one, with little participation in one's own recovery. This power imbalance, and the isolation of people from the community, has led to widespread abuses of people in mental hospitals (Roeher Institute, 1994). Psychiatric survivors have written about their experiences in mental hospitals, documenting the deleterious effects of the power imbalance (Burstow and Weitz, 1988; Chamberlin, 1978). For example, in the book Shrink Resistant, Burstow and Weitz (1988) have compiled first-person accounts of over forty psychiatric survivors' experiences of hospitalization. Through interviews, journal entries, poetry, drawings, and personal stories, these individuals recount experiences that are simply horrifying. Forced treatment, involuntary commitment, physical and

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sexual abuse, and dehumanization characterize the experiences of people admitted to such institutions. Another aspect of institutionalization is the segregation and exclusion of people from community life. In the distant hospital, patients are 'out of sight and out of mind.' Moreover, treatment follows a medical approach, rather than a psychosocial approach. Thus, custodial care has been the norm in many psychiatric hospitals. Isolated from the community, people do not have the resources of family, friends, and community to aid them in their recovery. Goffman (1961) described a process of 'disculturation,1 in which people lose those social and instrumental role skills that are necessary for functioning in the community. At the same time, the community 'closes the ranks' and adapts to the loss of the person who is hospitalized (Goffman, 1961). Goffman argued that these institutional and community processes lead to stigmatization, or what he refers to as a 'spoiled identity.' For more than a hundred years, citizens from Kitchener-Waterloo have had to go to London Psychiatric Hospital for mental health 'treatment,' with stays ranging from days to years. Although family members had been critical of such 'distancing' for years, it was not until reports of the Waterloo District Health Council in the early 1980s that there was public acknowledgment of this problem. We know that for people with serious mental illness that the lack of access to community resources to meet their basic needs is a factor both in admission to hospital in the first place and to one's integration back into the community after discharge from hospital. For example, Harris, Hilton, and Rice (1993) found that many of the problems experienced by people admitted to a psychiatric hospital in Ontario were economic in nature. This is not to say that individuals admitted to hospital do not have significant mental health issues; they do. But they also typically have a myriad of other problems encompassing difficulties with interpersonal relationships, housing, income, and employment. Our experience is that people returning to the community from such settings are ill-equipped to integrate and participate in community life. Limited access to basic resources in the community, such as housing, employment, income, and education when people are discharged, is also a common experience for people who are discharged from psychiatric facilities in Ontario (Goering et al. 1984). Consumer/survivors have written about the inadequacies of deinstitutionalization based on their experiences of discharge and re-entry into the community (Capponi, 1992; Chamberlin, 1978). These first-person accounts depict communities that are unwelcoming to those who have

The Traditional Paradigm in Mental Health

13

been labelled 'mentally ill.' Poor quality housing, poverty, stigma, discrimination, isolation, powerlessness, and fear are the conditions that people often face when they attempt to make the transition from the hospital to the community (Capponi, 1992; Chamberlin, 1978; Whyte, 1996). In the past twenty years the site of hospitalization has changed, as more and more consumer/survivors receive their medical treatment in general hospitals (Kiesler, 1992; Wasylenki, Goering, and Macnaughton, 1992). With hospital restructuring in most provinces, psychiatric wards in local hospitals have become more commonplace. Short stays in general hospitals have replaced long stays in provincial mental hospitals as the normative experience for people in the acute stages of mental illness. While this has the advantage that citizens can receive treatment closer to home, many of the characteristics of the institutional-medical approach remain in place. Some general hospitals have also tried to incorporate some aspects of the community treatment-rehabilitation approach, which we describe in the next section. After twenty years of deinstitutionalization, in 1982 Charles Kiesler published a significant review of ten studies in the United States that compared hospitalization with community alternatives. Each study had randomly assigned people to one of the two groups. Community alternatives, regardless of the intervention, showed more positive effects on such variables as employment, school attendance, and independent living. Perhaps Kiesler's most interesting finding from these ten studies was that 'hospitalization of mental patients is self-perpetuating' (Kiesler, 1982: 358). In other words, hospital patients are far more likely to be readmitted to hospital than community clients are ever to be admitted in the first place. In a subsequent article, Kiesler (1992) decried the current de facto policy of acute hospital care for people with mental health problems. He argued that, in supporting hospital care rather than health promotion, such a policy is 'doomed to fail.' The acute hospital approach is both costly and relatively ineffective. In our experience, Kiesler's (1982, 1992) conclusions are almost never discussed in mental health, where institutional-medical approaches continue to be revered as central to mental health care. Community Treatment-Rehabilitation Approaches

When Lisa Jones moved into the group home, she was told that this was a 'transitional' placement. If she worked hard and showed improve-

14

Part 1: Setting the Context

ment, she would have an opportunity to 'progress' to more independent supported housing, and then eventually she might be able to have her own place. Lisa was assigned a case manager, who helped her set up an 'individual program plan' and worked with her on specific life skills goals. At the time Lisa appreciated the support and the continuum of residential services. Only later did she wonder if she would ever recover to the point where she would be able to be fully independent and live in the community in the way she desired. Beginning in the 1960s there was a change in approaches in the mental health field from an institutional-medical model to a community treatment-rehabilitation approach. As we noted in the previous section, studies of psychiatric hospitals had found that they often provided merely custodial care; that many patients were warehoused in institutions for long periods of time; that those who were released often returned to the institution in a short time; and that abuse and neglect of patients was widespread in these settings (Burstow and Weitz, 1988; Goffman, 1961; Rappaport, 1977; Roeher Institute, 1994). To address these problems, a variety of community alternatives to institutionalization were developed, including assertive community treatment (Stein and Test, 1985), psychosocial rehabilitation (Anthony, Cohen, and Farkas, 1990), supportive housing (Cutler, 1986), lodges (Fairweather et al. 1969), clubhouses (Beard, Propst, and Malamud, 1982), and case management (Solomon, 1992). All of these programs, which have become increasingly prominent in many communities, emphasize the treatment and rehabilitation of people with severe and persistent mental health problems in community settings, with the prevention of hospitalization and the development of life skills as goals. The language and discourse of mental health shifted from an exclusively medical discourse to include a rehabilitation discourse. 'Patients' were now referred to as 'clients.' Community treatment-rehabilitation approaches attempt to address people's needs for employment and housing. With regard to employment, programs like the Fountain House model (Beard et al., 1982) use a 'train and place' approach, in which people with mental health problems are first trained in job skills and then hopefully placed in preselected job settings. This approach assumes that the key problem is the lack of job skills, not the lack of jobs or discrimination against people with a history of mental health problems. In housing, community treatment-rehabilitation approaches emphasize a residential continuum. As Lisa found, this approach asserts that there should be a range of housing programs, from group homes with a

The Traditional Paradigm in Mental Health

15

high degree of support and structure to supervised apartments with a low level of support and less structure (Cutler, 1986; Nelson and Smith Fowler, 1987; Parkinson, Nelson, and Horgan, 1999). As residents' level of functioning improves, they move to successively less supervised and structured settings. In their critique of this approach, Hogan and Carling (1992) note that there is an emphasis on programs and not homes and that the settings still tend to be segregated and to retain some qualities of the institutions they were designed to replace. In our experience, people often 'get stuck' at one point in the continuum, and the idea of 'movement' becomes strictly theoretical. Research on various community treatment-rehabilitation approaches has reported reduced rates of hospitalization and psychiatric symptoms and increased client satisfaction (Anthony and Blanch, 1989; Burns and Santos, 1995; Drake, 1998; Health Systems Research Unit, Clarke Institute of Psychiatry, 1997c; Levine, Toro, and Perkins, 1993; Salem, Seidman, and Rappaport, 1988; Santos, 1997; Taube et al. 1990). However, there is less evidence that participation in such programs leads to improvements in clinical status, work and social functioning, housing quality, social support, and independence. There is no question that community treatment-rehabilitation approaches have been an advance over institutional-medical approaches. However, problems with these new approaches have been increasingly noted (Carling, 1995; Nelson and Walsh-Bowers, 1994). Similarly, consumer/survivors have been critical of these programs based on their experiences. For example, Chamberlin (1978) described how professionals retained control in a clubhouse program, in spite of the desires of consumer/survivors to exert more control and autonomy. Similarly, Whyte (1996) has written about how professionals are often unaware of the power differences between themselves and consumer/ survivors arid how professionals react with shock and surprise when confronted by the anger of consumer/survivors. Capponi (1997) has described how community mental health programs do not address the abject poverty faced by many consumer/survivors. From these various sources, it is apparent that there are at least three major criticisms of the community treatment-rehabilitation approach (Nelson and Walsh-Bowers, 1994). First, the expert role of mental health professionals maintains the power imbalance between professionals and service users, with insufficient attention paid to the wants, needs, and experiential knowledge of people with serious mental health problems and their family members. Second, the focus on deficits contributes to

16

Part 1: Setting the Context

stigma, and the related assumption that people with serious mental health problems need professionally delivered services encourages dependence and ignores informal sources of support from the community. Third, the location of problems within people with serious mental health problems and their families ignores social conditions that such individuals face, such as poverty, poor quality housing, and lack of work and education. Thus, like medical-institutional approaches, community treatment-rehabilitation approaches maintain a power imbalance between clients and professionals. Moreover, segregation and exclusion from the community persists. While people are now in the community, they are still not a part of the community (Lord and Pedlar, 1991). Finally, lack of access to basic resources in the community remains a critical problem. People with mental health problems, by and large, live in poverty and poor quality housing and tend to be unemployed. A recent study by Townsend (1999) brings into sharp focus some of the limitations of community treatment-rehabilitationn programs. Townsend conducted a qualitative study of seven occupational therapists working in community mental health settings in the Maritime provinces of Canada. In her research, she found a tension between the occupational therapists' use of an empowerment approach to enable the participation of consumer/survivors and the traditional caregiving approach of occupational therapy which promotes dependence. While the occupational therapists had some discretion to use an empowerment approach, oftentimes their work was constrained by standards for professional practice that were embedded in the organizations in which they worked. These constraints preserved power imbalances between the professionals and consumer/survivors, required a focus on deficits and removal from community, and perpetuated a disregard for the importance of changing the social conditions which consumer/survivors face in the community. Townsend (1999) concluded that the good intentions of the occupational therapists were often overruled by these constraints. Summary and Reflections In this chapter we set the context by describing the K-W community in which we conducted the study, sharing some insights into ourselves as researchers and citizens, and noting some of the small changes in community mental health that we had observed in our community. We also briefly discussed the concepts of paradigm and paradigm shift. Finally,

The Traditional Paradigm in Mental Health

17

we oudined the characteristics of the traditional paradigm, arguing that the medical-institutional and community treatment-rehabilitation approaches both reflect the world-view of the traditional paradigm (aldiough they may seem different on the surface). We also noted some of the inconsistencies and problems of the traditional paradigm. In reflecting further on the two dominant approaches within the traditional paradigm, we found ourselves turning to the work of Michel Foucault (1965). Author of Madness and Civilization and many other works, Foucault has examined regimes of power that operated within institutions of the nineteenth and twentieth centuries. Foucault described how the 'gaze' of these institutions controls the movements of the person who has been defined as deviant. 'Surveillance' is the strategy for regulating movement, and the 'examination' or assessment procedures establish each individual as a 'case' with deficits and problems (Allan, 1996; Foucault, 1965). On the surface, it may seem that the community treatment-rehabilitation approach is 'non-institutional.' However, in the sense of Foucault, there can be 'institutions without walls.' As Dorothy Smith (1990) has argued, power is socially organized through institutions and manifested in citizens' everyday lives. Because such institutional arrangements, or what Smith calls the 'ruling apparatus,' are taken for granted and seen as 'normal,' unequal power relationships and their impacts are often invisible. It seems clear to us that both the institutional-medical approach and the community treatment-rehabilitation approach construct social relations in ways that maintain power and control in the hands of professional institutions. Dain (1994) put it even more bluntly, insisting that mental health reform over the years has amounted to a series of improved methods for social control, because the social classes and professionals who have directed the change are the same people as those who created the problems in the first place. In recent years managed care has been the mantra of reform and the dominant approach to implementing community mental health. Managed care is widespread in the United States and is increasing in Canada. This approach to system reform places the financial aspects of change at the forefront. Because of its tendency to be 'cost driven,' few managed care systems have paid 'conscious' attention to values and paradigms. As a result, most managed care systems reflect the characteristics of the traditional paradigm. McCubbin and Cohen (1999) have shown how even well-intentioned policy can be distorted when the sys-

18

Part 1: Setting the Context

tern is characterized by complex approaches to power distribution, incentives, and constraints. As we begin to look at the empowermentcommunity integration paradigm in the next chapter, we shall see the importance of values, which must take precedence over financial controls. Some places have shown that when values are considered at all levels of people working for system reform, managed care can embrace many of the principles of the empowerment-community integration paradigm. In the next chapter we outline the values underlying an alternative paradigm in mental health. In so doing, we note the differences between the traditional paradigm and the empowerment-community integration paradigm, showing how this alternative paradigm has emerged in response to the inconsistencies or limitations of the traditional paradigm.

Chapter Two

Moving Ahead: Towards An Empowerment-Community Integration Paradigm in Community Mental Health

Life will never be easy, or perfectible, or completely predictable. It will be best understood backward, but we have to live it forward. To make it liveable at all levels we have to learn to use paradoxes ... as an invitation to find a better way. Handy, 1995: 13 Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's that the only thing that ever has. Margaret Meade, as cited in Petras and Petras, 1995

Larry Armitage considered himself lucky. Although he had been hospitalized several times for severe depression and anxiety, in recent years he had become part of a supportive community which enabled him to cope effectively with his mental health difficulties. Larry's fortunes started to turn when he joined a self-help and mutual aid organization for psychiatric consumer/survivors. He began to write poetry for their newsletter, and soon he had a part-time job with the self-help organization. A local supported housing organization helped him find a small one-bedroom apartment and provided him with a support coordinator. The support coordinator, who took direction from the people she supported, helped Larry to do some 'future planning,' which built on his strengths and developed a personal vision and goals. Shortly after this planning with the support coordinator and several friends, Larry obtained a part-time job doing research and writing. When he had to be hospitalized for a couple of weeks, he was amazed to receive flowers and visits from his co-workers, friends at the self-group organization, and from a friend, who later became his wife.

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Part 1: Setting the Context

Larry's story is not unusual in our community. Changes we were observing in Kitchener-Waterloo seemed to 'move beyond' the traditional paradigm. Our dilemma was that the alternative paradigm did not have clearly identified characteristics, as the other two approaches did. We sometimes use the word 'emerging' when speaking of the alternative paradigm, because we sensed that the details of the paradigm are still being worked out. At the same time, we realized there is a growing body of literature about alternatives that point to new assumptions and new values to guide community mental health. This involves a change in our 'world-view' that challenges the assumptions of existing theory and practice. We realized that in some ways, we were going to be studying theory and practice 'in the making' (bell hooks, 1984). Although it seemed awkward, it also seemed necessary to call this emerging paradigm the empowerment-community integration paradigm. The Values of the Empowerment-Community Integration Paradigm Although the empowerment-community integration paradigm in community mental health is not yet as clearly defined as the medicalinstitutional or community treatment-rehabilitation approaches of the traditional paradigm, several writers have suggested some general parameters of this new paradigm. Based on our experiences and our review of the literature, we believe that there are at least three concepts or values of this empowerment-community integration paradigm: (a) stakeholder participation and empowerment, (b) community support and integration, and (c) social justice and access to valued resources (Carling, 1995; Trainor and Church, 1984; Trainor, Pomeroy, and Pape, 1999; Nelson and Lord, 1996; Nelson, Walsh-Bowers, and Hall, 1998). In Table 2.1 we outline some ways in which the empowerment-community integration paradigm and the traditional paradigm differ with respect to these three concepts or values. We want to emphasize again that the presentation that follows is not meant to be 'the final word' on the empowerment-community integration paradigm, but rather our point of departure for this study. We expected that our research would help us to clarify key concepts, as well as provide outcome indicators of those concepts or values. Indicators of change towards the values of the empowerment-community integration paradigm can include both 'hard' and 'soft' outcome indicators. 'Hard' indicators are concrete and relatively easy to measure, such as employment, housing stability, educa-

Towards an Empowerment-Community Integration Paradigm

21

tional attainment, and income. 'Soft' indicators are more subjective and involve meaning, perception, judgment, and feeling on the part of individuals. Feelings of personal empowerment and satisfaction are examples of soft indicators, which are more difficult to measure, but which can be tapped through qualitative methods. In our research, we wanted to determine both hard and soft indicators of change towards the empowerment-community integration paradigm. Stakeholder Participation and Empowerment

Stakeholder participation and empowerment refers to the process by which individuals participate with others while gaining increased control over their lives (Lord and Hutchison, 1993; Prilleltensky, 1994; Rappaport, 1987). In her book Powers of the Weak (1980), Elizabeth Janeway argued that vulnerable people have a kind of power that is both personal and collective. Empowerment research conducted by one of us supports this notion that empowerment can be most aptly expressed as 'self in community' (Lord, 1997). Empowerment as personal control, then, is an active process of engagement in the social world that is influenced by relationships and context. Rappaport (1987) also asserted that an empowerment approach is inherently ecological in nature and considers multiple levels of analysis (i.e., person, organization, community settings, arid social policy). So what exactly does stakeholder participation and empowerment look like in practice? In part this concept suggests that consumer/survivors and family members have increased 'voice and choice' in their community and in their relationships with mainstream mental health agencies and professionals. In the traditional paradigm, consumer/survivors and family members are conspicuously absent, or they have only token representation, on the governing bodies of mental health agencies (boards of directors, committees, planning meetings), or in community life. In effect, they are excluded and have no voice. In the empowerment-community integration paradigm, consumer/survivors and family members are visible, numerous, and vocal in such governing bodies. Consumer/survivors and family members also exert influence and control over the decision-making processes within such organizations. They have the power to 'make things happen.' Thus, if there is a shift towards the value of stakeholder participation and empowerment, we would expect both an increase in the numbers of consumer/survivors and family members participating in organizational decisionmaking and increased perceptions of control and influence of

22

Part 1: Setting the Context

consumer/survivors and family members in those roles. As McCubbin and Cohen (1999) have noted, consumer/survivors are agents of policy change, rather than being seen as policy objects. The value of stakeholder participation and empowerment is also evident at the level of the relationship between consumer/survivor and support worker or professional researcher. In the traditional paradigm, there is a clear power imbalance between service providers and consumer/survivors and between researchers and research participants (McCubbin and Cohen, 1996). The professional service provider or researcher is deemed to be the 'expert' who knows best, while the person with a mental health problem, whether he or she lives in an institution or in the community, is a patient or client. In the empowerment-community integration paradigm, in contrast, there is a realignment of roles, with consumer/survivors directing the support process. Feminists such as bell hooks (1984) have reconceptualized power, so that it is no longer based on individualism and 'power over,' but instead emphasizes 'power with.' This is the meaning we would attach to new roles for consumer/survivors and professionals. Through participation, consumer/survivors exert more choice and control in their lives, while professionals function as enablers and facilitators (Lord and Hutchison, 1993). Dunst and Trivette (1989) have called this new approach an 'empowerment and enablement' approach to case management. We prefer to call the new approach 'support coordination' instead of the term 'case management,' which is more suggestive of the traditional paradigm. As consumer/survivors exercise more power, professionals often struggle with a shift in roles from 'expert-technician' to 'resource-collaborator' (Constantino and Nelson, 1995). We have experienced this in our own work as researchers and reflect on this in the final chapter. This role strain and change can be just as challenging for consumer/survivors and family members, as they become active participants and wellrepresented in mental health planning, implementation, service delivery, and program evaluation. One foundation of this new collaboration is the valuing of experiential knowledge of consumer/survivors and family members, along with the scientific and clinical knowledge of professionals (Trainor et al., 1999). Research in the empowermentcommunity integration paradigm is collaborative, participatory, and action-oriented and is guided by the belief that both consumer/ survivors and professionals have something to contribute and to learn (Nelson etal. 1998a).

Towards an Empowerment-Community Integration Paradigm

23

One indicator of a shift towards the value of stakeholder participation and empowerment in the relationship between professionals and consumer/survivors is the extent to which staff experience shifts in their roles from expert to facilitator. Also, increased control over the support coordination process on the part of consumer/survivors is an indicator of change (see Table 2.1). The development of autonomous consumer/survivor organizations is another concrete indicator of the empowerment-community integration paradigm. These organizations emphasize self-help, mutual aid, peer support, consumer/survivor businesses, and advocacy (Humphreys and Rappaport, 1994; Nelson et al., 1998a). Moreover, such organizations are entirely controlled by consumer/survivors, and they emphasize member participation in all aspects of the organization. They are becoming significant 'sites of resistance' for consumer/survivors. Kathryn Church has written about the growing number of businesses that are operated exclusively by consumer/survivors as 'places where people who share similar experiences can congregate and develop relationships with each other as peers and co-workers. They provide space and time for survivors to meet together, to speak in their own language/s, for their own purposes, without professional intervention' (Church, 1997:24). Consumer/survivor organizations obviously differ widely in their areas of focus, but many are starting to have influence on the policies and practices of mainstream mental health organizations (Chamberlin, 1978). Overall, it is our experience that the survivor movement also varies in its understanding and commitment to empowerment. Some consumer/survivor organizations that we know of have reproduced the disempowering features of the traditional paradigm, such as sheltered workshops or drop-in centres, in which there is not an orientation towards empowerment and recovery. On the other hand, there are many consumer/survivor organizations with a strong orientation towards member participation and empowerment. This observation is consistent with Emerick's (1990) findings about consumer/survivor selfhelp organizations in the United States. A number of mental health professionals have seen the value of stakeholder participation and empowerment. In Canada the Canadian Mental Health Association / National Office (CMHA) has developed a Frameivork for Support, which places a strong emphasis on the participation of consumer/survivors and family members (Trainor and Church, 1984; Trainor et al., 1999). Moreover, the Framework for Support project

Table 2.1. Changing paradigms in community mental health Traditional paradigm

Emerging paradigm

Key values

Medical-institutional

Community treatmentrehabilitation

Empowermentcommunity integration

Stakeholder participation and empowerment

• Lack of voice and choice of consumer/survivors and family members

• Consumer/survivors and family members have input, but professional is still in control

• Consumer/survivor dependence on professionals • Patient role • Professional as expert

• Consumer/survivor dependence on professionals • Client role * Professional role as expert

• Increased power, choice, control, and participation of consumer/survivors and family members in their relationships with professionals • Autonomous consumer/survivor and family organizations • Citizen role • Professional role focuses on collaboration and enabling

• Professional services

• Professional, paraprofessional, and volunteer services

• Institutional locus

• Community-based locus

• Stigma, focus on illness

• Stigma, focus on psychosocial deficits

• Segregated institutions

• Residential continuum of housing programs • Vocational training and placement

Community support and integration

Social justice and access to valued housing resources

• Sheltered workshops

• Self-help/mutual aid, individualized support, and informal supports • Integration in community settings and social support networks • Focus on whole person, recognition of strengths and potential for growth and recovery • Supported housing and homes • Supported employment and education

Towards an Empowerment-Community Integration Paradigm

25

has produced documents that have outlined the importance of consumer/survivor participation, identified barriers to participation, and developed strategies to increase participation (Hutchison, Lord, and Osborne-Way, 1986; Pape, 1988). In the United States, the Center for Community Change through Housing and Support has also emphasized consumer/survivor and family participation and empowerment in changing mental health systems (Carling, 1995). Community Support and Integration Community support and integration means being a valued part of the community, not just being in the community (Lord and Pedlar, 1991). To use John McKnight's (1995) language, in the traditional paradigm individuals are surrounded by a sea of professionally delivered services, which stigmatize and set people apart from the community. For example, in the community treatment-rehabilitation approach, recreation for consumer/survivors may involve a support worker taking out a group of consumer/survivors every Friday to bowling. In contrast, the empowerment-community integration paradigm would entail asking consumer/ survivors what type of recreation interested them, if any. Then, if individuals were interested in bowling, a support worker would help individuals to go bowling with other community members or perhaps join a bowling league. Thus, the development of relationships with others who are not consumer/survivors and increased participation in typical community settings are indicators of change towards the value of community support and integration. The empowerment-community integration approach asserts that when people are a part of community, there is a focus on the whole person, including his or her strengths, capacity for growth, and potential for enhancing the community (Carling, 1995). Larry's story showed us the power of building on strengths and the importance of a network of relationships in our lives. Our experience is that 'community' in the traditional mental health paradigm is often used to mean 'communitybased services.' In the empowerment-community integration paradigm, we are talking about something quite different! Community can be a place, perhaps a neighbourhood setting. It can also be all the collective associations, which include groups of people who come together around a common interest. And community can be networks of people who care for each other, not constrained by geography. Most importantly, in community there is that sense of community or belonging, that

26

Part 1: Setting the Context

is, a feeling of being connected and cared for. All of these qualities reflect the need for people with mental health problems to have lives with 'texture' - rich in diversity, meaning, and connections (Pedlar et al., 1999). The commitment to community and inclusion is becoming a central tenet of all disability movements throughout the world (Carling, 1995; Condeluci, 1991; O'Brien and O'Brien, 1996; Schwartz, 1997). David Schwartz (1997) has emphasized that hospitality is central to community, where people feel welcomed and included in community life. Unfortunately, many citizens with mental health problems have experienced unwelcoming communities. Although community has been eroded somewhat in most cities and towns (Putnam, 1993), writers like McKnight (1995) and Schwartz (1997) have argued that welcoming community is everywhere, we just have to find it and encourage it! Integration of people with significant mental health problems into community requires that we pay attention to informal support, not just the formal supports associated with services. The concept of empowerment is complemented by community support and integration with its emphasis on community participation, informal support networks, and psychological sense of community (Sarason, 1988). The implications of this value for organizational and program practice are (a) the need to shift from a predominance of professional services to more autonomous self-help and mutual aid groups and organizations for consumer/survivors and family members, (b) emphasizing informal supports from network members, (c) the importance of integration into normal community settings, and (d) the need to focus on the whole person and his or her strengths, not the person's deficits or disability (Carling, 1995; McKnight, 1995; Saleebey, 1992; Trainor et al., 1999). Stigma is reduced when the community welcomes and recognizes not only the strengths of its members but also the potential for recovery of people who have experienced mental health problems. There are at least two current ways of enhancing the value of community support and integration. One approach, somewhat of a paradox, is a separatist approach, in which consumer/survivors form their own selfhelp and mutual aid organizations (Chamberlin, 1978; Weitz, 1984). Chamberlin (1978, 1990) has noted the strong sense of community and solidarity that consumer/survivors experience in such organizations, arguing that the relationships that are formed between peers and the sense of acceptance cannot be experienced to the same deep level with professionals. The other approach involves partnership (Chamberlin, 1978), in

Towards an Empowerment-Community Integration Paradigm

27

which consumer/survivors work with their social networks to promote informal supports and community integration. A key feature of this approach is its person-centred focus. The individual directs the helping process, and the services and supports that are brought forward to help the person realize his or her goals are very individualized. Professionals thus may have a role to play in this process. This consumer-directed process is the essence of the CMHA/National's Framework for Support and empowerment approaches to support (Dunst and Trivette, 1989). Integration into community settings, rather than segregation into a service system, is the main goal of the empowerment-community integration paradigm. Social Justice and Access to Valued Resources

The third value of the empowerment-community integration paradigm, social justice and access to valued resources, draws attention to the fair and equitable allocation of resources in society (Prilleltensky, 1994; Prilleltensky and Nelson, 1997). Do people have access to valued resources, such as affordable and desirable housing, an adequate income, and meaningful employment and education? Stakeholder participation, empowerment, and community support and integration need to be accompanied by improvements in the concrete living conditions that contribute to the quality of life of consumer/survivors' (Nelson etal. 1995). Groups that have focused on social justice in our society have not typically included mental health issues as part of their agendas. In the empowerment-community integration paradigm, we are suggesting that connections between the personal and the political become more conscious. As experienced most dramatically by the feminist movement, when people share their experiences of oppression with each other, they understand that their experiences are not isolated incidents, but part of systems of domination (Lord and Dufort, 1996; Prilleltensky and Nelson, 1997). When social justice is the goal, consumer/survivors and other groups work in solidarity for change. As a recent study illustrated, however, consumer/survivors are beginning to feel strongly that advocacy should be driven by them, not by others working on their behalf (Pulice, McCormick, and Dewees, 1995). People supporting the empowerment-community integration paradigm advocate for access to normal jobs, education, and housing that are available in the community (Carling, 1995; Drake et al. 1996; Hogan and Carling, 1992; Parkinson et al., 1999). The essence of 'supported'

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Part 1: Setting the Context

employment and housing is that consumer/survivors 'choose, get, and keep' the type of work and home that they prefer (Bond et al. 1997; Hogan and Carling, 1992). Businesses run by consumer/survivors and housing cooperatives are other ways of promoting access to valued resources (Church and Reville, 1989; Trainor and Tremblay, 1992). CMHA/National's revised Framework for Support (Trainor et al., 1999) includes access to resources as a key element of the new framework: 'It [the new framework] also acknowledges fundamental elements to which every citizen should have access: housing, education, income and work' (Trainor et al., 1999, p. 297). Access to these 'elements of citizenship' (Trainor et al., 1999, p. 299) is very important for psychiatric consumer/survivors, many of whom live in conditions of poverty, unemployment, and poor quality housing. In the traditional paradigm, policy changes were centred in mental health legislation. In the empowerment-community integration paradigm, the principles of social justice and access to valued resources demand that policy changes encompass other areas that impinge on equity and community. Progressive social policies are thus required in the health, education, housing, and economic spheres. Government support for consumer/survivor initiatives is another example of resource reallocation towards the value of social justice (Mowbray et al., 1988; Trainor et al., 1997; Trainor and Tremblay, 1992). Increased access to employment, education, income, and housing is a concrete indicator of a shift towards the value of social justice. In its focus on social justice, the empowerment-community integration strives to address these crucial 'determinants of health,' which are relatively neglected in the traditional paradigm. Shifting the Paradigm in Community Mental Health The traditional paradigm in mental health is strongly associated with images of institutional buildings and settings that are sterile, inhumane, and distant from the community. For many years these institutions and the paradigm they represent did not change much. Even when community mental health centres in the United States were created, one of the first steps in this national program was the construction of new buildings. Chu and Trotter (1974) suggested that the professionals involved in the development of these centres in the United States suffered from an 'edifice complex,' and that these new centres reproduced the institutions that they were designed to replace. Sarason (1972) has asserted

Towards an Empowerment-Community Integration Paradigm

29

that it is difficult for those involved in the creation of alternative settings to free themselves from traditional assumptions and practices, and that in the creation of new settings buildings can be a distraction from the purpose of the new setting. Similarly, many managed care systems have become beholden to 'cost factors,' which often acts as a detriment to creativity. Sometimes metaphors and imagery can help people to see possibilities for new and different approaches. As David Schwartz (1997) pointed out, with the metaphor of 'calling 911' every time there is a disability issue, informal community responses and other possibilities get ignored. We wondered what new metaphors or imagery could be used to help shift the paradigm in community mental health. Could an ecological metaphor of interdependence, adaptation, and change replace the dominant mechanistic metaphor of traditional psychiatry (e.g., brain-behaviour mechanisms) (Kelly, 1986)? Could the imagery of the traditional paradigm, institutional buildings, and professionals be replaced with imagery of natural community settings with people engaged in civic life (e.g., like people using a community library for personal reflection and relationship-building)? What would such a paradigm shift look like in practice? These were some of the questions on our mind as we began to think about how to study the shifting paradigm in our community. We recognized that paradigm changes involve challenging the assumptions of existing theory and practice. Watzlawick, Weakland, and Fisch (1974) referred to this as 'second-order change.' Similarly, Seidman and Rappaport (1986) noted the importance of 'reframing the problem,' since the way a problem is initially defined often dictates the solutions that will be used to address the problem. The shift from the medical-institutional approach to the community treatment-rehabilitation approach is an example of first-order change (Watzlawick et al., 1974). While the location of intervention has changed, and some of the actors and techniques have changed, the basic assumptions remain unquestioned and intact. In contrast, the empowerment-community integration paradigm assumes that mental health problems do not lie solely within the individual, but also within the mental health system, the community, and in social policy, thus requiring systemic as well as individual change (Carling, 1995). The language and discourse of the empowerment-community integration paradigm is sociopolitical. People with serious mental health problems refer to themselves as consumers, survivors, or consumer/survivors, not

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patients or clients. Finally, the goal of the empowerment-community integration paradigm is empowerment, involvement in community life, and emancipation from oppression (Lord and Dufort, 1996). A Multilevel Ecological View of Paradigm Shift This understanding led us to frame the research within an ecological approach (Bronfenbrenner, 1979; Kelly, 1986). We knew that studying only the changes of individuals would not give us insights into the paradigm shift or the complexity of change. An ecological approach considers multiple levels of change and analysis, including social policy, the community, organizations, and individuals (Rapapport, 1987). These levels are interdependent, with change in one level having ripple effects on other levels (Hall, Nelson, and Smith Fowler, 1987). In this sense, we conceptualize mental health as a social system, not purely a servicedelivery system (McCubbin and Cohen, 1999). Although we shall present findings in each of these areas in subsequent sections, here we want to briefly outline some current theory that influenced our research questions and design. We want to emphasize that we were not studying an espoused theory, even though there are strong theoretical elements in the empowermentcommunity integration paradigm. Rather, we were studying 'theory in use,' by examining how one community experienced change. Argyris (1976) has warned that we need to pay attention to what people do (theory in use), not just what they say (espoused theory). With this in mind, we knew we would have to listen to stakeholders and observe various contexts and settings in our community. Social Policy and Regional Planning Change - Resource Mobilization Theory

While there have been many attempts to change mental health systems, most of these reforms have achieved limited success (Rochefort, 1988; Simmons, 1990b). Elsewhere, Geoff (Nelson, 1994) has argued that resource mobilization theory (Jenkins, 1983; Morris and Mueller, 1992) provides a useful framework to understand systemic change in mental health policy. Resource mobilization theory posits that the definition of a social problem is a claims-making activity (Humphreys and Rappaport, 1993; Spector and Kitsuse, 1987). In other words, social change is an intensely political process, not a rational response to problem identification.

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According to resource mobilization theory, the organization of a social movement is required to create real and lasting social change. Processes facilitating social change include external support from individuals and organizations in power, having a strong internal organizational base of support, and public support. Factors that impede change include opposition from powerful individuals and organizations, lack of internal organizational bases of support, and opposing ideological trends (Jenkins, 1983; Morris and Mueller, 1992). From this perspective, it was becoming clear to us that understanding 'shifting the paradigm' would need to consider the role that consumer/survivors and other stakeholders played in the change process. Since many efforts at social change have given support to the proverb, 'the more things change, the more they remain the same,' resource mobilization theorists (Jenkins, 1983; Mueller, 1987) have asserted that there is a need to define clearly what constitutes social change. We knew that, in order to determine if policy changes reflected 'second-order' or paradigm shift change (Watzlawick et al., 1974), we would need to address several questions, including: Who called for the change? What values did the new policy reflect? Whose interests were served by the policy? These were some of the questions we asked about the Ontario policy context. Some potential social policy outcomes congruent with the empowerment-community integration paradigm are tangible government support for consumer/survivor and family initiatives (Mowbray et al., 1988; Trainor et al., 1997), mandated participation of consumer/survivors and family members in policy and planning bodies (Wilson, 1996), and the reallocation of funding from institutions into community support organizations (Blanchet-Cohen, 1993; Stein and Ganser, 1983; Wilson, 1989). Organizational Change - Learning Organization Theory

Most community supports for psychiatric consumer/survivors are delivered through organizations. For the empowerment-community integration paradigm to 'take hold,' we knew that the organizations we were studying would have to have demonstrated significant change in the way they 'do business.' In this section we briefly describe two approaches to organizational change that are relevant to the community mental health organizations that we studied: (a) organization development and (b) the creation of alternative settings. Both kinds of settings were part of our study.

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Organization development, which has its roots in the work of Kurt Lewin (1946) and his students in the 1940s, is not simply interested in improving efficiency and effectiveness (first-order change); rather, it strives to change the basic nature of the system (second-order change). Many organizations are rooted in the traditional Weberian paradigm with a hierarchical structure in which workers are in a subordinate role to management (McGregor, 1960). Organization development is a humanistic approach that aims to change the culture of an organization to one that recognizes the intrinsic motivation of individual members and supports their personal growth (Bargal and Schmid, 1992). In recent years changes in human service organizations are being framed around participatory decision-making processes that encourage planning and strategic changes from the 'bottom up' (Carling, 1995; Handy, 1995; Lincoln, 1985). This means that stakeholders from all of the different domains (board members, managers, staff, and service users) all participate in organizational change (Handy, 1995; Kouzes and Micos, 1979; Lincoln, 1985; Toulmin and Gustavsen, 1996). Some argue that the key to organizational change in this era is to effectively distribute power and purpose throughout the organization (Block, 1993; Light, 1998). Consistent with this notion is the concept of the 'learning organization,' which is characterized by openness, team learning, shared vision, and high degrees of participation (Senge, 1990). Shared vision and common purpose are central ingredients in learning organizations (Bergquist, 1993; Block, 1993; Kluger and Baker, 1994; Senge, 1990). The creation of alternative settings is another approach to organizational change (Sarason, 1972). When mainstream services are experienced by service users as inaccessible, unhelpful, and/or unresponsive, people who have used such services may have no desire to attempt to reform them. Change agents might rather spend their time creating an alternative setting. This is precisely what Chamberlin (1978) and other consumer/survivors did in Vancouver in the 1970s, creating a consumer/survivor-controlled organization called On Our Own. Alternative settings are characterized by a strong emphasis on values and ideology, which includes identification with a social movement (Reinharz, 1984; Rothschild-Whitt, 1976). Such organizations often have a dual orientation of providing support and making social change (Reinharz, 1984). Members often work as volunteers and such organizations tend to operate on shoestring budgets (Reinharz, 1984). Alternative settings also have a collectivist as opposed to hierarchical structure,

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and there is a strong emphasis on member participation and equality (Reinharz, 1984; Riger, 1984). Because of their strong emphasis on values and member participation, we believe that many self-help and mutual aid organizations for psychiatric consumer/survivors can be understood as learning organizations (Senge, 1990). The membership of learning organizations is encouraged to develop a vision of where it wants to be. The struggle to actualize the vision and values of the learning organization in the context of current realities guides the organization as a whole and the dayto-day actions of members. Through dialogue, support, and personal reflection, members generate innovative practices (Manning, 1999). Individual Change - Personal Empowerment Theory

In the traditional paradigm, studies of the effectiveness of different treatment and rehabilitation programs have used measures of hospitalization and reduction in symptomatology as outcome indicators. By these criteria, a person with a serious mental illness who lives an isolated existence in run-down housing; who performs monotonous tasks in a sheltered workshop for little or no pay; and who is asymptomatic can be considered a 'success' (Nelson and Smith Fowler, 1987). Even recent recommendations that the range of individual outcome indicators be broadened to include dimensions of life satisfaction, fulfilment, safety, and welfare neglect issues of choice, control, participation, access to valued resources, and community integration (Rosenblatt and Attkisson, 1993). Those who support the empowerment-community integration paradigm do not ignore individual change, but place it in a context in relation to other levels of change. Personal empowerment theory is mentioned most often as the guiding perspective (Lord and Hutchison, 1993; Lucksted, 1997; Manning, 1999; Parsons, 1997; Rapapport, 1987). Empowerment is often referred to as the process by which individuals participate with others while gaining increased control over their lives (Lord and Hutchison, 1993; Prilleltensky, 1994; Rappaport, 1987). Paradoxically, as we asserted in Chapter 1 in the discussion of stakeholder participation and empowerment, empowerment itself is a multilevel construct. Zimmerman (1995) has argued that empowerment is a transactive process between individuals and their environment. Lord and Hutchison (1993) found several factors that facilitated the personal

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empowerment process, including gaining awareness by experiencing a life crisis or transition, acting on anger or new information, connecting with others for support and learning, and participating and contributing to community life. Similarly, consumer/survivors have identified qualities of the environment that promote personal empowerment, including decision-making power, access to information and resources, and a range of options from which to make choices (Chamberlin, 1997). These notions place 'relationships and community' at the centre of empowerment (Lord, 1997). Empowerment also sheds light on possible outcomes that we might see within the empowerment-community integration paradigm. Whyte (1996) argued that consumer/survivors themselves should identify what is empowering to them. To this end, studies with consumer/survivors in the United States have found that consumer/survivors define personal empowerment in terms of self-determination, decision-making, independence, voice, skills, assertiveness, self-understanding, and selfesteem (Chamberlin, 1997; Manning, 1999). Many of these qualities are similar to those elaborated by Zimmerman (1995) in his conceptualization of empowerment as consisting of intrapersonal (e.g., perceptions of control), interactional (e.g., critical awareness, skill development), and behavioural components (e.g., participation). Closely related to the concept of empowerment is that of recovery (Anthony, 1993; Baxter and Diehl, 1998; Deegan, 1988; Young and Ensing, 1999). While empowerment has been used more in the context of a variety of different oppressed groups (e.g., women with low income, people with disabilities) (Lord and Hutchison, 1993), recovery has recently been used in the specific context of people with mental health issues. Anthony (1993:19) stated that 'recovery is a deeply personal, unique process of changing one's attitudes, values, feelings, goals and skill and/or roles.' Like empowerment, recovery has been viewed as a process with individuals moving through different phases, from dependency to independence (Baxter and Diehl, 1998; Deegan, 1988; Young andEnsing, 1999). Consumer/survivor accounts of their journeys of empowerment and recovery point to many of the themes of the empowerment-community integration paradigm (Deegan, 1988; Howie the Harp, 1994). Opportunities for self-determination and participation, information, education, respect, belonging, mutual aid, work, and independent housing are some of the qualities that consumer/survivors have identified as contributing to their personal empowerment (Chamberlin, 1997; Manning,

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1999). Consumer/survivor accounts of their experiences of empowerment and recovery go beyond restoration of mental health, encompassing personal growth and improved quality of life (Baxter and Diehl, 1998; Deegan, 1988; Parkinson, 1999; Young and Ensing, 1999). Janeway (1980), in writing about women's empowerment, described the importance of women's awareness of their personal power and of the potential of connecting with other women. Church (1993, 1996) has emphasized how difficult yet crucial it is for consumer/survivors to have power over valued resources. These insights about empowerment point us towards some possible individual outcomes that we might anticipate within the empowerment-community integration paradigm. More than fifteen years ago, Anthony, Cohen, and Farkas (1982) explicated the rehabilitation approach in their article entitled 'A Psychiatric Rehabilitation Treatment Program: Can I Recognize One if I See One?' We believe it is time to identify the key characteristics for the empowerment-community integration paradigm in community mental health. Summary and Reflections As researchers and citizens, we have witnessed several waves of change in our lives. We have been influenced by the feminist movement, by constructivist approaches to research, and by the resurgence of 'community' in the disability field. In the past few years, much of our work has engaged us in studying 'promising approaches' in mental health and related fields. As we have come to understand the empowerment-community integration paradigm in community mental health, its potential has excited us. Here we see the possibility that the lives of citizens with serious mental health problems can be addressed in a holistic manner. We have wondered for some time if the values of this empowermentcommunity integration paradigm could be implemented and studied. As we began organizing our study in Kitchener-WTaterloo, we were also struck with the reality and challenge of implementing so many complex ideas. We expected that the empowerment-community integration paradigm would violate some people's idea of what is common sense and therefore would be resisted. We also knew there might be downsides to the empowerment-community integration paradigm that we had not anticipated. In this chapter we have outlined the differences between the traditional paradigm and the empowerment-community integration para-

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digm in community mental health, and we have elaborated what we believe to be the key values underlying the empowerment-community integration paradigm. We believe that it is important to clearly distinguish the values and key concepts of different approaches to community mental health. Laying this conceptual groundwork is a necessary condition for examining whether or not, and to what extent, there has been a paradigm shift in community mental health in Kitchener-Waterloo. We want to clarify that we do not believe that the empowerment-community integration paradigm is necessarily anti-psychiatry, anti-medical treatment, or anti-rehabilitation, although there are some proponents of this paradigm who are opposed to psychiatry, psychotropic treatment, and so on. Also, we do not see the debate over whether mental illness exists or not to be a particularly fruitful one. In our view, there are biological, psychological, and social risk factors for mental illness. The empowerment-community integration paradigm does not necessarily deny biological risk factors or the need for treatment, but it seeks to place such issues in a broader ecological context of power, community, and social justice. How this paradigm can address issues of treatment and symptom management is a topic that we consider in the last section of the book. We have also briefly described potential components of a paradigm shift. We made the decision to examine social policy change, organizational change, and individual change as the main levels of change. We struggled with our findings about community change and, because of their nature, have put these within the other sections. We now turn to a presentation of the objectives and methods of this investigation of paradigm shift in community mental health.

Chapter Three

'Nothing about Me without Me': Research Approach and Methodology

The right to evaluate mental health services by a consumer/survivor could be similar to a civil jury's findings based on witness testimony. Psychiatric consumer/survivors are both witnesses to the system and the reason for the system's existence. The system serves them.

This statement, made by one of the consumer/survivor research assistants who worked on this project, points to the importance of consumer/survivor participation in research and evaluation. Since mental health organizations are intended to support consumer/survivors, those individuals who use those supports should have the right to evaluate them. A slogan originating from the South African disability movement, 'nothing about me, without me,' captures the essence of this point (Leff et al., 1997), which was a central theme in our research approach arid methodology. Before the Beginning Planning the Study The history of the study started in May 1995, when the three of us began to talk about changes in mental health policy and practice that we had noticed in our home community. Three local community mental health organizations, the Canadian Mental Health Association / Waterloo Regional Branch (known locally as CMHA), Waterloo Regional Homes for Mental Health, Inc. (known locally as Waterloo Regional Homes), and Waterloo Region Self Help (known locally as WRSH, which is pronounced 'Wersh') had each made changes in their organizations and

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the ways that they provided supports to citizens with mental health problems. Our discussions became more and more centred on developing a vision for future research with these three organizations to determine whether or not there was a shift towards the values of the empowerment-community integration paradigm. Although there have been descriptions of efforts to make fundamental changes in practice and/or policy in community mental health, most of these have not been based on any systematic investigation and analysis. Moreover, no previous studies, that we are aware of, have comprehensively examined changes at the following levels of analysis: (a) social policy and regional planning, (b) the organization, and (c) the individual. Given the lack of information on this topic, we believed that our research would help to fill a gap in knowledge on an issue that was of great importance to people with mental health challenges, their family members, service providers, advocates, planners, and policy-makers. This research study was a logical evolution of our previous work and interest. As we noted in Chapter 1, the three of us had academic and community research backgrounds with strong interests in the areas of mental health, disability issues, and community change. Each of us has had a long-term working relationship with the three community mental health organizations in Kitchener-Waterloo, involving collaborative work on issues related to research and evaluation, planning, consultation, and advocacy. Thus, we believed that trust could be built quickly and that genuine collaboration and partnership could occur. We also considered that our research should push the boundaries of traditional science by shifting our role as researchers from 'expert' to 'facilitator.' This approach would lead to an integration of experiential and academic knowledge (Trainor et al., 1999). We wanted to make our study as collaborative and useful an experience as possible for everyone involved. Following the above assumptions, the proposal to SSHRC (which managed the joint SSHRC/HRDC initiative) was developed in a collaborative manner. The three of us met over a two-month period with the executive directors of the three community mental health organizations to shape a proposal for our future study. During our initial meetings with the executive directors (John Jones, Wendy Czarny, and Anne Tschirhart), they saw the value in a study that would help in understanding both the process of change and change outcomes within their organizations and the community. So, the three executive directors helped to formulate research questions, and they reviewed drafts of the proposal and wrote letters of support to the funder.

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In terms of the structure of the project, we decided to have (a) a local steering committee, (b) a research team, and (c) a national/provincial advisory committee. We envisioned consumer/survivor researchers, students, academic and community researchers all working together on the research. We also decided that our project would be located and managed at the Centre for Research and Education in Human Services. The centre is an independent, non-profit, community-based organization, located in downtown Kitchener, with sixteen years of experience in partnership building and participatory action research. It is funded through a combination of research grants, contracts, and revenue from workshops. John was one of the founders of the centre and was the coordinator for its first ten years of operation, and Joanna is the current centre coordinator. The centre has a provincial and national reputation of working collaboratively with stakeholders when conducting research, and its work is committed to innovation, promising practices, and social change. A strong national network of collaborators attracted to the issues of social arid organizational change and the development of responsive and supportive communities supports work at the centre. The centre also has a proven history of building bridges between academic and community partners, and between families, service users, service providers, and policy-makers. As well, it has shown leadership in the creation of awareness, policies, and practices that advance equitable participation and integration of all members of our communities. Having a community-based research centre play the coordinating, mediating, and organizing roles within the project created a safe community place for our study, which linked all partners. The centre is a place where people feel welcomed and comfortable in 'dropping in' and in exchanging critical reflections about mental health issues. The research proposal was submitted in July of 1995. At the beginning of December 1995 we learned that we had successfully obtained funding from the SSHRC competition. Just before Christmas of 1995 we organized a wine and cheese party at the centre for everyone involved in developing the proposal to celebrate our success and to orient members to the first phase of the research. Purpose and Objectives of the Research

The overall purpose of the research was to understand the experience of change as three community mental health organizations strove to

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implement an empowerment-community integration. The specific research objectives were: 1 To describe the historical and policy context in which the change processes were initiated 2 To understand how the leaders and founders of the three settings envisioned the differences between the rehabilitation-treatment approach and the empowerment-community integration approach and the different pathways that were taken to shift paradigms 3 To develop an understanding of changes in both processes and outcomes, including an analysis of factors that facilitate and inhibit the achievement of positive outcomes 4 To understand changes at multiple levels of analysis (social policy, regional planning, community, organization, relationship, and individual) and how changes at different levels are interrelated 5 To understand those changes as experienced by three stakeholder groups: consumer/survivors, family members, and management/staff of community mental health agencies. Our Research Approach

We used research methods that were consistent with our values and the values of the empowerment-community integration paradigm. The three of us believe in the importance of developing strong research relationships with community settings. Forming partnerships between ourselves and the three mental health organizations and developing research questions were the initial priorities. As we formulated the questions, we decided to use a social constructivist paradigm, participatory action research approach, and qualitative methods. Social Constructivism

Lincoln and Cuba (1985) have elaborated on five assumptions of a social constructivist paradigm and have suggested different methods for verifying the authenticity of the research findings in terms of each of these assumptions. The five assumptions are as follows: 1 There are multiple constructions of the nature of reality. In our research, consumer/survivors, family members, and service providers may conceive of the nature of community and mental health systems in different ways, because of their different social positions and life

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experiences. Thus, it was important for us to obtain the views of these different stakeholder groups about the nature of change. To ensure that we captured participants' constructions adequately, we used several methods of feedback. First, each participant who provided information was given the opportunity to review the transcript of his or her interview to verify its au then deity. Second, both oral and written feedback reports were provided during each phase of the research, and participants again had the opportunity to comment on the accuracy of findings. 2 There is an interactive relationship between different partners in the research. We, as the researchers, were not detached, objective observers, but rather engaged participants in the research. Both our previous and current involvement with the three organizations influenced our research process. Although we realized that we could not remove our biases, we tried to always be aware of them. We utilized and described the systematic steps we had taken in the data analysis (the audit trail), so that others who wished to verify our findings could do so. Having participants check the accuracy of our findings and the adequacy of our interpretations of the findings also helped to ensure that we were not simply presenting our viewpoints. 3 There is a very tentative position with regard to the transferability of the findings to other settings. We did not believe that the findings based on the three organizations and its members could be readily generalized to similar settings. Rather, we believed that the nature of change in community mental health in our home community is bound by both time and context. We have tried to provide a rich description of the historical and social context at different levels of analysis, so that when other researchers compare their findings with ours, differences and similarities can be understood within their context. 4 We believe that in large open systems, such as community mental health policy, planning, and practice, it is very difficult to distinguish causes from effects. To be clear, we did not believe that the organizational changes that we described were necessarily causal factors in influencing changes in relationships or the personal empowerment of consumer/survivors. Our purpose was to identify areas of change that occurred within the context of planned and unplanned change processes. A different research approach would have been required to attempt to identify causal linkages between different intervention processes and outcomes.

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5 Finally, our research was very much value-laden. In Chapter 2 we outlined the values of the empowerment-community integration paradigm in community mental health. Our values, and those of the participating organizations, played a central role in this research and in the services and supports each organization provides. We elaborate on this issue of value congruence in the next section. Participatory Action Research Approach

We also decided to implement a participatory action research approach. We believe that research that examines the empowerment-community integration paradigm should be based on, and should strive to implement, those values in the conduct of the research (Nelson et al., 1998a). We defined participatory action research as 'a research approach which consists of the maximum participation of stakeholders, those whose lives are affected by the problem under study, in the systematic collection and analysis of information for the purpose of taking action and making change' (Nelson etal., 1998a: 885). We took several steps to ensure that the process of participatory action research would be congruent with the values of the empowerment-community integration paradigm. First, to promote the value of stakeholder participation and empowerment, we decided to use a steering committee, composed of key stakeholders, to guide the research, and qualitative methods that give voice to people's experiences. To enhance the value of community support and integration, we strove to foster supportive relationships among the various stakeholders (researchers, service providers, and consumer/survivors), and to write about our personal experiences in conducting the research. Finally, we believed that .hiring and training consumer/survivor research assistants and using the research findings for education and/or advocacy would be ways of promoting the value of social justice and access to valued resources. Participatory action research involves a high degree of cooperation between researchers and stakeholders with constant feedback loops and a commitment to using the findings and to raising all participants' consciousness about the problem in its social context (Barnsley and Ellis, 1992; Chesler, 1991; Gaventa, 1993; Rappaport, 1990; Sarri and Sarri, 1992). Participatory action research emphasizes the participation of disadvantaged people in (a) the formulation of the goals of the research, (b) the design of the study and its methods, (c) the collection of information, (d) the analysis and interpretation of information, and (e) the

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formulation of steps to act on the information (Borkman and Schubert, 1994; Brown and Tandon, 1983; Lewin, 1946; Park et al., 1993; Yeich and Levine, 1992). The desired process is one that is democratic, equitable, liberating, and life-enhancing (Stringer, 1996). Using participatory action research helped us articulate some of the assumptions that would inform and influence the research process. As an example, participatory action research and feminist approaches to research are based on the idea that people have unequal status in society (Reinharz, 1992). Therefore, in attempting to understand stakeholders' experiences, particular emphasis was placed on the importance of respecting people's choices and creating an environment in which barriers were reduced so that consumer/survivor voices could be heard. One of the important assumptions was that each participant was considered the expert on his or her experience. By conceptualizing the research relationship in this way, we attempted to alter the traditional power dynamics between researcher and researched with the explicit intention of engaging and empowering research participants (Ristock and Pennell, 1996). In a hospital context, Wadsworth and Epstein (1998) developed a research process that was designed to create a dialogue between consumer/survivors and staff and to build in ways that consumer/survivors could have a strong voice in the setting, while staff would learn to listen non-defensively to the concerns and issues expressed by consumer/survivors. We also used an 'emergent' design in our research. In other words, the research design was flexible and consistent with the value of learning as an ongoing process (Lincoln and Cuba, 1985). This approach allowed those involved in the process to learn as they go, being open to changes in the research design and evolving ideas (e.g., Lord and Ochocka, 1995; Nelson et al., 1998a; Ochocka and Lord, 1998). In participatory action research, the research and action components are more or less intimately linked. Our research focused more on participatory processes than on the action component. The research was a retrospective examination of actions and change strategies that had been taken and a prospective examination of ongoing activities and changes. Thus, the research did not direct action as much as it could have had it been initiated at the beginning of the change processes. The interdependence between the research and action components of the study included the opportunity to confirm changes that were experienced, to clarify concepts, to find a common language and vision across the three settings, and to provide a forum for mutual learning.

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Qualitative Methods

This research relied primarily on qualitative research methods to provide a rich and in-depth description of issues and experiences (Patton, 1990). Qualitative approaches allowed for an examination of multiple levels of the social context, as well as for research with consumer/survivors and family members by giving a voice to their experiences (Lord, Schnarr, and Hutchison, 1987; Nelson, et al., 1998a). The state of knowledge about implementation of the empowermentcommunity integration paradigm in community mental health has been so limited that a qualitative approach, with an emphasis on inductive analysis, was the method of choice for studying these phenomena. At this point in time, it was more important to develop an understanding of the issues and people's experiences and to try to generate hypotheses than to measure changes and test hypotheses. Summary

We would like to stress the importance of the 'before the beginning' stage in our study. The quality and usefulness of the whole project turned on many of the things that were done before our data collection even began. The pre-work that we did with our potential partners before and during development of the proposal and the relationships the three of us had with the community mental health organizations helped us to be prepared to start the research. The Beginning The Host Organizations

The three organizations have a history of implementing and evaluating innovations, and they represent three of the most widely used types of community mental health initiatives in other North American communities: (a) community support, (b) housing, and (c) self-help (or mutual aid). These organizations are described in more detail in Chapter 6. All three organizations are funded by the Ontario Ministry of Health, and they have a history of cooperative working relationships (both Waterloo Regional Homes and WRSH were initially sponsored by CMHA). They make referrals to one another, work together on proposals and mini-projects, and sit on each other's boards and committees.

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Partnership among the Researchers and the Organizations

The structure of the study was based on a partnership among the three researchers and the three community mental health organizations. At the start we put energy into developing good relationships with people from the three organizations. First, we organized information sessions in all three organizations. During these sessions we introduced the purpose of the study, the research questions and methods, and the different vehicles for participation. At the end of each session we asked the participants for questions, concerns, and potential benefits. We found these visits critical in establishing and maintaining future relationships with the participants and with the settings. Most of these meetings were cordial, like the one described here: 'I felt that the study and I were favourably received and that it was useful to have this visit from the point of communicating about the research. It was a friendly visit. It was good to see four consumers sitting at the table. Perhaps they might have asked more questions if it were not a board meeting or if other non-consumers had not been present' (excerpt from researcher field notes). However, one of the meetings was fairly challenging with the researcher feeling like he was on the 'hot seat': 'One person asked me pointblank, "Are you a professional researcher?" I thought for a moment and then said, "Yes, I am, but prefer to think of myself as a community researcher, because I do my research always in partnership with citizens and people who are interested in understanding change. So, as a researcher my job is to listen, to facilitate, to make it easy for people to talk and work together so that we can collect really interesting information about our own lives and our community." I think my openness to having the tough questions asked and to not being defensive seemed to be helpful in keeping a dialogue moving' (excerpt from researcher field notes). Building Structures and Relationships The Steering Committee

The steering committee consisted of representatives from the three organizations and key stakeholder groups (consumer/survivors, family members, and staff). The executive directors were ex officio members of the steering committee, as was a representative from the Waterloo Region District Health Council. The committee met on a monthly basis for just over two years. The steering committee members were involved in all phases of the

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research process including redefining research objectives, developing and implementing data-gathering instruments, verifying research findings, and writing and presenting the results. The committee guided the research process, asked hard questions, challenged assumptions, provided feedback, and served as a resource for the researchers. Discussions about mental health and other ongoing issues in the community were common at these meetings. For example: 'The discussion about the policy context revealed cynicism and fear about the mental health reform process. Criteria not being equally applied; financial resources in jeopardy; and social support potentially withdrawn, which was perceived as a penalty to people when they start to recover. The damaging impact of labels was also noted. These will be issues to be aware of as we begin our next round of policy interviews' (excerpt from researcher field notes). Initially, we observed some hesitation in building authentic relationships among partners. For example, one person was picky and critical about our methods of coordination, while another thought we were 'well-paid professionals.' We expected such 'differences' as part of the participatory action research process. Three different people chaired the steering committee meetings. The first two meetings were chaired by Geoff to establish the process. The remaining phase 1 meetings were led by a service provider from CMHA (Alex). Both phases 2 and 3 were chaired by a consumer/survivor from WRSH (Dave). Dave's leadership brought both practical and symbolic benefits. He walked us through agendas full of research activities, reflections, and planning, always reminding us of the importance of using plain language, of clarifying concepts, and of taking 'smoke breaks.' He also helped to inject humour into the meetings with references to the 'bullets' on the agenda. By playing this active leadership role, he also helped the steering committee members and the consumer/survivors involved in the project feel ownership of the study: 'His leadership represented a shift that had already happened. Consumer/survivors in the past had not taken that role willingly or had not been encouraged to. It also proved we were all equals and felt strongly about that' (steering committee member). In participatory action research, stakeholders act as both participants and co-researchers in the research process. Control and ownership over the research process and research findings should be shared among them. We found these concepts difficult to put into practice, especially in the initial stage, because it involved a shift in traditional roles for

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both researchers and the participants. The following comment from a steering committee member illustrates this point: 'At the beginning I had no idea what was expected. I did not have any background in research and did not understand some of the terms. I did not know what and how research was done and I wanted to be told what to do. However, as the study progressed and my confidence in the committee grew, I noticed that as we all spoke our opinions, ideas, and thoughts, it eased my understanding of the study. I think, for the final two phases it became a true partnership.' As this comment indicates, we were successful in bridging differences and creating a dialogue among the various stakeholders who participated in the project (Wadsworth and Epstein, 1998). The Research Team

Similar to the steering committee, we wanted to make the work of our research team mirror the values of the empowerment-community integration paradigm. Empowerment, meaningful participation, supportive relationships, and access to valued resources (employment and education) were the key values we tried to implement. The project employed and trained five research assistants (three women and two men) and an assistant project manager, Richjanzen. Three of the research assistants were consumer/survivors, each of whom played a liaison role between the project and each of the settings. The research team members were the 'doers' of the project, who participated in all aspects of the research process (e.g., conducting focus groups, analysing the data). Joanna and Rich met regularly with die research assistants to provide training and support, but also to build a positive team climate. They paid attention to the 'small things,' such as the research assistants' comfort levels in doing different tasks, talking with research assistants after they had completed interviews, and reflecting on research activities. It was also important that Geoff and John came to the team meetings from time to time: 'I've always appreciated when Geoff and John would come in and, I know it was only occasionally, but it was wonderful. They gave a broader perspective and I enjoyed my relationship with them as well' (consumer/survivor research assistant). Joanna and Rich represented the research team on the steering committee. However, there were a few occasions when the research assistants also attended steering committee meetings: 'The researchers were an intricate part of the study. When meeting them and feeling their enthusiasm, it rejuvenated us as a steering committee. I also felt how impor-

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tant it was to have researchers who also experienced mental health issues' (steering committee member). The National/Provincial Advisory Committee

The national/provincial advisory committee provided consultation during each phase of the research. Members of this committee included representatives from the Canadian Mental Health Association / National Office, the Canadian Mental Health Association / Ontario Division, the Mood Disorders Association of Ontario, the Ontario Federation of Community Mental Health and Addictions Programs, the Ontario Ministry of Health, and the Ontario Ministry of Health's Consumer/ Survivor Development Initiative. In phase 1 members of the committee participated in a policy forum and provided suggestions for phase 2. In phase 2 they were involved in both consultation and information gathering on recent changes in mental health policy. The committee participated in a community mental health forum in phase 3 and helped in disseminating findings at the conclusion of the study. The relationships among various project players, steering committee, researchers, settings, and the national/provincial advisers grew as the study progressed. The community mental health forum in phase 3 brought all the groups together: 'During the study, the names of persons who participated on the national/provincial advisory committee were just names. I knew from discussions with Joanna and John or with Geoff that these people were key players in how rules, policies, and decisions were made at the larger up levels. But that was about it. The day of our community forum, many of these big names appeared. They cofacilitated groups, led discussions, and chatted with others. That day these people became more than names to me; they became a part of the research process and a part of the team I had worked with. The circle was completed. All parties involved knew each other' (steering committee member). Implementation Multiphased Methodology: What We Did and How We Did It

The research was organized into three phases and provided both retrospective and prospective data on the implementation of the empowerment-community integration paradigm in the three community mental

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health organizations. Having a multiphased study steered by a local committee provided the flexibility to adapt to the changing realities of the three organizations, the community, and social policy over the course of the study. Phase 1 - Preparation and Gathering of Background Information What We Did

The purpose of phase 1 of the research was to gather information relevant to the first two research objectives: (a) to describe the historical and policy context in which the change processes were initiated, and (b) to understand how the leaders and founders of the three settings envisioned the differences between the community treatment-rehabilitation approach and the empowerment-community integration approach and the different pathways that were taken to shift paradigms. This phase of the research began in January 1996 and concluded in September 1996. In Table 3.1, we summarize the information that we gathered from the different organizations and the policy and planning context for each of the three phases. Regarding the first objective (the policy and planning context), we interviewed both local and provincial key informants using semistructured interview guides, and we reviewed and analysed policy and planning documents. The data were coded according to the three values of the empowerment-community integration paradigm. With regard to the second objective (the vision, values, and pathways of organizational change), we interviewed key people in each setting who initiated the change process, again using semistructured interview guides, and we also reviewed and analysed key documents for each setting. The interview data were recorded on a laptop computer by a research assistant who was present during the interviews. The data were coded for key themes in the pathways taken towards change. These themes oriented us as to the changes to examine in more depth in the second phase of the study. A six-page summary of the findings from phase 1 was reviewed and approved by the steering committee and circulated to all of the participants. How We Did It

Phase 1 was important in building the foundation for the study. One of the first tasks of the steering committee was to develop principles for working together. The working principles identified by the committee

Table 3.1 Information Gathered During the Three Phases of the Research Waterloo Regional Homes

Phase

Policy and planning

CMHA

1

• 1 1 informants interviewed (7 provincial key informants, 2 Waterloo Region DHC informants, 2 executive directors) • 1 0 provincial mental health policy and housing documents • 6 Waterloo region DHC mental health planning documents reviewed

• 3 informants interviewed (the executive director and 2 board members) • Agency documents reviewed

• 4 informants interviewed (the executive director, 1 , board member, 1 directservice staff, 1 consumer/ survivor) • Agency documents reviewed

• 1 3 informants interviewed (the executive director, 3 founders, and 9 members) • Agency documents reviewed

2

• 9 informants interviewed (4 provincial key informants, 1 Waterloo Region DHC informant, 3 executive directors and 1 assistant executive director)

• 25 informants interviewed (2 managers, 7 staff, 7 consumer/survivors, 3 volunteers, and 6 family members)

• 23 informants interviewed (1 manager, 6 staff, 14 consumer/survivors, and 2 family members)

• 14 informants interviewed (1 manager, 1 staff, 5 members, 4 volunteers, 3 WRSH members who participated in the other 2 organizations)

3

• 8 community meetings observed • 3 provincial mental health policy documents reviewed • 2 Waterloo Region DHC mental health planning documents reviewed • Mental health forum on ideal indicators held

• 2 stories, each based on 5 interviews (1 consumer/ survivor, 1 family member, 1 peer, 1 support worker, 1 friend) • 5 meetings observed

• 2 stories, each based on 5 interviews (1 consumer/ survivor, 1 family member, 1 peer, 1 support worker, 1 friend) • 4 meetings observed

• 2 stories, each based on 5 interviews (1 consumer/ survivor, 1 family member, 1 peer, 1 support worker, 1 friend) • 3 meetings observed

CMHA, Canadian Mental Health Association; DHC, District Health Council; WRSH, Waterloo Region Self Help

WRSH

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included the following: (a) there will be clear and regular communication between the steering committee and each of the partner organizations; (b) each person will represent himself or herself in meetings, indicating when the individual was speaking for his or her organization; (c) the committee will work towards consensus on all issues, and if consensus is impossible, find ways to work out the differences; (d) decisions made by the group will remain the group's decision; and (e) details of our process and disagreements will remain confidential. These initial discussions helped to clarify roles, responsibilities, and future expectations. The important characteristics of this process were relationshipbuilding, open communication, and critical reflection: 'I remember Geoff asking us to share some personal information at the first meeting. Sharing of us on a personal level helped me to see myself outside of our mental health agency. It helped me to see others as people who share interests, sometimes similar to my own (poetry, outdoors, baseball, children)' (steering committee member). The personal and group interviews as well as the information sessions we initially held with each organization played an important role in setting the tone and building our relationships with the three organizations. Everybody was observing us, our behaviours, our manners, our way of talking, listening, and reporting. At WRSH we faced a challenge when the participants expressed their hesitation about working with professionals. So, we developed research questions together, we collaborated in writing the research findings, and we presented them together. We also faced a mistrust of institutions. Some consumer/survivors were concerned about the money for the research going to the university and how much control the university would have in the study. They expressed it as a legitimate issue with the university being 'another institution.' We carefully explained that the funding for the research is only administered through the university but then goes to the Centre for Research and Education in Human Services, which coordinates the study: 'This was an exciting meeting that I think was a very positive first step on the journey to full collaboration with this consumer/survivor group. I sensed a genuine respect and interest in this kind of work, even though it did take a little explaining of what I meant by "research." And since our construct of research is a little bit different than what people typically think of as scientific research, I am sure the waters are still a little bit muddy in this area. The group did have a number of questions and comments, the discussion was very lively and interactive, and could have gone on much longer' (excerpt from researcher field notes).

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Phase 2 — Gathering and Analysing Current Information on the Change Process What We Did

The purpose of this phase of the research, which began in October 1996 and concluded in September 1997, was to gather information relevant to research objectives three to five. To gather information relevant to the changing policy and planning context, we interviewed several of the same key informants that we interviewed in phase 1. Information regarding stakeholders' experiences of community, organizational, relationship, and individual changes was gathered by focus group with interviews, using a structured interview guide, with a cross-section of stakeholders within each setting (see Table 3.1). All interviews were tape-recorded and transcribed before they were analysed. The methods of sampling were as follows. All of the senior managers from the three settings who had not already been interviewed were interviewed. For staff, the criteria included: gender, length of employment, type of program, work site, and full-time versus part-time status. Staff members were selected randomly from a master staff list (with no names on the list), but proportionally with respect to the previously described criteria. Consumer/survivors were selected using gender, type of involvement, and length of involvement as criteria, again using the master list approach. Volunteers were selected using gender, type of involvement, and length of involvement as criteria, and family members were selected using type of involvement, length of involvement, relationship to the consumer/survivor, and location as criteria. Each organization advertised for volunteers and family members to voluntarily attend the interviews. Feedback sessions were held in each of the three settings to present the main findings and to verify their accuracy. In each setting, there was discussion about the findings, but also a strong agreement that the findings were consistent with people's experiences. A six-page summary of the findings from phase 2 was reviewed and approved by the steering committee and circulated to all participants. How We Did It

Phase 2 was the most intensive phase of our research activities. We noted that in phase 2 the steering committee members started to feel very comfortable in their roles: 'I think people are quite comfortable and speaking quite frankly at our meetings. The meetings belong to every-

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one; the "experts" are not in the driver's seat (or maybe we are, but we're more like chauffeurs). The group goes where it wants to go' (excerpt from researcher field notes). Phase 2 focused on research team development, teamwork, and training: 'The training and teamwork were very important to me being able to participate successfully in the project. The training was broken down into manageable size pieces and applied as the project progressed. The teamwork was helpful especially at first when two of us would go out to do the focus groups. It gave me a lot more confidence to know a colleague was present and supportive and to work more independently in Phase HI' (consumer/survivor research assistant). The research assistants equally shared responsibilities of information gathering, transcribing, data analysis, and writing. Some of these tasks were organized as group activities. For example, focus group interviews were conducted in pairs, with one research assistant and one senior researcher, which helped to provide role modelling and support: 'The training helped and then the mentoring that went on after it. For the focus groups it was helpful to be paired up with Rich, Joanna, Geoff, or John to do the initial, first interview. That helped a lot so we didn't feel that we were on our own' (consumer/survivor research assistant). The research team members worked with and accommodated each other very well. For example, if one of the researchers was not able to fulfil his or her duties another person filled the gaps. We also planned all future steps together, and we reflected on finalized activities. This created feelings of control and ownership: 'A benefit was in being able to have a voice at our team meeting, to influence decisions. I felt I was empowered to play an important role in forming questions and I felt I was a valued partner (consumer/survivor research assistant). The relationships among the research team members and steering committee members evolved and grew in phase 2. We shared not only the information about the research study, but also personal information: 'I found the relationship very supportive. I think what I appreciated a great deal too was when we did share on a personal level, and that, I don't know, I'm not particularly sure why that happened. I'm just grateful it did ... I felt like it just grew up of how we are as a group ... [we got] to know a little bit more about each other and feel that much more connected' (consumer/survivor research assistant). In March 1997 we attended the conference of the American Orthopsychiatric Association in Toronto. The research team and a few steering committee members presented the findings from phase 1. This experi-

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ence bonded us when we all shared pride and ownership of the research. As one person said, 'Our workshop in Toronto was wonderful, having everybody involved in this presentation.' Phase 3 - Gathering and Analysing Prospective Data on Change Processes and Outcomes What We Did

Phase 3 also focused on research objectives three to five, but the goal was to explore these objectives in more depth through participant observation and stories of individual consumer/survivors. This phase of the research began in October 1997 and concluded in April 1998. Information relevant to policy, planning, community, and organizational changes was gathered through participant observation of meetings and events. Both descriptive and analytical field notes were taken at community and organizational meetings (see Table 3.1). Information relevant to community, organizational, relationship, and individual changes was obtained through the stories of individual consumer/survivors. Six consumer/survivors (two from each setting) were purposively selected using the following criteria: (a) a minimum of two years of involvement with the organization (one person with short involvement, another with longer involvement from each setting), (b) gender (one man and one woman from each setting), and (c) stage of recovery from mental illness (one person who is more advanced in his or her recovery and one person whose recovery had been slower from each setting). Age of participants was an additional criterion that we tried to balance over all stories (mix of young, middle-aged, and older adults). Members of the steering committee recruited people from each of the settings using the selection criteria described above. Each selected person then identified four people from his or her social network, including (a) a close friend, (b) a family member, (c) a mental health support worker, and (d) a peer from a mainstream community setting (e.g., churches, clubs, work, recreation, school). All were interviewed using a structured interview guide. The interviews were tape-recorded and transcribed, and the interview transcripts were shared with each interviewee to verify their accuracy. Six individuals stories were constructed based on interviews and participant observations, and these stories were reviewed by the focus persons for accuracy. It is very difficult in research that uses people's stories to completely safeguard the identities of the individuals involved. While we have not

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used the real names of any of the individuals involved in this part of the research, it is possible that someone familiar with the setting might be able to recognize these individuals. In this regard, it was very important to have the individuals' consent to have their stories published. Not only did all of the individuals provide such consent, but they also read over their stories and had the opportunity to make changes. The individuals who participated in this part of the research told us that they were proud to have their stories written and found the experience to be personally empowering. Originally we used the traditional term 'case study' to describe this research method. In a steering committee meeting, one consumer/survivor asked: 'How come we are against [the term] "case management" but for "case studies"?' After this, we decided to use the more personal term 'story' rather than 'case study.' A ten-page summary of the findings from phase 3 was reviewed and approved by the steering committee and then circulated to all phase 3 participants. Feedback sessions on the results of the entire study were held with each of the three settings in the fall of 1998. How We Did It

In phase 3 the research team and the steering committee continued to have regular meetings. However, at this stage the researchers worked more independently. Each researcher was responsible for making contacts, conducting interviews, analysing, and writing one story. Also, each researcher attended separate meetings to take field notes at meetings. The team meetings played an important role in bringing team members together arid in focusing on training, problem-solving, and ongoing support: 'The training was top-notch. In fact, I received better training here than I had in most of my university courses. It was very good training. The information gathering, analysis, and writing discussions were helpful with handouts and use of flipcharts. Also, I was able to come and bring who I was and my values to this team. The ongoing support was also very important' (consumer/survivor research assistant). During phase 3 the steering committee members had a chance to play an additional role in the research process. Since the research budget did not allow us to complete all planned participant observations, a few steering committee members were trained to take field notes of the meetings at the three organizations. So, having an 'equal engagement' in research activities helped us to overcome some budget limitations. However, in one situation the participants of the meeting struggled with

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the fact that the steering committee member played various, interchangeable roles: 'My role as a support worker, steering committee member, and researcher came into question. One person questioned my ability to give perceptions of a meeting and had a concern around conflict of interest. I did not make any analytical notes from this meeting' (steering committee member). Summary and Reflections In summary, we strove to conduct this qualitative research project with a high degree of scientific rigour and a high degree of community participation in the research process. We believe that we were able to achieve both of these goals. The findings that we report in the following sections of the book break new ground in terms of our understanding of the empowerment-community integration paradigm in community mental health. Also, the various stakeholders who participated in the project found their participation to be meaningful and a good learning experience. In the last chapter of this book we include final reflections of several different participants, and our own analysis of power relations and partnerships reflected throughout the project. During the last steering committee meeting, we reviewed the research process in terms of the principles and ground rules that we had agreed upon during the first steering committee meetings. Overall, members were very satisfied with the process, as is illustrated by the following: 'You felt part of a team; friendships strengthened; new respects were made. I started to see others, as I never realized before. I ended up missing the project and the people involved in it, when it was finished' (steering committee member). We attribute the success of the research to the fact that our approach was 'planned, but flexible' and that we were committed to a high degree of stakeholder participation in the process. The participation of consumer/survivors and other stakeholders in this type of research helps researchers to obtain high quality data. However, more than this, we believe that stakeholder participation in community research is a moral imperative. As the quote from one of the consumer/survivor research assistant at the beginning of the chapter indicates, consumer/survivors have a basic right to active participation in the research process about services and supports that are intended to be helpful to them. It is through a participatory action research approach that we embody the spirit of the title of this chapter, 'nothing about me, without me.'

PART TWO

The State and the Community: Policy and Mental Health Change

In the next three parts of the book, we present information gathered during our two-year community study. As the research began, it soon became apparent that provincial policy was very important in the process of mental health reform. We have learned that effective policy, while not sufficient by itself to facilitate community change, creates a vital context for the distribution of resources and the likelihood that communities will address significant issues. In Chapter 4 we summarize some of the historical lessons from earlier efforts at mental health change in Ontario and elsewhere. In Chapter 5 we describe the 'time of change' that occurred in Ontario between 1985 and 1994. Key informant interviews help us interpret policy documents and their direction for mental health change in Ontario. We show how provincial policy and regional planning initiatives were interrelated and how they created a significant influence on community change. We also review, in Chapter 5, current trends in mental health reform between 1995 and 1998. Consistent with the overarching goal of this book, the purpose of Part 2 is to analyse changes in provincial mental health policy and planning and the implementation of that policy in Waterloo Region. We identify actual policy and planning changes that have occurred, ascertain whether those changes reflect the values of the empowerment-community integration paradigm, and analyse factors that facilitated or inhibited change. As was noted in Chapter 3, we used interviews with provincial and local key informants and reviewed provincial policy documents and regional planning documents as the database for this analysis. The multilevel, ecological perspective that we used suggests that there are interrelationships between changes at different levels of analysis. There is a dynamic 'push' and 'pull' between these different levels. For

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example, we have found that regional planning activities are both constrained by and influence provincial policy. The following two chapters on policy and planning changes provide the larger context for our examination of changes in community mental organizations and changes experienced by the individuals who use the services of those organizations, which are presented in Parts 3 and 4. Thus, we begin by examining the 'big picture' of mental health policy and planning.

Chapter Four

The Sociopolitical and Policy Context: A Historical Review

[Mental health reform] never seems to get beyond the planning stages ... start, stop, start, stop. Consumer/Survivor We spent millions on planning and documents and now we have great networks, but the funding is shrinking. Service Provider

The voices of people who have been directly involved in mental health policy and planning suggest that while reform is urgently needed, the process of change is discouragingly slow. In the period from 1980 to 1998 there was a great deal of activity related to mental health policy and planning in North America and in Ontario. We have examined whether there has been any substantive change in mental health policy over that time period or whether the policy and planning process echoes Sarason's (1982: 116) observation about social policy that 'the more things change, the more things remain the same.' In this chapter, as a way of helping us understand the changes we studied in Waterloo Region, we briefly examine some of the literature that exists on mental health reform, and then look at reform in Ontario prior to 1980 and between 1980 and 1984. This process of 'looking back' and 'looking around' may be especially useful for readers who are not familiar with the Canadian scene or with the mental health reform literature.

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Part 2: The State and the Community

Previous Research on Policy and Planning Change in Community Mental Health: A Critical Review Policy and Planning Reform in the United States An Overview of Mental Health Reform in the United States Mental health policy and planning is complex and dynamic. Governments across North America are attempting to reform their publicly funded mental health care systems so that the most needy are provided with humane and fiscally responsible care. Essential to these efforts is the reallocation of existing resources to more effective, communitybased alternatives. For the past forty years, federal legislation in the United States has promoted community-based services. Between 1955 and 1994 after-care services shifted from the state mental hospitals to community-based facilities. In spite of this trend, state mental hospitals still consumed over half of the total expenditures by state mental health agencies in 1994 (Manderscheid and Henderson, 1998). In light of this situation, there are two major issues facing the mental health community today: (a) how to strike a balance between the services of community-based mental health agencies and those provided by state mental hospitals and (b) how to provide the right kinds of services to the right people (Manderscheid and Henderson, 1998; Trainor et al., 1999). Even though the focus of mental health services has shifted from state hospitals to the community, and many models of providing community support have been developed, an evaluation of public mental health services in the United States in 1990 demonstrated that the quality of life of more than two million individuals with serious mental illness has not improved (Torrey et al., 1990). In fact, the authors of this report came to the following scathing conclusion: In the past 40 years, anti-psychotic medications have been developed, the focus of mental illness services has shifted from state hospitals to the community, and we have learned that many people with mental illnesses are, with proper support and treatment, capable of living independently, holding down jobs, and becoming full participants in and contributors to our society. Excellent models for providing the necessary community support were developed as long as 25 years ago. One would think, then, that the quality of life of the now two million people with serious mental illness in the United States would have improved dramatically from the days of the hospital 'snake pits.' Yet today, in 1990, services for individuals

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with serious mental illness in the United States are a disaster by any measure used. Not since the 1820s have so many mentally ill individuals lived untreated in public shelters, on the streets, and in jails. Countless more live in substandard boarding homes or rundown transient hotels, or pass their lives watching television or smoking cigarettes because no rehabilitation services are available. The abandonment of the public sector by mental health professionals whose training was supported with public funds and the failure of publicly funded mental health centers are shameful chapters in the history of contemporary American psychiatry. (Ibid.: i)

To reach this conclusion, Torrey et al. gathered data from a variety of different sources to make ratings of each of the fifty state mental health systems on the following dimensions: hospital services, outpatient and community support services, vocational rehabilitation, housing, and children's services. Several states were found to have made significant strides in mental health reform on these dimensions. However, fortyfour of the states and the District of Columbia failed to obtain even half of the total of points possible using their rating method. Moreover, the authors of the report argued that in most states progress in mental health reform was slow to non-existent or that the states were actually moving backwards. From their review, it is clear that many states are struggling with the issue of mental health reform. In the next sections, we look at a few of the states that have made exemplary changes and the lessons that we can take from their experiences regarding mental health reform. The State of Vermont

Vermont is one of the few states that has made substantial changes in mental health policy. Torrey et al., in their review of state programs for the seriously mentally ill, rated Vermont as having the best state mental health system in the United States. The Vermont experience has also attracted a great deal of attention from policy-makers in other jurisdictions who are interested in mental health reform. This is because mental health reformers in Vermont have been successful in developing consumer/survivor and family organizations, creating supported housing alternatives, and shifting financial and human resources into community mental health programs (Pandiani, Murtaugh, and Pierce, 1996; Torrey et al., 1990; Wilson, 1989). Rather than repair the state's one and only psychiatric hospital, a

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planned change process was used to move to a regionalized mental health system (Carling et al., 1987). A highly participatory approach was initiated that involved a wide range of stakeholder groups, particularly consumer/survivors and family members. Also, the change process was driven by values that, to some extent, reflect the empowerment-community integration paradigm in community mental health, including 'respect for the individual, provision of opportunities for growth and self-fulfilment, preservation of personal dignity, and high quality care which enables people to live normal lives' (Wilson, 1989: 31). Consistent with resource mobilization theory, there were favourable conditions supporting these changes. First, there was a positive political climate for change. Vermont had a progressive state government that was receptive to the types of changes being proposed. Many of the necessary elements of a community mental health system had already been developed, and prior to the shift, the state was already spending proportionately more (57 per cent) on community mental health than on institutional services. Second, claims-makers took advantage of this climate to push for change. A wide range of stakeholders participated in and supported the changes. Also, there were excellent leadership and resources from the Center for Community Change through Housing and Support (which has been an international leader in promoting the values and practices of the empowerment-community integration paradigm), directed by Paul Carling, to guide the change process. According to the review by Torrey et al. (1990), Vermont has made very positive changes in several areas. With respect to community support, they state that 'Vermont probably supplies case management for a higher proportion of its seriously mentally ill residents than any other state, and in many parts of the state the service is exemplary' (ibid.: 57). Also, vocational and housing supports are well developed. In particular, the supported housing approach has been implemented on a wide scale. Pandiani, Edgar, and Pierce (1994) examined changes in the living situations of people with serious mental illness over the twelve-year period from 1978 to 1990. They found that the percentage of people living in 'care' settings declined from 39 to 25, while the percentage of people living independently increased from 61 to 75. Moreover, 26 per cent had their rent subsidized. While Vermont has made many positive strides in community mental health reform, this is not to say that all is rosy in Vermont. Another external evaluation of this policy reform on the quality of life of consumer/survivors revealed some shortcomings. Using both qualitative

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(Pulice et al., 1995) and quantitative (Dewees, Pulice, and McCormick, 1996) methods, researchers found that consumer/survivors reported experiencing stigma, poor community integration, social isolation, difficulty accessing services, and a lack of employment opportunities. These findings support Lehman's (1989) assertion that policy reforms must be strongly linked with changes in programs and practice in order to ensure successful outcomes for individuals. Progress towards Mental Health Reform in Other States Several other relatively small- to medium-sized states, including Connecticut (Wolf, 1990), Maryland (Cromwell, Howe, and O'Rear, 1988), and Wisconsin (Stein and Ganser, 1983), have also reported shifting resources from the institutional sector to the community mental health sector. Like Vermont, these states were rated as being among the best in the United States in terms of mental health programs (Torrey et al., 1990). As was the case in Vermont, the two key factors that appear to be related to these changes were (a) the receptivity of government (both politicians and bureaucrats) and (b) organized stakeholder groups who advocated for community mental health approaches. For example, the importance of government receptivity is illustrated by the Connecticut story. For several years, advocates were unsuccessful in their attempts to regionalize mental health services because of the resistance of government bureaucrats (Wolf, 1990). Following the resignation of one key bureaucrat, the reallocation of funding to the community sector occurred very rapidly. The importance of organized stakeholder groups making claims for change is well illustrated by the Maryland experience (Cromwell et al., 1988). A statewide coalition, comprised of a family organization, a consumer/survivor organization, the state mental health association, and a community mental health professional organization, successfully advocated for enriching the community mental health sector. Recent Trends in Mental Health Reform in the United States: Managed Care and Assertive Community Treatment Approaches Several states have initiated managed care for people with severe mental illness. In 1992 Massachusetts was one of the first to introduce 'capitation' into community mental health. This means that the payee (either a private or non-profit organization) sets limits on the amount of expenditures for each mental health treatment or support, because the state limits the payee in terms of what can be spent. A study on the Massachu-

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setts approach showed that managed care led to a significant decrease in expenditures and utilization of inpatient facilities (Beinecke and PerIman, 1997). Providers reported that access, quality of care, and aftercare coordination improved. It was reported, likely because of the increased competition, that some agencies did better and others did worse under this new system. Studies on the impact of managed care are just beginning to appear in the literature. These studies, primarily focusing on cost-effectiveness, service utilization, service coordination, and professional practice, show mixed results (Beinecke and Perlman, 1997; Chandler, Meisel, and McGowen, 1996; Schlesinger, Dorwart, and Epstein, 1996; Wickizer, Lessler, and Travis, 1996). It is interesting that we have not seen any studies on managed care that have looked at values or consumer/survivor experiences. We await further research, especially from those states and provinces that are exploring managed care with more of a consumer focus. The other U.S. development that has recently had an impact on Canada is the utilization of assertive community treatment (ACT) teams. ACT teams were started in Wisconsin in the 1970s, as part of the Training in Community Living Program in Madison (Stein and Test, 1980, 1985). Since community treatment and support are now deemed to be less expensive than inpatient support, more states and provinces are developing ACT approaches. In fact, over thirty states in the United States now have ACT teams, and ACT has recently become a major component of mental health reform in Ontario. This 'intensive' intervention uses a multidisciplinary team of professionals, usually headed by a psychiatrist, which can provide twenty-four-hour as-needed case management support to people living in the community. Assertive outreach focuses on psychotropic drug treatment of symptoms, skill teaching, crisis intervention, and assistance with finding and keeping housing, work, and recreation in the community. Studies on the ACT approach have usually found three positive outcomes: the number and length of hospital admissions are reduced; symptoms are reduced; and consumer/survivors report that they are more satisfied with ACT than with other approaches (Burns and Santos, 1995; Deci, Santos et al., 1995; Drake and Burns, 1995; Drake, 1998; Health Systems Research Unit, Clarke Institute of Psychiatry, 1997c; Levine et al., 1993; Santos, 1997; Taube et al., 1990). On the other hand, several criticisms have been raised by consumer/survivor leaders and by those who work from a more empowerment-based phi-

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losophy. The criticisms generally fall into several areas: concern with the medical orientation, too much emphasis on social control, the fact that clients must relate to several staff members, and the lack of emphasis on community-building, informal social support, and community involvement (Nugent and Spindel, 1998). We know of no ACT studies or projects that have utilized the principles of the empowerment-community integration paradigm, but there is no reason why this could not be the case. Policy and Planning Reform in Canada An Overview of Mental Health Reform in the Canadian Provinces In a review of mental health policy in Canada, Macnaughton (1992) has noted a number of themes that cut across the policies of the ten provinces, including a focus on individuals with serious mental illness, the need for the reallocation of resources, regionalization of services, the importance of consumer/survivor and family participation in policy and planning, and self-help organizations for consumer/survivors and family members. However, the provinces vary considerably in the extent to which they have implemented such policies (Blanchet-Cohen, 1993). For example, in Manitoba in the mid-1980s, a coalition of thirty-two organizations pressured government to shift funding into community mental health (Tefft, 1987). In spite of strong leadership, clear values and goals, and a base of community support, this coalition was not successful in shifting resources into community mental health. As of 1991, Manitoba spent only 8 per cent of its mental health budget on community mental health services; a major barrier to mental health reform was the Minister of Health who allied himself with the medical establishment (ibid.). Blanchet-Cohen (1993) found that most provinces spend between 10 and 20 per cent of their mental health budget on community mental health, with the vast majority of spending still going into the institutional sector. She concluded that 'on the whole, the change towards a balanced mental health system, where the institution would become a last-resort solution, is only at an infancy stage' (Blanchet-Cohen, 1993, p. 4). While progress has been slow and uneven in mental health reform across the provinces, New Brunswick and British Columbia have made considerable advances. Next we provide a brief summary of mental health reform in New Brunswick, because the lessons learned in that province could be instructive for others.

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The Province of New Brunswick New Brunswick has made substantial changes in mental health policy through the creation, in 1988, of a Mental Health Commission (Niles and Ross, 1992). In 1991 this commission released a ten-year plan to reallocate resources from the institutional sector to the community sector. The proportion of funding for community mental health increased from 13 per cent in 1989 to 19 per cent in 1993 (Blanchet-Cohen, 1993) to 46 per cent in 1995 (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997c). The commission has also funded a consumer/survivor network and consumer/survivor-run initiatives, and there are thirteen consumer/survivor advisory committees which have replaced regional boards (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997b). Niles and Ross (1992) have noted that the reform of mental health policy in New Brunswick followed the election of the new Liberal provincial government in 1987. The Canadian Mental Health Association (CMHA) / New Brunswick Division was the lead organization that made claims for change in mental health. CMHA / New Brunswick used the Framework for Support created by CMHA/National as its vision for change. In adopting the Framework for Support perspective, CMHA / New Brunswick brought consumer/survivors, family members, advocates, and other citizens into the process of planning and advocating for change. Linkages were made between CMHA / New Brunswick and key government bodies and individuals (e.g., cabinet, the minister of health, senior bureaucrats). In their analysis of the change process, Niles and Ross (1992) argued that the key factors in making mental health policy change in New Brunswick include political will on the part of government, a vision for change, leadership and advocacy, and taking advantage of opportunities in a dynamic political context. These factors are consistent with those identified by resource mobilization theory. Reflections on the Literature In summary, across the United States and Canada there are common goals for mental health reform (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997a; Macnaughton, 1992; Trainor et al., 1999) including (a) the reallocation of resources to a comprehensive, coordinated, community-based and effective service system for people with serious mental illness; (b) providing a comprehensive range of services and supports (treatment, rehabilitation, prevention/promotion);

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(c) recognition that mental health care must go beyond formal mental health supports; (d) involvement of consumer/survivors and family members in planning, delivering, and evaluating mental health programs; (e) providing service models that empower and support independent, integrated living; and (f) regionalizing the governance of mental health services to make the system responsive to local needs. The experiences of mental health reformers in the United States and Canada suggest that it is possible to achieve these goals of mental health reform. The factors that appear to facilitate such change are a favourable political climate (i.e., receptive politicians and bureaucrats), well-organized bases of support for change (oftentimes including consumer/survivors, family members, and professionals), and persistent advocacy efforts. Policy and planning reform in community mental health in both the U.S. and Canadian context provide some support for resource mobilization theory (Jenkins, 1983), which we presented in Chapter 2 as the theoretical framework guiding our analysis of policy and planning change. The United States and Canada differ somewhat in how they have tried to achieve mental health reform. Legislation and managed care have been used more often in the United States as a means to achieve mental health reform than in Canada (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997c). For example, in the state of Kansas changes to the mental health act set parameters for programs, established mechanisms for cost containment and reallocation of funding, and mandated the representation of consumer/survivors and families on governing boards (Health Systems Research Unit, Clarke Institute of Psychiatry, 1997c). In Canada there has been more emphasis on community consultation and planning documents to guide reform (ibid.). It is important to note that, whatever approach is taken to achieve mental health reform, the directions for reform do not necessarily indicate a paradigm shift. As we argued in Chapter 2, a paradigm shift in mental health policy occurs when there is a fundamental shift in the underlying values. The available literature does not provide a clear picture of value changes in mental health policy and planning (McCubbin and Cohen, 1999). Reform could follow the community treatment-rehabilitation approach, not necessarily the empowerment-community integration paradigm. Moreover, some reform efforts, such as managed care, have been so dominated by cost control, that it has been a challenge for values to be at the forefront. In the remainder of this chapter we turn to an examination of mental health policy in Ontario prior to 1985.

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Before the Beginning: Mental Health Policy and Planning Prior to 1980 The Tyhurst Committee touched on all aspects of mental health policy, from treatment modalities through institutions and services in the community, to mental and general hospitals. Given the composition of the committee [all male psychiatrists], it is not surprising that everything was viewed from a psychiatric perspective and that the medical model provided the framework for analysis. "In all instances ... mental illness is regarded as a disorder or breakdown of living requiring psychiatric treatment. In this field the medically qualified psychiatrist was the acknowledged senior authority. " Simmons, 1990b:91.

From the mid-nineteenth century until the 1960s mental health policy in Canada was dominated by the medical-institutional approach. The Tyhurst Report, entitled More for the Mind (Canadian Mental Health Association, 1963), which is referred to in the above quotation, is an example of this domination. In attempting to create social change, Sarason (1982) asserted that it is important to understand the social-historical context of the social problem that one is addressing. He has alerted would-be change agents to the importance of finding out what strategies have previously been tried to change the problem. The period 'before the beginning' of attempts at change will have clearly influenced the types of strategies and tactics that might be considered in later time periods. Ontario Political scientist Harvey Simmons (1990b) has provided an extensive historical analysis of mental health policy in Ontario from 1930 to 1989. Simmons (1990b) found: Almost every five years from 1930 to 1985, a report, analysis or critique of Ontario's mental health system appeared, recommending major changes and reforms. Without exception, each recommended a major extension of community mental health services, (p. xiii) The Minister of Health and the government of the day never planned more than four years in advance, that is, until the next election. Bureaucrats said Ministers of Health were interested in mental health policy only when the opposition parties raised tough questions in the

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legislature, or when the Globe and Mail or the Toronto Star carried articles exposing a scandal or publicizing defects in the mental health system ... Mental health policy might suddenly emerge as a priority - but only as long as it took to resolve a crisis. Otherwise, it was ignored, (p. 244)

This view is consistent with observations of short-lived cycles of reform outside Ontario (Rappaport and Chinsky, 1974; Rothman, 1980). Simmons argued that mental health policy has been controlled by an alliance of government bureaucrats and the medical profession. In the absence of strong public pressure groups, the mental health policy process has been grounded in 'ad hocery' and 'incrementalism,' according to Simmons, with very little change until the 1980s. Our society has supported a policy of social control of people with significant mental health problems, either in institutions or in the community, and government and medicine have been the instruments of that policy. Consistent with resource mobilization theory, the mental health system has been very resistant to change, with little progress being made in the absence of a strong social movement. During the 1960s deinstitutionalization resulted in the downsizing of psychiatric hospitals, an increase in general hospital psychiatry units, and more and more people with serious mental health problems living in the community. Bed capacity in psychiatric hospitals in Ontario decreased from 47,633 to 15,011 between 1960 and 1976, while the bed capacity of psychiatric units in general hospitals increased from 844 to 5,836 during the same period (Wasylenki et al., 1992). The Adult Community Mental Health Branch of the Ontario Ministry of Health was formed in 1976 to begin to address these issues, but very little funding was initially allocated to community mental health (Nelson, 1994). During this period, mental health policy in Ontario was very similar to that in other provinces, U.S. states, and most Western industrialized nations (e.g., Hall, 1992; Rochefort, 1988, 1992; Whiteford, MacLeod, and Leitch, 1993). Although there were attempts at reform prior to 1980, mental health was considered, by and large, a private issue. People with significant mental health issues were segregated in distant institutions or were hidden away in families. With people 'out of sight and out of mind,' public ignorance about mental health issues and the rejection of people with mental health challenges were widespread (Page and Day, 1990). The Canadian Sociologist Erving Goffman (1961) wrote about the pervasive stigma and 'spoiled identity' of people with mental health issues who were forced to live bleak and isolated lives in psychiat-

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ric institutions. Yet, with more and more people returning to the community, the stage was being set for the development of community mental health alternatives. Waterloo Region

Prior to 1980 there was little in the way of planning or service delivery in mental health at the regional level. In 1973 the Ontario Ministry of Health formed district health councils (DHCS) ostensibly to decentralize health planning, including mental health. The DHCs do not have any fiscal or administrative authority over local programs. Rather, their role is to assess the health needs in a district and to make recommendations to the minister of health about programs to meet those needs. The Waterloo Region District Health Council (we locals call this the DHC) was formed in our community in 1977. The DHC began to play a planning role in mental health by 1980. Mental health services were primarily medical and institutional in nature, including a psychiatric ward in K-W Hospital and inpatient programs at London Psychiatric Hospital (known in our community as LPH), which is more than 100 kilometres away. CMHA, established in 1961, was a very small agency, with few paid staff and many volunteers operating out of a small house. We also remember the desperation of families and the limited community mental health programs in comparison with other systems, such as that for people with developmental disabilities. Reflections on the Pre-1980 Period

The absence of regional level planning and the dominance of institutional-medical services prior to 1980 reflect the mental health policy context at the provincial level. Policy-making was done centrally with a limited amount of input. Consumer/survivors, family members, and community mental health workers were neither organized nor active either at the regional or provincial levels. However, in the early 1980s the context began to change. The Seeds of Change: Emerging Stakeholder Groups and Changes in the Social-Political Context from 1980 to 1984 Mary Henman has a son Ted with a serious mental illness. When Ted had an acute episode of schizophrenia, he was admitted to LPH. Once

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his symptoms came under control, Ted was discharged from hospital. Although he was referred to a local psychiatrist, there was no follow-up plan in his home community of K-W to meet his non-medical needs. Mary and her husband Bill found themselves under a great deal of stress when Ted returned to live with them. Mary and Bill quickly learned that there was little in the way of services and supports for people with serious mental illness or their families in their community. Mary and Bill knew a few other families who were in a similar situation, and they came together to form a self-help group for the family and friends of people with mental illness. As they began to educate themselves about mental illness, Mary became quite vocal in the community about the need for housing and case management services for people with serious mental illness. Like other family members, Mary was concerned about people with mental illness refusing to take medication or to be hospitalized during acute episodes. She joined the boards of mental health organizations, participated on the DHC's mental health committee, and wrote letters to the editor of the local newspaper and to provincial politicians about the need for changes in the mental health system. Mary Henman was one of those people who sowed the seeds of change in the mental health system in Ontario. She insisted that the experiences and views of family members be heard in any mental health reform process. While she believed in the value of the medical-institutional approach to mental illness, she also realized that something different was needed. Thus, Mary advocated for housing and support services for people with serious mental illness in her community. In many respects, Mary exemplifies the transition process that occurred in mental health policy and planning between 1980 and 1984. Ontario The Ontario Council of Health's Agenda for Action report (Ontario Ministry of Health, 1979) recommended that the minister of health appoint a coordinator of mental health services. Dr G.F. Heseltine, a psychiatrist, was appointed in this capacity, and he wrote Towards a Blueprint for Change: A Mental Health Policy and Program Perspective (1983). Although the report's goal was to support the trend towards deinstitutionalization, it contained a strong medical orientation. As Heseltine (1983:7) stated, T am a psychiatrist and admittedly have a "medical treatment" bias.' Heseltine made no distinction between medical and

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non-medical services: 'The distinctions between hospital/institutionbased and community-based services are not useful. We should not be seduced by the excitement of developing "community" (in the sense of non-hospital) programs that we neglect the need to maintain active interest in the quality of our psychiatric institutions ... We must not permit debates over "hospital versus community," often ideological in nature, to distract us from developing a balanced mental health care system' (p. 9). The Heseltine Report was the last of a long line of mental health reports that followed the medical model. With the emergence of a number of different stakeholder groups in the early 1980s, mental health became much more of a public and political issue than it had been in the past. Simmons (1990b) noted that in the early 1980s the number of stakeholder groups that became organized and politically active in the mental health field substantially increased. Moreover, these groups challenged the hegemony of the medical profession in the mental health field, which resulted in a decline in the authority of psychiatry. A group of psychiatric consumer/survivors from Toronto developed On Our Own in the late 1970s (Weitz, 1984), which was modelled after the Vancouver Mental Patients' Association (MPA). Vancouver MPA was the first survivor-controlled self-help organization. The Toronto group, On Our Own, was named after the title of a book written by the founder of MPA,Judi Chamberlin (1978). It developed a business, the Mad Market, and operated a successful magazine, Phoenix Rising, for many years. Many of the early psychiatric consumer/survivor activists in Ontario were anti-psychiatry (Church, 1993; Everett, 1997). Families were another new stakeholder group that emerged in the early 1980s. Several different family self-help organizations were formed (e.g., Friends of Schizophrenics, Mood Disorders Association of Ontario) in response to the needs of families, who often became key caregivers in this era of deinstitutionalization (Belford, 1984). A third major stakeholder group that emerged in the mental health field in the 1980s was community mental health professionals. As community mental health programs began to be funded by government, the people who staffed these programs became another important player in the mental health field. The Ontario Federation of Community Mental Health and Addiction Programs became active in the process of mental health reform. In addition to the mobilization of different stakeholder groups, there were two other key changes in the social-political context in Ontario

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in the early 1980s: (a) continued deinstinationalization of psychiatric consumer/survivors and (b) waning support for the ruling Progressive Conservative (Tory) government. With deinstitutionalization, the problems experienced by people from psychiatric hospitals into the community without adequate supports became more apparent to the public. Mental health researchers documented the numerous problems and obstacles to community integration faced by consumer/survivors following discharge from psychiatric facilities in Toronto (Goering et al., 1984). Also, the Toronto news media began to cover the story of the emerging 'psychiatric ghetto' in the Parkdale area of Toronto, where many psychiatric consumer/survivors lived in boarding homes. The problems in the Parkdale community became more visible after one of two psychiatric institutions in Toronto was closed. In 1982 several consumer/survivors and professionals took Minister of Health Larry Grossman on a much-publicized tour of Parkdale boarding homes to show him the scandalous conditions in which many psychiatric consumer/survivors were living (Capponi, 1992; Trainor et al., 1987). Following this, consumer/survivors and community mental health professionals formed the Supportive Housing Coalition of Metropolitan Toronto. It did not take long before the coalition was able to make a partnership with Grossman's conservative government, which led to the expansion of supportive housing for consumer/survivors in Toronto (Trainor et al., 1987). The Supportive Housing Coalition produced a document (1981) that came to be used as a blueprint for the development of housing throughout the province. This document espoused a residential continuum or 'levels,' which reflected the community treatment-rehabilitation approach described in Chapter 1. In this approach, consumer/survivors could live in housing at one of four levels, which vary in terms of the amount of staff support, and move to a less supportive setting as their needs change. Housing in Toronto and throughout the province was expanded during this period. Public support for the Tory government, which had ruled for fortytwo consecutive years, was dwindling and political elites were motivated to seek alliances with grassroots groups. An example of this is Grossman's financing of the Supportive Housing Coalition. Thus, from the perspective of resource mobilization theory, there were changes in organized grassroots groups (new 'claims-makers' emerged) and in the social-political context, both of which set the stage for changes in mental health policy and planning. Mental health was shifting away from being primarily a private issue to becoming a public issue.

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Waterloo Region

It was during this period that Geoff and John moved to K-W and became active in mental health issues. Geoff was hired to help with the growth of the MA program in community psychology at Wilfrid Laurier University (WLU). In 1982 John established the Centre for Research and Education in Human Services, a non-profit organization that does research and education in mental health and other areas of human services. The WLU Master's Program in community psychology and the Centre for Research and Education share a strong base in the values of the empowerment-community integration paradigm and are committed to innovation in community mental health. Geoff and John met and began collaboration primarily through having community psychology graduate students on practicum placement at the centre. Geoff joined the board of CMHA for which he served as a member for ten years, including two as president during a period of expansion. Also, Geoff and Mary Earls, a graduate student in community psychology, conducted a needs assessment of the housing and social support needs of people with serious mental illness in the K-W area (Nelson and Earls, 1986). John was involved at the national level, acting as a consultant and researcher with CMHA/National and helping them to establish the Framework for Support, a consumer/survivor-centred approach to support coordination (Hutchison et al., 1985; Hutchison, Lord, and Osborne-Way 1986). Momentum and resources began to be mobilized at the community level for action in mental health. Community mental health services in Waterloo Region expanded. In the early 1980s CMHA implemented a social-recreational program for consumer/survivors, a clubhouse, and a case management program with two support workers. Also, Waterloo Regional Homes became an independent organization in 1980, operating one group home. This program was originally developed by CMHA, but those involved decided to establish themselves as an independent organization shortly after the group home was funded. A second group home was developed by Waterloo Regional Homes in 1984. While there were no consumer/survivor organizations at this time, several parents formed Family and Friends, a self-help and mutual aid organization for family members. Reflections on the 1980-1984 Period

From 1980 to 1984 momentum and resources began to be mobilized for action in community mental health both at the provincial level and

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within Waterloo Region. Psychiatric consumer/survivors, families, and community mental health workers started to organize. Media stories about the deplorable living conditions of consumer/survivors in the Parkdale area in Toronto drew public attention to mental health issues. Claims-makers formed a partnership with the minister of health to improve housing conditions for consumer/survivors in Toronto, and community mental health services began to expand. We, the authors, were a part of planting the seeds for change through our work at both the regional and national levels. We recall this period as being both difficult and hopeful. One challenge came from consumer/survivors who were often understandably quite suspicious of and angry with professionals. Being on the receiving end of consumer/survivor anger was not easy for us. However, when we listened and started to bridge our differences, there was a feeling of optimism that we could influence progressive changes in community mental health. What we have called the empowerment-community integration paradigm was only in the minds of a few people at this point. Rather, the community treatment-rehabilitation approach was seen by many as the way of the future. The empowerment-community integration paradigm only became more viable as claims-makers, especially consumer/survivors, had substantial influence, starting in 1985, which became a critical 'time of change.' This is the theme of our next chapter.

Chapter Five

A Time of Change: The Growth of Community Mental Health and the Emergence of an Alternative Paradigm, 1985-1994

Pat Capponi had already taken on the character of a legend long before I met her. She seemed to be on every committee in Toronto that had anything to do with housing people discharged from psychiatric facilities ... She had been in mental hospitals many times. Suicidal. Then she had a breakdown in Toronto, and when she was discharged from the psychiatric ward, she was placed in one of the infamous boarding houses in Parkdale. Hers was called Channan Court, a fancy name for the squalor in which 70 ex-psychiatric patients lived. I was told that Pat ended up running Channan Court, then she and the other residents put out their own paper, The Cuckoo's Nest ... The fight to help people trapped in Parkdale boarding houses heated up, and the carrier of the flame was Pat Capponi. She guided the Minister of Health, Larry Grossman, on a tour of the wretched places, and television interviews revealed a stunned politician. That led to an invitation for Pat to be on the advisory committee of a new provincial Patient Advocate Office ... Pat kept going to meetings and shaking things up. June Callwood, introduction to Capponi, 1992: ix-xii

As writer June Callwood noted in her introduction to Pat Capponi's (1992) book Upstairs in the Crazy House, Pat was a mover and a shaker in the mental health scene during the 1980s and early 1990s. Like other psychiatric survivor activists during this time, Pat was able to draw the attention of the public and politicians to the concrete living conditions that psychiatric consumer/survivors face in community life - poverty, poor housing, little support. She also was invited or invited herself to participate and speak out in a variety of different settings about how to address these issues. Pat identified the problems and some solutions that bore little resemblance to the traditional model of hospitalization and drug treatment.

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The emergence of psychiatric survivor activists like Pat Capponi occurred during the ten-year period between 1985 and 1994. The development of the consumer/survivor movement was paralleled by the development of other stakeholders or sectors of the mental health field. The Ontario Federation of Community Mental Health and Addiction Programs, formed in 1983, became a strong organization for professionals who were providing community programs. During this period family groups were also growing at a rapid rate, giving voice to the frustration that many families experienced with the inadequate community supports that were in place. A Liberal government was elected in Ontario in 1985 and re-elected in 1987, and a New Democratic party (NDP) government was elected in 1990. Historically, the Liberal party and NDP have been stronger advocates of social programs than the Tory party in Canada (Barlow and Campbell, 1995). The Tories came back to power in Ontario in 1995. In many respects, the period 1985-94 can be viewed as a 'window of opportunity' for change in mental health and social policy in Ontario. The empowerment-community integration paradigm moved to the forefront, and policy and planning began to reflect some of its values. Using key informant interviews and a review of provincial policy and regional planning documents, we shall discuss some of the highlights of this period. Policy and Planning Changes Ontario The Graham Report The Graham Report (Ontario Ministry of Health, Building Community Support for People: A Plan for Mental Health in Ontario, 1988) symbolized the transition from an institutional-medical approach to a communitybased approach. The report was the outcome of an extensive community consultation process of a working committee chaired by Robert Graham, a retired engineer. The report provided some broad guidelines for community mental health, while the process itself began to engage consumer/survivors throughout the province. As one mental health professional stated: '[Graham] really had an impact with the road shows. People said, "I went out and talked." It seemed to have quite an impact, the saying of their piece and having it recorded.' Following the release of this report, the Ontario Ministry of Health

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established a steering committee to oversee the work of two subcommittees, one to develop an implementation plan and the other to draft community mental health legislation. These two committees met for two years before releasing their reports (Ontario Ministry of Health, 1991a, 1991b). The legislation committee also conducted another series of community consultations on elements to include in the legislation. What was significant about the Graham Report and its sequels was that this was the first time that consumer/survivors and family members were given a voice in what they wanted in mental health policy in Ontario (Church, 1995, 1996; Everett, 1997). The report of the legislation subcommittee, in particular, clearly reflected the values of the empowerment-community integration paradigm that we described in Chapter 2. Recommendations included the following: 'direct financial resources to consumer/survivor organizations controlled by consumer/survivors' (Ontario Ministry of Health 1991a: 11); 'develop an employment equity strategy which includes barrier reduction, work accommodation, support, and allocate funds to pay for salaries for training purposes, for those consumer/survivors who need to upgrade skills to obtain and maintain jobs' (ibid.: 12); 'allocate resources for the development of a network of family organizations to be controlled by family members' (ibid.: 13); and 'include a requirement that consumer/survivors constitute a minimum of one-third of all governing boards of agencies, advisory committees for sponsored programs, and community advisory boards of provincial mental health facilities' (ibid.: 13). Increasing the number and proportion of consumer/ survivors and family members in mental health policy-making and planning represents a concrete change toward the value of stakeholder participation and empowerment. Putting People First The work of these two subcommittees led to Putting People First (Ontario Ministry of Health, 1993), which was a ten-year strategy for mental health reform. Whereas the previously cited mental health reports were recommendations to government, Putting People First was a government policy document. It is important to note that the model for supports and services that was adopted for this report was the Canadian Mental Health Association (CMHA)/National Framework for Support (Trainor et al., 1999), which is based on the values of the empowerment-community integration paradigm. Following the release of Putting People First, three different sets of

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guidelines for mental health planning and implementation and reforms were produced by the Ontario Ministry of Health (1994a, 1994b, 1994c). According to these policy documents, the composition of the district and regional planning structures was to consist of 30 per cent consumer/survivors and 20 per cent families. This concrete policy change reflected increased consumer/survivor and family participation in mental health policy and planning. Our key informants also noted this change in stakeholder participation, as reflected by these two comments: 'The make-up of the table has changed ... More frequently, there is identification of the role of consumer/survivors in determining programs, evaluation of programs, and hopefully of policy.' And, 'Without the legislative committee, I don't think Putting People First would have said the things it did, if that activity and expression hadn't occurred.' Vandergang (1996) found that, although there have been difficulties and unevenness across agencies in implementation, consumer/survivor participation in policy and programs in Toronto has increased. Key informants also noted that consumer/survivor empowerment occurred through this increased participation. One person referred to the process of 'speaking out' and 'becoming,' noting that this was the first time that several consumer/survivors had gone public to tell their stories. What accounts for this change in policy towards increased consumer/ survivor and family participation? Key informants stated that this change was facilitated by the growth of the psychiatric consumer/survivor movement (Church, 1993; Everett, 1994). The rise of self-help organizations for a variety of different needs is another factor related to this growth: 'I think we need to look at the changes in terms of societal changes ... There is a rise of the role of the consumer generally in society.' Furthermore, changes in the mental health field 'have been influenced by the wider movement in health care away from the doctor as expert, leveling the power differences.' The political climate and government receptivity during this period was also a key factor in supporting this policy change (Simmons, 1990b). Psychiatric consumer/survivor leaders were working within the system with community mental health professionals and the Liberal and NDP governments (Church, 1993). Resistance from some mental health professionals inhibited change in consumer/survivor participation and empowerment (Church, 1993; Everett, 1994). One key informant noted that when consumer/survivors create their own expertise, the knowledge of professionals is challenged, which is very threatening to their roles and identity. One final

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constraint on consumer/survivor participation was survivor ambivalence (Church, 1993). A key informant stated that the decision to work inside the system is not an easy one for consumer/survivors. They worry about being co-opted and about whether or not they can withstand the 'wear and tear of organizational politics.' Consumer/Survivor and Family Initiatives

The Consumer/Survivor Development Initiative (CSDI) was originally funded by the NDP government in 1991. More than fifty consumer/survivor-controlled self-help organizations and small business ventures have been funded under this initiative (Trainor et al., 1997). Although only a small number of such businesses have been started, the benefits to consumer/survivors are considerable (Church and Creal, 1995; Trainor and Tremblay, 1992). Finally, family self-help organizations have also been funded by government. Putting People First underscored the need for consumer/survivor and family initiatives that emphasize support rather than service. The creation of these settings is a concrete indicator of change towards the values of stakeholder participation and empowerment and community support and integration. As one key informant noted, it was generally agreed that 'Ontario has really led the way with CSDI. We are unique in North America, the type of money and structure of money.' It was emphasized by key informants that the CSDI would never have occurred with the strong consumer/survivor voice on the legislation committee. Also, the CSDI and family initiatives were influenced by key resource people, including consumer/survivor leaders. Individuals who were instrumental in developing the CMHA/National's Framework for Supportwere described as 'carriers' or 'cross-feeders,' who took the ideas from this project into other settings and the creation of other documents in which they were involved. David Reville, a former MPP, an adviser to the premier during the NDP government, and a psychiatric consumer/survivor, was mentioned as a person able to bridge several different spheres, including the psychiatric survivor movement, political channels, and mental health policy and program settings. From Supportive to Supported Housing

There were two major policy changes in housing for psychiatric consumer/survivors during this time. First, there was a dramatic increase in the amount of housing available to consumer/survivors (Nelson, 1994; Trainor et al., 1987; Trainor, Morrell-Bellai, Ballantyne, and Boydell,

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1993). This occurred through special funding initiatives jointly developed by the Ministry of Housing and the Ministry of Health (Nelson, 1994). Also, psychiatric consumer/survivors became eligible for public housing in 1986 through changes in provincial policy (Weisberg, 1994). Trainor et al. (1993) found that the number of programs providing housing to consumer/survivors in Ontario increased from twenty-four in 1980 to seventy-four in 1990, and the number of spaces in such programs tripled from 342 in 1980 to 1,164 in 1990. Key informants also noted this expansion of affordable housing. One person stated that 'we have seen more in terms of getting people housed ... although it's still very limited in terms of the actual numbers involved in housing.' The second policy change in housing was the introduction of the concept of 'de-linking' housing and support. There was a clear shift in housing policy from the residential continuum model proposed by the Supportive Housing Coalition (1981) to an emphasis on normal housing (Ontario Ministry of Health, 1994c; Ontario Ministry of Housing, 1992, 1993). This shift towards the empowerment-community integration paradigm meant that support no longer depended on housing. The concept of 'de-linking,' which was prominent in housing documents in the 1990s, indicated that consumer/survivors should be able to live in normal housing in the community with flexible and portable supports that suit their needs and wants (Nelson et al., 1998; Weisberg, 1994). The Discussion Paper on Supportive Housing (Perrin, 1991), presented by the Ministry of Housing and the Ministry of Community and Social Services, emphasized consumer choice and control. Two subsequent reports (Ontario Ministry of Health, 1994c; Ontario Ministry of Housing, 1993) also underscored consumer choice in housing. One of the factors leading to the development of more housing for consumer/survivors was the development of broad-based coalitions for housing. Housing coalitions in Toronto (Trainor et al., 1987) and Waterloo (Nelson, 1994), for example, involved consumer/survivors, family members, and service providers working together to put pressure on government to create housing. Simmons (1990a) noted that different mental health stakeholders often hold different agendas for change. On the issue of housing, however, there was consensus among stakeholders during this period. The political climate and government receptivity also played a role in developing more housing. Claims-makers' exposure of the boarding homes in Parkdale led to partnerships between government and other stakeholders to address the housing issue. Regarding the shift from 'supportive' to 'supported' housing, key

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informants mentioned the influence of resource people, such as Paul Carling from the United States, who advised the Mental Health Reform Steering Committee. From Institutions to Community: The Reallocation of Resources Ontario, like the other Canadian provinces, has an unbalanced mental health system (Macnaughton, 1992; Simmons, 1990b). This means that the lion's share of mental health funding goes to institutions and reimbursement to physicians. The Ontario Federation of Community Mental Health and Addiction Programs actively lobbied government to shift the mental health system to a more community-based system. In 1987 this federation developed a province-wide education and advocacy intervention with MPPs with a goal of doubling community mental health funding from .5 per cent to 1 per cent of the provincial health budget within three years. In conjunction with advocacy efforts from other groups, this intervention was successful, with provincial expenditures for adult community mental health increasing by ten-fold from 1981 ($13 million) to 1991 ($130 million). Overall health expenditures increased at a lower rate (threefold) in the same period from 1981 ($4.9 billion) to 1991 ($15.3 billion) (Nelson, 1994). However, because much of this funding was new money, there was less change in the way funds were allocated within the mental health system in Ontario. In 1986-7, 5 per cent of mental health funding went to community mental health, but by 1992-3 this figure increased to 14 per cent, almost entirely as a result of new monies (Blanchet-Cohen, 1993). On the other hand, Putting People ^reestablished targets and time lines for reallocation of resources, with funding to community mental health programs expected to increase to 60 per cent of all mental health funding by 2003. Finally, while more funding was going into community mental health, most of it was directed to professionally delivered treatment and rehabilitation, with only a small amount going to consumer/ survivor-controlled initiatives. Thus, the funding shift does not indicate a shift towards the values of the empowerment-community integration paradigm. Some key informants thought that while there was government receptivity from mental health bureaucrats, the political arm of government lacked the will to reallocate resources: They haven't shifted in terms of reallocation. For me, it's been a lack of correspondence between the political and administrative ends. They [politicians] haven't had the political will to make changes ... There's been a responsive group in government in the Ministry of Health, but we're still dragging.'

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Key informants stated that part of the reluctance of the NDP government to reallocate resources was that it did not want to antagonize labour unions, which are their traditional supporters, and medical professionals. Thus, there was resistance from labour unions and professionals: 'Labour relationships are a huge problem ... The issue is jobs. The unions are very strong and professional dominance in the field is very strong ... There is a strong influence from that group [unions and professionals] at the local level and at the provincial level, more at the provincial level from the unions and the provincial psychiatric hospital administrators and that influence is going to dominate the more altruistic type concerns that local groups would have about really making changes that have a lot of meaning.' Key informants noted that a problem with the reluctance of government to create systemic change is that there has been slippage from the original definition of community from the Graham Report (Ontario Ministry of Health, 1988). As one person reflected: 'How do you define community? You can define it by being provided by the community itself, or you can define it by putting the institution in and making the workers just work out in the community, which means they're still institutional staff and institutional concepts, and the tie is more to a treatment perspective than it is to community living perspective.' Limited Areas of Change: Community Integration, Employment, and Education

Although there were some provincial changes towards the values of the empowerment-community integration paradigm between 1985 and 1994, there were also some important areas that changed very little. The documents shifted somewhat over time in their emphasis on the value of community support and community integration, but key informants stated that there has been limited progress in community support and community integration. One made the following point: T think we are identifying the gains that have come from the movement of self-help and people organizing together. We haven't yet, for my satisfaction, been able to identify the gains from all the other corners that we are trying to, integration, housing a little bit, and social networks and the church, that sort of thing. I guess that's the part that for me has been slower to kick in.' Another key informant stated there is 'a lot less than we would like' with respect to community support and community integration. One factor facilitating community integration was the CSDI. In their evaluation of the CSDI, Trainor et al. (1997) found that participation in

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a self-help organization was a springboard for participation in the broader community. Informants also mentioned the de-linking of housing and support that has occurred in several housing agencies that serve psychiatric consumer/survivors as a factor promoting community integration. Also, key informants noted that there has been insufficient emphasis in government policy on jobs and education, which limits the potential for community integration. People become integrated into the community and develop supportive relationships through work and education. One key informant noted that 'the U. S. is ahead [of Canada] in the vocation and education areas,' adding that there are now several 'demonstration grants for supported employment in the U.S.' The Americans with Disabilities Act (ADA) also facilitates employment and education integration. Another key informant noted that the legislation committee, which had a strong survivor voice 'didn't get to talk about the money, where it was and how it could be moved.' Moreover, legislation based on the work of that committee was never enacted. Thus, consumer/survivors have not had any real leverage over the critical issue of funding. Waterloo Region

Activity at the regional level paralleled the increased attention to mental health at the provincial level, and we, the authors, were a part of that regional activity. Following the study assessing housing needs, Geoff played a leadership role in helping to start a housing coalition in mental health, which continued throughout most of this period (Nelson, 1994) .Joanna moved to K-W and was hired as senior researcher with the Centre for Research and Education in Human Services, bringing experience in the area of physical and developmental disabilities, as well as community research. John and Joanna provided consultation to Waterloo Regional Homes in clarifying its values and mission and in reorienting its services (Lord et al. 1998a). Similarly, John assisted the new consumer/survivor organization, Waterloo Region Self Help (WRSH), regarding its values, mission, and programs. What is particularly noteworthy about this time period (1985-94) is that there was a coherence between regional planning and provincial policy. Provincial policy directions and regional initiatives in Waterloo meshed well together, which in part was because the government listened to the concerns of consumer/survivors and family members

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in formulating policy changes. This reflected the empowermentcommunity integration paradigm value of stakeholder participation and empowerment. Consumer/Survivor Participation in Planning The documents produced by the Waterloo Region District Health Council (DHC) showed a change over this period in terms of the value of consumer/survivor participation and empowerment. The Mental Health Needs Assessment Study (Waterloo Region District Health Council, 1986) reflected the traditional paradigm. One of our key informants described the assessment study as 'pretty unsophisticated in terms of guiding principles.' However, four years later, in The Background Paper: Issues Affecting Mental Health Service Planning in Waterloo Region (Waterloo Region District Health Council, 1990), there was an explicit call for consumer/survivor participation in the planning of mental health services. A Mental Health Perspective for Waterloo Region to 1995 (Waterloo Region District Health Council, 1991) was a five-year mental health plan for Waterloo Region resulting from the Graham Report's directive that each DHC formulate a mental health plan with essential functions by 1991 (Ontario Ministry of Health, 1988). The mental health implementation project focused on two key recommendations from the mental health plan, one of which was to develop strategies to increase consumer/survivor involvement in mental health services, delivery, and education. The DHC task group responsible for this project consisted of an equal number of consumer/survivors and service providers. To increase consumer/survivor involvement, the DHC and mental health agencies were urged to adopt the task group's definition of consumer/ survivor involvement and to create opportunities for consumer/ survivors to participate on committees and boards of the DHC and local agencies. Our key informants agreed that the DHC has increased the participation of consumer/survivors in planning and in subcommittees: 'I see some shifts in terms of how information is collected, the kind of credence that's given to views from a variety of stakeholders ... I have to credit the DHC for doing its best for bringing people together ... I've seen some changes happening at the table where at the beginning we would see some pretty condescending remarks ... and I've seen consumers call them on it. To me that's a change. That's a substantial change.' However, key informants also noted that full participation of consumer/ survivors has been limited. One informant said: 'Many of the consumer

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participants tend to be people who are quite passive; they sit at the table; they listen; they don't say a lot. The language level may be a problem here. Some of the people who get nominated for that role are bright and articulate but passive because of what has happened. They don't say a lot.' Two key informants indicated that the DHC could be much more strategic in terms of consumer/survivor participation. It was suggested that there needs to be a more explicit understanding that we are bringing together two cultures. The DHC planning process seemed to work during this period because there was coherency among the three levels of involvement (policy, DHC, and community). The provincial government agenda was coherent with the interests of community agencies and consumer/ survivors, and the DHC reflected these complementary directions. On the other hand, key informants emphasized that the DHC has continually struggled with its identity. One key informant put it this way: 'Sometimes DHCs need to act like the engine to get things going. Other times they serve as the brake, reining in the local aspirations because of a particular provincial direction.' Another key informant noted that this identity dilemma has been going on for years, and it depends a lot on the particular ministry orientation or government in power. Between 1985 and 1994 the identity struggle of the DHC was minimized by the coherency between government policy and community preferences. The Emergence of Consumer/Survivor and Family Organizations The emergence of local consumer/survivor organizations occurred between 1985 and 1994. Cambridge Active Self-Help, which had started in 1987, and Waterloo Region Self-Help were funded by the CSDI initiative in 1991. The presence of representatives from these organizations in DHC planning activities, as well as some professionals from community mental health agencies, led to more discourse about the issues of consumer/survivor participation, segregation, and stigma, and the need for peer support and community integration. Again there was a coherence between a provincial policy initiative, the CSDI, and the wishes of local stakeholders for peer support. There was one self-help organization for families with relatives with a serious mental illness in the region prior to 1985, Family and Friends. Between 1985 and 1994 two new family self-help organizations were formed, the Friends of Schizophrenics and the Depressive and ManicDepressive Association.

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The Expansion of Housing in Waterloo Region The 1986 Waterloo Mental Health Needs Assessment Study emphasized the need for adequate and affordable housing for consumer/survivors. With special funding for housing provided through the cooperation of the Ministry of Health and the Ministry of Housing in the late 1980s, local service providers submitted proposals for new housing programs. The mental health coalition advocated vigorously at both the regional and provincial levels for these proposals, which were strongly supported by the Waterloo DHC. This resulted in substantial growth in supportive housing for consumer/survivors in the region (Nelson, 1994). The theme of coherency between provincial and regional levels again appears to be a major factor in determining whether change occurs. At the provincial level, the cooperation between the Ministry of Health and the Ministry of Housing enabled service providers and planners at the regional level to address an important community need and valued resource, that of housing for consumer/survivors. Community Integration, Employment, and Education The mental health plan for Waterloo Region (A Mental Health Perspective for Waterloo Region to 1995, 1991) contained a number of essential components of a comprehensive mental health system from the Graham Report that included the valued resources of housing and income (Ontario Ministry of Health, 1988). However, the narrowness of mental health policy at the provincial level with its focus on services and supports and neglect of consumer/survivors' needs for employment, education, and income impeded progress towards these valued resources. Partnerships between the Ministry of Health and other government ministries (e.g., Economic Development, Education and Training) were not utilized to provide a vehicle for addressing employment and education. Reflections on the Time of Change (1985-1994) There was a great deal of activity and some important changes in mental health policy and planning between 1985 and 1994 that indicate a shift towards the values of the empowerment-community integration paradigm. At both the provincial and regional levels there was increased consumer/survivor participation in mental health policy and planning. There were also funding initiatives for self-help and mutual aid for consumer/survivors and family members and increased housing for consumer/survivors. These changes stemmed from the growth of the

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consumer self-help movement in society, in general, and the psychiatric consumer/survivor movement, in particular, a favourable political climate, and key resource people, leaders, and bridge builders between different stakeholder groups. However, there was less progress in terms of community integration and access to the valued resources of employment, education, and income, because of a lack of policy attention to these issues. This was an exciting time for agents of mental health change. Mental health, which had been dormant as a public issue, shifted quickly into the public eye and the new governments responded to some of the challenges with changes in policy and planning. This period of rapid change was soon to end, however, as we will show in the next section. A Clash in Values: The Re-emergence of the Traditional Paradigm (1995-1998) / see the initial phases of mental health reform as being value-driven, and the present as bypassing the values altogether and just supporting it because it's economically feasible. You don't even have to have values and beliefs anymore.

Although the values that initially guided mental health reform were seen to be congruent with the empowerment-community integration paradigm, these values no longer appear to be important in the period from 1995 to 1998, as is indicated in the quotes above. Gone are the heady days when consumer/survivor activists and their allies were creating social change. In the current context, many consumer/survivors are struggling for survival. Ontario

With its election in 1995, the Tory government began to implement its 'Common Sense Revolution,' which included cutbacks to health, education, and social services. The larger global context had also been changing with a world-wide swing to the political right and the centralization of power and control in the hands of the corporate elite (Barlow and Campbell, 1995). Moreover, we noted that the political right has coopted the language of social change. Political neo-conservatives now use words like 'revolution,' 'empowerment,' attacking the 'status quo.' In this section, we describe and analyse how mental health policy and planning have fared in this changing social-political climate.

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Cutbacks to Valued Resources for Disadvantaged People Since 1995 we have observed a lack of progress regarding access to valued resources, with no significant change in the areas of work, income, housing. There has been a government freeze on the creation of new social housing since 1995. This has had serious consequences for consumer/survivors, many of whom depend on social housing. General welfare benefits were cut by 21.6 per cent soon after the Tory government was elected, and a new program of Workfare has been implemented whereby able-bodied people on social assistance are expected to work for their assistance. Finally, there have been cuts to public education, including adult education which is sometimes accessed by consumer/survivors. Factors Related to the Shift Back to the Traditional Paradigm We believe that the main factor influencing the shift back to the traditional paradigm and away from the empowerment-community integration paradigm was the business agenda of the provincial government (Barlow and Campbell, 1995). Similarly, another participant stated that the values guiding current mental health policy have been 'economic and administrative.' One participant said that instead of'putting people first' (the title of the 1993 provincial mental health policy document), that the current government has been 'putting money first.' Another participant described how there has been a 'shift in health from a moral issue to a business/commodity orientation.' At the same time, participants indicated that provincially there is not a strong counterforce to maintain the values of the empowermentcommunity integration paradigm: 'There is not an alternative direction.' And, 'It's not a grassroots movement anymore.' Another major factor impeding progress towards the empowerment-community integration paradigm, which follows from the business-oriented values of the Tory government, has been the current context of cutbacks and shrinking funding. As one consumer/survivor noted, 'We are just at die beginning of cutbacks.' With regard to provincial policy related to cutbacks, key informants noted the emphasis on downsizing and amalgamation in the entire health sector. The minister of health established the Health Services Restructuring Commission (HSRC), whose mission has been the restructuring of health services in the province. Psychiatric consumer/ survivors and other socially disadvantaged groups have not been represented on the restructuring commission.

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Participants noted that the restructuring commission has not engaged in community consultation; rather, it directed changes. An example of this is two documents released in London by the restructuring commission in February 1997 (Health Services Restructuring Commission, 1997a, 1997b). These documents focused entirely on institutional programs with no attention to community mental health. Waterloo Region

During the time that this study was conducted (1995-8), we found a gradual shift away from the empowerment-community integration paradigm back towards the traditional paradigm in regional level planning in mental health. However, there has been local resistance to this trend. Another important finding regarding this period is that several planning, resource development, and advocacy activities emerged outside of the DHC. We describe and analyse these changes beginning with a review of DHC activities. Regional Planning within the DHC and the Challenges of Stakeholder Participation

In 1995 and 1996 the Waterloo Region DHC completed three documents related to the region's systems design plan for mental health reform. All of these reflect the values of the empowerment-community integration paradigm. Prepared in 1995, Mental Health Issues and Concerns (Waterloo Region District Health Council, 1995) was formed as the background appendix to the Multi-Year Mental Health Plan of the Waterloo Region DHC (Waterloo Region District Health Council, 1996a). This document reflected the values of the empowerment-community integration paradigm in its focus on understanding mental health in its environmental context, an awareness of the need for self-help and social support, an emphasis on access to valued resources such as housing and employment, and a recognition that stigma can affect people's access to housing. The Mental Health Needs Review was prepared by the DHC in 1996 (Waterloo Region District Health Council, 1996a). The needs review used a framework that considered the person at the centre of the mental health system and hence was consistent with the empowerment-community integration paradigm. The Waterloo Region DHC completed its system design in 1996 (Waterloo Region District Health Council, 1996b), and focused on the four key areas outlined in the 1993 provin-

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cial document, Putting People First (a) crisis intervention, (b) support coordination, (c) supportive and supported housing, and (d) consumer/survivor and family initiatives. In terms of the values guiding regional planning in mental health in 1995 and 1996, several key informants stated that there was a strong emphasis on stakeholder participation, collaboration, and coordination. 'Definitely coordination, and, I think, to some degree, stakeholder participation,' noted one key informant. Others stated that there continued to be consumer/survivor participation in planning. By the spring of 1997, with the announcement that LPH would provide assertive community treatment (ACT) teams in Waterloo Region, we found participants saying it was a struggle to maintain the values that had initially guided mental health reform: T would say that there's a lot of people there, struggling right now to maintain values that were accepted, that we accepted as a committee ... Changes in the political atmosphere have brought out some opposition that wasn't necessarily being expressed at the start.' Participants used words like 'apathy' and 'fatigue' to describe their feelings about the mental health reform process. These feelings stemmed, in part, from difficulties integrating the perspectives of different stakeholders in the planning process. Part of the problem of integrating different perspectives is that smaller agencies have less power than larger agencies within the context of regional planning: 'It would be hard politically to go to a meeting [at the DHC] and say [to a hospital] you're not a community organization that [a support function] should be done by a community organization. They would insist that they are and they would win and its confrontational. It's so big and powerful ... So if I wanted to influence the DHC and the hospital wanted to influence the DHC, how could we compare? The budgets are so different, so how could we influence them? It's hard.' Within this changing context, the DHC itself was in a state of flux. A key DHC staff member left in 1997, the DHC's mental health committee was dissolved, arid the Waterloo Region DHC merged with the DHC of an adjacent region as of April 1998. Traditional Services or Community Support and Integration ? The Introduction of ACT Teams

We found that there was almost no discussion of mental health reform by 1998 in Waterloo Region. Rather, the implementation of ACT teams appeared to take over the agenda of mental health policy. Stakeholders in the community believed that they were reacting to the ACT initiative

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rather than driving a process of mental health reform. ACT teams with staff from LPH were introduced into the community with the Waterloo Region DHC facilitating the introduction of this program. The local Mental Health Coordination Group has devoted itself exclusively to issues regarding ACT since 1997. The coordination group, which was formed in 1996 to focus on issues of coordination of services and supports, consists of several different mental health stakeholders, both individuals and organizations. Not only did the introduction of ACT appear be at odds with the region's systems design for mental health reform, but the way it was introduced into the region was done outside of the mental health reform process. One consumer/survivor made the following statement about consumer/survivor participation: 'We consumer/survivors feel pretty stupid to have been a part of the mental health reform process.' What was frustrating to local organizations was the way the Ministry of Health 'parachuted' ACT teams into local regions with almost no regard for various recommendations around key areas of mental health reform, including housing, case management, and employment. Although there was a struggle to maintain the values of the empowerment-community integration paradigm in 1995 and 1996, a clash in values between the traditional and empowerment-community integration paradigm was clearly evident in our community in 1997 and 1998. This value clash paralleled the fading attention to mental health reform and the increased planning for ACT teams. The region's psychiatric hospital (LPH), the DHG, many local mental health professionals, and some family organizations have supported the introduction of ACT teams. The family organizations have long believed that their needs were not being addressed by the mainstream organizations and hoped that ACT teams would fill a void. WRSH has been completely 'upfront' and critical of ACT, while others such as CMHA have raised serious concerns. Waterloo Regional Homes and others, although they had concerns, have worked with the ACT process in order to influence the implementation in our community. Those who have objected to ACT see the values underlying ACT to reflect the community treatment-rehabilitation approach within the traditional paradigm, not the empowerment-community integration paradigm. Some of the concerns voiced locally about ACT, which are consistent with other critiques that we mentioned earlier (Nugent and Spindel, 1998), are that it has a biomedical and professional bias, emphasizes social control through aggressive outreach, and surrounds

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clients with mental health professionals rather than natural supports. Upon hearing a presentation about ACT teams at a community meeting, one consumer/survivor described it as a 'hospital without walls,' which provides 'no growth, challenge' and is 'demeaning.' Advocacy and partnership efforts within Waterloo Region have led to the development of ACT advisory groups, some of which have pushed for principles consistent with the empowerment-community integration paradigm. Ironically, in the fall of 1999, Welcome Home (a new initiative, which is described later in this section) and the Waterloo Region ACT team signed a partnership agreement, whereby Welcome Home will provide peer consultation to the ACT team. This is a unique 'spin' on ACT. The ACT team in Waterloo Region now describes itself as being consumer-driven. It remains to be seen if this ACT team will fully embrace the empowerment-community integration paradigm. Reflections on the Re-emergence of the Traditional Paradigm

Both provincially and locally, we noted that there has been a return to the values of the traditional paradigm between 1995 and 1998. The participation of stakeholders in public policy and planning has diminished, while elite (the Health Restructuring Commission) and established groups (psychiatric institutions) have reappropriated control of policy and planning. The values of mental health reform and consumer/survivor empowerment are no longer apparent in government discourse about mental health. There has also been a focus on professionally staffed rehabilitation services in the community (i.e., ACT teams). Finally, we found little to no emphasis on social justice and the need for disadvantaged people to access valued resources in current policy and planning. The provincial and regional movement back to the traditional paradigm coincides with a conservative social-political climate created by the Tory provincial government. Interestingly, within Waterloo Region, many of the values and practices of the empowerment-community integration paradigm remain intact. The self-help, consumer/survivor sector continues to be strong, and CMHA and Waterloo Regional Homes continue to be guided by the principles of the empowerment-community integration paradigm. A new community-based initiative, Welcome Home, also reflects the empowerment-community integration paradigm. With stakeholders from different sectors, Welcome Home strives to implement an approach to deinstitutionalization based on informal social support.

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John has taken a leadership role in developing Welcome Home. Citizen members of Welcome Home, including consumer/survivors, have visited people in LPH who will be returning to the community to establish supportive relationships and connect people with the community. As one member of Welcome Home said: 'So if we focus on informal support, both peer support and connecting people with the community, we will certainly work differently from what an ACT team will be doing. We are going to meet people, but not as service providers.' Despite the continued existence of the empowerment-community integration paradigm in 'pockets' of Waterloo Region, the other reality is that the traditional paradigm has re-emerged within the policy context within the province and the region. An example is that the current policy context is supporting people with serious mental health issues to live in privately operated boarding homes and rooming houses. Funding for these options has increased, at the very time that funding for non-profit housing has decreased. How much longer these two paradigms can coexist when the policy context has reverted to the traditional paradigm remains to be seen. Themes and Conclusions Regarding Changes in Policy and Planning in Mental Health Interpretations of Changes in Mental Health Policy and Planning: Importance of Values, Stakeholders, Social-Political Context, and Time We'll soon shake your windows and rattle your walls For the times they are a'changin'. Bob Dylan

Was there social change in mental health policy and planning in Ontario between 1985 and 1994? Did claims-makers 'shake the windows and rattle the walls' of government and the institutional-medical establishment in mental health? Or were the changes made merely cosmetic ones, a change in language with no real change in substance, like the Royal Bank's co-optation of Bob Dylan's 1960s protest song, 'The Times They Are A'Changin"? We summarize the overall findings from our research on policy and planning changes in mental health in Table 5.1. Our goal for Part 2 was to understand changes in provincial mental health policy and planning and implementation of that policy in Waterloo Region towards the values of an alternative paradigm in community

Table 5.1. Changes in mental health policy and regional planing across different time periods Time period Level Provincial policy

Before the beginning (prior to 1 980)

Seeds of change (1980-4)

Time of change (1985-94)

Clash in values (1995-8)

• Lack of organized consumer/survivor, family, and community mental health groups • Hegemony of government and medicalinstitutional sector in policy formulation

• Emergence of consumer/survivor, family, and community mental health stakeholders • Partnership with Ministry of Health regarding housing for consumer/survivors in Toronto

• Extensive stakeholder participation in Graham Report process and its sequels • Liberal government expands funding for community mental health programs and housing • NDP government funds CSDI initiative • Shift from 'supportive' to 'supported' housing approach in policy

• Mental health policy formulation vested in HSRC and Ministry or Health with limited consultation • Emphasis on institutional closure and implementation of ACT teams • Cuts to income support, housing, and education programs

• Beginning of community mental health programs in the region • Housing needs assessment

• Mental health needs assessment study • Extensive stakeholder participation in mental health reform process and regional systems design plan for mental health • Funding of 2 consumer/ survivor self-help organizations

• DHC mental health plan developed, but no funding for implementation • HSRC proposes reallocation of psychiatric beds to region • ACT teams introduced into the community

Regional Planning • No regional level planning in mental health • Absence of community mental health programs and dominance of medical-institutional services

ACT, assertive community treatment; DHC, District Health Council; HSRC, Health Services Restructuring Commission

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mental health. In examining these changes in mental health policy and planning, we found that there are a number of factors that shaped the policy-making process. Lomas (1993) noted that knowledge, values, and institutional structures all influence policy. Consistent with resource mobilization theory (Jenkins, 1983), our findings suggest that stakeholders, social-political context, and time are equally important influences. As we have seen, values do matter in policy development. Putting People First, which formed much of the provincial mental health policy in the early 1990s, was a culmination of a shift in values that had occurred over a decade. To understand this shift, however, we have found it essential to examine the broader social-political context and the timing of various stakeholders who 'made things happen.' Resource mobilization theory suggests that in times of political change, there is a 'window of opportunity' during which social movement claims-makers push for change (Nelson, 1994). The years from 1985 to 1994 represented such a period. The Tory Party, which had governed for forty-two consecutive years, lost the next three elections. The Liberal party and the NDP, both of which have a tradition of a more progressive social agenda, ruled the province during this ten-year period, and it was during this time that changes in mental health policy, planning, and programs were made. Also, leaders from the psychiatric consumer/survivor movement joined forces with community mental health professionals and provincial bureaucrats to push for changes in the mental health system in Ontario. The importance of broad-based constituencies that give clear messages for desired changes has been noted in other provinces and states (Cromwell et al., 1988; Niles and Ross, 1992; Wilson, 1989). This period of temporary expansion from 1985 to 1994 was followed by a period of retrenchment (1995-8), which has inhibited the advances in mental health reform. This finding is consistent with Levine and Levine's (1992) historical analysis of changes in children's services. During periods of economic prosperity, progressive governments support the activities of claims-makers to reform social policies, while during periods of economic stagnation, the policies of conservative governments tend to rationalize budget-cutting through an ideology of blaming the victim. Furthermore, during the past three years (1995—8), key informants noted that the medical-institutional sector, which had been relatively quiet during the period of change from 1985 to 1994, reasserted its power and resisted change. One of our key informants referred to this as 'the empire strikes back.'

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Key Themes Coherency during Times of Change

Coherency is a key theme regarding changes towards the empowermentcommunity integration paradigm during the period 1985 to 1994. We noted previously that regional planning worked best when there was a coherence between the desires of local stakeholders and provincial policy initiatives. The theme of coherence reflects a synchronization of the values of local stakeholders with government initiatives during a favourable social-political context. There is an excitement and hope for change when all the pieces seem to be fitting and working well together. This coherency also increases the likelihood that progress will be made more quickly. Ambiguity and Reluctance during Times of Value Clash

From 1995 to 1998 there was an ambiguity about the values and concepts underlying community approaches and a reluctance to embrace fully the empowerment-community integration paradigm. This ambiguity and reluctance can be traced back to policy documents. A focus on consumer/survivor and family non-service initiatives and supported housing, which reflect the empowerment-community integration paradigm, sit side-by-side with a focus on traditional case management and crisis intervention, which could reflect the traditional rehabilitation paradigm. Moreover, Putting People First, the policy document guiding current mental health reform, neither underscores the need for nor outlines a strategy to promote education, training, and employment of consumer/survivors. This theme of ambiguity and reluctance about the empowermentcommunity integration paradigm may best be reflected in the fact that the medical-institutional sector remains a strong force in the mental health system (Simmons, 1990b). This large force within the system is currently attempting to redefine itself as part of the community-based system, just as it did in the U.S. community mental health movement in the 1960s (Chu and Trotter, 1974). With the government plan to reallocate funding from institutions to the community, the institutions are arguing that they will now provide community (outpatient) services. However, the underlying philosophy and training of the institutional sector are rooted in the traditional paradigm. If institutions are successful in repackaging themselves, we will have neither service improvement nor an empowerment-community integration paradigm, but simply 'old wine in new bottles.'

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Final Reflection on the 'Time of Change'

We believe that it is important to make a distinction between a paradigm shift and service-delivery improvement. Our findings indicate that there was a partial paradigm shift at the policy and planning levels between 1985 and 1994. This was a time in which there was coherency between provincial policy and regional planning. A changing social-political climate favoured the values of claims-makers espousing the need for an alternative paradigm in mental health. In conclusion, there is a great deal to learn from this analysis of mental health policy and planning in Ontario and the K-W community between 1980 and 1998. Bloche and Cournos (1990) have noted that competing narratives about serious mental illness have informed social policy over the years. Some of these narratives keep citizens and planners disconnected emotionally from the real issues facing this vulnerable population (Church, 1995). It is our view that the empowerment-community integration paradigm offers the best hope to reconnect communities, families, and policy-makers with the issues of serious mental illness. The progress in Ontario related to consumer/survivor involvement has been significant. The ambiguity and reluctance about moving ahead more substantially with the empowerment-community integration paradigm represent images of fear and power. Discrimination and stigma still remain the largest barriers that consumer/survivors confront every day. For a few short years, there was consensus from the major claims-makers about the need for reform. The right timing, the right values, and the right people made a difference and moved policy ahead. Whether other 'windows of change' can be recreated in the near future to once again accelerate much needed social reform is now open to question. In Part 3 we turn to an examination of how local community mental health organizations responded to these periods of coherence and reluctance. For a paradigm shift to make a difference in the lives of consumer/survivors, it stands to reason that there should be some coherence between local programs, regional planning, and provincial policy. Research in Vermont has suggested that such coherence was not always evident. Policy changes towards the empowerment-community integration paradigm were not necessarily accompanied by organizational and community changes towards the empowerment-community integration paradigm (Dewees et al., 1996; Pulice et al., 1995). Thus, there is a need for an in-depth examination of changes at the organizational level of analysis.

PART THREE

One Journey, Three Pathways: Change in Mental Health Organizations

As we described in Chapter 1, community supports provided to psychiatric consumer/survivors are organized and provided primarily through community organizations. The advent of community mental health organizations was a response to the decline of the role of the psychiatric asylum and the need for community alternatives. Mental health organizations act as mediating structures between government policies and individuals and play important roles in the lives of many people who require support. Understanding the changes in those organizations creates a more informed context for understanding the changes experienced by the individuals who use the services of those organizations. In Kitchener-Waterloo there are three major community mental health organizations: the CMHA/Waterloo Region Branch, Waterloo Regional Homes for Mental Health, and WRSH. These organizations, along with the local general hospital and its mental health programs, constitute the primary mental health services for adults with significant mental health issues. All three community mental health organizations have experienced many changes in the 1990s, while shifting their philosophy and practice towards the concepts of empowerment and community integration. The purpose of Part 3 is to illustrate the processes and outcomes of change towards the values of the empowerment-community integration paradigm that have occurred at the organizational level of analysis. In Chapter 6 we describe the ways each of the three community mental health organizations embarked on its journey of change, noting common and unique strategies that were used to create organizational change. In Chapter 7 we examine the types of changes and innovations that were created across the three organizations, and we analyse factors that both facilitated and inhibited these changes.

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Chapter Six

Pathways towards Change: The Process of Organizational Change in Three Mental Health Organizations

/ think we became more interested again in wanting to know what the consumers that we supported were looking for. So from an organizational perspective, we have increased the number of consumers who participate on committees and the board. We also survey consumers that we support when we want to know feedback to particular policies and issues. Manager

While many organizations have been in the process of implementing new ideas that illustrate a shift in philosophy and practice, there has been little research that describes and analyses the process of change that organizations go through to move in this new direction. In this chapter we fill this gap by documenting the process of organizational change experienced by the three mental health organizations. As we mentioned in Chapter 2, we believe that Senge's (1990) theory of the learning organization is useful in explaining these approaches to change. The purpose of this chapter is to develop an understanding of the context of change within each of the three mental health organizations and the strategies that were employed to create organizational change. The main sources of information included key informant interviews at each of the three organizations and a review of agency documents. As we noted in Chapter 2, there are two main approaches to change in human services. One is to use organization development processes and strategies, while the other is to create new settings that are alternatives to mainstream organizations. We have organized this chapter around these two approaches. Within each main section (change in mainstream organizations and the creation of alternative settings), we begin by reviewing relevant theory and research. Then we describe dif-

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ferent pathways that the three mental health organizations followed as they strove to implement the values of the empowerment-community integration paradigm. Our findings are presented around the themes related to the change processes and strategies across the two mainstream organizations, the Canadian Mental Health Association / Waterloo Regional Branch (CMHA) and Waterloo Regional Homes for Mental Health, as well as one alternative setting, Waterloo Region Self Help (WRSH). In conclusion, we summarize the similarities and differences in the processes of change among all three organizations. Change in Mainstream Organizations A Critical Review of Previous Theory and Research In recent years, the organizational change literature has reflected a dramatic shift in thinking about how human service organizations can and should change for the benefit of the people they support (Bergquist, 1993; Handy, 1995; Kluger and Baker, 1994; Lincoln, 1985; Shera and Page, 1995). In traditional organizational change theory, organizations seek equilibrium and focus on managing change (ibid.). Leaders play the main role to 'make change happen' and the change itself is generally from the 'top-down' (ibid.). Current organizational change theory recognizes that it is not possible to anticipate the consequences of all organizational actions and that organizations cannot be viewed or treated like machines (Zimmerman and Armstrong, 1994). Moreover, leaders are no longer seen as being able to fully control the structure and functions in their organizations. Learning Organization Theory Over the past two decades many organizational theorists have contributed to an emerging vision of human potential in organizations (Block, 1993; Senge, 1990). In Reflections on Leadership, Richard Smith (1995) described a shift from a mechanistic model of organizations, which emphasizes a pyramidal structure, to emerging models, which emphasize circles or work teams. The concept of the learning organization is a good example of emerging models (Senge, 1990). Central to the concept of the learning organization is the notion of a shared vision and common purpose (Bergquist, 1993; Block, 1993; Kluger and Baker, 1994; Senge, 1990). In learning organizations, it is

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the vision and values that guide the everyday actions of organizational members (Racino, 1991). 'Living the values' or 'walking the talk' is the key challenge in such organizations. This effort is particularly challenging as daily contradictions are inherent. In learning organizations the role of leaders is viewed in terms of stewardship. The focus of leaders is to facilitate the involvement of people throughout the organization, share information, provide opportunities to learn, and to create a culture in which people can participate and contribute both to the goals of the organization and to their own personal development (Block, 1993; Senge, 1990; Weatley, 1992). Participatory decision-making processes that encourage planning and strategic changes from the 'bottom up' are another key ingredient of learning organizations (Carling, 1995; Handy, 1995; Lincoln, 1985). This means that stakeholders from all of the different domains (board members, managers, staff, and service users) should participate in organizational change and decision-making (Handy, 1995; Kouzes and Micos, 1979; Lincoln, 1985; Toulmin and Gustavsen, 1996). Some argue that the key to organizational change in this era is to effectively distribute purpose and power throughout the organization (Block, 1993). The learning organization approach also emphasizes systems thinking. Systems thinking involves a shift from seeing change as linear to seeing change as an interactive process in a series of interrelationships. There is also a critical focus on the embedded contextual features of the environment (e.g., resources, culture). In reviewing this literature on organizational change theory, we knew that changes in values, participation, arid decision-making processes were likely indicators of a paradigm shift in the organizations that we studied. Research on Organization Development in Human Service Organizations There has been very little research on organizational change in social welfare or community mental health settings (Bargal and Schmid, 1992). Organizations that support people with developmental disabilities have a longer history of promoting the values of the empowermentcommunity integration paradigm than have mental health organizations (Racino, 1991). Thus, community mental health organizations may profit from the experiences and lessons learned in organizations for people with developmental disabilities. Bond and Keys (1993) found that empowerment and collaboration were the two key organizational processes in creating change in an organization serving people with developmental disabilities. Empowerment

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included creating more open communication and clear policies, while collaboration entailed more equal relationships between stakeholder groups and the presence of boundary spanners, people who relate to and help connect different stakeholder groups and organizational domains. There have been a few studies of organization development in community mental health settings (Hall, 1985; Hunnicutt and MacMillan, 1983; Moosbruker, 1983), but these interventions have not focused on shifting the organizations towards the values of the empowerment-community integration paradigm. One exception is a study by Pyke and Lowe (1996) who reported on the change process within a housing organization for psychiatric consumer/survivors in Toronto. Both internal and external pressures pushed for a re-examination of the organization's values and services. An action research process was used to gather information from staff and residents. Planning groups were formed that recommended specific ways of implementing key changes: (1) separating the agency's role as landlord and support provider, (2) meeting the unique needs of each tenant, and (3) creating a partnership between staff and consumer/ survivors. Follow-up surveys and interviews revealed that both staff and residents reported benefits to the changes that were made. Pranger (1999) examined the involvement of consumer/survivors in organizational decision-making in three community mental health organizations, including one consumer/survivor initiative, in one Ontario community. Each of the organizations placed a strong emphasis on consumer/survivor participation and empowerment, and each was successful in increasing the numbers of consumer/survivors participating in decision-making roles. However, none of the organizations developed an explicit vision and values to guide the organization. In the absence of such a vision, there was little emphasis on the value of community integration, and all three organizations experienced considerable conflict and internal dissension. While many organizations have implemented changes based on the values of the empowerment-community integration paradigm, there is a gap in knowledge about these practices. Next, we describe two examples of the process of change in mainstream organizations in Waterloo Region. Organizational Stories: Background, Origins, and Pathways towards Change

During the 1980s the two formal community mental health organizations in Waterloo Region experienced rapid growth. There was a shift

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away from the medical-institutional model and an emphasis on volunteer services to a community treatment and rehabilitation approach provided by professional and non-professional staff. At the same time, however, there was not a clear vision or philosophy guiding this growth, arid there was very little consumer/survivor participation in these organizations. In both cases the desired values were consistent with the values of what we have identified as the empowerment-community integration paradigm. There were three major catalysts for the process of change: (1) tremendous expansion of the organizations (rapid growth in terms of programs, staff, and budget); (2) influences in the field of community mental health (e.g., the philosophy of empowerment and community integration, changes in government directions, a desire for improvement of services); and (3) leadership, which included articulating the values of the organizations and organizing processes for change. Canadian Mental Health Association / Waterloo Region Branch: The First Community Mental Health Organization in the Region The Early Years

The Waterloo Regional Branch of the CMHA was founded in 1961. Prior to 1980 CMHA was the only community mental health organization in the region. When we first got to know the local CMHA around 1980, it was located in a cozy old house in Waterloo on the main northsouth street of K.-W. At this time the CMHA was a very small agency with only three paid staff who did not have professional training in mental health: an executive director, a program director, and an office staff person. The office staff person answered the phone and met people as they came in the front door in a way that made them feel welcomed and at home. She showed a strong personal interest in people and related well to individuals from many different walks of life. The atmosphere of the CMHA was quite friendly and informal. The CMHA operated on a shoestring budget with a large number of volunteers who worked in a variety of different programs serving different populations. It included a distress line, a one-to-one volunteer program for people with serious mental health problems, and a friends program in which adult volunteers were matched with elementary school children who were experiencing some difficulties adjusting to school. Senior CMHA board members have shared stories with us about how CMHA volunteers used to visit people who were in-patients at Lon-

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don Psychiatric Hospital and bring them gifts on special occasions, such as Christmas holidays. A Time of Expansion

The period from 1980 to 1990 was a time of rapid growth for the CMHA. The former program director became the executive director for the agency and the newly created Community Mental Health Branch of the Ontario Ministry of Health provided funding for new programs. New programs included a social-recreational program in Kitchener, a clubhouse in Cambridge patterned after the Fountain House model (Beard et al., 1982), and the Community Aftercare Program which provided case management based in part on the Boston model of psychiatric rehabilitation (Anthony et al., 1990). The central office moved to a much more spacious, modern office building, and two other properties were rented. The number of full-time staff grew from three to more than a dozen, and several staff who had professional training in mental health (e.g., community psychology, psychiatric nursing) were hired. Research on the effectiveness of the Community Aftercare Program demonstrated that this program was very successful in reducing hospitalization for consumer/survivors who participated in case management (Nelson, Sadeler, and Cragg, 1995). However, the CMHA did not have an overall vision and values that guided its work during this time. The programs for people with mental illness tended to operate as distinct islands that were most strongly associated with the program staff rather than any coherent agency philosophy or value base. Overall, the programs tended to reflect a community treatment-rehabilitation approach, which was reminiscent of the medical model from the perspective of one consumer/survivor: 'In the late 1980s I would not deal with them [CMHA staff] because I believed that they were too close to the traditional medical model in thinking and I did not wish to have anything to do with that.' There was some family participation, but little to no consumer/survivor participation on the board or program committees. Vision and Values Guiding the Change Process

In 1991 Geoff was a member of the CMHA hiring committee, which hired a new executive director, John Jones. At this time the board of directors began the process of strategic planning to clarify the values and vision of the agency and to unify some of the autonomous programs. Having gone through a great deal of growth in the 1980s, the

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board decided it would be timely to review where it had been and plan where it was headed in the future. The leadership of the executive director, combining both experience and commitment to values of the empowerment-community integration paradigm, was a catalyst for the change process within CMHA. He was able to import his experiences with the paradigm from the developmental disabilities field into the field of community mental health. He identified other leaders, hired new staff, and recruited new board members with similar values. These individuals saw the need for the agency to develop a newly shared value base, vision, and philosophy, which it was lacking. In his report to the board in February 1992, the executive director expressed the need for a vision and philosophy: 'Problems arise when there is not an overall umbrella philosophy that is clearly articulated to all board members, staff, and volunteers. The association, through its board of directors, needs to establish a clear philosophy that acts as a guideline on the agency's policies as well as provides direction to how services are to be provided. Staff would be hired based on their sharing the beliefs of the association.' The development of a vision for the organization was grounded in a set of values, as is stated in a program document (no date): 'Certain fundamental shared values are at the heart of the Association's beliefs. They unite us and provide inspiration for the organization's goals and objectives.' Key values from program documents include: 'self-determination,' 'community integration,' 'access to appropriate and adequate resources/supports,' 'integrity,' and 'social justice.' These espoused values clearly reflect the values of the empowerment-community integration paradigm. Planning and Implementation of the Change Process

The process of clarifying the agency's values began with management and staff, then branched out to the board of directors, family members, service users, and community members. The change process was described as 'participatory and integrative.' As one person said, 'Implementation, values clarification, and planning all went on at the same time.' There was a strong emphasis on stakeholder participation: 'Trying to work collaboratively' was a key aspect of this process. Using transactive and participatory approaches to planning, this process reached almost all involved in the organization (Friedmann, 1973). As one person said: 'It is important that all people at all levels be involved in the process,

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that they all have a say in creating the values. Otherwise, you will have hostility between the groups.' The process of value clarification included a combination of small group meetings and larger forums. In a focus group, a board member and the executive director described this process as follows: 'We went to stakeholder groups, brought them all together, and they spent a day developing principles. Fifty-five people participated ... There were 12 to 14 people in the room who had gone through the process. That was a strategy. The principles were not developed in one day.' The value clarification process led to the development of a mission, vision, and principles of services. Key parts of the vision were 'providing support to the person to participate further in the community,' 'the person taking control,' 'choice,' and 'working with the community to make them more accepting of people.' Once the values were agreed upon, they were used as a benchmark to evaluate the services that the agency was offering. For example, the agency decided to disband a psychosocial clubhouse, because it was seen to be inconsistent with the new emphasis on community integration. As the executive director stated: That's how we tackled the clubhouse issue. Did it fit with our values? Now what are we going to do with it?' The leadership factor mentioned earlier was also seen as critical for moving the changes from language to action. One staff member noted that 'If the leadership isn't there, don't do it. You will end up with a lot of words, and no one to make sure you head in that direction.' Key changes happened at the board level. The board of directors began a self-examination of its key functions and moved towards an adapted form of the Carver (1990) model of board governance. The board shifted its focus away from programs and day-to-day operations onto broader issues, vision, mission, and future planning. In 1992 the board also created a social policy committee that developed draft policies for the board on supported employment, housing, support networks, language (i.e., 'how we talk and "label" the people we support'), workplace culture, principles of decision-making, and conflict resolution. The social policy committee included board members, staff, family members, and consumer/survivors; it was dissolved in 1994. The main strategies for change included (a) clarifying the vision, (b) bringing in new people who fit with the vision, and (c) educating organizational members about the practice of the vision and values. The new executive director played an instrumental role in all of these activities. For example, he organized educational workshops and professional

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development trips to initiate change. A number of board and staff members travelled to Vermont to meet with the Centre for Community Change Through Housing and Support, directed by Paul Carling, a key figure in the development of the empowerment-community integration paradigm. Also, the Centre for Research and Education in Human Services was hired in 1994 to conduct a workshop on participatory management to enable staff across the organization to understand the participatory approach to organizational management. Struggles and Challenges

CMHA experienced many struggles in translating the language into practice. In a focus group, the executive director, the board president, and a consumer/survivor board member (respectively) made the following comments: The most difficult problem in implementation was the contradiction between what is believed and what people are doing. When someone is doing well, it is not as difficult to apply the values. When someone is not coping, then it is much easier to move back to old beliefs and not apply the new values. It is easier to change what you call something than to actually change what you do. There is a gap between what people say and what they do.

Changing practices based on the values led to different struggles for staff and people supported by the agency. For staff, change was very personally challenging and often involved changes in attitudes. For consumer/survivors, change was something new, different, and unpredictable. One struggle for staff was feeling criticized: 'If you provide services differently and do it in a way that you are talking about it, in the community, trying to change dramatically, then others respond very critically since they perceive that you are being critical of them. For example, if you change a name (e.g., case managers versus support coordinators), then case managers would think that you are saying that they are wrong.' The key planning tools for moving the change from language to action within direct services for people were (a) discovery planning and (b) crisis planning, both of which are now core features of consumer/ survivor-directed services. These tools were also used to support the staff in understanding their new role.

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Another challenge involved identity change, which took time. There were also challenges in terms of changes in staff responsibilities and expectations. Staff often felt frustrated and unprepared for the change. One program manager made the following comment about this issue: 'If you bring in people who look at the world differently, it's not like the world will change overnight, like one day you have a group home and the next you don't. You have to work on a change in attitudes. It's like a conversion process. It involves more than changing appearances.' Some people who were supported by the agency experienced a loss of stability when change was introduced. A CMHA staff person made the following observation: 'Sometimes people feel like they are being abandoned, cast out on their own. There is a loss of the central areas of their lives, finding a place where they belong, especially the older people, who were expected to undergo change rather quickly. They had no understanding of why or what was expected of them or how they fit.' The implementation process generated conflict at many different levels: (a) personal, (b) organizational, and (c) in the community between the CMHA and other agencies. Key informants commented: Although staff are very capable, it is still important that we recognize that a new administrator bringing in new ideas and a different management style will create anxiety and sometimes resistance.' (Reflecting on the CMHA, Executive Director's Report, February 1992) It is important to build a strong commitment to the value base, because in implementation there is going to be a lot of conflict. Other agencies agreed with the values and yet when you say you are making change and it will affect how we relate to them, there is resistance ... Now psychiatrists are really upset because we used to give them case notes. We looked at who do you work for. The psychiatrist now has to relate to the person rather than the case manager.

The process of change and struggles identified as a result of it at CMHA were consistent with processes identified in creating changes in organizations serving people with developmental disabilities (Bond and Keys, 1993). The same key processes created changes at CMHA. Empowerment included creating more open communication and clear policies, while collaboration entailed more equal relationships between stakeholder groups. Research also shows that the process of achieving

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empowerment within organizations typically has stresses and struggles, as people learn to live with the change (Lord et al., 1998). Strategic Planning and Organizational Change in Waterloo Regional Homes for Mental Health A Time of Rapid Growth and Expansion

Waterloo Regional Homes was developed in 1979 by a group of professionals, family members, and concerned citizens in response to the lack of suitable, stable, affordable housing and support for people with serious mental illness. While formally under the auspices of CMHA, Waterloo Regional Homes established itself as a separate organization in 1980 once funding was secured. There were two group homes funded by the Ontario Ministry of Health and Canada Mortgage and Housing Corporation, one in 1980 and one in 1984. The board of directors' vision to develop a range of affordable housing was actively implemented throughout the late 1980s. The organization added two more group homes, bungalows, and apartments, totalling nine separate homes. In addition, three community support programs - a housing registry, a boarding home support program, and a community support program with the local housing authorities - were developed which currently support approximately 150 people. The organization grew very quickly in terms of programs, staff, and budget during the 1980s. Wendy Czarny, the coordinator of the first group home, became the first executive director for the agency, and she remains in that position today. While the organization was based primarily on a rehabilitation approach in its early years, the medical model continued to influence how services operated, particularly in the organization's criteria for acceptance to its programs. As staff members stated: 'There was a view that, given a "homelike" environment, something to do during the day, medication monitoring, people would be rehabilitated and resume a normal life.' And, 'People had to have a documented psychiatric history, usually one or two hospitalizations in order to be eligible for services. They had to be seen by a psychiatrist and had to comply with their treatment regime [primarily medications] determined by the psychiatrist.' Also, like many other housing programs of its time, Waterloo Regional Homes employed a 'levels system' within the concept of a residential continuum (Hogan arid Carling, 1992). That is, the group homes were designated as providing 'high' or 'medium' levels of support and the

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apartments 'low' levels of support. Residents could 'graduate' to independent living to normal housing or public housing in the community and still receive some staff support. Research conducted during the late 1980s and early 1990s demonstrated reduced rates of hospitalization and increased participation in instrumental roles and increased personal growth and independence for residents of group homes (McCarthy and Nelson, 1991, 1993; Nelson, Hall, and Walsh-Bowers, 1997) and supportive apartments (Nelson, Hall, and Walsh-Bowers, 1995; Nelson et al., 1997) provided by Waterloo Regional Homes. Despite these positive findings, the organization perceived the need to de-link housing and support as part of its change process. Vision and Values Guiding the Change Process

A philosophy of empowerment and community integration began to touch the agency in 1991. This involved a shift from staff 'caring for' and 'looking after' residents to more of a focus on each person's capacity and strengths. There was also an emphasis from staff making decisions for consumer/survivors towards consumer/survivor self-determination. A staff member made this point as follows: 'Self-determination for people is key. The emphasis is on wants and needs as determined by the individual not the service provider. Also, to establish conditions so that people can operate independently in the community. For example, to help people get outside supports and build people's social networks, following the principle of community integration.' Other factors that were mentioned as influencing changes within Waterloo Regional Homes included broader trends in community mental health, changes in ministry directions, and the desire for improvement. The organization came in contact with new ideas from various resource people and settings, including a leader in mental health reform from Vermont (Paul Carling), the authors, the Ontario Federation of Community Mental Health and Addiction Programs, as well as pending policy from a tri-ministerial committee. The values of Waterloo Regional Homes were clearly articulated in its mission statement and further emphasized in its goals, strategic plan objectives, and action plans. These values, which are consistent with those of the empowerment-community integration paradigm, include 'improving the quality of life of persons experiencing or recovering from mental health problems, respecting individual needs, rights and choices, and promoting, as equal community members, people's independence, self-awareness, empowerment and dignity.'

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Planning and Implementation of the Change Process

In early 1991 the need for a formal strategic planning process was recognized by the board of directors and the executive director. As one person stated, 'We needed to all get on the same page at the same time.' This process helped to influence a shift towards the empowerment-community integration approach. The organization first examined its values and philosophy and later determined changes in services. The long-range planning committee, comprised of a variety of stakeholders, acted as the driving force behind the strategic plan and guided the overall strategic planning process. This committee of the board involved an equal representation of consumer/survivors, management, front-line staff, and board members. The proposed review also incorporated several key elements of an organization development approach (e.g., Senge, 1990): (a) an educational approach utilizing values-based training for agency stakeholders, (b) a commitment to maximize stakeholder participation in all steps of the process, and (c) external consultants to assist with planning sessions. The process of change included six objectives: (1) clarifying the agency's mission and goals and comparing these with the philosophies implied or expressed in the literature and by various 'experts' in the field; (2) comparing the organization's new philosophy with the way services are actually being provided and identifying areas that require change; (3) comparing the organization's new philosophy with the ways the organization is structured, including board and staff responsibilities, and identifying areas that require change; (4) establishing shortterm and long-term objectives that would ensure that the organization meets its new mission; (5) developing action plans that provide direction for the achievement of short-term and long-term objectives; and (6) developing an evaluation strategy for the process and ongoing activity. Thus, the planning exercise placed a strong emphasis on the use of a values-based approach to change and the development of a shared vision and philosophy for the organization. Upon board approval of the above objectives, the Centre for Research and Education in Human Services was hired to facilitate the strategic planning process. Bringing this closer to home, John was the primary external consultant in the change process. In the second year, Joanna became involved and helped the organization to develop an evaluation process. A more complete description of the change process can be found in Lord et al. (1998). Over the next eighteen months, stakeholders were brought together

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to decide on issues, digest information, and make decisions. During a series of workshops, small groups (balanced for stakeholder representation) were formed to undertake the bulk of the work. After each small group work session, a plenary session was held to collectively discuss results and concerns and identify emerging themes. Thus, a transactive planning approach was employed (Friedmann, 1973) with a strong emphasis on stakeholder participation (Handy, 1995; Lincoln, 1985; Toulmin and Gustavsen, 1996). The plan identified strategies for changing the current service delivery system according to the values, mission, and goals of the organization. The constant emphasis on the stakeholder involvement ensured that consumer/survivors were well represented and that they had a chance to be leaders (Bullock, 1983; Folger and Konovsky, 1989; FosterFishman and Keys, 1997). The executive director described this process as follows: 'Consumers were a driving force behind it ... saying "it doesn't fit and this doesn't fit" ... and then we said, "well if the people that we are serving are not liking what we are doing that we need to start doing it another way."' The importance of translating values into action was well understood by people who participated in the strategic planning process. A manager described this issue as follows. 'It is a way you care for people. The implementation of your values. Do my actions reflect my values?' Finally, the planning process was identified as very democratic by managers: 'We made lists on the walls. We looked for agreements that the majority won their position. The group wanted it ... I didn't agree with what my group was putting on the wall, but it still went up.' And, 'Everything was distributed for comment from all those groups and we came together and revisions were made and sent back to see if that was OK from all those groups.' Implementing the extensive changes outlined in the strategic plan needed some impetus, and so an implementation committee was struck in November 1994. From the outset, this committee recognized the need to review and accept any recommendations from the evaluation committee, which had been set up at the same time. In this way, the changes outlined in the strategic plan were to be shaped by feedback from evaluation findings in order to ensure that they were connected with implementation decisions. Challenges and Struggles

Key informants noted several challenges encountered in the change

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process. One challenge, according to staff and managers, involved struggles of moving from value and goal identification to implementing changes: 'Some people had agreed to the principles but objected to the implementation stage.' Or, 'People had different ideas on how values should be implemented. Most people agreed on the goals but when it came to implementation, it fell apart. They couldn't see how they related to each other.' For some staff, the change was very personally challenging and often involved an identity change, which took time and effort. One staff person reflected on the kinds of personal changes staff had to work on: 'Do I really do what people want? I need to change the "care for" to "care with." I need to listen to people and not impose my values on them. I need to stop getting people to change to my way of thinking, letting people see that I am protective and worried but willing to work with what people want. I need to stand back.' Staff and managers repeatedly spoke of initial resistance among some staff, consumer/ survivors, and board members as a challenge: 'Some people really like challenges, whereas others don't. Therefore, they resist change.' Another person said: T thought the efforts that went into planning would have eased the implementation. Even with the planning there was much more resistance than I ever expected. I am still sorting out how to do things better to lessen the resistance, or just accept that there is going to be resistance.' Another challenge identified was internal conflict between family and consumer/survivors, as one person said: 'There was a clash between family and consumer. They had equally strong views about the caring for and respect.' There were also staff conflicts. Some staff members were worried about how many bosses they were going to have. There was always an undercurrent about whether they would still have a job. Also, there were mixed views of the pace of change. Some staff thought the pace was too fast, while others thought the pace was too slow: 'We tried to get so much feedback that we slowed the process. We didn't know how much consultation was enough before we took action.' There were also challenges in terms of staff responsibility, both in terms of workload and expectations and the skills of some staff. One manager made the following comment: 'We were asking them [staff] to use skills they haven't used and perhaps don't have.' Related to the changes in staff responsibility was the external factor of budget cuts: 'Some of it [resistance] may be related to budget cuts. Now jobs are

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changing as well as jobs may be cut. It is difficult to implement the vision and deal with cuts at the same time.' It is important to note that some conflict and resistance is a natural part of any organizational change process (Fullan and Stiegelbauer, 1991). What helped to overcome resistance was the highly participatory process that was used by Waterloo Regional Homes (Senge, 1990). The Creation of Alternative Settings Consumer/Survivor Self-Help and Mutual Aid Organizations: A Brief Review of the Literature While there has not been a great deal of research on alternative settings in community mental health, some consumer/survivors have written about their experiences in the creation of self-help and mutual aid organizations. Chamberlin (1978) and Weitz (1984) noted the tremendous feelings of solidarity that consumer/survivors experience when they come together in such organizations. Weitz (ibid.) argued that there is a 'power reversal' that occurs in consumer/survivor-controlled organizations, whereby members become active contributors, as opposed to being passive recipients of professional services. Moreover, many members of consumer/survivor self-help and mutual aid organizations see themselves as part of a social movement (Everett, 1997; Chamberlin, 1990). More recently, research has begun to examine the characteristics of people who participate in consumer/survivor alternative settings (Chamberlin, Rogers, and Ellison, 1996; Segal, Silverman, and Ternkin, 1995a) and participants' experiences of organizational empowerment (Segal, Silverman, and Temkin, 1995b). Trainor et al. (1997) described the development of the consumer/survivor initiatives and the impacts that participants report experiencing. There is, however, very little research on the organizational characteristics of consumer/survivor alternatives or how such alternatives grow and develop over time. Bargal (1992), who traced the development of two self-help organizations, one of which was operated by psychiatric consumer/survivors, found the following factors to be important for the development of the organizations: (a) leadership (which included articulating the values of the setting); (b) organizational processes (including setting goals and activities to reach those goals, deciding how to share the work, and creating a positive culture); and (c) relationships with the external environ-

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ment (which involves recruitment of members and mobilizing resources for the organization). Pranger's (1999) study of one consumer/survivor initiative, she found that the organization was plagued with conflict and power struggles among different factions, which inhibited the growth and development of the setting. In the next section we describe how the organizational story of WRSH is linked with stories of WRSH members (Rappaport, 1993, 1995) and how such an alternative grew and developed over time. We also discuss the uniqueness of WRSH, comparing its process of change with those of the two mainstream organizations. Waterloo Region Self Help: The New Kid on the Block The Early Years

WRSH was developed in 1991, when the Ontario government introduced the Consumer/Survivor Development Initiative (CSDI), a provincial consumer/survivor-driven administrative and development team based in Toronto. The CSDI provided financial support to thirty-six survivor initiatives across the province (Trainor et al., 1997). The three founding members of WRSH, Jeff Bast, Terry Dick, and Jack MacAulay, with support from CMHA, developed a proposal to begin a peer support organization in Kitchener-Waterloo. The initial proposal included a selfhelp component and an employment component. The self-help component was approved and, in September 1991, WRSH received funding. A board of directors and members were then recruited, and staff was hired. WRSH was founded as an alternative setting to traditional mental health services (Chamberlin, 1978, 1990) and originally housed within the CMHA. During this time WRSH conducted a needs assessment survey, developed policies and procedures, formulated a mission and mandate, sought incorporation, and initiated peer support programs. In 1992 WRSH found an independent location and moved out from CMHA. A Time of Rapid Growth and Expansion

Since its beginning in 1991 WRSH has experienced a rapid growth in the membership (from three founding members to approximately 260 people). From the start WRSH members emphasized the need for peer support programs, economic development, advocacy, education, and partnerships with other organizations. The expansion of peer support programs, increased involvement in the community, and continued

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efforts to improve the mental health system have set the pace for rapid change within the organization. Vision and Values Guiding the Change Process

In 1992 the organization developed a statement of values and beliefs. The strategic planning process included all staff and members of the organization and was facilitated by an external consultant, John. This statement of shared values and beliefs started to serve as a philosophical foundation for all the activities of the organization, and these are listed at the back of every issue of the organization's newsletter. A list of values includes peer support, self-determination, democracy, and social justice for all. The leadership provided by the former executive director, Anne Tschirhart, and the board of directors was noted as an important factor in the growth of WRSH. One of the major vehicles for translating the values of WRSH into practice was the development of a consumer/survivor memberdirected, organizational structure. All staff, volunteers, and members of the board of directors are people who have experienced mental health problems. Also, the organizational structure places the membership above the board of directors and the staff below that body. In other words, the traditional hierarchical management structure is inverted at WRSH; staff and board are accountable to the members. This type of organizational structure reflects the preference of alternative settings for horizontal arrangements that promote power sharing and member participation (Reinharz, 1984). As one staff member stated: 'WRSH not only inverted the hierarchical structure of the traditional organization, we took measures to flatten it as well. We extended membership status and privileges to staff, worked to create a view of volunteers as staff, and implemented practices of participatory management, such as allowing staff other than the executive director to participate in board meetings, etc. This was done very intentionally, by some of us anyway, as it was seen as necessary to the culture of the organization, an initiative emphasizing self-help /peer support /mutual aid.' Membership meetings are held on a regular basis, and the members are updated on events, allowed to question board members and to make some policy decisions. Also, the membership has input on financial and administrative concerns as well as making recommendations to the board and staff. All consumer/survivor members decide how active they want to be in the organization. The board members and staff are also WRSH members with full privileges. One member noted: 'The diversity

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of groups ... the collectives ... people coming and going ... the board reelected every year. It's the diversity that keeps our organizational structure different from ... traditional organizations.' Another said: 'Well, everyone is supposed to have equal say. Like, everyone's opinion counts as much as anybody else's.' One of the factors facilitating the development of WRSH is the fact that the organizational growth of consumer/survivor initiatives coincided with changes within the larger mental health community. Consumer/survivors have been given the opportunity to have a say in system reform. The decision to put finances into the hands of consumer/survivors (via CSDI) appears to acknowledge that the input of consumer/survivors is valued and that the system needs to change (Trainor et al., 1997). This shift reflects a broadened resource base in mental health care and acknowledges the legitimacy accorded to experiential knowledge (Trainor et al., 1999), which is consistent with the values of the empowerment-community integration paradigm. Challenges and Struggles

WRSH has experienced a number of challenges in establishing itself as an organization. One of the challenges, which WRSH members expressed, involved conflict between consumer/survivors and family representatives. This conflict has not necessarily been between WRSH members and their own family members, but between WRSH members and family representatives in the mental health community. Family representatives often suggest that because WRSH members who are participating in the community are not visibly disabled and are quite articulate, they do not represent consumer/survivors who are visibly disabled and have difficulty communicating. Some family members and service providers have challenged WRSH members as to how representative they are of the 'seriously mentally ill.' WRSH members responded that most of them have experienced periods where they have been categorized as 'low functioning,' 'seriously mentally ill,' and 'unemployable,' but have found their voice and recovered to a point where they can work with the mental health system. The executive director made the following comment about this issue: 'We find this quite offensive, which we are being singled out and that somebody is saying, "Well you don't represent 100% of the consumer/survivors in this area" or "You don't represent the real people in this area that we are talking about" ... We've got to try to validate and say, "Yes, we are consumer/survivors," and "Yes, we have gone through mental

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health issues," "Yes, we have been through the system," and "Yes, we do represent people." And we're having real difficulty with that.' Another WRSH leader referred to this as a clash of values between consumer/ survivors and family members: 'Survivors want to go one way and families want to go another. We want consent to treatment; they want forced intervention. We want advocacy; they want no rights, no freedoms. So we're going in opposite directions.' Geoff experienced this clash first-hand when he participated with consumer/survivors from WRSH and family members on CMHA's advocacy committee in the early 1990s. More energy was expended on defending the clashing perspectives than on finding common ground. This experience was frustrating and draining for everyone. An unfortunate consequence of this conflict is that in order to convince sceptical people (family members and others) that WRSH members do indeed represent consumer/survivors, WRSH members must establish their credibility by convincing others that their staff and members are 'mentally ill.' WRSH members find it humiliating to disclose a resume that includes how many times they have been hospitalized, medicated, involuntarily committed, had shock treatment, or been told by psychiatrists that they will never work or lead a 'normal' life. The worst part of this scenario is that, most often, if a member reveals his or her psychiatric history in order to support his or her consumer/survivor status, he or she is told that, in all likelihood, he or she was the victim of a misdiagnosis because he or she has recovered and recovery from mental illness is not possible. A member made the following comment: 'But the bravery and, you know, facing the stigma, to go out there and say ... takes a lot of courage. It doesn't take a lot of courage for family members to go, "look, victim, victim, victim. You know, poor us, poor us, poor us." And so, in a sense we are at a disadvantage here.' These conflicts illustrate the resistance and opposition encountered by organizations that operate from a different value base from traditional organizations (Reinharz, 1984). WRSH members have also expressed challenges working within the consumer/survivor-directed organizational structure. Good communication was one of them. A number of consumer/survivors explained this as follows: I've seen the problems that we have as ones of lines of communication, more than anything else ... it follows inevitably from having an extremely flexible membership, having staff that works under the direction of a board, but a board that is not basically involved in the day-to-day running.

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I come in one week and I don't know what is happening because it is changing so fast. If I miss a month of coming out, and I come out again, it's like we're doing this, we're doing this, we're doing this ... it's hard for one person to keep up with it all. There's a difference between organizational change and change within groups. The groups are kind of on their own, like each group is individual and works on its own. Whereas the organization is like an umbrella above everything ... that's where I've noticed the change work.

Other challenges that WRSH members experienced were (a) uncertainty of and dependency on Ministry of Health funding and (b) not being seen as having the same value as professional organizations. Summary and Reflections Our sense is that it took the right settings and the right leaders to create the right organizational change in Waterloo Region. The broader changes in government policy and planning and the emphasis on consumer/survivor participation in mental health policy and practice helped to create an opportunity for transformation in our mental health community. The two mainstream organizations today look and feel significantly different from what they did a decade ago. Common Processes Used to Create Organizational Change

There were three major elements in common to the change processes of the three organizations, all of which are consistent with the notion of a learning organization. First, all three used a value clarification process not as an end in itself, but as a foundation from which to plan and implement organizational change (Berquist, 1993; Block, 1993; Kluger and Baker, 1994). Learning organization theory posits that it is important to establish a shared vision and to constantly examine how the dayto-day life of the organization is consistent with the vision (Racino, 1991; Senge, 1990). Working from values and principles became a central way of working in all three organizations. Second, all three used a highly participatory approach to change (Handy, 1995; Lincoln, 1985; Toulmin and Gustavsen, 1996); planning was transactive in nature and involved the use of small groups and action-oriented committees (Friedmann, 1973). Moreover, the planning

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groups involved different types of stakeholders, including board members, service providers, and service users, thus helping to bridge these different organizational domains (Kouzes and Micos, 1979). It is particularly noteworthy that this was the first time in the region that large numbers of consumer/survivors or consumer/survivors as a group played an active role in any mental health organization. These empowerment strategies are congruent with current innovations in organizational change (Bond and Keys, 1993; Shera and Page, 1995). The third common element in each of the three settings was the challenges that were experienced in shifting the value base of the organizations. Conflict and resistance were experienced at the personal, organizational, and community levels. The experience of transformation was uncomfortable for the different stakeholders. While participatory methods are often thought of as ways to build consensus and reduce conflict within organizations (Senge, 1990), it may be more likely that participatory processes actually bring conflicts out into the open where they can be dealt with more effectively. Organizations in which conflicts are hidden or not talked about may appear on the surface to be harmonious organizations. On the other hand, organizations that consciously strive to bring conflicts into the open and to resolve them may appear on the surface to be divided, but, in fact, they are undertaking a healthy process of conflict resolution. Moreover, conflict may be a natural part of shifting towards a new way of working, such as that suggested by the empowerment-community integration paradigm. Also, providing staff with training and ongoing mentoring were mentioned as ways to help staff to make shifts in their roles. Dealing with resistance from sources external to the agency was seen as a slow process of education about the values and practices of the empowerment-community integration paradigm. Unique Processes Used to Create Organizational Change As well, there were unique aspects of the change processes, as each of the three organizations followed its own pathway towards change. For example, the three organizations varied in their use of external and internal change agents, which is fairly typical in organization development (Schmuck and Miles, 1971). The primary change agent at CMHA was the newly hired executive director, who brought in new ideas and new resource people from the outside, as well as developing staff, board, and consumer/survivor leadership. Waterloo Regional Homes con-

Table 6.1. The process of change within the three community mental health organizations Community mental health organizations Change process Before the beginning

Pathways towards change Vision and values

Planning and implementation

CMHA

Waterloo Regional Homes

WRSH

• Small agency with volunteer services in the 1960s and 1970s • Rapid growth in 1980s • Distinct programs based on rehabilitation philosophy • Lack of overall vision

• Began with 2 group homes in the early 1980s • Rapid growth in late 1980s • Housing linked with support following a rehabilitation approach • Vision to create a range of affordable housing

• Growth of psychiatric consumer/ survivor movement in Ontario during the 1980s • CSDI in 1990 • Vision to create a network of consumer/survivor-controlled, peer support alternatives to mainstream mental health services

• Values of the emerging paradigm • Focus on developing a common vision

• Values of the emerging paradigm • Focus on developing a common vision

• Values of the emerging paradigm • Development of statement of values and beliefs

• Participatory planning process • Leadership of new executive director • Focus on translating values into practice • Use of external resource people • Development of board into new governance structure • Challenges to staff • Conflict

• Participatory planning process • Series of workshops for all stakeholders • Implementation and evaluation committees involving all stakeholders • Leadership of executive director • Use of external consultants • Focus on translating values into practice • Challenges to staff • Conflict

• Member-directed organizational change • Leadership of executive director • Focus on responding to member initiatives and needs • Challenges of communication and establishing credibility • Conflict with family organizations and some mental health professionals

CSDI, Consumer/Survivor Development Initiative

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traded with external consultants to facilitate its change process. These external consultants, John and Joanna, worked with stakeholders within the organization to develop its internal capacities to create change (see Lord et al., 1998). Internal leadership played a central role in each of these change initiatives (Block, 1993; Senge, 1990). WRSH clarified its value base internally based on high consumer/survivor participation facilitated occasionally by an external consultant, John. Although the change process within the two mainstream mental health organizations reflects an organization development approach, the change at WRSH was different in two major respects. First, WRSH was a brand-new organization that was built from scratch. Second, WRSH was a consumer/survivor, member-driven organization, not a professional agency. Thus, the type of change that was occurring at WRSH involved the creation of an alternative setting (Sarason, 1972) and represented organizational growth more than organizational change. The findings regarding the pathways towards change taken by the three organizations are summarized in Table 6.1. The process of change in these mental health organizations resulted in many changes in services and supports and in the way services are in these organizations. These change outcomes are the focus of our next chapter.

Chapter Seven

Organizational Change: Outcomes in the Three Community Mental Health Organizations

It is not enough to just have values listed, there is a real commitment to ... making them live and making them work. Manager When I moved into the group home, the coordinator was there all day. When the changes started, the coordinator was hardly there. She was in the community. In the beginning, I thought, 'If I won't live in a group home, how will I get my needs met ? Do I have to go out into the community or can I stay where I am?' Now, I know that my support worker will follow me wherever I live. I feel safe and more independent. Consumer/Survivor

These statements not only illustrate particular changes that occurred in the three organizations, but also a more general transformation of the culture of these organizations. The purpose of this chapter is to describe the results of the process of change embarked on by the three Kitchener-Waterloo mental health organizations in the 1990s. The questions that we were interested in answering were: (a) How do these organizations look different now compared with before they initiated the change process? (b) What factors facilitated and inhibited the organizational changes that were experienced? To answer these questions, we used focus group data gathered from different stakeholders in each setting during phase 2 of the research, as well as field notes gathered through participant observation of organizational meetings and events in phase 3. In this chapter we describe participants' perceptions of changes and factors that facilitated or inhibited change. We are not certain of the

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extent to which these changes were the direct result of the change processes described earlier. However, by capturing stakeholder experiences of changes, we can sometimes make links to implementation processes. It should be noted that attributing changes to specific interventions was not the purpose of this study. This chapter ends with reflections and interpretations of organizational changes related to the values of the empowerment-community integration paradigm. Previous Research on the Outcomes of Organizational Change There has been very little research on the outcomes of organizational change in community mental health settings (Bargal and Schmid, 1992). The only study of organizational change towards the values of the empowerment-community integration paradigm in community mental health reported on the change process within a housing organization for psychiatric consumer/survivors (Pyke and Lowe, 1996). Outcomes of the change process included (a) more equal relationships between staff and consumer/survivors and (b) changes in the way services and supports were provided that reflected the values of the empowerment-community integration paradigm. Racino (1991) conducted a study of thirty-one organizations serving people with developmental challenges, in an attempt to understand the common characteristics of innovative organizations that promote community integration. She found that the common characteristics of such organizations included (a) a clear sense of the organizing values or philosophy that guide day-to-day work as well as the organization as a whole; (b) a spirit of self-reflection, learning, and openness to change; (c) mutually respectful relationships among people within the organization; (d) a focus on empowering, valuing, and supporting staff; (e) a participatory management style; (f) committed and caring leadership; (g) a focus on putting the needs of service users above everything else; (h) flexible, portable, and individualized services for service users; and (i) a sensitivity to social injustice (particularly as experienced by service users). In a recent study of a change initiative in a large umbrella organization of services for people with developmental challenges, Foster-Fishman and Keys (1997) found several factors that limited changes in employee empowerment, including a demand-ridden environment, authoritarian leadership, little time allocated for participation, and poor communication and limited interaction between the different sites and domains of the organization.

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Salzer (1997) argued that consumer/survivors should participate in and have control of decision-making in mental health organizations. He hypothesized that changes in the way services are provided (more consumer/survivor-controlled services) and the relationships between service providers and the people they support (more equitable relationships) are necessary to promote consumer/survivor empowerment. Similarly, Chamberlin (1997) asserted that empowering organizations are those in which consumer/survivors have decision-making power, information, and resources, as well as a range of services from which to make choices. Unfortunately, there has yet to be any research regarding these assertions. Little research has been conducted on the organizational characteristics of consumer/survivor alternatives or how such alternatives grow and develop over time. In a case study of three organizations, including one state-wide consumer/survivor organization (with numerous branches throughout the state), Maton and Salem (1995) found four characteristics that they believe reflect empowering organizational processes in this alternative setting: (1) a belief system that inspires growth, is strengthsbased, and is focused beyond the self; (2) a role structure that provides members with a variety of ways to participate meaningfully in the organization; (3) a peer support system that instils a sense of community; and (4) leadership that is inspirational, talented, shared, and committed. Since our research showed that many of the organizational changes were similar in all three organizations, we do not provide a separate view of each agency, as we did in the previous chapter. Rather, we present and discuss the outcomes across settings, providing examples of changes within each of the organizations. The unique nature of WRSH as an alternative setting is emphasized by additional themes related to this organization only. Organizational Change Outcomes Changes in the Values and Philosophical Foundations of the Organizations

One overarching change was a clear shift in the values and philosophical foundation of the organizations, with a specific emphasis on the values of the empowerment-community integration paradigm. Change in the value base of an organization has been identified as a key factor in organizational change theory (Bergquist, 1993; Block, 1993; Kluger and Baker, 1994; Senge, 1990).

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For example, at the Canadian Mental Health Association (CMHA) participants talked about 'constant,' 'ongoing,' 'dramatic,' change with 'no status quo' in the development of a valued-based philosophical foundation that directs the work of the organization. A staff person commented that 'it is a total shift, from not even participating to being a leader in looking at innovative kinds of supports.' Staff passionately emphasized that in order for the values to be meaningful, they needed to be translated into the everyday practice of the organization. At Waterloo Regional Homes staff developed service principles that reflected the values of self-determination, empowerment, and community integration. These principles provided staff with practical guidelines to implement the values of the empowerment-community integration paradigm. The implementation process reflected a commitment to translate values into everyday practice, which reflects a major theme of the learning organization (Senge, 1990). While Waterloo Region Self Help's (WRSH) basic values have not changed (e.g., peer support, self-determination, democracy, social justice), many new values have been added and some have been reworded. What is most striking about the values at WRSH is the way members feel ownership of the values and the way values are played out in the relationships within the organization. This is similar to what has been reported in the literature on alternative settings (Reinharz, 1984). The new values centred on the belief that people who receive supports are in the best position to determine the kinds of supports that they need. Participants talked about consumer/survivors being 'masters of their own destiny,' having 'capacities and potential,' believing that improvements in the quality of life of an individual are possible, resulting in more 'respect' (Shera and Page, 1995). One program manager reflected on this as follows: 'What you do ends up looking entirely different at the end of the day, even though it might be just a subtle shift in that assumption from saying a person won't change versus a person can change.' Another said: 'We used to think that people didn't have the ability to move, that they needed this kind of support. And now we think in terms of ability and look at people's strengths, that they can move on.' It is this new value base that served as the foundation for planning, implementing, and evaluating services at CMHA, Waterloo Regional Homes, and at WRSH. As one staff member commented: Tf you want to do something new in the service, it's where does that fit into the vision and the values?'

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Increased Consumer/Survivor Participation in the Organizations

Other changes reflected the value of stakeholder participation and empowerment. As we have seen in the previous chapter, each setting used a highly participatory process to create change (Handy, 1995; Lincoln, 1985; Toulmin and Gustavsen, 1996), which resulted in increased consumer/survivor participation within the organizations (Racino, 1991). In the two mainstream settings, a variety of stakeholders (i.e., consumer/survivors, staff, management, family members, and community members) were included, while in the alternative consumer/survivor setting, the emphasis was on consumer/survivor participation. As participation was valued, some stakeholders used this opportunity to step up and take leadership roles and contribute to the development of each of the settings (Maton and Salem, 1995). Increased participation of consumer/survivors throughout the mainstream organizations was demonstrated by the active involvement of consumer/survivors on the board of directors (roughly half the members in both organizations are consumer/survivors), on committees, and as staff members. For example, consumer/survivors are now routinely involved in hiring committees and decision-making activities. There is the CMHA advisory council to the executive director and residents' council in Waterloo Regional Homes, both composed of consumer/survivors. There is an advisory committee at Waterloo Regional Homes where consumer/survivors have influence in decision-making about issues internal to the organization, and there is a CMHA suggestion box that consumer/survivors can use to make input. Participants from all focus groups at WRSH emphasized the dramatic increase in consumer/survivor involvement within the organization as being the most noticeable change at WRSH. As a self-help and mutual aid organization, run entirely by consumer/survivors, any growth in the organization has been dependent on consumer/survivors taking ownership of and contributing to the organization. Not only was there an increase in the number of members, but the number of staff (all consumer/survivors) increased and the number of consumer/survivors representing WRSH in the community also increased. Finally, WRSH underwent a process of clarifying the roles of consumer/survivor involvement as members of the organization and as members of their board of directors. One manager reflected: 'Because we are a memberdriven organization, it was kind of a long process of stumbling around to figure out exactly what that meant. Does that mean that our members

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direct the board, or does that mean that our members take responsibility for this part and the board takes responsibility for that part? So, we've kind of gone through a visioning where we've clarified that.' Contributing to the organization was seen by members as an opportunity to explore their capabilities and use their skills and talents to benefit others: 'Being able to focus on the positive and all of our strengths rather than our weaknesses, just the fact that we can take something; a nurturing ability, a craft ability, a talking ability or whatever ... we can take one of our abilities and use it... and get positive feedback that we are using it, rather than another side of the coin.' WRSH members have also found that meeting other consumer/survivors can be a good experience. When a member meets someone with a mental health problem who has a successful career (i.e., a teacher), he or she feels inspired. Such encounters provide role-modelling and contribute to the awareness that a person can have a mental illness and yet be successful. One person made the following comment in this regard: 'I have felt that I have changed spiritually ... I am leaning in another direction to work with people in prison ... I am moving sideways in a direction that I never could have gone if I hadn't first come here ... this has been a block, a stepping-stone, to go sideways ... And so the basis I see in our statement of values and beliefs is, for me, very spiritual. I really feel it is deep and spiritual.' Consumer/survivor participation reflects a key theme of the empowerment-community integration paradigm and new approaches to organization development and empowerment (Chamberlin, 1997; Salzer, 1997; Shera and Page, 1995; Vandergang, 1996). One key informant noted that 'the needs of survivors are at the forefront' and that consumer/survivor participation now permeates the organizations. A More Participatory and Inclusive Management Style

Although CMHA has roughly twenty-five full-time equivalent staff, several different program areas, and a somewhat hierarchical organizational structure (with several 'middle managers'), the management style was described by participants as participatory and inclusive. A long-time staff member emphasized: 'I don't think it's the same organization at all. Management style has dramatically changed.' Not only are consumer/survivors more actively involved in the organization, but staff and community members also participate in the management of the agency. For example, the executive director has formed

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a broad-based management committee to encourage stakeholder participation in agency management, which is consistent with current emphases in organization development (Handy, 1995; Lincoln, 1985; Toulmin and Gustavsen, 1996). The following excerpt from our field notes illustrates the role of this committee: Fourteen people were present at the meeting. Most of the committee members were staff and consumer/survivors with the exception of two people who were volunteers on the committee ... After the meeting, the executive director mentioned that his intent in forming this committee was to expand the ownership of the organization. Previously the management committee consisted of only four managers. Now it not only includes the other selected staff, but also some community members ... At this meeting there was participation from almost everybody on the committee.' At Waterloo Regional Homes staff are now involved at senior levels of management and actively participate in organizational decision-making, training activities, and staff retreats. There appears to be a continual emphasis on staff arid organizational change and renewal (Senge, 1990). Consider the following observation from our field notes: 'It has been clear that there is a transfer of power within this organization. People who typically had the authority and power [management] shifted it to the staff.' An example of this process of distributing power throughout Waterloo Regional Homes was the development of teams for service planning and implementation (Block, 1993). A team consists of two support coordinators and several practical support workers and relief staff, who meet regularly to decide on schedules, solve problems and issues that have arisen, and plan how to implement service principles. The two senior management staff act as resource people to the teams. At WRSH most common among focus group participants was a recognition that the organization is willing to involve consumer/survivors in meaningful ways (Maton and Salem, 1995). This involvement includes giving the whole membership the opportunity to determine the focus of the organization. Members reflected on this process. One said: 'The members decide on what direction we take, and not some focus group within the organization. It always came back to the membership.' Another explained: 'Well, everyone is supposed to have equal say. Like, everyone's opinion counts as much as anybody else's.' WRSH has also encouraged meaningful consumer/survivor involvement by providing opportunities for people to take on leadership roles within the organization (Bullock, 1983; Folger and Konovsky, 1989;

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Foster-Fishman and Keys, 1997). A program coordinator made the following comment: 'We have more people now that are available to, and have an interest in facilitating groups ... Whereas initially they may have come into the organization looking for support, we seem to have a larger base of people that are willing to take a leadership role.' Being a consumer/survivor-driven organization, WRSH was able to choose how non-consumers can be involved in organization. WRSH has chosen to have only consumer/survivors holding the primary policy positions within the organization. A WRSH staff member said: 'It would be much easier to have some community members on our board of directors, but we've said, "No, we want consumers on the board of directors."' A final example of WRSH's willingness to meaningfully involve consumer/survivors was expressed by one volunteer. This person talked about the fact that her involvement was respected as being valuable and worthwhile: 'Sure we have an executive director and we go down the scale and we have volunteers, but we work as a team and I find as a consumer/survivor I'm always more comfortable working in this kind of environment because I don't feel I'm always down at the bottom of the scale and that what I'm saying is not going to count. We're very much a team here and it's very comfortable ... There isn't that division [between staff and volunteers].' Changes in Types of Services Provided

The types of services provided and the way services are provided have changed in a form that reflects a greater emphasis on community support and integration. In each organization there has been a new emphasis on informal and peer support. In the two mainstream settings services were shifted from structured program models to flexible, individualized supports (Racino, 1991; Trainor et al., 1999), making services more responsive and tailored to the unique needs of individuals (Racino, 1991). The service principles and the key role of support coordinators within Waterloo Regional Homes reflect the move to an empowerment-oriented, individualized approach. CMHA closed group-oriented programs, such as the clubhouse and social-recreational program. Whereas in the past a program might provide a recreational activity for consumer/survivors, now individual consumer/survivors are encouraged to pursue recreational activities in which they are interested through typical settings in the community. As a staff member stated, 'We used to have picnics and people would sit

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around ... and you would just do everything for them.' There is now a strong emphasis on community integration, while avoiding group-oriented, segregated services (Carling, 1995). Group-oriented programs have been replaced by individualized services with a personal planning approach (based on discovery planning and crisis planning). Participants talked about the range of new services and supports at each organization. New services that CMHA offers include the Access Centre (with technical resources, information, referral services, and support services), support coordination, supported employment and education, a self-help resource centre, a court diversion program, and crisis outreach response for one geographic community in the region (Cambridge and North Dumfries). Also, the agency has worked cooperatively with Conestoga College to develop a diploma program for mental health workers. All of these new services are designed to promote consumer/ survivors' access to valued resources, which we have identified earlier as a key theme of the empowerment-community integration paradigm. Participants appreciated this focus. One said: 'Having the library downstairs in the Access Centre is amazing. Like the Access Centre there is fantastic' (volunteer). Another said: '[Supported employment] ... is just excellent because I have seen some of the people who have been so responsive and have come from kind of a shell to becoming quite articulate' (family member). Participants talked about consumer/survivors having increased choice and control over services, which is consistent with the value of empowerment (Shera and Page, 1995). A staff member made the following comment about this change: 'It is kind of scary if you were always taken care of and now you are told you can take care of yourself. It is better because you know that you have a choice.' The main changes at Waterloo Regional Homes include de-linked housing and support. Consumer/survivors are now in the position of choosing whether they want housing and/or support from the organization. Support workers are no longer linked to a particular housing unit. This allows support coordination to be differentiated from landlord responsibilities. Finally, specific housing sites are no longer categorized as to the level of support provided. Rather the level of support is determined by the individual consumer/survivor. This change is similar to that reported by Pyke and Lowe (1996). Individualized support is now based on strengths and need. There is increased access to practical support and twenty-four-hour crisis support. There are also now more flexible criteria for receiving support. Consumer/survivors appreciated that

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they did not need to have an agency support worker or a psychiatrist in order to live in Waterloo Regional Homes: 'Previously the practical support ... was not available to anyone in the community because we just couldn't do it. It was only offered to persons living in group living, whereas now that is offered to anyone. So that definitely has changed' (staff member). WRSH has expanded the number of program activities and peer support groups. Related to this growth in size is an increase in the number and types of programs and activities available to members. Starting with only one support group, WRSH now offers 'a network of peer support groups,' 'four or five peer-related activities,' and it has recently branched out into economic development initiatives. There is also a monthly newsletter. In the past seven years, WRSH has rapidly increased its services as a response to the demands of its consumer/survivor membership. Consumer/survivors also talked about the benefit of new services and supports such as self-esteem workshops and access to a loan fund. One family member observed that the staff of one of the mainstream agencies were now offering 'practical' types of supports, such as life skills. Some of the new and innovative services at the three organizations emphasize access to valued resources, such as employment and housing. To address the issue of consumer/survivors' needs for employment and income, CMHA started a supported employment/education service (Bond et al., 1997). WRSH developed an entrepreneurship program, and it has recently received a grant to develop a loan fund to help consumer/survivors start small businesses. Waterloo Regional Homes has reallocated staff to assist consumer/survivors in finding, getting, and keeping normal housing in the community. All three organizations have hired consumer/survivors to work in staff positions. In these ways, each organization has made beginning attempts to address the vital issue of access to valued resources. Changes in Approach to Providing Services

New approaches to providing supports and services are another major organizational change experienced by the three organizations. Participants across all stakeholder groups talked about the change in how services are delivered. In the past there were several different programs for people with mental health issues that have been eliminated and replaced with a new approach of person-centred planning, which is an

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innovation that has been borrowed from the field of developmental disabilities (Racino, 1991). Rather than trying to fit consumer/survivors into structured programs, as was done in the past, the current approach begins with the question, 'What are your strengths and needs?' Staff then support the individual in meeting his or her goals, with the assistance of the person's social network. Services are now 'individualized,' 'portable,' 'flexible,1 and 'geared towards what the consumer/survivor wants in his or her life.' Consumer/survivors are encouraged to have more 'independence' and are treated as an integrated whole, 'as a total picture rather than, we do this piece and that piece.' For example, at CMHA, the aftercare case management program became the community support coordination service with a personal planning process focused on the person's whole life in context. Whereas in the past consumer/survivors were 'frequently treated like children,' staff, consumer/survivors, and family members talked about taking a less paternalistic, more respectful approach in service delivery. One consumer/survivor reflected: 'What's helped is the respect and valuing of the ability of the identified consumer/survivor ... There is a mutual respect as human beings and then the rest falls into place.' Staff members use a more holistic approach to service delivery and provide a more practical type of support that is requested by the people they support. There is also increased access to staff support (e.g., twentyfour-hour crisis support at Waterloo Regional Homes). One family member made the following statement: 'Another change I think is that they are more and more holistic in their approach. You know, they look at all the aspects - nutrition. Is he eating properly? You know. Hygiene, medication, and so forth. And that too is very necessary because they tend to neglect themselves.' A positive change resulting from the new approach to services was greater continuity in staff support for consumer/survivors. At WRSH there have also been improved relationships among members. Both staff and member focus groups talked about the depth of relationships among consumer/survivors that have evolved directly or indirectly because of the organization. Participants talked about 'better fellowship' and stronger, expanded friendships - a type of solidarity that has been experienced in other consumer/survivor alternatives (Chamberlin, 1978; Weitz, 1984). A manager stated: 'A lot of the changes are sort of on the side lines and not really part of the organizational change. And that's just a matter of the amount of friendships that are being

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developed, and the amount of networking that goes on, and activities happening outside, that ... people wouldn't have found their way to each other without having that.' Staff mentioned that WRSH has developed partnerships with nonconsumer/survivor groups and individuals. Non-consumer/survivors are invited to many of WRSH's social and recreational activities, and WRSH has also attempted to link with other disability groups. Participants also noted some conflict and growing pains, but pointed out that these experiences have led to changes that have strengthened the organization (e.g., changes in by-laws and policies). These types of organizational hassles are not uncommon in either alternative settings (Reinharz, 1984) or mainstream settings (e.g., Bond and Keys, 1993). WRSH informants mentioned two main roles that are available for them in making changes in the community: advocacy and education. Advocacy and political action are part and parcel of many self-help and mutual aid organizations (Humphreys and Rappaport, 1994) and other alternative settings (Reinharz, 1984). In some communities, across the province, professional bodies and CSDI-funded projects have not had a good relationship. According to the following comments, WRSH members believe they have been fortunate in this community because, for the most part, they have found support and acceptance from some community mental health agencies: 'As members of Waterloo Region Self Help, we sit on committees with other organizations, the hospital, etc., where we can have strong input, not only as personal consumer/survivors, but as members of a consumer/survivor group.' And, 'One of the things that the community has got is a lot of free expertise. A lot of people sitting on committees and boards, participating, helping out, volunteering.' Changes in Staff Roles, Values, and Practices

With the new values have come new roles for staff. The relationships between staff and the people they support have become more respectful and equal (Constantino and Nelson, 1995; MacGillivary and Nelson, 1998). In taking this new approach, the boundaries between staff and consumer/survivors are often broken down, resulting in greater equality and friendships (MacGillivary and Nelson, 1998; Salzer, 1997). One consumer/survivor made the following statement: 'Some staff have disclosed things to me about themselves, if they've had some kind of issue, and this has been really helpful for me.' A manager stated: T don't think there's a coordinator you'll talk to that will believe that there's a differ-

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ence [between staff and consumer/survivors] in their heart of hearts anymore. And that's a really big, fundamental change.' At CMHA, from the perspective of consumer/survivors, staff have become more responsive and personal: 'They now give attention, take time for consumers'; 'they came to my house'; and 'they helped with everyday tasks.' Also, staff have become more accountable to consumer/survivors, and consumer/survivors exert more power over the type of support that they want: 'You can decide when and how many times you want to see them, which gives a much better relationship' (consumer/survivor). Or, 'I think it's also helped the staff to be more accountable to consumers, as well. They are responsible for helping consumers to follow through on what they say they want to do. So, in a sense, they're really accountable to the consumer' (manager). Staff and management talked at length about the impact these changes had on their own lives in terms of commitment and personal boundaries. Many of the statements from managers below indicate profound changes in values and personal identity: 'This isn't my job, this is my life.' Or, 'I don't think I've lost my boundaries so much as I've found my vision.' Participants also noted staff members vary in terms of the degree to which they have adopted the new values of the organization. One manager made the following comment: 'Some of the staff were unable to accept the vision. New staff members were more readily able to accept it.' Another said: 'Some staff members are very respectful and in more servant roles than others ... They ask people how the services can be helpful in their life and have the person direct those things that support ... How can I [staff] help you [consumer/survivor]?' Staff noted the increased stress that they were under as a result of their changed responsibilities. These role changes reflect the value of reducing the power imbalance, which is a theme of the empowermentcommunity integration paradigm. Some family members talked about having less stress because of the ongoing support of the support worker who can listen to the consumer/survivor and offer 'practical' support, such as life skills. Also, since staff are no longer tied to specific settings, they are able to support more people in a variety of normal housing situations in the community. Thus, the overall number of people receiving supports has increased. A staff member stated: 'We are providing support to many more consumers now than ever before, expanding the case management into the community.' Staff voiced some concern about the expan-

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sion of services as translating into less intensive support to individual consumer/survivors. At WRSH both staff and members of the consumer/survivor focus group spoke of the equality between staff and members. Staff are consumer/survivors with similar experiences, not like medical professionals who see themselves as 'above' consumer/survivors. There is a certain level of comfort and inspiration for consumer/survivors seeing other consumer/survivors take on leadership roles within the organization, which we mentioned earlier. WRSH's unique organizational structure allows staff to be voting members of the organization as well. Overall, the most significant change reflecting a paradigm change is the change in the role the staff play in the person's life. The attitudinal shift involving the reduction of professional barriers that exist between a service provider and the person served models a relationship that could be adopted by any community member in order to assist in a more inclusive community. Staff also focus on providing opportunities to empower the person as well as acting as mentors for the individuals they support. Factors Facilitating and Inhibiting Organizational Change Several different factors were identified as helping and impeding the implementation of organizational changes at the three agencies. As in the previous section, we summarize findings across organizations. Facilitating Factors

There were three main factors that facilitated change at CMHA, Waterloo Regional Homes, and WRSH: (1) organizational readiness, (2) leadership, and (3) resource people and tools. Organizational Readiness

One of the key factors in facilitating organizational change was organizational readiness. Organizations that are open to change are far more likely to change than organizations that have to change against their wishes (Cherniss, 1978; Fullan and Stiegelbauer, 1991). All three organizations were ready for change. This readiness came from different stakeholder groups: management and leaders who planned the change according to the values of the empowerment-community integration

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paradigm and staff and consumer/survivors who developed service principles that provided practical guidelines to implement the values of the new paradigm. One manager made the following comment: 'Readiness, coming from both sides. You needed people thinking about the issues. That came from the top down. Then we pulled people together and it came from bottom up.' Staff also talked about the 'desire to provide the best services to the people we support' and having a 'very strong commitment to doing the work differently.' Many participants saw the shift towards the empowerment-community integration paradigm as a natural evolution. One staff reflected on a fact that both staff and consumer/survivors had come to a point where they were ready for these changes to occur: 'It's almost like an evolutionary process that we are going through. The agency is just following an evolutionary path right now, following the leaders.' Leadership

Another factor facilitating the organizational change was leadership. Effective leadership at the level of executive directors and boards of directors facilitated organizational changes at CMHA, Waterloo Regional Homes, and WRSH and was supplemented by leadership at the level of staff and consumer/survivors. The leadership style that was employed in the three settings was one that involved sharing power and encouraging organizational members to participate in the change process. This leadership style focused on providing opportunities to learn and to create a culture in which people contribute to both the goals of the organization and their own development. Effective leadership has been identified in previous research as an important facilitator of organizational change (Block, 1993; Senge, 1990; Weatley, 1992). Other people internal to the organization provided leadership as well. Key informants stated that consumer/survivors started to take a leadership role in the strategic planning activities. Thus, shared leadership was an important facilitator of the change process (Bullock, 1983; Folger and Konovsky, 1989; Foster-Fishman and Keys, 1997). Resource People and Tools

Resource peoplewho shared the value base of the empowerment-community integration paradigm, including external consultants, were also seen as important for facilitating change (Schmuck and Miles, 1971). For example, at CMFIA one person was hired to develop a manual on

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'personal planning,' while another was contracted to develop a position paper on 'supported employment.' Another example is that Paul Carling, a leader in the empowerment-community integration paradigm in community mental health, was used as a consultant and some staff travelled to workshops and training events related to the empowermentcommunity integration paradigm. Also, the roles John and Joanna played in the strategic planning, implementation, and evaluation processes at Waterloo Regional Homes and WRSH were instrumental. The role of external change agents and the importance of good facilitation skills are factors that have been identified as helpful for organizational change (Schmuck and Miles, 1971). The use of teaching tools was a related factor. The previously mentioned manual on 'personal planning' developed for CMHA was a tool that provided staff with guidelines as to how to implement the empowerment-community integration paradigm in supporting people with significant challenges. According to a manager, such tools made abstract concepts practical, concrete, and useful: The manual [on personal planning] was a teaching tool to the people who were using it. In a broader implementation with other organizations the personal planning model was key. Now when other organizations have an interest in personal planning, they can call us.' Other Facilitating Factors Additional factors that were stated as facilitating the implementation of change were (a) people's commitment to change, (b) organization's willingness to respect and involve consumer/survivors, (c) a climate of ongoing questioning and reflection upon the values and practices of the organization, (d) the growth of the consumer/survivor movement, and finally (e) increases in government funding provided the organizations with resources to expand in the directions they desired. At WRSH there were two additional factors identified that helped to facilitate changes within the organization: (1) an increased profile in the community and (2) a comfortableness of consumer/survivors regarding their mental health struggles. WRSH's profile increased in respect and legitimacy from the community and professionals, and other mental health organizations helped in tangible and practical ways, such as with advice in dealing with the Ministry of Health or the DHC. Being more comfortable acknowledging their mental health struggles helped people to participate and to speak out more about issues that affect them and fellow consumer/survivors.

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Inhibiting Factors

The major factors that inhibited changes in both mainstream organizations and at WRSH were (a) inadequate government funding and (b) the resistance of different stakeholders, both within and outside of the organizations. Inadequate Funding

A lack of funding was mentioned by all stakeholders as preventing the implementation of some ideas for change. A staff member said: 'Well, I think to some extent again we go back to the lack of additional resources. Sometimes when you're making changes and you want to provide a better service, more resources are needed.' According to one family member: 'The lack of resources and funding and that just has to be underlined because there hasn't been adequate funding and it looks like there won't be.' Resistance of Different Stakeholders

Resistance from many different stakeholders (some staff, consumer/ survivors, family members, and other agencies), because of the inherent confusion, uncertainty, and fear that are experienced when there is change, was another inhibiting factor (Senge, 1990). For example, staff and consumer/survivors at Waterloo Regional Homes reported that fear of losing support hindered the pace of change within the organization. Some consumer/survivors and family members feared that consumer/survivors would lose support when they left Waterloo Regional Homes' accommodations. Funders did not provide support for the change processes either. According to one manager at CMHA: 'Government was an inhibitor. They had a consultant, but he couldn't travel. The DHC process is still a non-entity process ... Ontario Division was not providing a lot of leadership. National did some work, but they had no consultants. We were on our own.' Other Factors

Additionally, forces in the community-at-large were also noted as limiting the amount of change. One consumer/survivor commented that the traditional medical profession is changing at a pace that is slow and restraining Waterloo Regional Homes from changing more quickly. Another factor noted at CMHA was the skill set and experience of

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some staff. A manager reflected: 'One of the most difficult things we had to deal with was a lot of people had jobs they were not qualified to do, due to skills not credentials or education ... This is not surprising, because in the paradigm shift the role of staff does change.' With regard to the factors that hindered change at WRSH, there were two main themes: (1) limited resources and (2) the confusion regarding the new approach to supports. WRSH has been limited in its growth by the small amounts of funding that it receives. Also, the approach of 'people helping themselves' is quite the opposite of 'providing help' and was confusing to many people who expected the organization to work in traditional ways such as a drop-in centre. Summary and Reflections Summary of Changes towards the Values of the Empowerment-Community Integration Paradigm In this section we reflect on issues related to organizational changes that were associated with a shift in organizational values towards the empowerment-community integration paradigm. Our study showed that there was a partial paradigm shift in the three community mental health organizations. The most changes were reported for the value of stakeholder participation and empowerment; the least change was found regarding the value of social justice and access to valued resources; and the degree of change towards the value of community support and integration was intermediate. With regard to the value of stakeholder participation and empowerment, there was a clear change in the power contract between consumer/survivors and support staff (Janeway, 1980). Each of the three settings provided consumer/survivors with many opportunities to recover their voice and to have genuine choice (Nelson, Walsh-Bowers, and Hall, 1998). Consumer/survivors are visible and prominent on boards and committees and have decision-making power about organizational policy and the types of supports that they used. Each of the organizations created a culture of stakeholder participation that was quite different from what existed prior to the initiation of the change processes. This focus on participation was seen by all the organizations as beneficial for individuals and the organizations (Salzer, 1997). The two mainstream organizations have not become consumer-driven orga-

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nizations, but they now have multiple vehicles for consumer/survivors to have considerable influence in the directions of the organization. With regard to the value of community support and integration, we found that all three organizations changed their services to emphasize peer support, but only one of the three organizations dedicated resources to facilitating community integration and inclusion. Segal and Aviram (1978) have made a distinction between internal and external integration, which seems pertinent here. Internal integration refers to activities or settings exclusively for consumer/survivors (e.g., a self-help and mutual aid organization or housing setting), while external integration refers to consumer/survivor involvement in mainstream settings. Of the three organizations, CMHA seemed to place the most value on external or community integration. Services were consciously shifted away from programs exclusively for consumer/survivors to individualized supports aimed at helping people to integrate into typical community settings (e.g., employment, recreation). Waterloo Regional Homes did not shift resources into the promotion of community integration to the extent that CMHA did. The individualized support provided by Waterloo Regional Homes was viewed as such a necessary service that substantial agency resources were not converted to supports for recreational and employment integration in the community. Instead, they were converted to providing practical supports that helped people 'choose, get, and keep' the housing of their choice in the community (Carling, 1995). The emphasis on community integration has been promoted in a different way. There continues to be more of an emphasis on group activities and creating a sense of community within the agency (i.e., internal integration). However, staff at Waterloo Regional Homes received extensive training in how to promote community integration and how to connect individuals with integrated community activities. Participation in broader community activities is facilitated where possible based on available resources. WRSH programs and supports are exclusively for consumer/survivors, but such programs are seen as providing a step towards integration into the community and also as a site for political resistance to the traditional paradigm (Church, 1997; Trainor et al., 1997). As an alternative organization WRSH has brought a healthy component to both mainstream organizations and has been critical in the paradigm shift. WRSH activities for consumer/survivors can viewed as a 'stepping-stone' for integration into the community. This finding is consistent with research

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on consumer/survivor initiatives which found that consumer/survivors participating in such organizations increased their community involvement. We believe that community integration is the responsibility of communities, not just organizations. In the empowerment-community integration paradigm, organizational commitment to inclusion is a critical strategy, but wider civic processes that build welcoming communities are also needed. In K-W the three mental health organizations have been the catalyst for the wider community to become engaged in these issues, but other community initiatives are also needed. Finally, our research showed that the value of social justice and access to valued resources received attention from each of the agencies, but less so than the other values of the empowerment-community integration paradigm. Waterloo Regional Homes has created more access to affordable housing, but this has been curtailed in the past few years with government's abdication of responsibility for creating social housing for people with low income. CMHA has created a supported employment/ education program, and WRSH has developed an entrepreneurship program and a loan fund. However, the ability of these organizations to develop these initiatives more fully has been hampered by a lack of government support, which we noted in Part 2. The finding about limitations in the three organizations in terms of their abilities to create increased access to valued resources is consistent with the observation that social justice tends to be the most neglected value in community intervention for disadvantaged people (Prilleltensky and Nelson, 1997). Factors Influencing Organizational Changes

Theory and research on organizational change has suggested that organizational readiness (Cherniss, 1978; Fullan and Stiegelbauer, 1991), leadership (Block, 1993; Senge, 1990; Weatley, 1992), and effective change strategies (Fullan and Stiegelbauer, 1991) are critical factors for change. Our findings support these observations. The two mainstream organizations, CMHA and Waterloo Regional Homes, both had a history of innovation and evaluation. Both were regarded as strong organizations with solid programs, albeit within the traditional paradigm. After a decade of rapid growth, both were ready to take stock and make change; the time was ripe. As an alternative setting, WRSH was innovative (Reinharz, 1984); never before had there been a mental health organization operated by and for consumer/survivors in the region.

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The new executive director at CMHA played a strong leadership role in creating change, as did the executive directors and founders of Waterloo Regional Homes and WRSH. These leaders helped to identify and utilize others in the settings in leadership roles (Bullock, 1983; Folger and Konovsky, 1989; Foster-Fishman and Keys, 1997) and to develop shared values and a vision of the empowerment-community integration paradigm with board members, staff, and service users (Senge, 1990). The fact that these organizations began their change processes at the same time and that these three organizations work closely together also suggests that there was some synergy for change. Bond and Keys (1993) have argued that the combined influences of empowerment and collaboration can have a synergistic effect on organizational change. While each organization has its unique identity, the adherence to common values reflecting the empowerment-community integration paradigm has likely helped to create some aspects of a common culture. Bond and Keys (1993) have noted the importance of people who span the boundaries of different stakeholder groups for translating values into an organizational culture. These boundary spanners have played roles (e.g., staff, board member, consumer/survivors or volunteer) within more than one of the three organizations. For example, WRSH members have had significant involvement with the other two organizations, acting as change agents and advocates. WRSH was essential in the kaleidoscope of change, and it brought a healthy component to mainstream organizations. Just as boundary spanners played a key role at the policy level in linking the government bureaucracy with the consumer/survivor movement, in K-W boundary spanners have forged links and created some coherency, in terms of values and practices, among the three organizations. All of the organizational change outcomes and the processes that facilitated and inhibited these outcomes in the three mental health organizations are summarized in Table 7.1. Given that we have seen how the three mental health organizations have changed, the next question is: How have these organizational changes influenced personal changes? In Part 4, we turn to an examination of how the processes and changes in the three mental health organizations affected the lives of people whom the organizations support.

Table 7.1. Organizational change outcomes and processes facilitating and inhibiting change within the three community mental health organizations Community mental health organizations CMHA

Waterloo Regional Homes

WRSH

• Strong emphasis and constant reflection of activities in terms of values

• Clarification of the vision and direction of the agency and development of service principles • Focus on consumer/survivor strengths

• Creation of a shared vision and values • Ongoing reflection and additions to the values

Increased participation of consumer/survivors

• Consumer/survivors visible and prominent throughout the organization • New organizational vehicles created to maximize consumer/ survivor participation

• Consumer/survivors visible and prominent throughout the organization • New organizational vehicles created to maximize consumer/ survivor participation

• Growth in membership and in member involvement • Members' contributions valued and encouraged

More participatory and inclusive management style

• Staff and community members participate actively in organizational decision-making

• Staff and community members participate actively in organizational decision-making • Staff teams

• Openness to participation and leadership by members

Changes in the way services provided and the types of services

• Flexible, individualized, consumer/survivor-directed supports • Services focus on promoting community integration • New services focus on promoting access to valued resources

• De-linking of housing and support • Consumer/survivors have more choice and control over services • More people supported by the agency • New services designed to meet expressed needs of consumer/ survivors • Flexible, individualized supports

• Increase in the number and types of activities • Improved relationships among members • Increased education and advocacy activities

Outcomes and processes Outcomes Values and philosophical foundation

Table 7.1 (concluded) Community mental health organizations Outcomes and processes

CMHA

Waterloo Regional Homes

Changes in staff roles, values, and practices

• Staff as facilitators, not experts • Identity changes for staff • More respectful and equal relationships between staff and consumer/survivors • Staff stress from role changes

• Staff as facilitators, not experts • Identity changes for staff • More respectful and equal relationships between staff and consumer/survivors • Staff stress from role changes

Organizational readiness (+) Leadership (+) Resource people (+) Teaching tools (+) Government funding (-) Skill set, knowledge, experience of some staff (-) • Resistance or lack of support from some stakeholders (-)

Organizational readiness (+) Leadership (+) Resource people (+) Government funding (+ and -) Consumer/survivors' fears of losing support (-) • Resistance or lack of support from some stakeholders (-)

Factors Facilitating and Inhibiting Change

WRSH • Equality between staff and members • Stress and conflict • Personal growth of members

Organizational readiness (+) Leadership (+) Increased profile and respect from the community (+) Government funding (+ and -) Confusion among members regarding the self-help approach (-)

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PART FOUR

Improving Individual Lives: Developing 'Self in Community'

Individual lives are affected by many cultural and organizational forces, as well as by influences and motivations internal to the self. As we have learned from individuals who experienced the various organizations, individual lives improved as the community mental health organizations changed. By listening to and observing people's stories, we also learned that personal change is riot linear, but reflects the complexity of people's interaction with self, family, support organizations, and community. In some cases the organizations have made a profound difference in people's lives. The richness and the complexity of personal change is the theme of this part of the book. We summarize the findings and patterns from indepth interviews and focus groups with individuals, and we highlight the stories of five individuals that demonstrate changes in the lives of consumer/survivors. As we have done in previous chapters, we analyse what we have learned about the lives of individuals by using the lens of the empowerment-community integration paradigm. There are chapters devoted to each of the three themes: (1) personal empowerment (Chapter 8), (2) community support arid integration (Chapter 9), and (3) social justice and access to valued resources (Chapter 10). In Chapter 10 we also reflect on some of the overall themes regarding changes in the lives of individuals, integrating material from all of the chapters in this section. It is important to recognize that, while we report these changes separately, oftentimes changes in one area are interrelated with changes in another. As we shall see, the results suggest some important questions for furthering the paradigm shift in community mental health.

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Chapter Eight

Personal Empowerment

I never imagined that he [Consumer/Survivor] would have those opportunities, nor that he would be accepted and at least at some level, be successful - that's empowerment, in my view. Family Member

As we noted in Chapter 2, personal empowerment is often referred to as the process by which individuals participate with others while gaining increased control over their lives (Lord and Hutchison, 1993; Prilleltensky, 1994; Rappaport, 1987). This definition of personal empowerment suggests that empowerment is both a process that unfolds over time and the positive personal changes (outcomes) that follow from this process. Some of the positive outcomes that one might expect from the process of personal empowerment have recently been identified by consumer/ survivors and include self-determination, decision-making, independence, perceptions of control, voice, skills, assertiveness, self-understanding, and self-esteem (Chamberlin, 1997; Manning, 1999). Zimmerman (1995) identified similar personal empowerment outcomes. Empowerment research has shown that these empowerment skills and capacities happen through community participation, relationships, and engagement with others (Kieffer, 1984; Lord and Hutchison, 1993; Lucksted, 1997; Manning, 1999; Parsons, 1997; Riger, 1993; Surrey, 1991; Zimmerman and Rappaport, 1988). That is, empowerment is a transactive process between the individual and the environment (Zimmerman, 1995). The empowerment process can be most aptly expressed as 'self in community' (Lord, 1997). Some qualities of the

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social environment that consumer/survivors have identified as key empowerment resources are decision-making power, access to information and resources, and a range of support options from which to choose (Chamberlin, 1997; Manning, 1999). Recent literature on the recovery process in mental health shows considerable overlap of the concepts of empowerment and recovery. In their review of the recovery literature, Young and Ensing (1999) identified the following themes as characterizing the process of recovery: insight, a sense of self, hope, empowerment, coping strategies, and social support. Like the studies by Lord and Hutchison (1993) and Lucksted (1997) on the process of empowerment, recent studies of the recovery process for people with mental health issues have identified a shift from dependence to independence and improved quality of life (Baxter and Diehl, 1998; Young and Ensing, 1999). Opportunities for self-determination and community participation, developing a social support network, and gaining access to valued resources all contribute to the recovery process (Baxter and Diehl, 1998; Deegan, 1988; Young and Ensing, 1999). Even though the concepts of empowerment and recovery are similar, in this chapter we decided to use the term 'empowerment' because it emphasizes the issue of power which is central to the emerging paradigm. Also, in our community, consumer/survivors use the language of empowerment. In this chapter we describe the process of personal empowerment through the story of one consumer/survivor; we note the discourse of empowerment that has taken hold in all three organizations; we describe personal empowerment outcomes that were identified by research participants, highlighting the story of another consumer/survivor; and we analyse factors that facilitated or inhibited the achievement of empowerment outcomes. The Empowerment Process The Process of Empowerment Jean's story in many ways reflects the process of empowerment experienced by many consumer/survivors with whom we talked. Jean's Story Since Jean could not read or write, she never worked much during the first ten years of her adult life, because she was not able to fill out a job

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application. Then she found a job in a factory, and this went well until the time when the company required paperwork. Jean became adept at hiding her inability to read and write. As she noted, 'When something harder came up, then I would just quit that job and move on, rather than say I had no education.' About four years before we interviewed Jean, she found herself unable to avoid the requests for paperwork in her job. She was fired and experienced a severe depression and subsequent hospitalization. Wendy, a friend who met Jean during the hospital stay, observed that Jean's self-esteem was very low and that she was 'a very scared person who didn't feel very important.' During her breakdown, Jean 'was showing aggressiveness, I think, because she was scared,' Wendy explained. Jean said that her family was fine when she was in the hospital for a physical problem, but some stopped speaking to her when she experienced depression. Jean described this time in her life as 'hanging from a rope [with] nowhere to go.' Jean reported that she began to change when the local hospital connected her with the Canadian Mental Health Association (CMHA). Barb, the support coordinator assigned to Jean, spent a lot of time listening and gently sharing information. Together Jean and Barb identified several areas where Jean wanted her life to improve. She gradually began to face the areas she had avoided, enrolling in an adult school program with the intention of learning how to read and write. A support coach was employed to help her adapt to the school environment and assist with tutoring. Staff advocated on Jean's behalf, assisted her in filling in the necessary forms to get employment insurance benefits, and eventually they helped her find a volunteer job. The job at a pet store fit Jean's needs perfectly as there was no requirement for paperwork, and she found a great deal of comfort in caring for the animals. She also came to an awareness that she 'didn't want to hide anymore that I wasn't like them.' This awareness gave Jean confidence to move ahead. Jean saw as her biggest challenge acquiring the ability to move away from her parents' home; she had lived with them all her life. She wanted her own apartment, but her parents objected and she did not have the money to rent one. The worker helped her apply for and obtain the financial assistance to get her own place. 'It was hard for me to make that move,' Jean said, but stressed that it was the right thing to do. Staff noted that when Jean 'moved out of her family's home into her own home, she was seen by family members as abandoning her parents,'

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which 'really caused some negative reactions within the family.' Wendy saw Jean struggle out of a sense of obligation that she had 'to look after everybody in her family.' Also, Jean has gone from higher paying jobs to a disability pension income. Over the past three years Jean has taken increasing power and control. As Jean is rebuilding her life, she has found that 'I don't leave it up to somebody else,' and she has 'learned that I don't have to believe in everything everybody says, that I now can make the decisions for myself.' Jean has asked for and accepted help, but she now sets the direction her life is taking. Staff speculated that Jean's responsibilities of taking care of her parents when she lived at home prevented her from being able to do things that she might have wanted to do. Wendy stated that Jean 'likes to be very independent and do things on her own' and that she also has the strength to have 'allowed people to help her.' Jean's involvement in her community has increased. Recently she has rejoined the Y, and she is also looking forward to taking on a volunteer position in a seniors' home. She is making new friends, and Wendy observes that Jean is 'out more and more' in the community. There have been significant changes in Jean's relationships over the past four years. She reported very satisfying and supportive relationships with the workers at CMHA and said that 'CMHA made me feel like a different person.' She had relationships with someone she 'could talk with who understood her.' There were also losses. Jean noted, 'I lost a couple of friends through mental illness because they just don't understand.' Jean reported that her involvement with CMHA has made a great difference in her life. The staff 'helped me to know that I could do it on my own' and made her feel that there was hope. While Jean attributed much of her growth to the staff, the staff viewed their role as one of facilitating Jean's awakening to what is already part of herself. Wendy said it was helpful that the staff would be flexible and spend time in the school as well as at home with Jean, and that made her more comfortable. Over the past three years Jean has gone from living with her parents, several hospitalizations, frequent use of the distress line, loneliness, and numerous medications, to living in her own apartment, a brief (days) hospitalization, not needing to call the distress line, off all medications, attending school, finding friends, and being involved in her community. Attributing much to her getting more of an education, Jean has found independence and that she does not 'have to rely on the rest of the world to do everything for me.'

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Reflections on Jean's Story of the Empowerment Process

Jean's story captures many of the elements described in studies on the process of personal empowerment. Several researchers (Kieffer, 1984; Lord and Hutchison, 1993; Lucksted, 1997) have found that powerlessness is the place where most vulnerable people begin the empowerment journey. Certainly Jean experienced extensive powerlessness. These researchers also reported that there is an impetus or catalyst towards empowerment. This has been variously identified as a 'shake up'(Lucksted, 1997) or 'crisis' (Baxter and Diehl, 1998; Kieffer, 1984). In Jean's case, her breakdown was a significant crisis for her. 'Gaining awareness' (Lord and Hutchison, 1993; Young and Ensing, 1999) was also an important part of her journey. She became aware of her own strengths and weaknesses and began to act on this awareness. Similarly, the support coordinator and the other support she received from the CMHA enabled her to receive the community support she needed to 'learn new roles' (Anthony, 1993; Baxter and Diehl, 1998; Lord and Hutchison, 1993). Jean's 'participation in the community' (Lord and Hutchison, 1993; Lucksted, 1997; Manning, 1999; Young and Ensing, 1999) was subsequently essential for her increasing control and independence. What Jean and many others experienced over time was the coming together of motivation, viable opportunities for change, and resources to support the change (Baxter and Diehl, 1998; Lucksted, 1997; Young and Ensing, 1999). For most people with whom we talked, one or more of the three organizations described in the previous chapter played a central role in presenting opportunities for change and in enabling the person to access support resources. Empowerment Discourse Focus group participants mentioned progress in the lives of consumer/ survivors with regard to personal empowerment. The comments were generally very positive across all stakeholder groups and all organizations. Moreover, participants used the language of empowerment in describing such changes. For example, a staff person's reflections framed empowerment around strengths and growth: 'Well, I know for myself, I certainly see a lot more personal empowerment within the people I work with ... And I think it makes a big difference if we keep trying to focus on the person as opposed to the illness ... So definitely that empowers people - they're not just an illness, they're a person and they have feelings, they have growth.'

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Another staff person talked about people believing 'in the right' to personal empowerment more now than in the 1980s. It was emphasized that there was more opportunity for personal empowerment to be expressed because of the new 'personal planning' approach used in providing supports, which emphasizes 'listening to what people would like to see happen in their life.' A minority of people representing all stakeholder groups were quite articulate about empowerment. Within the culture of all three organizations, the discourse of empowerment was used to describe the 'shift in power' from agencies to consumer/survivors. Leaders in the organizations, especially Waterloo Region Self Help (WRSH), talked about empowerment principles, such as self-determination, consumer-directed options and choice, and 'having voice,' themes very similar to those identified by consumer/survivors in another study (Chamberlin, 1997). While the language of most stakeholders in the focus groups only expressed their experience with change, their discourse reflected empowerment principles. In many ways, we find this to be significant, because a shift in language by users can be seen as a step in the change process. In itself, this does not indicate a paradigm shift, but no paradigm shift will occur without a parallel shift in language (Freire, 1973; hooks, 1984). Empowerment Outcomes Participants identified a number of different empowerment outcomes or personal changes that consumer/survivors experienced. We begin with a story that illustrates such outcomes, then we shift to an examination of each of the indicators of personal empowerment that were reported. Increased Control and Independence through Supported Housing and Participation Janice's Story

Since the tragic death of her brother when she was ten years old, Janice has struggled. Despite her confusion about what was happening to her, Janice's parents encouraged her not to talk about any of her problems, because, as they said to her, 'There is nothing wrong with you, and if you do [talk], you'll get it when you get home.' Janice has strong memories of the abuse she suffered at the hands of her alcoholic parents. By her

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own admission, Janice was not an easy child to raise. She was diagnosed with a learning disability in the early grades, and in high school she was involved with a tough, rebellious crowd. She was often lonely and withdrawn from people, and as a teenager she began abusing drugs and alcohol. She moved out of her parents' home and tried living with a number of other people and in boarding houses. She even spent some nights on the street. It was while in high school that Janice first ended up in hospital. She was re-admitted many times thereafter and spent years in counselling and a number of treatment programs. During this difficult time Janice's outlook was bleak: 'I was very needy ... I needed to be with somebody 24 hours a day ... I was scared. I was out of control myself. I didn't care about anything, I just wanted to be bad ... I could never be a normal person. I would always be sick the rest of my life.' Janice came into contact with Waterloo Regional Homes in 1991 when she was about twenty years old. She was accepted into a group home and lived there for a year. Janice believes that if she had not become involved with Waterloo Regional Homes she would have experienced further tragedies: 'My learning disability would show more. I think I would probably be a bum on the street or behind a bottle of alcohol. I would be very self-mutilating ... I don't think that I would be around.' Becoming involved with Waterloo Regional Homes was like creating a new family: They treated me like they were one of my family members and that's what I built my life upon ... because I really don't have a family as my own. So I felt that in order for me to have a life and to feel that I have a purpose in life, I needed to create a family in a sense, like a secondary family.' When Waterloo Regional Homes created a more flexible support system for individuals living on their own, Janice, with the aid of a support worker, was able to find her own apartment, where she learned to cook for herself and to budget her money. Janice's support worker made the following comment: 'Previously there was a lot of fear, but going though some of these difficulties [in previous living arrangements] gave her the courage to try living alone ... and she is now quite comfortable with her living situation.' Over the past six years, since coming into contact with the agency, Janice has been involved with many committees at Waterloo Regional Homes, and she has recently done part-time paid jobs for the organization and found other casual work. Her sister credited the agency with many of the changes in Janice: 'It's definitely made an impact on her

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life 'cause she feels important and she feels that she's needed and she feels like she kind of has a place in the world.' Janice not only became active at Waterloo Regional Homes in order to help herself, she also saw the importance of helping others through her work. She repeatedly spoke of 'giving back to others' and making a 'difference' in people's lives. Another important change in Janice's life has been her increased selfconfidence. She talked about 'believing' in herself now. Others acknowledged the change in her life from being very 'timid' to now having 'confidence.' An indication of the change in Janice's self-confidence is the way she has become involved in the broader community. She is active on a sports team and enjoys going to sporting events, social gatherings, and parties. Janice still has hard times. In fact, during the time this study was conducted, Janice was hospitalized. But she was determined to go ahead with completing the interview process. Although psychiatric treatment is still needed, Janice is responding better: 'It used to be a lot of running away and self-harm. Now periods of high anxiety, sleeplessness, and a feeling of loss of control are still present but not nearly to the degree of frequency that they were.' She has been able to know when to admit herself into the hospital, and she has taken advantage of the pager support system and the crisis planning at Waterloo Regional Homes. These small steps have helped her to shorten the times that hospital treatment is required. Whereas the hospital was once a 'second home,'Janice now sees it as a 'safe haven' for tough times. Another major change in Janice's life over the past few years has been in her relationships with others. Janice has gradually been able to let down her 'tough' and 'strong' image. From being a withdrawn, cold, and confrontational young adult, Janice now frequently meets with friends, whether at her daily trips to the coffeeshop, or in the evening watching videos with friends. Her support worker described Janice's 'peer support' as a being a 'closer support group than you might have if you are meeting people through clubs and church.' According to Janice, Things that helped my changes were becoming involved at Waterloo Regional Homes, being educated [about my mental health issues], having a purpose, caring about myself ... [and] through the help of other people who cared.' A tribute to the importance of Waterloo Regional Homes in helping Janice create her new family of support comes from her sister, the only 'natural' family member with whom Janice maintains contact. Her sister acknowledged that

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Janice has developed a sense of belonging and direction in her life. She stated that Waterloo Regional Homes has 'definitely made an impact on her life, because she feels important; she feels that she's needed; and she feels like she kind of has a place in the world.' Reflections on Janice's Story

Janice, like many other consumer/survivors, experienced long periods of powerlessness. As Elizabeth Janeway pointed out in Powers of the Weak (1980), citizens who are less powerful are generally persuaded by the powerful to mistrust their own motives and voice. Extensive hospitalization 'silenced' Janice, and for some time she internalized the beliefs of others about her own weaknesses and limitations. Appropriate housing and individualized support were critical in Janice's recovery. Several empowerment principles were utilized by the staff within Waterloo Regional Homes, which enabled Janice to have choice (where to live) and self-determination (setting her goals and accessing support to achieve those goals). In Chapter 2 we reflected on housing literature related to the empowerment-community integration paradigm which is critical of the 'continuum of housing' approach. As Waterloo Regional Homes moved away from the continuum approach, Janice was able to access individualized support within her own home, even though she continued to have mental health challenges. This kind of support increased her independence and control. As Janice began the process of recovery, her involvements within Waterloo Regional Homes and within the community were also significant. The ability to participate and contribute have been identified as key elements in the personal empowerment process (Lord and Hutchison, 1993; Manning, 1999; Parsons, 1997). Indicators of Personal Empowerment

In Table 8.1 we present an overview of the indicators of personal empowerment that emerged from our interviews and factors that facilitated or inhibited changes in personal empowerment. In this section we describe and discuss each of these types of change. Increased Control

One of the most frequently mentioned empowerment changes of consumer/survivors of the three organizations was a sense that they had increased control in the direction of their own lives. Increased control

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Table 8.1. Changes in personal empowerment and factors that facilitated or inhibited changes* Identified changes in consumer/survivors

Factors that facilitated changes

Factors that inhibited changes

• Increased control over daily life • Increased independence • Better relationships • Increased confidence and self-esteem • Increased skill development • Increased participation and involvement

• Responsive mental health organizations • New services and supports • Peer support and self-help groups

• Personal issues and personal history • Lack of money • Lack of control over medical treatment

*The identified factors do not relate to separate individual changes but reflect people's overall experience related to individual change.

was mentioned by all stakeholder groups, but particularly by staff. A typical comment was: 'I've seen a few people since they first started definitely taking more control of their lives and venturing out on their own and are extremely proud of it.' Having more control over the types of services and supports that they need and want was mentioned by a number of consumer/survivors: 'By the way Waterloo Regional Homes for Mental Health has changed, it lets me make my choices very much more. I choose when I want to see a worker. I choose what I want to do. For me that helps my self-esteem. And it's a very safe place to do it from ... I now have the ability to take responsibility and make decisions about my involvement with different types of treatment, programs, community groups, and individuals.' Consumer/survivors have more control over certain aspects of their support and treatment. For example, consumer/survivors in the two formal agencies now make their own crisis plans, which includes outlining 'who they want called, who they don't want called, what they don't want in any circumstances.' This has provided pro-active direction to workers when they are supporting an individual through a crisis. When in the hospital, consumer/survivors continue to work closely with their support coordinators from the community agencies and determine 'what's going to be done while they're there.' WRSH also has peers visiting the hospital regularly to provide information, support, and advocacy. Through the self-help groups at WRSH,

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consumer/survivors make 'the decision of what [kind of groups are] needed and they also lead their own groups.' Although peer support groups would typically not be considered 'treatment,' many consumer/ survivors said these groups often serve therapeutic purposes and help them manage their symptoms. We consider these elements of increased control in treatment and support as beginning steps towards the empowerment-community integration paradigm, where treatment occurs in ways that are truly collaborative, individualized, community-based, and culturally appropriate. Housing and individualized support provided by Waterloo Regional Homes gave many consumer/survivors increased control for the first time in their lives. A staff person who had been part of the change process emphasized that 'They [consumer/survivors] direct the support that they receive. I think that has a direct impact on their personal growth. So they can identify where they want to go and how they want to get there and the staff are there to facilitate anything that they've identified as a goal for themselves.' Increased Independence

Janice's experience of increased independence through supported housing was echoed by many in the focus groups. Increased independence was often related to living arrangements. The choice to leave a group home whenever they felt ready (not predetermined by agency maximum stay policies), or the privacy that came when living in their own apartment gave consumer/survivors a feeling of freedom and control. One consumer/survivor emphasized, 'You live on your own, you do what you want, and you're free.' Another consumer/survivor related her dramatic change of moving 'from agoraphobia to living on my own.' Several family members also noticed a change in the independence of their loved ones, and the responsibility that comes with it: ' [He has far more power now] over his own life. That he ... also has, and I want to stress, is along with the power, he also has more responsibility getting meals, cleaning the place and so on.' Although independence for many was an important part of 'moving away from dependence,' it was also often accompanied by more interdependence (Condeluci,1991). Better Relationships

Many people mentioned the improved relationships in which consumer/survivors were involved. Consumer/survivors talked about

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increasing the number of relationships they have with others because they are more involved in community activities. Others acknowledged the support that they receive from staff and peer relationships: 'I [experience] personal empowerment and that if I'm having a rough time sometimes I think it's always going to be that way. And consumers and staff talk to me and tell me, "Well, this is what you've done and you've done really well. You've succeeded in certain areas and stuff" ... even consumers help you to look at what you have accomplished and what you can change.' As suggested by Stephen Covey (1989) and the findings of a recent study of the recovery process (Baxter and Diehl, 1998), independence precedes and prepares us for interdependence. In so many parts of our lives, effective relationships and interdependence are requirements. For many consumer/survivors, feeling independent and 'in control' enabled them to trust themselves. In Janice's case, this involved some redefining of who she was. In terms of the empowerment-community integration paradigm, empowerment as personal control is not just about independence, but can be seen as 'an active process of engagement in the social world that is influenced by relationships and context' (Lord, 1997: 5). It was through community and relationships that many consumer/survivors became empowered. Increased Confidence and Self-Esteem Another frequently mentioned way that participants saw consumer/survivors becoming empowered was through their increased confidence and self-esteem. This was particularly emphasized by consumer/survivors themselves from all three organizations. Describing his personal changes, one consumer/survivor said: 'I would say good because - a change in attitude - because I have more confidence now.' Consumer/survivors spoke of feeling empowered when they were able to participate in activities that they previously could not engage in. The following quotes illustrate the power of participation and contribution in increasing self-confidence: 'I have been working through the Canadian Mental Health and WRSH now for two and a half years parttime and ... it helps me to think that eventually I can get out and work full-time. I'm looking after [recreational activities]. And that makes me feel better [about myself]. It makes you feel better that you're running something.' And, 'I go to school right now. I find it's made me a lot more outgoing. Like I feel comfortable by myself as well as being able to

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socialize with other people. Like before I wasn't very good when it came to socializing.' Other consumer/survivors, such as the person quoted below, mentioned that they have become more confident in other areas, such as public speaking: 'One thing I've experienced is that I'm able to speak in public more comfortably. I'm not nervous anymore. Until recently, maybe a year and a half ago, anytime I had to get up in front of a group of people, I'd be shaking. But I've lost that now... The last two times I did any public speaking in the last four or five months, I've felt a lot more comfortable. And when you're comfortable, then you're much more effective too in communicating and connecting better. I think I've increased my self-confidence and I think WRSH has helped me with that.' Although family members did not stress confidence as much as consumer/survivors, many of them found it to be a key component of change. One parent noted: 'I found my [son] more confident ... His self-esteem has improved. Better communication actually between my son, myself, arid the rest of the family members.' Skill Development

There seemed to be agreement that being active as participants in the organizations and the community enabled people to develop skills that led to increased confidence. A staff member noted the relationship: T see a lot and hear a lot that people are talking about personal empowerment. And quite often that seems to be a direct result from their involvement with the organization, either as a program member, but particularly as a volunteer ... When people take that step ... Once you start developing your leadership skills and realize that you have something to give, that really adds to people's feelings of empowerment and self-esteem.' Increased Participation and Involvement

Other consumer/survivors talked about the importance of increased participation and involvement for personal empowerment. The role that WRSH plays in this regard was often noted. Again and again, consumer/survivors associated with WRSH commented on seeing themselves or other consumer/survivors develop their skills (and as a result, their confidence and self-esteem) by being progressively more active in WRSH activities. One person described her growth as follows: 'I found with myself, my changes in WRSH. In the beginning, in the early '90s it

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was more to just belong, whereas now I've reached the point where I can work for the organization and do things that I wouldn't have been able to do earlier ... Earlier I used to just go out for the groups, now I'm more actively involved. Now I help run the groups.' Sometimes the change in a person's life was remarkable: 'I heard the story of the one woman who came to the [WRSH] depression group and hardly ever opened her mouth. And then she became ... the leader of the group ... and it was one of the most successful groups.' Reflections on Personal Empowerment Outcomes

Belief in oneself has been identified as a key element in previous research on the process of empowerment and recovery (Baxter and Diehl, 1998; Chamberlin, 1997; Lord and Hutchison, 1993; Manning, 1999; Parsons, 1997; Young and Ensing, 1999). Confidence in self, of course, is not a stand-alone concept. Parsons (1997), for example, found that personal awareness and self-perception were interrelated with interpersonal knowledge and skills as well as with community participation. From consumer/survivor perspectives about their confidence and community participation in this study, it is important to see that confidence is embedded in the process of empowerment. With this theme, we wondered if the 'conscious self is central in the empowerment-community integration paradigm. When people experience the traditional paradigm, compliance is quite typical. As Janice experienced, finding her 'own voice' took some time and a change in context. Janice needed a safe community where she could form her own identity. Much of her confidence came from gradually taking power and control over her own daily life. In reflecting on how to move away from compliance, Starhawk (1987) stated that we need to reclaim our true needs and real desires and to value ourselves. Most consumer/survivors have experienced extensive compliance. In contrast, the community organizations and the self-help group that are part of this study do not expect compliance, but support consumer/survivor choice. As Wartenberg (1990) described it, these organizations try to use 'power as liberation' instead of using 'power as dominance.' The community supports these organizations provide are individualized and empowerment-oriented. Consumer/survivors stated that they are valued in these organizations. People are supported to think and feel about what they want and who they are. It appears that the emergence of confidence and voice are the results.

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Factors that Facilitated or Inhibited Personal Empowerment Factors that Facilitated Personal Empowerment Participants from all stakeholder groups and all three organizations talked about three main factors that facilitated the personal empowerment of consumer/survivors: (1) the responsiveness of mental health organizations, (2) new services and supports, and (3) peer support and self-help groups (see Table 8.1). Responsiveness of the Mental Health Organizations The three organizations involved in this study were particularly singled out as facilitating personal empowerment. An individual who had experienced all three organizations described the support he found: 'In the case of all three agencies, what has helped is that they have allowed me to dare to dream and try. Very rarely have they put limitations, judgment, or stigmatization on me and made me feel wrong, incompetent, or that I just couldn't do something. They have almost always been there, supporting me to the best of their ability in my endeavours and whatever I wished to do.' Time and time again we heard staff, consumer/survivors, and family members speak of the positive impact that the recent organizational changes at CMHA and Waterloo Regional Homes had on consumer/ survivors' lives. Some of these comments about these service organizations were related to 'enabling' people to dream and take risks: 'It's helping people with their dreams, where before it would have been letting people know their limitations.' Or, '[The key is] the services' willingness to let people take risks and make mistakes.' Other comments related to the belief the organizations had in people, their strengths, their voice, and experience. One participant told of how a particular staff person 'believed in me from the very beginning and that's what kept me going.' Another said: 'It's the organization's desire to provide the best possible service and clearly hear what consumers are saying.' Another agreed, saying: 'I think too ... people's recognition that consumers are the ones with the expertise. They have a better handle on mental health issues and what personally they can manage than anybody else does.' And, 'The change in the philosophy ... that they are more concerned about the consumer, they are bringing them in more.' Other comments related to the commitment which the organizations have to consumer/survivor growth and change. As one partic-

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ipant explained: 'You know if you try something and it doesn't work, the worker is still going to be there, and I still have a place to live.' And, 'They are letting us have the place to grow.' One staff person said: 'They [consumer/survivors] are feeling a little safer and they know I'm not going to go anywhere.' Organizational responsiveness relates to many of the elements of change that were outlined in the previous chapter, including the shift to more individualized supports, values, and principles that now guide practice, and improved relationships between consumer/survivors and staff. It appears from this information that social relations have shifted in the organizations in ways that enable the consumer/survivor to have more choice, control, and participation. This finding of the interrelationship of organizational change and personal empowerment supports Rappaport's (1993) contention that individual narratives parallel the organizational or community narrative. Organizations with an empowerment orientation provide a 'hothouse' for personal empowerment and the growth of individual members (Manning, 1999). New Services and Supports

Many participants spoke of the development of new services and supports as a facilitating factor of personal empowerment. One aspect of this change involved new service principles at Waterloo Regional Homes, which were developed with input from staff and consumer/survivors. As staff began to work in teams and utilize the principles, consumer/survivors noted positive changes. In an evaluation of the changes, which was completed just prior to this study, we found that the shift in service delivery towards individualized support was well received by consumer/survivors (Lord et al., 1998). A number of people noted that the service was better. One person stated, 'I have more control and moving isn't so scary knowing my support worker goes with me.' In the evaluation, consumer/survivors also liked the increased flexibility of the support services (ibid.). Another aspect of new services and supports involved special workshops, training courses, and other types of skill-building activities that were offered to consumer/survivors. At WRSH, in particular, consumer/survivors believed that the self-help organization overcame hurdles in a creative way and implemented supports that were lacking. A leader explained their approach: 'We have listened to the members. There was a strong desire for a drop-in centre ... and there's not too many drop-in centres around any more. And we are not funded to have

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a drop-in centre. And so we accommodated that by making 'drop-in' a structured part of our organization [within peer support and other kinds of programs].' Other examples of new services that participants said contributed to personal empowerment were the CMHA Access Centre and the WRSH hospital visiting program. The latter represented improved relationships between organizations facilitating empowerment. A consumer/ survivor explained the hospital partnership as follows: 'It is empowering when people go into hospitals when we try to work with the staff and the person who is in the hospital to determine what's going to be done while they're there, what's not going to be done, and how we're going to manage future situations that cause them to come to hospital.' Participants emphasized that new services and supports that facilitate empowerment are those that are flexible and individualized. This is consistent with descriptions of the empowerment-community integration paradigm, which stress the need for supports that are responsive to consumer/survivors (Carling, 1995; Manning, 1999; Trainor et al., 1999). Peer Support and Self-help Groups

Occasionally participants used the terms 'peer support' and 'self-help' interchangeably. At other times distinctions were made between the two. Peer support was seen as support received informally through friendships with other consumer/survivors, while self-help groups were viewed as formal groups made up of consumer/survivors who share similar issues and support each other through those issues. What both peer support and self-help groups have in common is an emphasis on mutual aid, as opposed to professional or expert help (Church, 1997; Lavoie and Stewart, 1995). As discussed in Chapter 6, WRSH as an alternative organization provided consumer/survivors with opportunities to talk and socialize with each other in informal ways, through peer support groups and other self-help group activities. This helped many in their personal growth and empowerment process. Participants in particular talked about the benefit of peer support. One said that 'consumers talk to each other a lot and I think that's the biggest morale booster ... So consumers getting together is a huge, huge plus.' According to another: 'I know of people that have kind of got together and do a regular bowling thing together ... It's not a support worker taking them there or whatever.' While another said: 'I made friends through WRSH which is kind of connected to the Canadian Mental Health Association, so I made

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friends through here and there - not a lot but enough that I need to keep it going.' In terms of personal empowerment, part of the benefit of self-help groups was the leadership opportunities provided to consumer/survivors. As seen in the quote below, sometimes taking on leadership roles takes a little bit of prodding: 'Somebody challenged me and with a few choice words of encouragement, helped me get started [as a board member]. And this happened with a lot of different people. Somebody has to do the challenging first. Most of us tend to be a bit shy. We tend to be humble ... if there is an invitation to do something, the first reaction is "Oh no I couldn't do that," but with a little bit of fire under the butt, wonderful things can happen.' Another person said that 'once you start developing your leadership skills (through leading groups) and realize that you have something to give, that really adds to people's feelings of empowerment and self-esteem.' Participation in self-help groups was also seen to help build the capacity of individual consumer/survivors: 'We [at WRSH] may help people build their own alternatives. We may help people get to a point in their life where they feel they're able to look for work. Hopefully through our economic program, we can play more of a role in that.' A positive change regarding self-help groups is the decreasing level of stigma associated with them by both the medical professionals and by consumer/ survivors themselves: 'The hospital recognizes them [self-help groups] now. They didn't even do that two years ago.' Or, 'I see more people who will have less barriers ... or more willing to go to self-help now. I think there is less stigma for them in that setting.' Other Facilitating Factors

Consumer/survivors talked about how they have taken on new perspectives or attitudes and how these have helped them in terms of personal empowerment: 'It had to be myself, changes in myself. The attitude was in my own thinking and trying things and not being scared to try things and accept things.' Taking on an attitude of 'hope' and 'faith' was important for one individual, the importance of 'setting goals for yourself and achieving them' for another, and focusing on the present and future rather than the past for a third individual. Another consumer/ survivor tried to put her illness in a new perspective: 'Just sometimes people [think things] are beyond your control, but the main thing you can realize is that it is temporary ... It's just a temporary setback.' Consumer/survivors mentioned a number of other factors that facili-

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tated their personal empowerment. Increasing 'natural' supports such as family, friends, and church groups was mentioned by a number of people. Medication that 'is really working' was noted by another. Other consumer/survivors acknowledged the importance of social assistance in making it possible 'to get out of the house.' In summary, factors identified by participants that facilitate empowerment emphasized internal motivation and external resources. In previous studies of personal empowerment, external resources have been found to be critical in enabling citizens to gain more control and increase their participation. Likewise, a person's motivation to change ensures that the resources are utilized effectively (Baxter and Diehl, 1998; Kieffer, 1984; Lord and Hutchison, 1993; Lucksted, 1997; Young and Ensing, 1999). In this research, external resources as facilitating factors were an essential part of people's empowerment journey. The change in the organizations' approach from 'power over' to 'power with' (bell hooks, 1984; Starhawk, 1987) created viable alternatives that included the sharing of power, with each person's voice being respected. Outcomes such as increased personal control and selfconfidence were the result. John has described personal control within a social world as an empowerment paradox mostly aptly expressed as 'self in community' (Lord, 1997). Consistent with other current research, this clearly places empowerment in a social context (Manning, 1999; Surrey, 1991). We have learned in this study that even though many individuals continued to have serious mental health problems, their lives were much better off than they had been previously. Factors That Inhibited Personal Empowerment

The most common themes mentioned in terms of hindering consumer/ survivors from experiencing personal empowerment and recovery were (a) personal issues and personal history, (b) lack of money, and (c) lack of control over medical treatment (see Table 8.1). Personal Issues and Personal History

All stakeholder groups across all organizations mentioned that certain personal issues that consumer/survivors experience simply because they live with a serious mental illness have hindered some changes in terms of personal empowerment. Participants talked about some consumer/ survivors having 'self-defeating thinking,' 'fear of failure,' fear of

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making their 'own decisions,' and 'a very big lack of self-esteem,' all of which limit their capacity for change. Consumer/survivors themselves acknowledged their own limitations. Some observed that 'there are a lot of people I know that won't even try [to help themselves],' or others who 'stay stuck playing a victim role of being oppressed and down trodden.' Consider this observation from one staff person: 'Well, in terms of personal empowerment, things that might have hindered it [include] a consumer's own perspective of what they are able to do and unable to do. I think the self-defeating prophecies sometimes come through. "I couldn't do it before. I can't do it now. I'll never be able to do it." Thus, they need more support and/or enhanced support to help cross that hurdle. I think there's the fear of failure. The feeling that perhaps ... in some cases people have never had control of their life and don't know where to start with it... And it could be as well a lack of awareness that they have the ability to set their own goals.' The fact that consumer/survivors have been part of a mental health system that in the past emphasized 'dependency' hinders consumer/ survivors from seeing themselves as capable of helping themselves. As a result, some consumer/survivors 'are used to getting [formal] services' that look after them, at the expense of 'reaching for' and 'demanding' supports that empower them. As we have noted previously, most consumer/survivors have experienced long periods of powerlessness, which often results in individuals internalizing powerlessness and thus mistrusting their own motives and voice (Janeway, 1980; Manning, 1999). Lack of Money

Lack of money was viewed as another factor hindering personal empowerment. Money was seen to be lacking for supports that could help consumer/survivors to become more independent. Participants from all three organizations claimed that they could do much more to encourage personal empowerment if they had more resources. But it is not only the organizations that lack money. Consumer/survivors often find themselves in need of money. Pat Capponi, a leader in the survivor movement, has written about the devastating effects of poverty (Capponi, 1997). These comments attest to this problem: 'I don't know how some of them [consumer/survivors] survive on what they get. So how do you plan proper meals, proper clothing, proper transportation to go out into the public and be accepted by the public?' And, 'How can you feel empowered when you don't know if you are going to have food next

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month?' While money as a valued resource was mentioned by many people, as we shall explore, other types of valued resources also limit the capacity for empowerment and for citizenship. Lack of Control over Medical Treatment

Many consumer/survivors mentioned that lack of control over medical treatment hindered their personal empowerment. One consumer/survivor thought that 'some doctors, not all doctors, but some doctors can hinder your progress if they want to keep you doped up.' Several participants talked about consumer/survivors being placed in a 'subordinate' position relative to their doctors without the sense that 'they can really ask questions' or even have access to their own files. The imbalance of power relations was very common in the treatment realm (Lord and Dufort, 1996; Manning, 1999). One woman explained: 'I can remember asking one of my doctors in London if I could see my files, and he said, "You'll never be in any condition to read your own files."' Family members spoke of the hindering impact of medication on consumer/survivors in terms of negative side-effects. One family member also thought that some medications actually cause consumer/survivors to become more depressed: 'Just because some of the medications are quite effective, they look at their situation and say, "I haven't got a job. I haven't got a career. I haven't got a wife. I haven't got a car." You know. And they wouldn't necessarily think like that. Maybe they're too miserable in other ways, but when they can think very clearly, that is I think when they may become most depressed.' This issue of lack of control over medical treatment is an important one that we return to in Chapter 11. Other Inhibiting Factors

Some mental health organizations were seen to 'set unrealistic goals with respect to employment and this is often not helpful to someone's attitude and approach to getting into something new.' Negative stigma from the community that is 'judgmental' and 'not accepting' was mentioned as making it difficult for consumer/survivors to overcome their barriers and reach their goals. A few participants did think that there were limits to the extent of changes in personal empowerment. One staff person, for example, thought that the majority of consumer/survivors had not experienced an increase in empowerment because 'they have no control over treatment.' Another staff person thought that consumer/survivors actually

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felt 'disempowered' because they did not like the changes happening within the organization and 'could do nothing to stop them.' Finally, one consumer/survivor thought that changes in personal empowerment were mixed: 'For some, yes, I've seen a change in personal empowerment. For others, no.' Personal Empowerment and the Empowerment-Community Integration Paradigm As we complete this chapter on personal empowerment, we learned that the process of personal empowerment is very similar to what others have called the process of recovery. Judi Chamberlin (1999) recendy asserted that recovery is about becoming a person, a citizen, someone who can access community supports, while empowerment is about being in control and making choices. Both empowerment and recovery, according to Chamberlin, involve moving away from the 'mental health bubble,' that invisible barrier that separates consumer/survivors from the community. Similarly, in a recent study with consumer/survivors in a supported housing setting, Parkinson (1999) found that when individuals initiate a process of change and begin to regain what was lost and move forward, their quality of life improves. Consistent with Chamberlin's assertion, Parkinson reported that central to this process of empowerment and recovery is gaining control and connecting with the community. In a similar vein, we learned that personal changes in the lives of consumer/survivors reflect changes in the social relationships between consumer/survivors and mental health professionals and organizations. The changes also illustrate the importance of empowerment as 'self in community' and begin to move the boundaries of the empowermentcommunity integration paradigm beyond traditional community mental health 'systems' towards more genuine community and the involvement of a variety of stakeholders (Lord, 1997). Empowerment for most of the consumer/survivors in our study meant involvement in community life. Engagement with others thus becomes a key part of the emerging 'self.' These lessons suggest that community support and integration must be an important part of the framework for change. In the next chapter, we explore changes that consumer/survivors experienced with regard to community support and integration.

Chapter Nine

Community Support and Integration

Working with Waterloo Region Self Help (WRSH) has given me the ability to prioritize whether it be to buy a computer or whether it be to go out in public and talk about different things or even to examine my relations or even friends of mine ... My personal health has increased ... I feel good pretty well every day I get up ... my mental health has also been greatly improved in the process of being with WRSH ... Without WRSH I wouldn't be where I am now. I wouldn 't have the self-esteem, I wouldn 't have the character, I wouldn 't have anything. Jonathan, a consumer/survivor

This quote from Jonathan, whose story is included later in this chapter, speaks to the importance of informal support and community for one's mental health. Jonathan experienced strong feelings of community in the context of WRSH, a self-help and mutual aid organization. For us community support and integration means being a valued part of the community, not just being in the community (Lord and Pedlar, 1991; Nelson et al., 1998b). In the empowerment-community integration paradigm, people are seen as a part of community, and there is a focus on the whole person, including his or her strengths, capacity for growth, and potential for enhancing the community (Carling, 1995). Central to this is the building of strong social support networks and meaningful relationships. Recent research clearly shows how valuable relationships are for health and quality of life (Ornish, 1997). Unfortunately, many citizens with mental health problems have few relationships in their lives and have experienced unwelcoming communities, which keeps them further isolated. As the call for community and inclusion is increasing from several quarters (Carling, 1995; Condeluci,

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1991; O'Brien and O'Brien, 1996; Schwartz, 1997), the empowermentcommunity integration paradigm draws our attention to the importance of connecting citizens with mental health problems to their communities. From the findings reported in the previous chapter, we can say that community support and integration relates very closely to personal empowerment. Using this community integration lens to interpret the data from our participants, we shall examine the extent to which people participate in the community and identify some of the facilitating and inhibiting factors. To help us understand the context of community participation, we shall also share participants' perspectives on how the community of Kitchener-Waterloo has changed. We shall begin with participants' views on community. Perspectives on Community, Change, and Participation We asked focus group participants what changes they had noticed over the past seven years in the community with regard to mental health issues. As participants spoke it became apparent that the term 'community' was understood in three distinct ways. Participants talked about the general community-at-large. This was the broadest level of community and included the general population and community associations, such as churches and other groups of cornrnon interest. The human services community was seen as the network of organizations that provide a wide variety of services and supports to citizens within Waterloo Region. This level included both organizations with a specific mental health focus, as well as organizations that provide other types of supports (e.g., hospitals, schools, other disability groups). A third level of community was the consumer/survivor community. This included the collective of people who identify themselves as having directly experienced the mental health system and the self-help groups in which they participate. The changes in community support and integration and the factors that facilitated and inhibited participation are summarized in Table 9.1. Family members were the most positive of all groups when talking about community changes. The changes they mentioned were all seen as being helpful and beneficial to them and to consumer/survivors. Family members were the only stakeholder group that did not make comments about all three levels of community; they did not speak about the consumer/survivor community. Staff, managers, and volunteers were mostly positive about community changes, but did note some

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Community Suppport and Integration Table 9.1. Changes in community support and integration and factors that facilitated or inhibited changes* Identified changes in consumer/survivors

Factors that facilitated changes

Factors that inhibited changes

• Increased participation in the community-at-large • Increased participation in the human services community • Increased participation in the consumer/survivor community

• More services and supports • Organizations' communityfocused individual support • Consumer/survivors taking more initiative • Receptiveness of community settings • Availability of natural supports

• Experiences/feelings of safety and protection • Continued stigma in the community • Financial constraints • Personal issues and personal history

*The identified factors do not relate to separate individual changes but reflect people's overall experience related to individual change.

changes that were not helpful to consumer/survivors particularly within the general community-at-large. These stakeholder groups each made comments pertaining to all three levels of community. Consumer/survivors were the most critical of all the groups with regard to community changes (although the majority of their comments were still positive). Consumer/survivors had something positive and negative to say about each of three levels of community. Participants from all three organizations were generally positive about community changes, although negative changes were mentioned by all three organizations. Participants from Waterloo Regional Homes were considerably more positive about community changes than participants from the other two organizations. Focus group participants mentioned progress in the lives of consumer/survivors with regard to all three levels of community participation. Although some consumer/survivors were seen to participate to a greater extent than others, comments were generally very positive about changes in community integration across all stakeholder groups. Changes in Community Participation The Role of Community Support and Integration Steve's Story

Steve was a loner throughout most of his childhood. Despite the fact

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that he had many brothers and sisters, he rarely became involved with them or other children when he was young, and he remained in a shell for most of the early years of his life. While in public and high school, Steve was bullied, a fact that even his parents did not realize until many years later. Looking back now, Steve's father remarks that his son's mental health difficulties began long before his first breakdown or any official diagnosis was made. When Steve was twenty-one years old, there were certain events in his life that caused him a lot of stress and anxiety. Over a period of approximately six months, his mental health deteriorated until one night he took a lunge at his mother and voluntarily admitted himself into the local hospital's psychiatric ward. This was his first hospitalization, followed by another approximately six months later. The second hospitalization resulted from Steve going off his medication. During this time in the hospital, Steve's father believes that some doctors were doing him more harm than good and that he was not getting any better. However, when a new doctor took on Steve's case, his symptoms became more stabilized because the correct medication was found. This new doctor also allowed Steve to leave the hospital with one of the requirements for release being that Steve get involved with a place called Victoria House, a social-recreational program run by the Canadian Mental Health Association (CMHA). At Vic House, Steve began 'hanging out' and meeting people: 'It was kind of a social thing ... go and have fun and it was a meeting place ... That's where I met some of my friends ... that I have today.' He became involved with bingo, bowling, volleyball, parties, and other social outings. In essence, this program helped Steve to get back on his feet, and he feels that the social aspect was very therapeutic. While he was involved with Vic House, Steve also gained a great deal of experience just dealing with people and learning how to interact: 'I was actually coming to a point where I was feeling more of a normalcy feeling ... due to my involvement with CMHA.' During his time at Vic House, Steve met and married his wife. As CMHA went through its change process, Victoria House was closed, and new programs were developed. One of the new programs that Steve used was Discovery Personal Planning. Early in their marriage, Steve and his wife, as well as members of both of their families attended planning sessions that were geared towards developing goals and a plan to reach these goals. Steve also valued the opportunity to talk and bounce ideas off his support worker. He says, 'She [his support worker] was there to listen

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to me talk, you know. I would talk about it and that was kind of a therapy thing to me ... But it was just because I was talking that relieved some of the anxiety.' His support worker commented: 'The difference that we made was giving him the assurance that he had some backup and that there was someone that he could check things out with ... just making him aware of what was available and encouraging him.' Steve believes that he is very fortunate to have gone through personal changes in the time frame that he did, because many of his changes were parallel to changes occurring in the CMHA. For example, when he first became involved with CMHA through Vic House, Steve received help with social and interpersonal skills. When the CMHA restructured and decided to discontinue Vic House, Steve benefited because he was at a point where he was ready to move on as well. Throughout his involvement with the CMHA, Steve also contributed to the organization. His support worker remarked that 'Steve's given a lot back to the organization ... just being involved and ... coming out and he supports a lot of other people too.' Steve experienced a number of beneficial 'community integration' changes in his life. He has secured housing that he is very happy with, and he has gone back to school at Conestoga College. In the community, Steve is more active, and he now plays an important role in his church, an aspect of his life that was put on hold while he was ill. Steve's employment record also speaks to the tremendous positive changes that Steve has gone through. His first job lasted nearly six years, and he is currently working in a restaurant where he has been full-time for the past three years. Steve stated that he has 'gained more true power and control because through different aspects, things that happened on my job ... with my relationships, things with my friends and stuff, I settled down ... I can cope in more of a simplistic manner.' Both Steve's father and his friends see an improvement in his relationships with other people, and with regard to issues around health and mental health, there have been improvements as well. In addition to the support from CMHA, the main facilitating factor for all of these positive changes was said to be Steve's sense of determination, dedication, commitment, and motivation. One of Steve's closest friends said that 'Steve has always been very outgoing. He's not a guy to sit around. He's a guy that wants to get up and get involved and do things ...just do it, you know, like NIKE, 'just do it."' This motivation combined with the support that he received from CMHA and his family helped to get Steve's life back on track.

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Reflections on Steve's Story Steve's experience shows the close connection between support and integration. Early on, the support from Victoria House, a program based on the community treatment-rehabilitation approach helped Steve to make friends and develop his social skills. From there, Steve was able to go out on his own and find employment. As CMHA shifted its philosophy, Steve used the new Discovery Personal Planning approach to gain further awareness of himself and to set goals for his life. We noted for Steve, and for others, the need for support to be specific to the strengths and goals of the person. In Steve's story, for example, the supported employment program was helpful in enabling him to find and keep a new job. Paradoxically, perhaps, we have learned from Steve and others that support also has to be general and responsive. Steve's support worker 'listened' and was a 'sounding board' for issues and concerns. As Steve increased his community integration, he continued to require supportive relationships, which involved both formal and informal members of his support network. In many ways, this is the core of community, when relationships with family, friends, co-workers, and neighbours play a significant role in our lives. These relationships in Steve's life also attest to the importance of social support (Ornish, 1997). Changes in Participation in the Community-at-Large Participation in the community refers to the extent to which consumer/ survivors have become involved in community activities. Focus group participants from all stakeholder groups talked about an increase in participation in general community settings by consumer/survivors 'probably more so than ever before.' The greatest amount of change was noted in this level of participation. Staff spoke of their organizations' encouraging participation by 'helping people to identify what community integration means and how we can achieve that.' Family members saw their loved one's involvement being 'quite healthy' and 'working in their favour.' For their part, consumer/survivors talked about the types of activities and settings that they were involved in now. Many said that they were volunteering in a variety of settings, taking part in different kinds of leisure activities, or having a girlfriend or boyfriend who is not a consumer/ survivor. Being involved in church settings was mentioned by a number of consumer/survivors. Becoming more involved with 'natural supports,' such as family and

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friends, was seen as an important component of community integration. The role of the organizations was emphasized: 'And in terms of the natural support system, the agency also recognizes that the natural support system is key to every living being. That they have someone that they can talk to and connect with and that mostly comes from family and friends and how key those relationships are to maintain and/or develop.' For some consumer/survivors there was a concerted effort to move 'away from the segregated consumer/survivor community' and get involved with 'more natural supports in the community.' Staff also acknowledged that some segregated activities (e.g., recreational) have, in fact, 'become taboo.' Other consumer/survivors saw participation in the community-at-large as complementary to their involvement with consumer/survivor initiatives. Earlier we noted that consumer/survivors recognized the importance of local initiatives and provincial policy to enhance community integration. Several consumer/survivors also recognized their personal role as well. One consumer/survivor said that she became involved in the community in order to 'raise myself up.' Another recognized that many of his personal changes 'have resulted from my own work with myself and my determination to be empowered and to continue to participate in the community.' These comments reflect notions of self-efficacy, meaning that individuals attribute a degree of their own change to themselves. Research has suggested that self-efficacy fosters confidence in ways that enhance participation and taking initiative (Bandura, 1986; Lord and Hutchison, 1993). We would equate self-efficacy with the internal motivation we noticed in people's discourse about the process of empowerment and change. While personal commitment and initiative do matter, consumer/survivors themselves remind us that resources and support are usually needed in order for the internal motivation to 'kick in.' This insight again confirms the interrelationship between personal empowerment and community integration. Changes in Participation in the Human Services Community

Volunteering with human service organizations was the most common type of involvement at this level. Consumer/survivors mentioned a number of different health and social service agencies with which they were involved. Many consumer/survivors expressed comments like the following: 'I volunteer in a community agency where my mental health issue is no issue to the group.'

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Recent research shows that more than a third of Canadians volunteer their time to their community (Hall et al. 1998). The rewards for volunteering are many; for example, feeling included and making a contribution. An increase in this area of involvement is an indication that more consumer/survivors are finding community opportunities for participation. Focus group participants mentioned that within mental health services there has been increased involvement of consumer/survivors. One woman noted: 'I think that there has been a sense that there has been almost an integration, or moving towards an integration of the survivor community in the mental health [services] community.' Consumer/survivors have become more active in policy and advisory positions. In some organizations there are guidelines set for consumer participation on committees. One staff member talked about the consumer/survivor voice as now being 'gold,' referring to the value that has now been placed on that perspective for service planning. As described in Chapters 6 and 7, consumer/survivor involvement has increased dramatically in the two formal organizations. The values of consumer/ survivor participation and self-determination adopted by all three organizations have increased the opportunity for consumer/survivor involvement in a variety of settings within the organizations (e.g., board of directors, strategic planning committees, residents' council, facilitating peer support groups, or fundraising). Participants noted that this trend of consumer/survivor participation has extended to a variety of other community and mental health organizations. The Role of Self-Help in Recovery and Change Jonathan's Story

Jonathan was aware of his mental health issues from a very early age. He described himself as a very shy, introspective individual, at least before he became involved with WRSH. This description of himself demonstrates that Jonathan has a good understanding of his own personality traits, for all other individuals that we interviewed described him the same way: 'It was never an easy thing to engage him in a conversation, because he was very shy.' This reference to Jonathan's shy persona and discomfort around others is in the past tense. Jonathan has largely conquered this obstacle, in no small part because of his involvement and continuing enthusiasm for WRSH. Almost all those interviewed, and Jonathan himself, attributed

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his shyness and withdrawn character to low self-esteem and stigma. Like many who have experienced symptoms of schizophrenia, Jonathan's problem was not accurately diagnosed until after he had been experiencing symptoms for some time. Jonathan found that after his illness was diagnosed, most of his friends drifted away from him. He also lost his job. When he was twenty-two, Jonathan attempted suicide and was subsequently hospitalized. He was admitted into a program called Cameron House (a psycho-social day treatment program) and found he was unable to complete it because he had difficulty speaking about his particular situation. From 1981 to 1987 Jonathan was hospitalized a total of fourteen times, with each stay averaging about four weeks in length. His illness grew progressively worse, and he began to experience hallucinations and attempted suicide a second time. This drained a lot of his physical and emotional resources, and he found himself in a downward spiral. It was during the latter part of this period that he began to actively involve himself in community organizations like the CMHA, doing volunteer tasks so as to achieve a better sense of purpose and self-worth. It was while he was doing this work for CMHA in the early 1990s that he first heard of WRSH and attended a self-help group meeting 'just to see what it was like.' Jonathan subsequently became a regular at WRSH functions, and he was nominated to its board of directors in 1992. At this time he also obtained supported housing with Waterloo Regional Homes. Jonathan claimed that the work he does at WRSH as a volunteer does indeed boost his sense of self-worth, as well as giving him a sense of purpose. WRSH has also been enriched to have someone of Jonathan's abilities working for it. Jonathan's duties at WRSH (self-appointed as some of them are) include opening the building, making coffee in the mornings, answering the phones, cataloguing and tracking information resources, some cleaning, facilitating meetings of peer support groups, filing, and photocopying, and human resources functions (e.g., hiring). Jonathan recently served as president of the board of directors at WRSH, and he is well respected throughout the organization. Through his extensive volunteer involvement, Jonathan has learned to interact more effectively with people. He is no longer as shy and reticent as he used to be. He is less fearful of attempting new tasks, which he now tackles with confidence. Jonathan's self-esteem has improved immeasurably as a result of his active participation in WRSH and other programs.

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Another major factor that has helped Jonathan is knowing that he is indeed appreciated by the very people whose lives he touches. The staff members at WRSH and the consumer/survivors who come to WRSH for support give Jonathan the credit that he is due, and this helps Jonathan greatly when it comes to evaluating his own self-worth. In fact, one of his friends put it into perspective quite succinctly: 'I think one of the happiest days in my life in terms of my relationship with Jonathan was when he sat down and figured out how much money he would be making per year if he was paid for the work that he did and ... came up with a fairly healthy sum of money and ... that's how we put a value on people's contributions, so I was very pleased to see that he recognized that the work he did was worth that much money.' Jonathan himself feels quite committed to the goals and aspirations of WRSH as a community organization. As he put it: 'I strongly believe in the values and beliefs of WRSH ... As long as I am president on the board, I intend to work in directions that those values are meant to empower other consumer/survivors.' Jonathan also appreciates the casual, relaxed atmosphere prevalent at WRSH and likes the fact that members are comfortable enough with each other to have a sense of humour. Jonathan has been able to develop several personal relationships since coming to WRSH, whereas he stated that before joining WRSH, he was unable to have a relationship of any kind with anyone. Jonathan has also recently been diligent in pursuing his education. He has successfully taken several courses through correspondence. He has not been entirely comfortable in a formal educational setting, but he has a hunger for knowledge and a strong desire for self-improvement. The courses he has taken have assisted his growing sense of selfworth. His education is informal and self-directed, though not less valuable than formal schooling. To say that Jonathan has made significant progress while at WRSH would be an understatement. It is probably more accurate to say that he has become a different person. Jonathan recognizes that he will always have mental health issues to deal with and will likely always need medication to help control them, but WRSH has enabled him to look beyond these limitations and recognize the value and positive attributes of himself as a person outside of these restrictions. Reflections on Jonathan's Story

Jonathan's story reflects the importance of the self-help organization as a facilitating factor of personal change. WRSH was a 'safe place' for

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Jonathan, a quiet 'site of resistance' (hooks, 1984) where he was appreciated and accepted. As self-help organizations are designed to do, Jonathan experienced genuine 'reciprocity' (Church, 1997; Lavoie and Stewart, 1995). He shared his gifts and weaknesses and learned from others who also shared. When we first listened to Jonathan's story, it struck us that self-help was a perfect fit for him. As his comfort and selfconfidence grew, he began to internalize the values of the organization. By the time he became president, the WRSH values were his values. Jonathan's narrative was also about empowerment, although he never mentioned the word. His focus was on participation and how he could contribute to the self-help group. He recognized that he grew and that his self was 'restored.' He truly became empowered. Finally, the selfhelp involvement was a 'springboard' for other kinds of involvements. And Jonathan took some of the self-help learnings with him. As he began to read and study again he realized he did not need to depend on formal schooling. We suspect that Jonathan's self-help experience taught him that he no longer needed to be bound by expert advice. The stories of Jonathan and other consumer/survivors who experienced self-help at WRSH confirm the centrality of consumer/survivor initiatives within the empowerment-community integration paradigm. Jonathan's story also shows the 'synergy of settings' in the empowerment-community integration paradigm. All three organizations were important in Jonathan's life at one point or another. CMHA provided initial support and an accepting environment. Waterloo Regional Homes provided supported housing, and WRSH provided self-help and volunteer leadership opportunities. The three organizations played complementary roles. The fact that they each consciously facilitated empowerment and community involvement means that consumer/ survivors do not receive mixed messages about their own process of recovery and change. Many participants talked about how two or more organizations were helpful in their process of empowerment. Changes in Participation in the Consumer/Survivor Community

Becoming involved in self-help groups was the most common form of participation mentioned within this community. Many focus group participants talked about seeing more people committed to a self-help group. Much of this participation has happened through the peer support groups at WRSH, which have grown from one group when WRSH began, to a 'network' of peer support groups today. One person empha-

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sized why this community is thriving: 'I think consumers have to depend on other consumer/survivors to get the help they need because I don't think the mental health establishment or people who've never experienced a mental illness will really understand what is meant by us.' Involvement in social/recreational activities for consumer/survivors has also increased, whether it be through WRSH activities or Waterloo Regional Homes Residents' Council social events: 'And also with Waterloo Regional Homes, the Residents' Council [provides] the time for residents to talk and see what they want to do because we have like spring events, summer events, fall events, winter events, stuff like that. And we try to get more people involved in stuff like that.' The Inter-Church Chaplaincy Project for consumer/survivors was mentioned by consumer/survivors and family members as unique area of involvement. One consumer/survivor described its role: The project I'm involved with is called the Inter-Church Chaplaincy Project. It consists at this point of a very small budget and it hires a chaplain for 15 hours a week only and it's available to consumer/survivors in the mental health system. It adds an additional dimension that the secular organizations can't get into, like WRSH, CMHA, or any of the other agencies, around faith issues, and I think there are a lot of people that miss that, so this is what we are trying to compensate for, [to reach] those people who are interested and feel the need for it. This chaplaincy program is available and this project supports people on an individual basis and within groups ... I bring it up as an example of what we can do in the community.

More recently, the Welcome Home Initiative began in the area of Kitchener, Waterloo, and Cambridge. Developed in response to the downsizing and future closures of provincial psychiatric hospitals, Welcome Home is made up of citizen volunteers, with consumer/survivors being in the majority. Peer consultation and peer support are important components of Welcome Home, as the consumer/survivor community works with other citizens to provide informal support for community integration, as well as advocacy and education about deinstitutionalization. The Inter-Church Chaplaincy Project and the Welcome Home Initiative are examples of expanding roles for consumer/survivors in the K-W community. In both cases, these initiatives function outside the mental health system and enhance community integration.

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Factors That Facilitated or Inhibited Changes in Community Participation Factors that Facilitated Change

We asked focus group participants what factors they thought helped or hindered the community participation and integration of consumer/ survivors. There were many more comments made about helping factors than there were of hindering factors. The facilitating factors that were described include the following: (a) more services and supports, (b) organizations' community-focused individual support, (c) consumer/survivors taking more initiative, (d) the receptiveness of community settings, and (e) the availability of natural supports. More Services and Supports

Generally, the most frequently mentioned change by focus group participants was an increase in the amount of services and resources available to support consumer/survivors. Staff spoke of the increased number and range of other services to which they were able to refer consumer/ survivors. Support such as self-help groups, community-based counselling, and CMHA's Access Centre were cited as examples. Consumer/survivors also acknowledged the increase of formal and informal supports available to them. The range and variety of self-help groups have all increased. One participant commented that consumer/ survivors 'are really getting the help they need.' Family members also recognized an increase in the types of support both for consumer/survivors as well as for themselves. Family members talked about the benefit of having local self-help groups as a way to prevent repeated hospitalization for consumer/survivors. They also stressed the importance of the Family and Friends self-help group for family members in educating themselves about mental health issues. Organizations' Community-Focused Individual Support

Support from organizations was seen to be a major factor that facilitated community participation and integration. Participants talked about the importance of having support workers helping them to set goals and providing 'continual' support and encouragement. One woman reflected on her support worker's role: 'She [support worker] didn't push anything on me too fast too much because she knew I could only handle so much ... she never gave up on me.'

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Staff in all organizations mentioned that they have become more open in supporting consumer/survivors to participate in community activities they choose. An example would be the support worker who described taking a person to the library. Along with increased respect for consumer/survivor choice in where they want to participate, the organizations have become less willing to organize internal social events. Consumer/survivors have thereby been encouraged to try 'nonsegregated' social events if they want social outings. The CMHA had one staff person assigned to assist people to find natural supports and opportunities for recreation in the community. Other support workers made a 'much more conscious effort to make it [community integration] happen' and resources within the organization were directed for this purpose. Waterloo Regional Homes staff received training on community integration and were encouraged to support people to participate in the community. Support by the organizations was also given in other practical ways. In some cases bus fares were paid for by the organization so that transportation would not be a barrier. In other cases, the cost of food was reimbursed. Participants noted the willingness of organizations to alter their approach to service delivery. Participants recognized that changes within mental health organizations (like those involved in this research study) helped to influence other human service organizations: 'I'm thinking of CMHA having a new director and Psychiatric Services at K-W Hospital having a new administrative director around the time that these changes started happening. They were people that were open to this [new approach to service delivery] and encouraging of this.' The improved 'coordination' and 'integration' of mental health services within Waterloo Region was noted as another facilitating factor for positive change mentioned by a number of participants. For example, one said: 'There was no coordination [among mental health organizations] and it was a mess. And there are real genuine attempts being made right now to coordinate and integrate services in mental health. We haven't reached Utopia you understand, but we're heading in the right direction.' Other participants pointed out that many family members have taken on a more supportive role in advocating with consumer/survivors. One volunteer (who is also a consumer/survivor) mentioned the important role that family members play in providing an avenue for consumer/ survivors to speak out and advocate for themselves. Finally, participants talked about service providers being more 'accepting of people with

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mental illness,' of being more respectful, empathetic, humane, and open-minded. Consumer/Survivors Taking More Initiative

Consumer/survivors talked about taking small steps on their road of recovery. Part of this recovery is understanding that setbacks are just temporary and that the future does hold promise. One family member emphasized the importance of consumer/survivors taking initiative to get out in the community, regardless of how small the steps. One participant pointed out the importance of the little things: 'His Waterloo Regional Homes worker has taken him to the library to get tapes of music, for instance. He's now got a tape recorder, you know. So he's beginning to use things like that.' Consumer/survivors mentioned the importance of getting out and being active for their own recovery process. Typically, many felt that they needed to participate. As one person emphasized, 'I've always tried to be active, but when I was almost not able to, it didn't feel good.' Part of the encouragement for taking initiative has been the example and encouragement of the other consumer/survivors. Two comments exemplify this point: 'A fellow consumer/survivor told me that he was involved in a house church and suggested it might be a good thing for me.' And, 'Before I became involved in WRSH, I had been a consumer/ survivor all my life practically, though I had never heard of the term "consumer/survivor." And I had never heard of CMHA or any other agency. So through WRSH I have learned a lot about the mental health system. I've learned also that the community is so ignorant about mental health issues ... So once you find these things out, you start thinking, "What can I do about it?" So one place that's important to me is my church. So there's a place I can do something.' WRSH was mentioned by many consumer/survivors as an important vehicle for change. Typically, one participant reflected on the history: 'I've noticed the development of that community in the '90s. During this period, those folks got together and defined themselves as a community. That's been very exciting to watch and be a part of. I think that there have been ongoing changes within that community as they find their voice and explore their vision and their potential and things like that. A lot of growth. I think in a small sense, a realization of dreams, as well, a real camaraderie has developed in the '90s.' Consumer/survivors have become 'more willing to publicly identify themselves,' more 'open to discussing mental illness,' 'aren't hiding like

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they used to hide,' and are 'starting to stand up for themselves more than we used to.' Consumer/survivors are also willing to support each other more now than in the past: 'I find that everybody is helping everybody in the community and they are all working together now. They weren't like that before.' The ReceptiIveness of Community Settings

Participants acknowledged that certain settings within all three levels of community (i.e., community-at-large, human services, and consumer/ survivor community) have been very receptive to consumer/survivor participation. A few consumer/survivors talked about how comfortable they feel in settings with which they are involved. One said: 'Sometimes I do tell people though [about my mental health issues] and it's amazing how many of them are interested, or they'll say, "Well, I felt like that for a while and I didn't know what it was." I don't think it's a bad thing anymore to say.' Another change many participants noted is that consumer/survivors are treated with more respect in our community. Several consumer/survivors spoke about being 'accepted as I am,' feeling more 'support,' and not needing to feel 'ashamed' at work, with family, or with friends. One staff person noticed that consumer/survivors are also being valued for their personal strengths and resources more so now than in the past: 'I think that during the 1990s there has been much greater value given to the consumer/survivors and the work that they are able to do in supporting others with mental health issues.' Although participants still acknowledged the existence of negative stigma in our community, many felt that it was lessening. One consumer/survivor noticed that people do 'react differently' in a positive way. Other consumer/survivors thought that people are realizing that they 'don't have to be scared of us' and are becoming 'much more accepting.' The following comments illustrate these points: T think there isn't as much of a stigma attached to people who have mental health [issues] ... because it's becoming more noticeable, you know.' And, 'I think it's changed in that there's not so much of a stigma attached today in being a consumer/survivor and a lot more people are realizing consumer/survivors can have a job, can go to school, can do well pretty well anything.' Kitchener-Waterloo is probably similar to other communities of its size. Research shows that attitudes towards disability are improving in North America, although there continues to be a wide diversity of atti-

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tudes among the population (Page and Day, 1990). Some writers argue that presence and participation in the community are the best ways to 'educate' the public about the positive side of 'differences' (McKnight, 1995). Our research showed that people's perspectives on changes in community acceptance were mixed. One consumer/survivor expressed a common sentiment: 'I don't think it's as bad now. I think people are more accepting of people with mental illness, because people are more aware of "us" [consumer/survivors]. I hate to put it that way, but they are. They're more aware of us in the community ... If they are more aware of us, they have to deal with us even though they don't want to sometimes.' Other participants talked about community associations such as churches being 'more open about recognizing people have differences and different limitations.' Others talked about a perception that the mental health movement is 'lagging' behind other disability groups when it comes to being accepted within the community. Being accepted as full members within the community was described as a 'long road' by one participant; a road which is just beginning: 'There is a great deal of ignorance out there and that is always our goal to try and affect change there. So, I think that is something that a lot of us are working toward. Just in general, the movement toward integration, rather than providing segregated services for people, wanting to integrate into the community ... So that kind of integration, hopefully, is going to have an influence on the community, that when we're out there and when we're seen, that the discrimination will lessen.' This reduction in stigma also was seen to apply to consumer/survivor self-help settings. As one woman noted, ' [Consumer/survivors are] more willing to go to selfhelp now. I think there is less stigma for them in that setting.' The willingness of mental health organizations to involve consumer/ survivors in planning their supports has also helped to increase participation: 'I think of many, many people we support who are involved on committees and boards, what have you ... And again I think it's the understanding and the respect and the consumer movement. That they have a voice that needs to be heard.' Availability of Natural Supports

Natural supports, such as families and friends, were seen to be another helpful factor in increasing community participation. One man emphasized it graphically: 'So I think part of being able to participate or access has to do something with how many people you have standing behind

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you and saying, "You can do this."' The role of family was seen as vital for many people: 'So this is where a family can be helpful. If the family says, "This is what he's interested in. You know, this is what he's done in the past" ... the family can help the worker and the worker can help the individual.' Sometimes the encouragement came from friends, at other times from other community members. One person talked about the support a chaplain has provided: 'He has a fairly good friendship going with this consumer/survivor who's doing well enough, for instance, to hold down a job but who understands the nature of the illness. And he's also very good in helping my son to feel at home.' Other facilitating factors were mentioned, such as changes in the political context in the early 1990s. Some were seen to benefit consumer/survivors and their involvement in the community (e.g., provincial government initiating the Community Investment Fund for consumer/survivor self-help organizations; increased funding for other mental health organizations, and an active non-profit housing sector). In terms of community change designed to facilitate community integration, consumer/survivors understood the importance of community support and local initiatives. They also recognized the role that provincial government policy played in ensuring that appropriate resources were made available to communities. Factors That Inhibited Change

Participants talked only briefly about factors that they thought hindered community participation. The main factors mentioned were (a) experiences/feelings of safety and protection by not participating, (b) continued stigma in the community, (c) financial constraints, and (d) personal issues and personal history of consumer/survivors. Experiences and Feelings of Safety and Protection

Mental health organizations have traditionally organized segregated activities designed exclusively for consumer/survivors. For many consumer/survivors this is where they feel safe and protected. Staff and family members stated that these feelings of safety and protection actually hindered participation in other community settings. Lack of experience with integration breeds caution: 'Well, the hindrance comes from inside and out. He [consumer/survivor] doesn't feel comfortable in large groups. And he doesn't mix enough really with people who are

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not consumer/survivors.' Staff and family members thought that more and 'different' support was needed in order to encourage consumer/ survivors' integration within the broader community. Continued Stigma in the Community

By far the most frequently mentioned factor hindering community participation was the stigma associated with mental illness. Participants from all stakeholder groups spoke of'tremendous stigma,' 'misinformation,' 'stereotyping,' 'labelling,' and a 'climate of ignorance' within the general community-at-large. The fact that stigma still exists seemed to underlie the recognition of the need for continued improvement. One staff person actually saw the Ontario public as becoming 'less tolerant for people having hard times,' which included consumer/survivors. The mixed messages about changes in stigma were well summarized in a comment from this consumer/survivor: 'Because if you're in a neighbourhood and some people find out that you've suffered some kind of a breakdown, some people just accept you as the regular you, and some of them treat you like you're a real weirdo and they treat you really strange.' Although community acceptance is improving, there was agreement that 'it's still taking a lot to change that stigmatization.' One participant emphasized: 'There's still a long way to go on the part of the general membership in the community accepting and including them as members, if you will, in the community.' Participants spoke of the fear that the general public has about mental illness — fears based on myths, misinformation, and an unwillingness of people to try to understand the experience of consumer/survivors. One man explained the dilemma: 'People can't understand how I can be sitting here fine today, and tomorrow I might be having problems that make me look very different from what I look like today. And it gets labelled with a lot of things like behaviour and attitude.' Financial Constraints

Financial constraints both for the individual consumer/survivor and the mental health organization were another major hindering factor. Often having limited financial resources, consumer/survivors find it difficult to participate in community activities requiring money. Transportation costs further add to the already tight financial squeeze. Funding cutbacks to mental health organizations made it difficult to support consumer/survivor participation as much as would be desired.

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Personal Issues and Personal History Sometimes the lack of community participation was attributed to the personal issues and personal history of consumer/survivors. Some consumer/survivors were thought to not want to participate or were unsure of where to participate. 'Social awkwardness' made it difficult for others to participate. Sometimes the withdrawn personality of the individual consumer/survivor was seen to limit participation. The trend towards non-segregated activities was 'too much, too fast' for some consumer/ survivors. This pressure to integrate was met with resistance by some consumer/survivors. Other Factors Inhibiting Participation As a related issue, participants also talked about conflict within the consumer/survivor community. A few saw that consumer/survivors have in fact harmed each other. One consumer/survivor thought that some of the 'successful' consumer/survivors have forgotten 'where they come from.' Another spoke of the 'abuse' of consumer/survivors by fellow consumer/survivors. Recent political changes have inhibited community change. The previous NDP government's 'nickel and diming' of people on Family Benefit Allowance was not well received. Other participants talked negatively about the more recent political 'swing right' when the Progressive Conservative government came into power in Ontario in 1995. Funding cutbacks to human service organizations, reduction of social assistance benefits, and the dismantling of non-profit housing threatened the community gains consumer/survivors had made earlier in the decade. One consumer/survivor leader summed it up: T think the early 1990s was definitely a growing phase in the community for the area of mental health, but with the present Harris government and its accompanying cutbacks, this has fallen a bit backwards because of funding cuts. The ideas have been planted [that changes] cannot always be achieved due to funding cutbacks.' Finally, participants talked about a number of limitations in supports and resources available to consumer/survivors. A particular concern was the perception that there is now less time to recuperate within the mental health system: 'Years ago when I was getting help [at the hospital] there was a lot of patience and they gave a lot of time to recuperate whereas now, in my last illness, I felt like I was just shoved out, that they didn't give me time to get back on my feet, that I had to be "out there" and I wasn't ready and it was really upsetting.' Other negative changes

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included hospital admissions being harder to come by and a decrease in support for children in the school system with mental health issues. One consumer/survivor observed that services had been put into place for their support, but now they were being ripped out from 'under our feet.' Community Support and Integration and the Empowerment-Community Integration Paradigm As we conclude this chapter on community support and integration, it has become clear to us that personal changes in the lives of consumer/ survivors reflected changes in the way 'support' has changed in the Kitchener-Waterloo community. At least two things have created important 'mediating structures' for community integration: the movement of two formal organizations towards community-focused individualized support and the addition of WRSH to the community. Mediating structures can be defined as those organizations or structures standing between the individual in his or her private life and the institutions of public life (Berger and Neuhaus, 1996). We know that the institutions based on the traditional paradigm have neither been interested in nor capable of building community or facilitating integration. Smaller, community-focused efforts such as those we have described in KitchenerWaterloo have been required. In Chapter 2 we noted that 'community and inclusion' were becoming central tenets of all disability movements throughout the world (Carling, 1995; Condeluci, 1991; O'Brien and O'Brien, 1996; Schwartz, 1997). We found almost no references to 'inclusion' in our interviews and stories. Most people said that the degree of community participation had increased a great deal in the past few years, but most people admitted there was still 'a long way to go.' As noted in Chapter 6, 'conscious' strategies are required to make the mediating structures work effectively. We can say the same about 'inclusion.' The CMHA hiring a staff person to facilitate integration is such an example. The service principles and the staff training within Waterloo Regional Homes on 'community' is also an important effort in this direction. In reflecting further on the empowerment-community integration paradigm, we now have more insight into the role played by community support and integration. As we have seen, support that is both practical (helping people link to community) and open (involving listening and respectful problem solving) can provide opportunities for community

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involvement. Support workers have had to reframe how they work, now seeing their role as being 'facilitative' of personal empowerment and community integration (Constantino and Nelson, 1995). This partly has involved helping people to build and nurture their support networks. This is challenging work that is being accomplished in many small ways, but in our view requires more intensive focus. Unfortunately, even though community support and integration have increased in this community, there continue to be many consumer/survivors who have very few relationships and a limited sense of community in their lives. As many participants mentioned, better access to valued resources, which is the focus of the next chapter, would go a long way towards enhancing community integration.

Chapter Ten

Social Justice and Access to Valued Resources

We live on a lot of staple things like spaghetti and rice ... because we just don't have any choice and I find that there are some illnesses cropping up in the kids like being tired and fatigued all the time because they are not eating properly. So, then you happen to waste money on vitamins to try to boost them and you 're not winning either way. It gets very frustrating to financially support them and try to feed them without them getting sick. Jan, a consumer/survivor

This quote from Jan, a consumer/survivor who we interviewed for this research and whose story follows later in this chapter, brings home the grave issue of poverty, which many consumer/survivors face. The value of social justice and access to valued resources suggests that the other values already explored need to be accompanied by improvements in the concrete living conditions that contribute to consumer/survivors' quality of life (Nelson et al., 1995). Examining the resources that consumer/survivors can access draws attention to the fair and equitable allocation of resources in society (Prilleltensky, 1994; Prilleltensky and Nelson, 1997). As we discussed in Chapter 2, people supporting the empowermentcommunity integration paradigm advocate for access to normal jobs, education, and housing that are available in the community (Carling, 1995; Drake et al., 1996; Hogan and Carling, 1992; Lord et al., 1998). Access to these resources is critical for psychiatric consumer/survivors, many of whom live in conditions of poverty, unemployment, and poor quality housing (Capponi, 1997). Do people gain increased access to affordable and desirable housing, to an adequate income, and to meaningful employment and education when the community mental health

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organizations that support them try to make a shift to the values of the empowerment-community integration paradigm? This is the question that we address in this chapter. We begin with a summary of some of the overall trends in the findings regarding access to resources. We then shift to an examination of specific changes and the factors facilitating and inhibiting those changes. Following a brief discussion of the findings regarding changes in access to resources, we conclude by noting some themes regarding all of the individual changes described in this section of the book. Changes in Access to Valued Resources Of the three areas of individual change, access to education, employment, income, and housing was the one in which the least amount of change was reported. This is not so surprising when we consider that access to resources is a matter of social justice. Education, employment, income, and housing are valued not only by consumer/survivors but by society as a whole. Change here means that the more privileged members of society must be willing to give up some control over these resources. This has not happened willingly, as one consumer/survivor explained. There is change, he said, 'because people are going out there to challenge it, but I can't say the world has turned around.' In the view of participants, there has been uneven progress in education, employment, income, and housing. More positive than negative changes were noted for employment and education; comments regarding changes in housing were mixed (roughly half were positive, the other half negative); and comments regarding changes in income were seen to be the most negative (few positive changes were noted regarding income). These individual findings are not surprising, given the policy context we described in chapters 4 and 5. For example, there had been some policy shifts in housing during a period of coherence, 1985 to 1994, which included an expansion of supported housing. In 1995 cutbacks and a de-emphasis on non-profit housing left many consumer/ survivors concerned about their futures during a period of retrenchment. Our individual findings in this chapter reflect this uneven policy history. Other provinces and states have also found that this lack of coherence between provincial or state policy and practices of local organizations limits the possibility that the empowerment-community integration paradigm can be fully implemented for individuals (Dewees et al., 1996; Macnaughton, 1992; Pulice et al., 1995; Simmons, 1990b).

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We also found differences in what organizations and stakeholder groups said. Canadian Mental Health Association (CMHA) participants were by far the most positive of the three organizations. Comments from participants who were part of Waterloo Region Homes and Waterloo Regional Self Help, on the other hand, were roughly equal between positive and negative changes. Staff and managers were more positive in their comments than the other stakeholder groups (consumer/survivors, family members, or volunteers). We shall summarize the focus group findings according to each of four areas: (1) education, (2) employment, (3) income, and (4) housing. These changes and the factors facilitating and inhibiting these changes are summarized in Table 10.1. Types of Changes in Access to Valued Resources Changes in Education Consumer/survivors talked about some of the positive changes they personally experienced in the area of education. A number of people mentioned that they were presently going to school, taking more courses than previously, and that they felt more 'outgoing' as a result of their school experience. One consumer/survivor had this remarkable testimonial: 'I have gone back to school and found part-time work and am no longer dependent on the government for money. I also volunteer at CMHA along with other consumer/survivors.' Other focus group participants commented on their observations that consumer/survivors are enrolling in school programs: 'I see some of our [WRSH] members finding their way to school, through the support of employment programs or supported education programs and that.' And, 'I see a lot of people returning to school ... adult education or within colleges, the universities ... a lot of people getting their high school diplomas lately, it's really neat.' Participants also noticed an increase in supported education programs to help facilitate the return to education: 'A lot more people are getting access to education where there have been more supportive educational systems.' Some participants, on the other hand, suggested that there really was little or no change regarding access to education for consumer/survivors. Overall, people were generally more positive about educational opportunities, in part because boards of education, colleges, and universities were now offering more courses and learning opportunities

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Table 10.1. Changes in access to valued resources and factors that facilitated or inhibited changes* Identified changes in consumer/survivors

Factors that facilitated changes

Factors that inhibited changes

• More people accessing education • A few more people working • People continuing to struggle with lack of income • More people accessing housing (1 985-94) • Fewer people accessing housing (1995-8)

• Support from the organizations • Examples of other consumer/survivors • Advocacy • Other valued resources

• • • •

Limited income Government cutbacks Medical issues Lack of confidence and fear • Limitations of mental health organizations

*The identified factors do not relate to separate individual changes but reflect people's overall experience related to individual change.

than in the past. Participation in these valued resources is an example of the empowerment-community integration paradigm in practice. Changes in Employment

Participants in the focus groups identified some improvements in the employment situation for consumer/survivors. It was often noted that some people are getting real jobs rather than 'segregated jobs.' Usually, however, these comments were tempered with the recognition that overall these improvements in employment have been minimal. This reality was expressed by many: 'And I'm seeing some increased employment it's still not -1 think if anything people are still getting very menial positions, minimum wage.' Participants noticed that the attitude some consumer/survivors had towards employment has changed. A definite increase in the interest of consumer/survivors in obtaining employmentwas indicated: 'I think there's more interest on the part of some consumer/survivors in getting paid employment both in the mental health system and in other jobs too.' And, 'What I have seen is a change in people's desire for employment. It's one of the, I guess, the major things - the most frequently talked about thing consumers identify as wanting is employment opportunities.' Another major change with respect to employment for consumer/ survivors has been the rise of supported employment and community

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economic development programs. Many participants acknowledged the existence of these programs and commented on their positive impact for employment prospects. One said that 'the employment opportunities are not readily forthcoming for people with mental health issues ... I guess in terms of employment though, there has been some positive movement in terms of self-help movements. I guess I'm thinking of economic development opportunities at the local level with a couple of organizations.' Another said: 'So through the ... supported employment program offered by another local organization, we've seen some changes to [employment]. But I think we've got a long way to go in terms of employment opportunities.' Sometimes it was the support from a support worker that made the difference between being employed or not. These comments exemplify the importance of support: 'When there was a part-time job at [a certain employer], [my son] talked to the support worker. She encouraged him to go to apply for it. So she gave him that support too, you know, to go for it ... And I think that really helped.' And, 'The support has always been there. All these factors are empowering, helping me to continue to participate in the community, as well as helping to keep my income and employment more stable than they might otherwise have been.' Changes in Income

Compared with other areas, participants noted the least positive changes in income. Many consumer/survivors spoke about 'running out of money' and not being able to afford to do things that they would like to do. The recent cuts to people on welfare have had an impact on the consumer/survivor community. The restrictions of limited income were reflected by the lived experiences of consumer/survivors themselves: 'I run out of money usually in the middle of the month so I'm going by on air, you know. My nutrition ... is going to affect my mental health. The leisure activities I can afford to get involved in are limited.' Or, T'm on welfare and living is really hard and a big hindrance is Mike Harris [Premier of Ontario] and that is really bad.' One participant said: 'I'm not on subsidized housing, and my rent is going up but my income isn't going up, so I feel disempowered there.' Many consumer/survivors expressed concern over the possibility of losing their disability status through the Family Benefit Allowance (FBA). Concerns about the present limitations of FBA were also expressed: 'We're just worried that we could lose our FBA because of

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the fact that our disability is a hidden disability.' And, 'Because of the limitations that they're [consumer/survivors] allowed to earn and still be on family benefits, I've always believed that many of them won't be able to do much better than a part-time job.' On the positive side, a small number of consumer/survivors talked about having more money now then they did before. Their increased income was usually as a result of now having a job or a better paying job. Changes in Housing

The changes mentioned by participants with regard to housing were mixed. Roughly half of the comments were about positive changes, and the remaining comments referred to the housing situation as staying the same or deteriorating. Positive comments largely focused around the increase in supportive housing units, mostly built in the late 1980s and early 1990s when government funding was available. More units meant different housing options were available from which consumer/ survivors could choose. Many people spoke of experiencing 'less discrimination in housing' and of appreciating the housing registry that Waterloo Regional Homes keeps. One staff member noticed that some consumer/survivors are dealing with their housing situations in more creative ways: 'Although I have seen some good growth in my particular job where a lot more people now are sharing market rent units and this way they pick their own roommates or who they want to be with and those relationships are actually working out better.' An important part of the positive comments about housing was the appreciation of more flexible individualized support discussed earlier. The negative aspects of people's housing situations usually were the result of changes that have occurred in the mid- to late 1990s: no new affordable housing units being built, plans to amend the landlord and tenant act and rent control, and less subsidized housing available. Consumer/survivors expressed concern: Tn terms of housing, there haven't been a lot of positive changes because there haven't been any new developments. They're repealing some old legislation in terms of rent control and that's going to be an issue for people who already can't afford rent.' And, 'Well, I'd say that it's becoming a more difficult resource to access for reasons like the government is getting out of it.' Participants also talked about how few local rental units are available in the affordable or subsidized housing market: 'Housing has definitely decreased in the last year and I think it will continue to do so. I think it's going to be

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really tough to get any kind of affordable or subsidized housing within the next few years.' One participant said: 'Less subsidized housing. You have to wait and wait to get put on the list. And even when you are put on a list, there are places that come up and you don't want to go there because it's out of your reach.' Another said: 'But now there's a long waiting list and there's very few - seventy, I believe - bachelor apartments on the Ontario housing list around here. Of course, they're all full.' Limited financial resources means that many consumer/survivors are limited in their choice of housing. 'At the same time, and I have a real struggle with this ... the fact that the income, especially for people on General Welfare, they get $325 housing allowance which limits their options greatly and even if they don't want to share, they have to. There is no other way around it.' The Power of Self-Help and the Limitations of Poverty Jan's Story

Jan is a middle-aged woman who has three children. She has had longterm mental health problems and because of this has spent much time in treatment at various hospitals. Much of Jan's life has been characterized by abuse, and within the past few years, Jan's friends and family described her as being depressed to the point of being suicidal, unhappy, and isolated. Most of her days were spent in bed, and Jan had few friends or other means of outside support or contact. She did not work outside the home and besides the hospital, Jan had no other experience with mental health agencies or services in the community. Because her marriage had ended, Jan endured feelings of guilt and uncertainty. All of this led to frequent re-admissions to hospitals. Approximately three years ago, while in the hospital, a friend referred Jan to Waterloo Region Self Help (WRSH). This friend thought that she might wish to become involved in this organization because of her interest in crafts, as there was a craft group at WRSH. Jan visited WRSH with her support worker and was introduced to the setting and the people. Since that first visit nearly three years ago, Jan's life has changed tremendously. She has become involved in WRSH in several different ways. For example, Jan has been very involved with doing crafts and has created her own inventory of marketable products, something that she is very proud of. Her support worker remarked that she is 'in her element when she was ... doing these crafts, it made her feel like she was accom-

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plishing something,' even though her crafts bring her very little money. Also, while at WRSH, Jan volunteers to do baking and cooking, and she helps with the newsletter. In addition, she takes part in many of the social and recreational activities that WRSH offers. One of Jan's favourite things to do while at WRSH is to greet new people because she enjoys making them feel comfortable: 'I want them to feel the same way I did when I first joined and feel like it's a good place to come to.' Currently, Jan has been hired on as a part-time paid staff member at WRSH, a job that she finds very rewarding, but also very stressful. Jan remarked that she becomes 'very nervous, and scared and stressed with it ... there's been times, I've been thinking of opting out of my job, but then something keeps bringing me back.' Jan's involvement with WRSH has been helpful for her personally in many ways. She has become less afraid of people and has made some good friends both inside and outside of WRSH. These friends have offered support and encouragement, and Jan has become happier, more confident, more outgoing, and better at communicating. She has also indicated to a co-worker that she feels a real sense of community at WRSH. Jan believes that WRSH gives her a reason to get out of bed in the morning and that the organization has provided her with a purpose as well as some structure to her day. Her friend commented that ' [WRSH] is giving her something to come to each day, where she can be productive and accomplish something and have a better feeling of selfworth ... [this] is absolutely essential for her.' This is certainly a change from the woman who was sometimes too afraid to talk to people she didn't know. In the community, Jan is becoming more involved and is meeting new people because of this involvement. For example, she is involved with a group that supports young women, and she is now also attending a local women's group. In the future, Jan may take some of her experience in ceramics and crafts and lead this group in trying some projects for themselves. In essence, Jan's involvement with WRSH has led to a number of improvements in her quality of life. She has taken more control over her life and demonstrates more responsibility and self-determination and better coping. There are some things that continue to make life very difficult for Jan that are quite simply out of her control. Jan lives in a state of poverty and feels very unable to change this. Because she has her children to take care of, the stress of not knowing where their next meal will come from is sometimes overwhelming.

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Also, because Jan has an older child living at home, she is not able to receive assistance for this child, and in fact, boarding fees are subtracted from her overall assistance. In essence, upon her child turning eighteen, Jan has actually ended up with less money coming in every month. Furthermore, although Jan would like to move into better housing, she simply cannot afford it. She has checked with many subsidized housing agencies, but because of the long waiting lists, she is not able to find anything to meet her immediate needs. As Jan pointed out, ' [The waiting lists] are all a year and a half to two years ... [but] you don't know in a year and a half to two years what you're going to need so the housing is just not very good.' This inability to provide a better lifestyle for her family causes a lot of guilt for Jan, even though she knows that she is doing the best she can. To add to all of these difficulties, Jan also continues to have problems with her symptoms, and despite all of the positive changes that she has been through, her mental health is still relatively unstable. She does have strong feelings about the government: 'I find it very frustrating because I feel like we're fighting at times a losing battle, that the government is just sort of stomping us down and cutting so many things.'Jan and other members of her family believe that her personal changes have been supported by the encouragement of her friends at WRSH and her peers and family, and her nature which is that of a survivor. The main hindrance to full self-determination and participation that Jan continually faces is her lack of concrete resources, a factor that she attributed to the policies of the government. Reflections on Jan's Story

Jan's story shows both the power of self-help and the limitations of not having access to valued resources. Jan's story also illustrates there is only so much one can do without money in our society. The tragedy of poverty for people like Jan is the effect on children. It is challenging enough for an adult with a mental health problem to raise children, but to add the dimension of poverty poses a double jeopardy. Jan's poverty is the reality for many consumer/survivors (Capponi, 1997), and it shows the importance of material resources to maximize the effectiveness of the empowerment-community integration paradigm. Despite the gains Jan made through her involvement with WRSH, the lack of resources (income and housing) made it impossible for her to experience a positive quality of life for herself and her children.

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Factors That Facilitated or Inhibited Changes in Access to Valued Resources Factors that Facilitated Change Support from the Organizations

By far the facilitating factor most often mentioned as improving access to the resources of education, employment, income, and housing is the support received from the organizations. Support was received through specific programs within the organizations participating in this study. The housing registry at Waterloo Regional Homes, the supported employment program at CMHA, and WRSH's community economic development initiative were all mentioned by participants: 'Waterloo Regional Homes keeps a housing registry. A housing registry is landlords who own properties and are prepared to rent to consumer/survivors. And that's a good thing.' Or, 'So through the ... supported employment program offered by another local organization [CMHA], we've seen some changes to that.' One person observed that 'we do recognize that we should try and find ways for people to increase their income. And so our [WRSH] economic development is a result of that. And that was part of the original vision but never got implemented.' Support was also received through workers who lent encouragement to consumer/survivors or helped them through a personal planning process. Participants talked about the importance of having 'job coaches,' of receiving encouragement from their support worker to apply for work or to go to school, and of the benefit of having self-help groups. Job openings for consumer/survivors within the three organizations were another way that the organizations served to help the employment situation of consumer/survivors. Finally, one family member spoke about a loan fund that family members set up to help all people supported by Waterloo Regional Homes. As shown in the literature on various disabilities, supported employment and supported housing require individualized approaches as well as creative planning and implementation (Carling, 1995; O'Brien and O'Brien, 1996; Ochocka, Roth, and Lord, 1994). The Example of Other Consumer/Survivors

Another facilitating factor mentioned is the example of other consumer/ survivors. Participants mentioned that the successes of some consumer/ survivors help to 'pave the way for others.' Seeing other people 'do it' was inspirational for other consumer/survivors and made them believe that

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they could do it as well: 'I think thatjust the idea of consumers, of people being part of a marketplace has caught on ... And by virtue of being in a group, in a community and talking about that experience, it does influence other people you know.' Consumer/survivors could see changes in others and themselves that made improvements in their lives possible. Increased self-confidence helped one consumer/survivor return to school. Another had this to say about his changes in motivation and self-esteem: 'It had to be myself, changes in myself. The attitude is in my thinking and trying things and not being scared to try things and accept things.' Advocacy

Another facilitating factor is the advocacy of other people. Participants mentioned that the advocacy carried out by a number of groups has served to improve the situation for consumer/survivors. WRSH's advocacy committee was cited as an example that looked into the issue of pensions. Research on the high rate of unemployment among consumer/survivors also created awareness of this important issue. The K-W Housing Coalition in the 1980s is another example of community advocacy that influenced the development of supportive and supported housing in the region (Nelson, 1994). Support received from other resources was another facilitating factor that was mentioned. Some participants talked about the support consumer/survivors have received from the government through its FBA start-up funds, its supported employment program where employers do not incur financial risk when hiring consumer/survivors, and the Canadian Pension Plan allowing for some income prior to deduction. Other participants spoke of the support that community people gave to consumer/survivors. Some employers were willing to 'give people a chance' and were seen to be supportive once they had personal contact with consumer/survivors: 'If you want to do something it's going to cost money for educating. It's sometimes good in a sense, but if you can't pay - like say you go for a course and you need to pay a fee, you can't take the course or you apply for OSAP or whatever, but then you have to pay them back but you're on welfare or disability. How can you pay them back?' Other Valued Resources

Another facilitating factor is the inter-relatedness of employment, income, and housing. Improvements in one area helped to make

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improvements in the other area more feasible. For example, by combining the income of two consumer/survivors, preferred housing was more easily accessible. Other consumer/survivors talked about having a job which made it easier for them to live in 'better' housing. Factors That Inhibited Change Limited Income

Limited income was the main factor that was seen to hinder changes in access to valued resources. Participants talked about the barriers in accessing education, employment, and housing because of insufficient income. Reductions in welfare and the limits placed on earnings for those on disability pension have placed many consumer/survivors in a financial situation that limits their options (Capponi, 1997). One person's comment was typical of the concern: 'Dollars are a big hindrance in supporting people that way. We could do a lot if we had the money.' The fact that many consumer/survivors are unable to access employment is a barrier to higher income. Factors that hinder employment included the high unemployment rate, the competitive marketplace, the lack of consumer/survivors being hired within mental health organizations, the instability associated with mental illness, and the gaps in resumes: 'Before we get into education or employment, we have to make sure that we have reached a point where we can handle it. If we haven't, then it's not even worth trying because we won't get very far.' And, 'Like I haven't worked. So there's my resume with next to nothing on it... So I won't stand a chance to get a job, they can choose whoever they want... There's too many people looking for work that there's even less chance for a consumer/survivor to get a job.' One staff person thought that lack of money prevented many consumer/survivors from enrolling in courses: 'Traditionally consumer/ survivors have screwed up in the workplace. Consumer/survivors can't handle stress and there is stress in the workplace. That's the hurdle we're up against.' Government Cutbacks

Lack of government support was another factor hindering consumer/ survivor access to education, employment, income, and housing. As introduced in Chapter 5, lack of government support was seen in a number of ways. For example, participants saw the withdrawal of public housing money as 'seriously impacting' housing options. The cancellation of

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employment equity and subsidized employment programs has made access to employment more difficult. Income regulations for those on social assistance have created a 'disincentive' to work. Cuts in welfare and the shelter subsidy have made it difficult to 'rent decent housing on what they're [consumer/survivors] allowed.' One staff person listed a number of changes by the current provincial government that have inhibited access to valued resources: 'Income has changed from more of a systemic level where one ministry is requiring that people apply to the federal government for income. Where the FBA is telling people that they have to apply for CPP ... The other significant change with access to income is that it's taking longer to process family benefits applications and ... General welfare assistance has been reduced.' Certain broad societal factors have also dampened the employment prospects for consumer/survivors. Recently, the provincial government repealed the employment equity legislation that listed people with disabilities as one of the designated groups. This legislation was designed to help designated groups overcome systemic barriers to employment. With the legislation repealed, some people thought that prospects for employment have decreased. Other participants mentioned that jobs were hard to come by in the 1990s for anyone, whether one is a consumer/survivor or not. Medical Issues

Focus group participants also commented on medical issues as inhibiting access to valued resources. One family member talked about the damage a particular drug had on a person's ability to read which 'limits things like education and employment.' Other participants talked about how side-effects of medication affect employment opportunities. One consumer/survivor mentioned that the reluctance of doctors to complete medical forms may limit the income that consumer/survivors would otherwise be eligible for. Lack of Confidence and Fear

For some consumer/survivors, lack of confidence and fear hindered them from reaching their potential in education, employment, and housing. Fear of failure, intimidation, and the lack of support from family and friends limit the extent to which some individuals will attempt to access education, employment, and housing. For some consumer/survivors, staying in a sheltered housing situation for very long periods may make it difficult to move on to integrated housing. In the case of

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employment, one staff person had this to say: 'We've [service providers] told them for the last twenty years you can never work and now we've changed our mind[s].' Limitations of Mental Health Organizations Another factor inhibiting consumer/survivors' access to valued resources mentioned by participants relates to limitations of mental health organizations in providing support. Lack of educational supports within organizations and the unrealistic expectations of staff were examples. Long waiting lists for housing also do not help consumer/survivors to access the type of housing that they want. Finally, focus group participants also talked about the negative impact of stigma in accessing resources, particularly employment: 'I really think this problem of stigma in the community in general still presents a problem in getting a job.' Social Justice, Access to Valued Resources, and the Empowerment-Community Integration Paradigm As we conclude this chapter on social justice and access to valued resources, it has become clear to us that there have been fewer changes in education, housing, and income than in other areas of the empowerment-community integration paradigm. While the outcomes have been limited, especially in recent years within a changed policy framework in Ontario, it is significant to note that consumer/survivors have been very positive about the changes that have occurred. We also found that the processes utilized by the three organizations have reflected the values of the empowerment-community integration paradigm. At Waterloo Regional Homes, for example, more resources to support people who want 'normal' housing in the community became available after the organization's change process (Carling, 1995; Drake et al., 1996). Consistent with the empowerment-community integration paradigm, consumer/survivors 'choose, get, and keep' the type of home that they prefer (Hogan and Carling, 1992). Similarly, employment initiatives at CMHA and WRSH reflect the values of empowerment and community integration. We have learned that access to valued resources is a critical element for enhancing the quality of life of consumer/survivors. CMHA/ National's revised Framework for Support (Trainor et al., 1999) also pro-

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motes access to resources as a key element of the new framework. As we have noted, many consumer/survivors in Kitchener-Waterloo struggle with conditions of poverty, unemployment, and poor quality housing. Participants described for us the change in their quality of life when one or more of these conditions was changed. In Jan's story, we also identified the limitations imposed by poverty, even when other aspects of life were developing in a constructive manner. This chapter has focused on changes in access to valued resources for individuals, and our findings show the importance of social policy when considering social justice and access to resources. In the traditional paradigm, policy changes were centred in mental health legislation. In the empowerment-community integration paradigm, we have learned that the principles of social justice and access to resources demand that policy changes encompass other areas that impinge on equity and community. The fact that fewer people in the past three years are accessing housing and support is a clear reflection of provincial housing policy. The fact that fewer accommodations have been made in employment reflects the elimination of the Ontario employment equity program. There are definite limits to the capacity of community organizations to facilitate positive, equitable outcomes for consumer/survivors. Government policy matters, and in the empowerment-community integration paradigm, policy changes must encompass employment, education, housing, and income. Consumer/survivor satisfaction with the directions of the empowerment-community integration paradigm points to the need for policy reform that is consistent with individual dreams and preferences as well as with the principles guiding progressive community organizations. Themes and Conclusions Regarding Changes in the Lives of Individuals In Kitchener-Waterloo the lives of individuals with serious mental health problems have improved in recent years. In the last three chapters we have described the changes experienced by consumer/survivors who are associated with the community organizations we studied. The particular outcomes for individuals differed widely, but in general, personal empowerment increased the most, community integration the next, and valued resources the least. Several themes emerge from our interpretation of the changes in the lives of individuals.

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Key Themes Consumer/Survivors in K-W Have Experienced Increased Voice, Choice, and Participation

In all the settings we studied, many consumer/survivors identified increased confidence, control, and independence as key elements of their personal changes. Three components seem to be central to these 'empowerment' changes: voice, choice, and participation. In the stories we shared, several consumer/survivors talked about 'finding their voice.' A breakdown or crisis had previously left many powerless and part of medicalized mental health systems. Connecting with community organizations who were dedicated to the principles of empowerment enabled individuals to begin to reclaim their true selves. Reclaiming voice requires a safe community and support to participate (hooks, 1984; Starhawk, 1987). Many consumer/survivors talked about these principles in their own way. The safe community may have been a peer support group at WRSH, housing obtained through Waterloo Regional Homes, or a support program at CMHA. Having personal choice over what type of housing or what type of group was a very important part of this process. Just as others have found (e.g., Zimmerman and Rappaport, 1988), participation was also part of empowerment for everyone with whom we talked. Writing about women and governing in our society, Elizabeth Jane way (1980) defined the relationship between those who govern and those who are vulnerable as a 'power contract.' Applying this concept to mental health, Barbara Everett (1997) found that consumer/survivors feel let down by the psychiatric power contracts they experience. Similarly, the promise of help within the medical-institutional paradigm did not materialize in the individual stories we presented. In contrast, power contracts between the individual and the K-W community organizations had a very different feel. The contracts did work, and over time, individuals came to trust the people and the support they were receiving. In reviewing people's narratives, what also 'kicked in' for these consumer/survivors was their own sense of self. Motivation, personal goals, and new directions all played a part in the process of change (Zimmerman, 1995). It seems as if the individual's power contract with the community organization had shifted to reflect principles of empowerment and the changed social relations between workers and the people they support (Constantino and Nelson, 1995; Manning, 1999).

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Personal Empowerment and Community Integration Are Strongly Interrelated

The individual changes described in this chapter reflect the importance of viewing empowerment as 'self in community.' Empowerment for most of the consumer/survivors in our study included involvement in community life (Lord, 1997; Manning, 1999). This finding suggests that empowerment and community integration are strongly interrelated. One interpretation of our findings is that empowerment is more related to citizenship than it is to service. Oliver (1996) argued against those who see empowerment as only individual change and the responsibility of service providers. He noted that empowerment is more about collective change and citizenship. Although the community organizations we studied were deemed by consumer/survivors as facilitating empowerment, the struggle of individuals was also deeply embedded in self-help and community. Individuals did not become 'empowered' on their own or through one professional intervention. Paid support played a role, but it was relationships and community participation that enhanced empowerment. Community integration, and the expansion of citizenship, is thus a central part of empowerment (McKnight, 1995; Zimmerman and Rappaport, 1988). It is interesting that many participants emphasized the importance of the consumer/survivor community in their lives. We might ask whether this is a genuine community and whether it facilitates community integration? Oliver (1996) has written that disability self-help groups are a community. As two of our stories showed, participation in self-help served as a 'springboard' for empowerment and community participation. For others, self-help participation is more an end in itself, a safe place for sharing and community. Consistency of Values and Principles Among Organizations Reduces Vulnerability

Many consumer/survivors participate in two of the community organizations, and some are involved in all three. We found that consumer/survivors who were involved in two or more of the organizations appreciated the consistency of values and principles across them. We believe that the consistency of values and principles across organizations serves as a buffer to reduce the vulnerability that consumer/survivors experience. As we saw with Jonathon's story, this buffer is like the 'synergy of settings' in the empowerment-community integration paradigm. All three organizations were important in Jonathan's life at one point or another.

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The three organizations also played complementary roles. The fact that they each consciously strive to facilitate empowerment means that consumer/survivors do not receive mixed messages and get confused about their own process of recovery and change. Changes in Quality of Life of Individuals Show the Importance of All Dimensions of the Empowerment-Community Integration Paradigm The quality of life of consumer/survivors is enhanced when all values of the empowerment-community integration paradigm are addressed (Nelson et al., 1995). In some cases, the lack of change in valued resources limited quality of life. As we have noted, many consumer/survivors in Kitchener-Waterloo struggle with unemployment, lack of access to education, poor quality housing, and conditions of poverty. When one or more of these conditions was able to be changed, people's quality of life increased. As we saw in some of the stories, even when other aspects of life were developing in a constructive manner, lack of valued resources was a significant barrier to escaping poverty. Although this theme highlights the importance of all the values of the empowerment-community integration paradigm being addressed, we have also learned about the implementation of those values and the more concrete role that each value plays. Empowerment, for example, requires that support workers reframe their understanding of voice and choice (Constantino and Nelson, 1995; Manning, 1999). Community support and integration is practical (helping people link to community), open (involving listening and respectful problem solving), and provides opportunities for community involvement (Carling, 1995). Valued resources are basic to social justice and show the importance of social policy when considering access to them. 'Self in Community': Living with Paradoxes We subtitled this part of the book 'Developing Self in Community' because this phrase best reflects the spirit and the reality of the individual changes we have studied in Kitchener-Waterloo. We also recognize that some of the things we have learned about the empowerment-community integration paradigm raise paradoxes for those who want to enhance individual outcomes. We briefly mention the paradoxes here and then revisit some of them in the final part of this book. Empowerment and Community Empowerment and community at first glance seem like contradictions.

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Riger (1993) argued that those concerned with empowerment have typically been concerned with individual rights and personal power. Community, by definition, is about collective responsibility and the common good. Although we agree that personal choice may sometimes conflict with community, our participants' experiences suggested that increasing citizenship and empowerment are related, not mutually exclusive. Community, it seems, gives people the array of choices they need to be empowered. As a result of this work, we now think that expanding individual outcomes will require a consciousness of the paradox 'self in community.' Organizations - Moving in and Out

All three of the community organizations that we studied in KitchenerWaterloo were safe places for consumer/survivors. As we have learned about improving individual lives, the principle-centred, safe organization is an important ingredient in the empowerment-community integration paradigm. We have also learned that people must move out of their comfortable, supportive settings and venture into the community if they are to maximize their quality of life. Participation in community life was very important for consumer/survivors in this study. This has implications for support workers and for family and friends. Expanding quality of life through the empowerment-community integration paradigm will require a consciousness for organizations and individuals about the paradox of 'moving in and out.' Treatment and Support

There has been little reflection about the role of treatment in discussions about the empowerment-community integration paradigm. In fact, one of the criticisms of this paradigm could well be its extensive focus on community, to the neglect of treatment. Participants in our study, as reflected in the individual stories, suggest that there is definitely a role for treatment in the empowerment-community integration paradigm. Although treatment and support differ in many respects, the paradox is that support can also fulfil treatment objectives. As already mentioned, peer support groups at WRSH are seen by many individuals in this light. More work is required to consider how the empowermentcommunity integration paradigm might embrace the paradox of 'treatment and support.' We shall explore this further in the next part of this book.

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PART FIVE

Conclusions

In this concluding part, we review and interpret the findings of the shifting paradigm project and consider future directions for the empowerment-community integration paradigm. In Chapter 11 we identify key themes for a new, multilevel theory of change. For each of these themes, we describe the lessons we learned both in terms of the substantive findings of the research and in terms of the research process. In reflecting on. the future of the empowerment-community integration paradigm in Chapter 12, we propose a new dimension to the empowermentcommunity integration paradigm: a focus on holistic health care, including treatment-rehabilitation and community support. We outline some ways in which treatment and rehabilitation, currently the domain of the traditional paradigm, could be framed and practised within the values of the empowerment-community integration paradigm. We then consider the broader applicability of the empowermentcommunity integration paradigm towards the goal of a more just society. In Chapter 13 we conclude the book with our own personal reflections and the reflections of some of the people who participated in the study.

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Chapter Eleven

Living with Change:

Themes and Lessons from Shifting the Paradigm

In this chapter we reflect on what we have learned from our research on the paradigm shift in community mental health in the KitchenerWaterloo community and the larger provincial context. In Chapter 1 we mentioned that we had noticed small changes in community mental health in our home community and had wondered whether these indicated a fundamental shift in the values and practice of community mental health. Our research has provided detailed information about change processes and outcomes at different levels of analysis. In this chapter we step back and consider the 'big picture,' returning to our original question about whether there has been a paradigm shift in community mental health. Our reflections are guided by three main questions. First, we consider the bottom line question: Has there been a paradigm shift in community mental health? Second, we reflect on what processes have facilitated and inhibited the shift to an empowerment-community integration paradigm. Third, we attempt to make sense of the main findings regarding the paradigm shift by asking the question: What are the key themes and lessons that we have learned about shifting the paradigm in community mental health? Paradigm Shift in Community Mental Health: Main Findings In Table ll.l we summarize the changes towards the values of the empowerment-community integration paradigm in community mental health across the three levels of analysis that we studied: (1) policy and planning, (2) organizational, and (3) individual. There is a consistent pattern in our findings about change across all three levels. The most

Table 11.1. Summary of changes towards the values and related practices of the empowerment-community integration paradigm Levels Values

Policy and planning

Organizational

Stakeholder participation and empowerment

• Extensive stakeholder consultation regarding mental health reform • Partnership with government • Consumer/survivor and family participation in policy and planning mandated

• Development of shared values and vision • Increased consumer/survivor and family participation • Participatory management style

Community support and integration

• Funding of the Consumer/Survivor Development Initiative • De-linking of housing and support • Framework for Support as a policy template

• Changes in the types of service and supports and the way services are provided (more individualized and consumer-directed) • Changes in staff roles (shift from expert to facilitator)

• Increased involvement in community settings • Increased participation and involvement in human service organizations • Increased participation in consumer/survivor initiatives

Social justice and access to valued resources

• Increased social housing • Alternative businesses

• Hiring consumer/survivors as staff • New services focus on promoting access to valued resources

• Securing affordable housing • Some changes in accessing education and employment • Continued poverty

Factors facilitating and inhibiting change towards the values

• Rise of stakeholder pressure groups (+) • Advocacy by pressure groups (+) « Favourable political climate (+) • Shift to an unfavourable political climate (-) • Reassertion of the medical model (-)

Organizational readiness (+) Leadership (+) Resource people (+) Government funding (+ and -) Attitudes of some staff (-) Resistance or lack of support from some stakeholders (-)

Personal Increased sense of control over daily life Increased independence Higher confidence and self-esteem Improved skills Improved relationships Increased participation and involvement

• Responsive mental health organizations (+) • New community-focused services and supports (+) • Peer support and self-help groups (+) • Advocacy (+) • Lack of money (-) • Personal issues and personal history (-) • Government cutbacks (-)

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change was reported for the value of empowerment and stakeholder participation; the least change was found regarding the value of social justice and access to valued resources; and the degree of change towards the value of community support and integration was intermediate. Thus, in response to the question 'Has there been a paradigm shift?' our conclusion is that there has been a partial shift in the values and related practices within community mental health. What is heartening about this finding is that change is possible, but what is sobering is that change is also constrained. To change the nature of systems or to create second-order change, we have argued elsewhere that it is necessary to implement values in a balanced way (Prilleltensky and Nelson, 1997). By this we mean that no single value should be enacted to the neglect of other important values. We have seen, in Chapter 10 especially, that consumer/survivors did not benefit nearly as much from valued resources as they did from the other values of the empowerment-community integration paradigm. Similarly, it has been argued that much of the work of community psychology, which is concerned with second-order change, has not paid sufficient attention to the value of social justice (ibid.,). These insights help explain why we have concluded that we had a partial paradigm shift. In the next section we strive to make more sense of the main findings. Key Themes and Lessons Learned about the Shift towards the Empowerment-Community Integration Paradigm What sense do we make out of this finding of a partial paradigm shift in community mental health? Why was there not a more complete shift to the values of the empowerment-community integration paradigm? Or, on the other hand, why did any change happen at all? As we reflected on our findings, it became clear to us that mainstream theories of change at the different levels of analysis cannot account for the types of changes that were reported by participants in this study. At the level of social policy, for example, there was no rational public response to the plight of people with serious mental illness, as suggested by traditional social movement theory (see Jenkins, 1983). At the level of mental health organizations, classical Weberian organizational theory cannot help us understand the changes that these organizations made. And at the level of the individual, professional services guided by various clinical approaches of biological (e.g., psychotropic medication) arid psychotherapeutic change (e.g., cognitive therapy, psychoanalysis)

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are not useful in understanding how individuals with serious mental illness begin a process of personal empowerment, integrate into the community, or gain access to the resources needed for their recovery. To understand why the paradigm shifted in some respects but not in others, we need a multilevel theory of change. Drawing from our findings and previous work on ecological and empowerment theories (Rappaport, 1987; Seidman and Rappaport, 1986), we outline what we believe are the main themes that help us to understand our findings regarding paradigm shift. We have identified four main themes: (1) values and principles; (2) multilevel ecological perspective; (3) oppression, power, and empowerment; and (4) partnerships and relationships. These themes form the basis for a new multilevel theory of change. For each theme, we describe the lessons that we learned about: (a) substantive changes regarding the empowerment-community integration paradigm and (b) the research process that we used. Values and Principles

Our modern and postmodern Western world has been characterized by rapid social change. In the past 150 years we have witnessed changes from an agrarian economy to an industrial economy to an economy now based on services and information technology. As we noted in Chapter 1, what drew Mennonite settlers to Kitchener-Waterloo in the late 1800s was the fertile farm land. As has happened throughout Canada, the population of Waterloo Region has become increasingly urbanized, and there have been dramatic changes in technology. The industrial base in K-W, which used to provide a large segment of the population with jobs that paid well, is in decline. K-W is now part of the 'technology triangle,' and computer science has become an increasingly popular major of students at both of the local universities and at the local community college. Accompanying these changes has been a breakdown in traditional sources of support and meaning, including the importance of the extended family, community, and organized religions. Canada, like many other Western societies, has not planned very well for these changes. In Kitchener-Waterloo many helping organizations have sprung up recently to meet the needs of people. For example, in K-W we now have over one hundred self-help and mutual aid groups, groups that were formed by and for people who share a common experience or life concern. In our view, this is just one example of citizens trying to regain a sense of community and social support in their lives (Sarason, 1988).

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Table 11.2. Substantive and process lessons in terms of the theme of values and principles

Theme Values and principles

Lessons learned regarding substantive changes

Lessons learned regarding the research process

• Values form the basis for • 'Conscious' values and principle-centred approaches implementing the enhance the participatory empowerment-community integration paradigm. action research process. • Clear and frequent communica• Participation and principles tion is one important principle. are key strategies for implementing the values. • Consistency of values and principles across organizations reduces vulnerability of consumer/survivors. • The values guiding policy and mental health reform are precarious. • The culture of professionalism and formal services limits thinking and strategies about the value of community integration.

In Table 11.2 we provide an overview of substantive and process lessons regarding the theme of values and principles. In community mental health there is definitely a strong need for people to be connected with community and social support. One important implication of our study is that this need is no longer satisfied in the same ways as it was in previous generations (Sarason, 1988). What has been important in Kitchener-Waterloo, however, is that the values of community, social support, and participation have been recaptured and articulated. This is probably the biggest challenge of the empowermentcommunity integration paradigm: how to develop and maintain a strong value base in community mental health in a postmodern, urban context. Values and principles have been the touchstone for understanding the changes that have occurred in Kitchener-Waterloo and in the three organizations we studied. All three organizations articulated their values and beliefs with their stakeholders in ways that made the values 'live.' We shall examine several lessons learned in these organizations and the

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community in regard to values and principles of the empowermentcommunity integration paradigm. Lessons Learned Regarding Substantive Changes

During the period of change in the early 1990s, the values of the three organizations emerged as central. They were not hidden, but became part of the vision and mission of each organization. The Canadian Mental Health Association's (CMHA) vision illustrates the power of values. This vision calls for a healthy and inclusive community in which all people are valued and have equal opportunities to participate in all aspects of life. Similarly, the mission of Waterloo Regional Homes and the belief statements of Waterloo Region Self Help (WRSH) reflect values of respect, participation, community, quality of life, and social justice. Consistent with the views of others, we too found that values do matter (Block, 1993; Covey, 1989; McCubbin and Cohen, 1999; Prilleltensky, 1997). They provide a guiding vision for alternatives to the status quo of any entrenched social system (e.g., the mental health system) that serves to oppress marginalized people (e.g., psychiatric consumer/ survivors) (Nelson, Prilleltensky, and MacGillivary, in press; Prilleltensky and Nelson, 1997). New paradigm thinking asserts that any research or change approach is saturated with values (Lincoln, 1985). Thus, values are front and centre in new paradigm theories of change (Block, 1993; Covey, 1989; McCubbin and Cohen, 1999; Senge, 1990). One of the important things we learned is that values form the basis for implementing the empowerment-community integration paradigm. We found that values provided the 'compass' or the 'direction' for all implementation. We conclude that just trying harder or designing better techniques does not contribute to change when the very assumptions of the dominant paradigm are flawed (Seidman and Rappaport, 1986). All three organizations had values as the root of their philosophical foundation. By stressing 'conscious' values, each organization helped to ensure that the values and directions of the empowermentcommunity integration paradigm were the focus and intent of all activity. Other community mental health organizations (e.g., self-help organizations, mental health organizations) that have not emphasized the development of a vision and values have floundered in their efforts to create change (Pranger, 1999). We also learned that participation and principles are the key strategies for implementing values. In each of the organizations, stakeholders participated throughout various processes for change. Participation

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enabled people to engage in dialogue about the values and directions that were important to them. As many participants in the study pointed out, this type of engagement allowed people to claim 'ownership' of the values. In terms of the partial paradigm shift, we believe that the two formal organizations have more changes they could make in ensuring increased consumer/survivor participation in all aspects of their organizations. Participation provides an important vehicle for ongoing dialogue about the value base. Principles serve as guideposts for implementation and act as 'lighthouses' (Covey, 1989). They enable staff and consumers alike to 'see' problems in a different light. Reframing problems can lead to innovative ways of addressing them (Seidman and Rappaport, 1986). Waterloo Regional Homes, for example, developed service principles to guide their new approach to individualized support. Principles such as selfdetermination, empowerment, and community involvement helped staff to see strengths instead of only deficits and to see community as a resource rather than as a liability (Rappaport, 1977). When principles are combined with participation in a thoughtful manner, they facilitate the implementation of the empowerment-community integration paradigm (Block, 1993; Senge, 1990). Building the capacity for being principle-centred continues to be an ongoing challenge for these community organizations. As discussed in Chapter 10, we learned that consistency of values and principles among organizations in a community reduces the vulnerability of consumer/survivors. This insight is based on Janeway's (1980) notion of the 'power contract.' Too often contracts between providers and users fail because the consumer/survivor is treated like a 'passive client.' As Wendell Berry (1990:2) stated: 'The task of healing is to respect oneself.' Many consumer/survivors, after extended periods of being institutionalized, have little self-respect. Rebuilding the self and one's personal identity is part of recovery (Rappaport, 1993). We have learned that people need to recover their voice, have genuine choice, and experience individualized support in the community. One of the significant 'buffers' against further vulnerability is the consistency of values and principles that people experience in different settings. Consumer/ survivors gradually learned that they could trust the settings in which they participated. As they were trusted, they increased their own self-respect. One problem that we discuss in the next chapter is that consumer/survivors experienced a discordance in values between the three settings that we studied and other mental health treatment services

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(e.g., hospital and psychiatric services), which continue to be guided by the medical model. Finally, our research shows that the value of social justice and access to valued resources is influenced in a significant way by the political context. During the late 1980s and early 1990s, when Ontario government policy was more congruent with the empowerment-community integration paradigm, there was some improvement in the access to resources. More recently, as the provincial government has moved to reduce the non-profit housing sector and lower welfare funding, access to resources has stalled and even slid back. While the values of the three organizations in the research are clear and strong, we also learned that the values guiding policy and mental health reform are precarious. For a brief period, the public supported an NDP government whose espoused value base includes social justice. Even that government, however, was reluctant to substantially shift resources to consumer/survivors in the face of opposition from unions, hospitals, and the medical professions (Everett, 1997). Moreover, as public support shifted to a Tory government that proclaims an ideology of 'blaming the victim,' policy significantly eroded any progress that had been made in access to resources. We believe that one reason we have witnessed only a partial paradigm shift is that at the broad public and political levels there has not been sufficient 'buy in' to the value of social justice. Our research suggests that the value of community integration may be less influenced by the policy context and more influenced by the experience and frameworks of the community organizations and the community-at-large. In Kitchener-Waterloo, community integration increased for consumer/survivors, but only to a limited extent. Generally, the three organizations did not strategically work towards community integration and inclusion. All organizations talked about the importance of community, but only one dedicated resources to facilitating integration. We have learned that it is difficult to think about and practice the values of community-building and community inclusion in a culture where professional interventions and service organizations are expected to 'take care of citizens with mental health problems (McKnight, 1995; Townsend, 1999). It is understandable that many service providers and consumer/survivors themselves do not believe in the power of community. They have 'internalized' the perspective of the dominant culture (Foucault, 1965; Janeway, 1980). If they were to move fully towards the empowerment-community integration paradigm, organizations and communities would have to work collaboratively and more strategically

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on building civic processes for connecting vulnerable people with community life (O'Brien and O'Brien, 1996; Schwartz, 1997). Lessons Learned Regarding the Research Process

Values and principles were important components in the research process. During the proposal development phase, the partners in the study spent considerable time reflecting on the values that they wanted to guide the research. We also utilized the values of the empowermentcommunity integration paradigm to help us decide which organizations would be part of the study and which would not. Once the study was funded and the steering committee was formed, we again spent time developing principles for how we wanted to work together. Sometime later, when the research team had been hired, we reviewed the project values and principles and involved the team in deciding on ways that its members wanted to work together. Throughout the study, we used the values and principles on many occasions to decide priorities, determine directions, and resolve conflicts. We learned that having 'conscious' values and principle-centred ways of working enhances the participatory action research process (Nelson et al., 1998a). The steering committee developed principles for working together early in the research process. One important principle was that of clear and frequent communication. Communication often involved many different partners at different levels of analysis. The fact that there were regular meetings of both the steering committee and the research team and the fact that the Centre for Research and Education in Human Services and the three settings are all within close proximity to each other helped to ensure clear communication throughout the project. Communication with the three research settings played a critical role. Regular formal updates as well as regular informal conversations and connections were important. Because of our communication, meetings, phone calls, and 'mini-meetings,' the research study became a part of a day-to-day existence of some people involved in the community organizations. Also, communication facilitated an understanding of the main challenges faced by each organization and enabled us to develop positive relationships with individuals and with the organizations. A Multilevel Ecological Perspective

In our research we employed a multilevel ecological perspective. Traditionally, mental health research has focused on the micro-level of analy-

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Table 11.3. Substantive and process lessons in terms of the theme of a multilevel ecological perspective

Theme Multilevel ecological perspective

Lessons learned regarding substantive changes

Lessons learned regarding the research process

• Change at different levels is not automatically interdependent, but rather requires a coherence in values and principles across levels. • Values are the glue that bound changes at the organizational and relationship levels. • The relationship between staff and consumer/survivors plays a pivotal role in mediating between organizational change and individual change. • Change can be made and preserved even when the social-political context shifts back towards more traditional values. • Timing is very important for making change.

• Having vehicles for collaboration at multiple levels of analysis facilitates the research process. • Over time, relationships develop among project members, and trust is built. • Analysis of findings requires effective coordination.

sis, including the individual (with a focus on biological and intrapsychic constructs) and his or her immediate environment (e.g., family, close relationships). However, ecological and systems perspectives (Bronfenbrenner, 1979; McCubbin and Cohen, 1999) hold that it is important to look beyond the individual and the micro-system to the macro-system (e.g., social norms and social policy) and systems that mediate between the individual and the macro-system (e.g., community organizations). In addition to considering the social context of a paradigm shift in community mental health, we also considered the historical context. Our ecological perspective provided a broad framework for the analysis of change (see Table 11.3 for an overview of lessons learned). Lessons Learned Regarding Substantive Changes

One of the key principles of the ecological perspective is that change in one part of a system is interdependent with change in another part of that system (Kelly, 1986). Our findings regarding paradigm shift suggest

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that such interdependence is not linear or unidirectional. We found that changes in mental health and housing policy, for example, provided a supportive context for the development of organizational changes regarding consumer/survivor and family participation in Kitchener-Waterloo. However, we also learned that change at different levels is not automatically interdependent, but rather requires a coherence in values and principles across levels. In support of this, Vandergang (1996) found that although mainstream community mental health agencies in Toronto have reported an increase in consumer/survivor participation, this change has been uneven across agencies. Some settings were more receptive to and ready for change, while others were more resistant. As Lehman (1989) has observed, policy changes do not necessarily directly translate into program changes in mental health. In Kitchener-Waterloo we found that there was organizational readiness and administrative support for a shift towards increased consumer/ survivor and family participation in both CMHA and Waterloo Regional Homes. The emergence of WRSH in the same period facilitated this change, as many WRSH members have participated actively in the two formal organizations. Thus, change was facilitated because of the coherence in values between the organizations and provincial policy initiatives. There was also an interdependence between the organizational and personal levels regarding actualization of the value of stakeholder participation and empowerment. We learned that values are the glue that binds the changes at the organizational and relationship levels together. In all aspects of the three organizations there is a strong ethos of consumer/survivor and family participation, voice, and choice. Translating the values into practice at the level of individual consumer/survivors requires staff who are committed to and trained in the values of a consumer/survivor-directed approach. This represents a personal paradigm shift for staff, and staff and managers reported that this change was challenging and that some staff were more receptive to the change than others. Involving staff in the change process and providing ongoing training and support are some of the processes that we found facilitated the enactment of new paradigm values at the organizational and individual levels. The relationship between staff and consumer/survivors plays a pivotal role in mediating between organizational change and individual change. These findings suggest that organizations can establish a culture that values consumer/survivor and family participation, voice, and choice. In other words, there is much that is within the control of community

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mental health organizations. Another important lesson to be learned from this observation is that change can be made and preserved even when the social-political context shifts back towards more traditional values. Currently, the culture of the community mental health organizations that we studied is threatened by changes in the external environment. The resurgence of the medical model through the implementation of Assertive Community Treatment (ACT) teams in the mid-1990s is at odds with the values of the empowerment-community integration paradigm. In spite of these threats, we have observed that these organizations have held fast to their values. Nevertheless, the desire of these organizations to more fully enact the values of the empowerment-community integration paradigm is constrained by the shifting social-political context. Previous governments began to address the issue of consumer/survivors' need to access resources by providing funding for affordable housing (Nelson, 1994; Trainor et al., 1993) and the creation of alternative businesses operated by consumer/survivors (Church, 1997; Church and Creal, 1995). However, with the election of the Tory government in 1995 there has been a freeze on the creation of new social housing and little attention has been paid to the educational and economic needs of consumer/survivors. We found that the lack of attention to the value of social justice and access to valued resources in current federal and provincial policy severely limits the ability of local mental health organizations to make change in this important area. Thus, individual consumer/survivors reported the least change in terms of obtaining valued resources. The difficulty in making change in this area relates to the current social context, in which there is public support for a government that does not have a social justice agenda. In this climate, consumer/survivors, other disadvantaged groups, and their allies must continue to make claims for the needs of disadvantaged people (Humphreys and Rappaport, 1993). Current efforts in Toronto by claims-makers to have homelessness declared a national disaster could draw attention to the needs of disadvantaged people and shift the climate back in the direction of supporting reforms to increase disadvantaged people's access to housing, education, and employment. The ecological perspective not only draws attention to multiple levels of analysis but also to the context of time (Bronfenbrenner, 1979; Kelly, 1986). From our findings we have learned that iming is very important for making change. The changes towards the values of the empowerment-community integration paradigm at multiple levels of analysis

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occurred during a particular window of time. During the period 1985 to 1994 the provincial Liberals and New Democrats were in power, interrupting Tory rule over the province dating back to the Second World War. The relatively more progressive agenda of these parties with respect to social issues provided a fertile environment for claims-makers to press their agendas for change (Jenkins, 1983). It was during this period that we witnessed the emergence of an alternative paradigm in mental health. Lessons Learned Regarding the Research Process

The ecological perspective also provides a useful framework for understanding the process of participatory action research. We employed the concept of multiple levels of analysis in our design of the research. We found it useful to have vehicles at multiple levels for implementing the principles of participatory action research: (a) a national/provincial advisory committee, (b) a stakeholder steering committee, (c) a research team made up of both professional and non-professional researchers, and (d) a strong coordination process. Members of the national/provincial advisory committee greatly assisted us in understanding the social policy context of our study of change. In essence, they provided the 'big picture' of mental health policy. Our research steering committee functioned like a board of directors and made all decisions about the research design and process. As we noted in Chapter 3, the steering committee comprised members of the three organizations that participated in the study, including the executive directors of each agency, and thus focused on the organizational level of analysis. We also made several visits to each of the settings to explain the research at the beginning of the study and to provide a summary of findings after the second and third phases of the research. The research team provided an interface between the researchers and the three settings. Its members liaised with the settings to organize data collection. As the people working 'on the shopfloor,' the research assistants were the people who had direct contact with the individuals served by the organizations. It was through these relationships that we learned about the personal stories of change of people who were supported by the three organizations. The overall coordination of the various players in the project came from the Centre for Research and Education in Human Services. The main coordinating role was to manage day-to-day activities, to link all

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parts together, to ensure clear communication with everyone involved, and to provide ongoing training and support to the research team. Not everything went smoothly. We experienced the challenges of working efficiently with a large research team and a small budget, as well as the challenges of being a supportive employer while maintaining time lines for the research. We learned that the analysis of findings within a multilevel ecological approach requires a great deal of coordination. The time dimension of context was important for the research process. In Chapter 3 we noted that members of the different organizations were initially somewhat apprehensive of their participation in the project. Concerns and fears were voiced, and we as researchers were challenged. We actively listened to these concerns. We showed that we were open to working collaboratively with the settings, and we strove to create a positive working climate that included fun, food, and laughter. We learned that over time, relationships among different partners in the research develops, and trust is built, forming the basis for collaboration and ongoing dialogue (Wadsworth and Epstein, 1998). Oppression, Power, and Empowerment

Understanding power and oppression is central to our expanding knowledge of the empowerment-community integration paradigm. In the traditional paradigm, power issues are unstated and the fact that professionals have 'power over' people is never questioned (Lord and Dufort, 1996; McCubbin and Cohen, 1996). In the empowermentcommunity integration paradigm there is an attempt to achieve a balance of power between professionals and consumer/survivors. As we have seen, personal empowerment was an important goal for consumer/survivors in Kitchener-Waterloo. 'Empowerment' discourse was very much a part of WRSH, and the two formal service settings. Empowerment has been described as a process of moving towards 'power with,' a process of building self-confidence and gaining 'voice,' and a process of experiencing 'self in community' (Everett, 1997;Janeway, 1980; Lord and Hutchison, 1993; Manning, 1999). In Table 11.4 we provide an overview of the lessons learned regarding this theme. Lessons Learned Regarding Substantive Changes

A growing consumer/survivor literature describes people's experience with the mental health system as difficult, alienating, and a major contributor to oppression (Burstow and Weitz, 1988; Capponi, 1992, 1997;

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Table 11.4. Substantive and process lessons in terms of the theme of oppression and empowerment

Theme Oppression, power, and empowerment

Lessons learned regarding substantive changes

Lessons learned regarding the research process

• Recovery is partly about regaining personal power. • Contexts that support participation and control contribute to personal empowerment. • Power contracts between consumer/survivors and community organizations do work when agencies work from principles that reflect the empowerment-community integration paradigm. • Empowerment outcomes are experienced through a variety of pathways. • Fully implementing the empowerment-community integration paradigm requires

• The success of participatory action research depends upon the willingness of researchers to share power with stakeholders. • Generating and sharing information in a way that is meaningful and usable by everyone can reduce conventional power differences. • It is important to take the time to deal with conflict and tension openly. • Strategies need to be developed to overcome barriers to consumer/survivor participation. • Telling their own stories is personally empowering for consumer/survivors.

a Han tin n in alt itc waliiete

Chamberlin, 1990). In our study, many consumer/survivors felt disempowered at various points in their mental illness. As people changed, increased control was a common outcome. We have learned that recovery is partly about regaining personal power. Chamberlin (1999) and Parkinson (1999) have noted the similarities between the processes of empowerment and recovery. As we described in Chapter 8, reclaiming voice and having increased choice were a key part of this change. Most consumer/survivors who described their lives to us experienced new contexts as part of their change and recovery. This might have been supported housing or perhaps a new support arrangement. We have learned that contexts that support participation and control contribute to personal empowerment (Baxter and Diehl, 1998; Lord and Hutchison, 1993; Manning, 1999; Prilleltensky, 1994; Rappaport, 1987; Townsend, 1999; Young and Ensing, 1999). Concomitantly, participation in the community is an essential ingredient of being empowered (Lord, 1997). Although consumer/survivor control continues to be so important

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in the empowerment-community integration paradigm, much power remains vested in organizations in our community. We have learned that power contracts between consumer/survivors and community organizations do work when agencies work from principles that reflect the empowerment-community integration paradigm. This is one of the unique and important lessons of this study. People's narratives were very positive when describing their relationship with service providers. Service providers need to 'consciously' shift power in the way that they support individuals. A recent research study identifies multiple pathways to empowerment (Foster-Fishman et al., 1998). This insight is consistent with our findings. We learned that similar empowerment outcomes (e.g., increased control) are experienced through a variety of pathways. In this sense, empowerment is dynamic and individualized. At the level of social policy, we found some shift towards the values of the empowerment-community integration paradigm, but we also noted more ambiguity and reluctance in fully embracing this. We found a shift in social policy towards one of the values of the empowerment-community integration paradigm, namely, stakeholder participation. Consumer/survivors and family members are now much more involved in policy and planning, a process that began during the consultation for the Graham Report and in the legislation and implementation committees in the late 1980s and early 1990s. Furthermore, through the CSDI, specific consumer/survivor non-service initiatives have been funded and developed. But, as Riger (1993) has argued, participation is only one aspect of empowerment. Empowerment also means political control over resources. Except for an increase in housing and some consumer/ survivor-run businesses, access to resources has not received the attention that is needed to promote social justice for consumer/survivors. Most consumer/ survivors continue to live in poverty and to experience significant barriers to employment and education (Capponi, 1997). There has yet to be a significant reallocation of funding from the institutional sector to community alternatives based on the values of the empowerment-community integration paradigm. Substantive change has lagged behind changes in rhetoric and language. This is like the Royal Bank using Dylan's protest song 'The Times They Are a'Changin' for advertising, while they rack up record profits and plan a mega-bank merger. The tune sounds good, but the reality is quite different. Edelman (1977) argued that lofty rhetoric often camouflages the lack of substantive changes in policy. He suggested that it is critical to look beyond

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political language to determine if there are tangible changes in decision-making power and the way resources are allocated. Similarly, Rappaport (1981:13) stated, 'Having rights but no resources and no services available is a cruel joke.' We have learned that fully implementing the empowerment-community integration paradigm requires attention to all its values, including social justice and access to resources (Prilleltensky and Nelson, 1997). Until consumer/survivors obtain genuine power to make decisions about funding and the allocation of resources, their participation in policy and planning will have a limited impact on changes towards the empowerment-community integration paradigm. As we discussed, consumer/survivors need to become agents of policy change, rather than simply objects of the policy development process. The lack of access to resources also limits the potential of actualizing the value of community integration, since employment and education often provide a sense of community, the development of friendships, and the potential to overcome stigma (Ochocka et al., 1994). There has been limited progress achieved in community support and community integration, and much of community mental health continues to have a focus on traditional case management and rehabilitation. In the absence of access to resources, deep-seated prejudices about 'those people' can go unchallenged because consumer/survivors are not integrated into the everyday life of the community. Lessons Learned Regarding the Research Process

We learned that the success of participatory action research depends on the willingness of researchers to share power with stakeholders (Nelson et al., 1998a). For us, empowerment means a desire to work with our collaborators as equals. The control and ownership of the research process and research findings were shared among all stakeholders. Two factors were most important in this process. First, it was necessary for us as researchers to 'let go' of control and for consumer/survivors to 'step up' and become more engaged. Second, it was important for us as researchers to practise good process, democratic involvement, and shared decision-making. Despite our best efforts, we learned that there are limits to equalizing research relationships (Campbell, Copeland, and Tate, 1998). For example, the final responsibility for completing the research rests with the researchers. Researchers train and support stakeholders, not vice versa. Another way in which ownership was developed was the recognition

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of the importance of experiential knowledge. Valuing experiential knowledge involves a recognition on the part of researchers that participants are 'experts' and owners of their own lived experience and future possibilities (Trainor et al., 1999). We contributed our knowledge, skills, and commitment, just as other participants contributed their knowledge, skills, and commitment. We strove to leave steering committee members and consumer/survivor research assistants with a greater capacity to conduct and interpret the results of the research. Just as Foucault (1972) argued that knowledge is power, we learned that generating and sharing information in a way that is meaningful and usable by everyone can reduce conventional power differences. We learned that it is important to take the time and effort to deal with conflict and tension openly. We ensured that consumer/survivors were able to ask hard questions, and we tried to listen and not be defensive when challenged (Wadsworth and Epstein, 1998). Especially at the beginning of the project we were challenged by consumer/survivors as to why the university was holding the grant and whether or not we 'wellpaid professionals' had allocated grant money that would directly benefit consumer/survivors. Early in the study, there was a conflict between members of one of the participating organizations, and some participants attempted to use the research as a way of venting their feelings about the organization. We were able to draw a boundary around our role as researchers and avoided getting 'caught in the middle' of this conflict. We encouraged the participants to direct their complaints to the staff of the organization. During the course of the project, we learned that often times relationships between consumer/survivors and family members (particularly those representing family self-help organizations) are quite sensitive. When we experienced a conflict related to the inclusion of family members in the research, it was only by listening to the different perspectives and experiences that the steering committee was able to come up with a solution. As a result of this process, the definition of a family member was extended (to include more than parents), and limits were set on family participants in providing information about the personal experiences of the family member with a mental health problem. At one point, WRSH representatives on the steering committee told us that one of the interview guides that we had developed would not work with WRSH members. We listened and with some brainstorming produced an alternative interview guide with WRSH that ended up working quite well. Both of these examples illustrate the importance of recognizing

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and working with differences, as well as of finding 'common ground' (Lord and Church, 1998). We learned that strategies need to be developed to overcome barriers to consumer/survivor participation. We spent time 'working across differences' (Church, 1995; Lord and Church, 1998). Having a consumer/ survivor chair the meetings, making an effort to find the best time for meetings, hiring and training consumer/survivor research assistants, getting to know people's stories, taking breaks for smokers, using plain language rather than professional jargon, encouraging and listening carefully to members' contributions, ensuring that people have transportation to interviews, and negotiating difficult issues are some of the ways that we can begin to reduce the barriers to consumer/survivor participation (Nelson etal., 1998a). Finally, we found that telling stories is personally empowering for consumer/survivors. Participants reported feeling honoured and proud that they could share their successes and struggles and that we cared to know about their experiences. Qualitative research methods lend themselves well to participatory action research, as they allow participants to speak about themselves in their own voices (ibid.). Partnerships and Relationships

As was already stated, we believe that the types of relationships that may exist between service providers and consumer/survivors have illustrated one of the most important features of the empowerment-community integration paradigm in community mental health. The concept of 'partnership' seems to be essential in effective community support (Lord, 1994; Lord and Church, 1998; MacGillivary and Nelson, 1998; Nelson et al., in press). It also provides a broad framework for understanding social change. The link between values and principles and their practical implementations is the process in which people are engaged together in everyday life. The relationships between service providers and consumer/survivors in the three organizations created the bond between beliefs and reality and between people and the community. It is this type of power contract that is necessary to truly benefit consumer/survivors (Janeway, 1980). In Table 11.5 we provide an overview of the lessons learned regarding this theme. Partnership and relationship development have been key in understanding the changes that happened in the three organizations. As discussed in chapters 6 and 7, all three organizations reported changes in

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Table 11.5. Substantive and process lessons in terms of the theme of partnerships and relationships Theme Partnerships and relationships

Lessons learned regarding substantive changes

Lessons learned regarding the research process

• Trust and respectful personal relationships form the basis of any partnerships. • Professional role changes and dialogue facilitate more equitable relationships. • Working across differences and finding common ground are important partnership processes.

• Successful participatory action is research is based on effective relationships and partnerships. • Building positive relationships takes time and effort. • It is important to do key tasks collaboratively. • It is necessary to stay focused on the research's empirical foundations and to establish some boundaries. • Enacting commitment to collaboration and to constructive social change at the level of the community as well as individuals, our actions must be accountable to that larger constituency as well.

the way professionals relate to consumer/survivors. Learning to share power and decision-making, working together across differences, and building trust were essential in developing partnerships (MacGillivary and Nelson, 1998). Staff and managers played a critical role in translating the values of empowerment, community support, and integration into practice at the level of individual consumer/survivors and in mediating between organizational change and individual change. Our findings suggest that the three organizations adopted the view that strengthening relationships is the first step in strengthening people. Whenever people were talking about empowerment, increasing community involvement, and offering flexible and individualized services and supports, this basic understanding about building relationships seemed to apply. Lessons Learned Regarding Substantive Changes

The concept of partnership provides a useful framework for understanding social change and the distribution of power. One of the key lessons from our study was that trust and respectful personal relationships

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form the basis of partnerships. The development of partnerships was a much broader process than gaining input for changes in services that professionals ultimately control. We learned that meaningful partnerships involve high levels of stakeholder participation, collaboration, and co-determination. Most importantly, meaningful partnerships strive in the long run to create a more equitable distribution of power among stakeholder groups and a merging of personal and public selves (Church, 1995). Our research suggested that the process of building partnerships between service providers and consumer/survivors involves changes in roles. Service providers have changed from 'experts who know best' to 'facilitators who enable others' (Constantino and Nelson, 1995; Manning, 1999). Consumer/survivors have gained more choice and power and have started to play leadership roles. Some people, both consumer/ survivors and staff, struggled with the shift in roles. This process created some uncertainty and identity changes, mostly experienced by professionals. The processes of relationship-building also facilitated learning around different ways of relating to people (MacGillivary and Nelson, 1998). It included new ways of talking to one other, writing, running meetings, and organizing events. The study showed that dialogue was an important factor facilitating development of partnerships in the three organizations (Wadsworth and Epstein, 1998). Sharing common experience, speaking in a 'full voice' (Park, 1993), and listening and talking to each other as whole persons with feelings and commitments started to happen during strategic planning, during disputes about values, and during implementation of changes in supports and services (Lord et al., 1998). The concept of partnership implies that each partner has something to contribute and something to benefit by being involved. The lived experience of people with mental health struggles and the world of professionals traditionally represent different cultures, so both working across differences and finding common ground played important roles in the relationshipbuilding processes (Lord and Church, 1998). Lessons Learned Regarding the Research Process

The steering committee served as an example of a new partnership and a paradigm shift. In our research the term 'partnership' implied the shared and long-term commitment to values of an empowerment-community integration paradigm. For the entire process of the study, we learned that successful participatory action research is based on success-

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ful relationships and partnerships. Participatory action research served as a useful framework for partnership in research (Nelson et al., 1998a). It served not only as our methodology, but also as our way of working together, our way of understanding, and our way of being. Building positive relationships within our research team and among steering committee members and the three organizations was an important contributing factor to the success of the project. However, we learned that building positive relationships takes time and effort. As in our personal lives, research relationships needed to be nurtured by putting into practice values such as trust, honesty, and open communication. Our process of relationship-building was continuously nurtured and occasionally tested, as we indicated in a previous section. We found that setting a tone of informality and talking about ourselves (e.g., being on a first-name basis, providing food, going for coffee, celebrating each others' birthdays, or sharing stories about private aspects of our lives) enabled us to relate to each other both personally and professionally (Nelson et al., 1998a). For example, when one of the steering committee members came back from a hospital stay, we sent flowers to welcome her home. When another person's family member passed away, we expressed our condolences and shared her grief. As our relationships deepened and sometimes turned into friendships, we also got invitations to go for a drink after meetings, and individuals sometimes sought us out for personal or professional support. By reducing the dichotomy between our personal and professional selves, we opened up possibilities for authentic relationships with participants (Lincoln and Cuba, 1986). Another important lesson that we learned is that it is important to do key tasks collaboratively. As a group, we planned research activities, presented research findings, and reflected on the process together. We asked the members of the research team and steering committee to redesign research questions with us to make sure that we asked the right questions in the right ways. We presented together at a conference, and we wrote collaboratively. All these collaborative activities moved the control and ownership from the researchers' side to the middle ground, shared between researchers, steering committee members, and the research team members. The nature of the relationships between us as researchers and the people with whom we worked was complex and perhaps controversial. On the one hand, the close interpersonal contact was a necessary condition for building mutual understanding and participation. On the other

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hand, critics might charge that when the boundaries of relationships between researchers and participants become blurred, as they did in our research, that the researchers' scientific credibility is suspect. We found that in order to maintain our objectivity and to 'get the job done,' that it is necessary to stay focused on the research's empirical foundations and to establish some boundaries. We kept a detailed audit trail of all our data coding and analysis and used member checks to verify the accuracy of the findings (Lincoln and Guba, 1985). Having detailed job agreements with research assistants helped to keep a balance between being a friend and a boss (Curtis and Hodge, 1994). We found that setting some boundaries did not interfere with our ability to be respectful, sympathetic, and useful to others. The research taught us the value of building relationships with a diverse network of partners within organizations and with the community. Building trust and being reliable was the foundation for the multilevel partnerships. For example, we learned that in order to enact commitment to collaboration and to constructive social change at the level of the community as well as at the individual level, our actions must be accountable to that larger constituency as well. To move fully towards the empowerment-community integration paradigm, stakeholders, organizations, and communities have to 'walk the talk' (Edwards and Potter, 1992). Final Reflections on the Themes

The themes that we have just discussed - values and principles, a multilevel ecological perspective, oppression, power, and empowerment, and partnerships and relationships - help us understand the partial paradigm shift that we found in our study. There are competing narratives for understanding the situation of consumer/survivors. During conservative political times, the values of the traditional paradigm prevail, while during political periods of social change, values consistent with the empowerment-community integration paradigm rise to the forefront (Levine and Levine, 1992). The change process that took place within the three community mental health organizations that we studied occurred during a window of social change from 1985 to 1994. The values and principles that guided change in the three organizations were congruent with the values espoused by claims-makers in the larger mental health policy scene in Ontario. It is this coherence in values and principles at different ecological levels (social policy, commu-

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nity, organizational, individual) that led to the creation of new settings, such as the Consumer/Survivor Development Initiative (CSDI), and new approaches that emphasized the participation of consumer/survivors. The emergence of consumer/survivor groups led to partnerships and relationships at multiple levels (i.e., between the state and consumer/survivor organizations, between local community mental health organizations and consumer/survivor initiatives, and between agency support workers and service users). Through these partnerships and relationships, consumer/survivors enhanced their power in a mental health system in which they previously had no voice. At the same time, however, there has been ongoing resistance from the still powerful medical-institutional sector and labour unions that are part of large facilities (McCubbin and Cohen, 1999). Although consumer/survivors gained a voice and new settings, such as the CSDI, they were not able to influence the reallocation of resources from institutions, professionals, and mental health system employees into valued community resources (housing, jobs, education, income) that directly benefit consumer/survivors. As we found, access to resources was the area in which participants reported the least change towards the values of the empowerment-community integration paradigm. Lack of access to jobs and education limits integration into the larger community. As the political climate has shifted back to conservative values, the ability of consumer /survivor groups and their allies to move further with the implementation of the empowerment-community integration perspective has been stalled. Our analysis shows the relationships among the values of the empowerment-community integration paradigm. Community support and integration, for example, have been directly affected by the attention paid to resources. When insufficient attention is paid to resources, integration and participation suffer. Our study suggests that a broad framework for these issues may be required. To be successfully implemented, the empowerment-community integration paradigm must embrace an agenda beyond organizations within the mental health system. Engaging the wider community (e.g., churches, neighbours, municipalities, employers, schools, and universities) will be necessary to implement the values of community integration and social justice. In this regard, 'community-building' is increasingly becoming a strategy for those interested in community integration and inclusion (Kretzmann and McKnight, 1993).

Chapter Twelve

The Future: New Directions for the Empowerment-Community Integration Paradigm

In this chapter we address the following question: What are the future directions of the empowerment-community integration paradigm in community mental health? We consider the ideal qualities of this paradigm from the viewpoints of the diverse stakeholders who participated in this project and explore how treatment services might be provided within the framework of the paradigm. In this chapter we also consider what we believe is an important value that is currently not receiving a great deal of attention in the discourse on the empowerment-community integration paradigm in community mental health: diversity. We conclude with a discussion of the broader applicability of the empowerment-community integration paradigm to social policy in a variety of areas. It is our belief that the values of this paradigm go far beyond community mental health; they provide a direction for how we can achieve a more just society. What Are the Ideal Qualities of the Empowerment-Community Integration Paradigm? In thinking about the future of the empowerment-community integration paradigm, we found it worthwhile to reflect not just on what the three organizations were able to achieve in terms of a paradigm shift, but also on what stakeholders would ideally like to achieve. Views From Research Participants: Holistic Health Care as an Emerging Value

On 23 October 1997 we held a forum in phase 3 of the research at the Kitchener Public Library. In small groups, participants set about brain

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storming ideal indicators of this paradigm. Participants included members of the national/provincial advisory committee, who facilitated the small group discussions, steering committee members, members of the research team, and other participants from the Canadian Mental Health Association (CMHA), Waterloo Regional Homes, and Waterloo Region Self Help (WRSH). After describing our framework for the empowerment-community integration paradigm, we asked participants what ideally should be happening to promote this paradigm. Responses were recorded on flipchart paper, posted, and summarized by recorders to the entire group. After the session, the project investigators coded and organized the different indicators that were suggested. In Table 12.1 we summarize the values, elements, and some illustrative examples that emerged from this exercise. People spoke about elements of the three values that guided our research: (1) stakeholder participation and empowerment (with a strong emphasis on consumer/survivor empowerment), (2) community integration, and (3) access to resources (Nelson et al., 1998b). It was clear from the forum that these values matter a great deal to the people who were involved with this research project. It was also clear that the different elements of these values and related ideal indicators confirm that social policy, organizational practice, and the concrete daily living realities of individual consumer/survivors have a long way to go to reach a more ideal state. Participants spoke passionately about their vision for citizens with mental health problems, one in which they have considerable power, acceptance from the community, and access to a range of resources. One of the contributions of the material summarized in Table 12.1 and the findings related to policy, organizational, and individual change is that we have identified important areas of change that need to be explored further in future studies of the empowerment-community integration paradigm. These suggest that there are many indicators of change (e.g., social network size, housing stability, employment, education, improved relationships, and self-esteem). In future studies, questionnaires could be developed that tap these dimensions that we have identified. Research on the empowerment-community integration needs to have indicators that are consistent with the values of this paradigm, rather than relying on indicators that have been used in studies of the traditional paradigm. One unexpected finding from this exercise was the discourse related

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Table 12.1. Values, elements, and ideal indicators of the empowerment-community integration paradigm in community mental health Values

Elements

Consumer/survivor empowerment

Personal empowerment

Community integration

Ideal indicators

• There is consumer/survivor independence. • Consumer/survivors have a positive self-image. Voice, choice, and • Consumer/survivors have choice control over over the type and source of support. services and • Consumer/survivors' choices about medication are viewed in terms of supports choice, not 'compliance.' Voice, choice, and control • Consumer/survivors have a strong voice on all organizational over organizational committees. planning and policy • Consumer/survivors constitute the majority on agency boards and committees. • Consumer/survivors have control Consumer/survivor over how mental health dollars are control over financial spent. resources • Consumer/survivors are staff at all levels of the organization. • Consumer/survivors participate Participation in the community everywhere in the community, in all walks of life. • There is non-segregated living, working, and playing. Acceptance of consumer/ • People are loved and accepted for who they are. survivors as valued • Consumer/survivors do not feel members of the community and eradication ashamed, isolated, or stigmatized. of stigma and labelling Relationships with people who are not consumer/survivors

Participation in self-help and mutual aid

• Consumer/survivors have relationships with people in normal community settings, recreation and leisure, work, education. • Consumer/survivors have informal support and are not isolated. • Consumer/survivors have their own independent organizations over which they have total control. • Consumer/survivors have peer support.

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Table 12.1. Values, elements, and ideal indicators of the empowerment-community integration paradigm in community mental health (continued) Values

Elements

Ideal indicators

Access to valued resources

Income

• Consumer/survivors are assured a guaranteed minimum income that allows them to live in dignity and peace. • Consumer/survivors have decent financial support, not poverty level. • There is a focus on homes as opposed to housing. • Everyone has access to clean, safe, affordable housing; housing is a basic human right. • There are more sensitive departments in schools and universities that aim to support students who are consumer/survivors. • Colleges and universities have supported and flexible education policies to ensure access and support. • An employment strategy to eliminate unemployment of consumer/survivors who want to work at whatever work or level they want. • Consumer/survivors do not lose financial support when they try to go back to work. • Treatment and support focus on spiritual, emotional, mental, and physical aspects of health. • Treatment and support focus on the whole person. • Consumer/survivors get full information about treatment. • Consumer/survivors have a directive role with psychiatrists and professionals. • Professionals listen to and respect consumer/survivors. • Professionals acknowledge their own mental health issues. • Consumer/survivors' experiential knowledge is considered valid. • Consumer/survivors disseminate their knowledge about recovery to professionals.

Housing

Education

Employment

Holistic health care (treatment and support)

Holistic treatment and support

Information from professionals

Professional attitudes and behaviours

Valuing of consumer/ survivors' experiential knowledge

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New Directions for the Paradigm Table 12.1. Values, elements, and ideal indicators of the empowerment-community integration paradigm in community mental health (concluded) Values

Elements

Ideal indicators

Individualized and flexible support and treatment

• There is a move away from 'programming' to individualized supports. • Services and supports build upon consumer/survivors' strengths. • Support is provided in a person's home or wherever it is needed in the community. • Life changes for the consumer/ survivor are minimized while treatment is provided. • There is cooperation and common goals between psychiatrists and support workers. • There is more coordination and cooperation among service providers. • Consumer/survivors direct support coordination.

Community and home-based support

Coordination of treatment and support

to treatment. We learned from this forum and from the individual stories, which we described in Part 4, about the pervasive role that mental health treatment services play in the lives of psychiatric consumer/survivors. While our study focused on three settings that provide support, not treatment, the reality is that psychotropic and psychotherapeutic interventions by professionals and occasional stays in hospital are an integral part of many people's lives. Participants at the forum spoke at length about ideal indicators of holistic health care, which includes both treatment and support. Ideal indicators of holistic health care include clear information, respectful behaviour by professionals, professional validation of consumer/survivor knowledge and experiences, and individualized services. These findings are quite similar to those obtained in a study by Constantino and Nelson (1995) of ideal relationships between members of mental health self-help groups and mental health professionals. However, it was also clear from forum participants, as well as from the stories, that these ideal qualities are often not present in people's relationships with professionals who

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provide treatment services. Participants stated that they want the same types of relationships with mental health professionals in hospitals and other treatment settings that they have with support workers and peers in the community support and self-help organizations in this study. We expand on this theme of what mental health treatment would look like in the empowerment-community integration paradigm later in this chapter. However, we first consider a value that is relatively neglected in discourse about this paradigm in community mental health. Researcher Reflections on the Values of the Empowerment-Community Integration Paradigm: Diversity as a Neglected Value

One value that is gaining much attention within postmodern and critical perspectives, but which was not frequently mentioned in our research, is that of diversity (hooks, 1984; Prilleltensky and Nelson, 1997). Diversity refers to the differences among people that create unique identities. While psychiatric consumer/survivors share a bond through similar experiences with serious mental illness and the mental health system (Everett, 1997), it is important to recognize that consumer/survivors also differ in many ways. In our conceptualization of this research, we did not focus on the issue of diversity, which likely explains why this issue was not frequently discussed. People can differ from one another in a great many ways, including gender, class, sexual orientation, race, ethnicity, and other disabilities, to name a few (Watts, 1992). In response to the needs of members, WRSH offered separate support groups for men and women, and CMHA recently noted the need to focus on the unique mental health needs of women. While there are also significant mental health issues facing gay, lesbian, and bisexual people, these do not appear to be in the spotlight of the three organizations. Similarly, from our observations, it appears that the vast majority of people served by the three organizations are white, even though the K-W area is becoming increasingly diverse and home to immigrants and refugees from many countries. Each of the agencies has had discussions about the need to respond more to visible minorities and people with physical disabilities, but these efforts are in their beginning stages. Consumer/survivors also differ from one another in terms of the types of symptoms that they experience and their severity or duration. With respect to mental health concerns consumer/survivors are not a

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homogeneous group. This element of diversity appears to be receiving more attention than those mentioned previously. In each organization, there has been an explicit shift towards a very customized, individualized approach to support. In these organizations the 'one size fits all' approach is a thing of the past. WRSH members did indicate to us that the diversity of consumer/ survivors can pose a challenge for obtaining consensus on issues. This was especially the case for the political beliefs of WRSH members. While some of them hold strong social justice beliefs, others are more conservative in their political orientation. According to WRSH representatives, these divergent beliefs make it difficult to obtain consensus for advocacy positions that the organization might wish to take. The same is true of the two other organizations, which also have mental health professionals and family members on their boards of directors. Finding common ground for mental health advocacy is an ongoing challenge because some constituents are more grounded in the traditional paradigm, while others are more allied with the empowerment-community integration paradigm (Simmons, 1990a). We believe the value of diversity is an important one for the empowerment-community integration paradigm. Although it is unreasonable to expect that small, community-based organizations can work on implementing all of their values at the same time, it is nevertheless important to be aware of what values are being neglected (Prilleltensky and Nelson, 1997). Diversity is currently one of the most neglected values that we believe deserves greater attention in the implementation of the empowerment-community integration paradigm in the future. Holistic Health Care within the Empowerment-Community Integration Paradigm? In Chapter 2 we introduced the contours of an empowerment-community integration paradigm in community mental health and contrasted it with two approaches that we identified as constituting the traditional paradigm in mental health: (1) the medical-institutional approach and (2) the community treatment-rehabilitation approach. Consumer/survivors and proponents of the empowerment-community integration paradigm are often quite critical of the traditional paradigm (e.g., Burstow and Weitz, 1988). But what about people's needs for treatment and rehabilitation? In his vision of recovery as a guiding theme for mental health, Anthony (1993) argued that different mental health services

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address different aspects of mental illness. He emphasized that treatment and crisis intervention can be viewed as addressing people's psychological and emotional 'impairments'; community treatment and rehabilitation (including case management) are seen as focusing on social 'dysfunction'; while rights protection, support, and self-help are believed to be well suited to increasing community opportunity. While Anthony's vision is broader than the traditional paradigm, it suggests that the traditional and empowerment-community integration paradigms both have their places in a system of mental health care. In Anthony's vision, the institutional-medical and community treatmentrehabilitation approaches are still seen to be valuable, and both are described in deficit-oriented language (e.g., 'impairment,' 'dysfunction'). We propose a somewhat different vision that is based on what our community stakeholders viewed as important. We believe that, while the functions of the traditional paradigm are important (i.e., treatment and rehabilitation), such functions might be better provided within the framework of the empowerment-community integration paradigm. In other words, treatment and rehabilitation services would be driven by the values and principles of the empowerment-community integration paradigm. In Figure 12.1 we outline two dimensions for an empowerment-community integration paradigm in community mental health that incorporates the value of holistic treatment and support, as identified through the small group discussions at the community forum that we held. The vertical axis is a dimension that focuses on the goals of the intervention, ranging from treatment to community support. Treatment focuses on symptom management and life skills development. Community support is the focus of the empowerment-community integration paradigm. In including these different goals on one dimension, we are suggesting that both are important for consumer/survivors. At any given point in time, one goal may be emphasized or needed more than another. Or both goals can be addressed at the same time. The second dimension, formal to informal support, emphasizes the way in which both types of goals on the first dimension can be met. Formal support is provided by mental health professionals, whereas informal support is provided by peers, family members, friends, and other network members. In between the formal and informal supporters are volunteers and paraprofessionals, who are not clearly either formal or informal supporters. There may also be partnerships between formal and informal supporters in the middle part of this dimension. We

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Figure 12.1. Key dimensions of the empowerment-community integration paradigm for treatment and community support.

believe that this dimension is different from previous conceptualizations, because it suggests that informal supports and hybrids of formal and informal support cannot only work towards the goals of community support, integration, and access to valued resources, but also towards treatment and rehabilitation goals. Before we describe examples of this approach in action, it is important to note that this framework presupposes the value of stakeholder participation and empowerment. No matter what the goal (e.g., treatment or support) or how the goal is to be reached (e.g., through formal or informal support or both), all interventions should be based on power sharing and participation in order for them to be congruent with the value base of the empowerment-community integration paradigm. A power contract that strives to be equitable is a given for what we are proposing (Janeway, 1980). The upper right-hand and left-hand quadrants of Figure 12.1 focus on treatment and rehabilitation. While treatment and rehabilitation are typically seen as the domain of the professional, the empowerment-community integration paradigm suggests that consumer/survivors should

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ideally have a range of services and supports to meet their needs for treatment and rehabilitation. Also, an individual need not only choose one type of support; various combinations can be selected. Finally, as one's needs or preferences change, different options can be selected. No matter what the approach, the prerogative of consumer/survivors is first and foremost. In the upper right-hand quadrant, some consumer/survivors may decide to use the services of a psychiatrist or some other mental health professional for psychotropic medication or rehabilitation training. But in the empowerment-community integration paradigm, professionals provide information, respect consumer/survivors' choices, and value their experiential knowledge (as outlined in Table 11.5). Perhaps, a more desirable alternative is to have treatment and rehabilitation services provided in the context of a community health centre. In such settings, medical treatment is integrated with informal support in a more holistic manner than is the case in hospital and clinic settings that are guided by the medical model (hence the positioning of this alternative in the middle of this dimension). Another option is to have treatment provided by psychiatrists who have experienced serious mental illness themselves. There could be consumer/survivor-run pharmacies and safe houses run by consumer/survivors as an alternative to hospitals for crisis intervention. In the upper left-hand quadrant, treatment and rehabilitation can be provided through informal support. Self-help groups that focus on positive symptom management are one alternative. Through their experiential knowledge, consumer/survivors can share strategies that they have found successful for coping with and managing symptoms. Another possibility is the use of natural, non-pharmaceutical remedies, such as St John's wort for depression. The lower right-hand and left-hand quadrants focus on the promotion of community integration, support, and access to valued resources. In the lower right-hand quadrant are assertive community treatment (ACT) teams, which are professionally staffed community treatment and rehabilitation teams. Some consumer/survivors might opt for this approach, particularly if they can have more power and control over the nature of this intervention. In the middle of this continuum are mainstream community mental health agencies that operate from the value base of the empowerment-community integration paradigm. These are organizations like CMHA in Waterloo and Waterloo Regional Homes. Services and supports are provided by professionals, paraprofessionals, volunteers, and peers and are driven by the principles of stakeholder

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participation and choice. Supported housing, employment, and education would be a critical piece of such supports. In the lower left-hand quadrant are informal supports aimed at promoting community integration and access. This includes self-help and mutual aid organizations, which provide peer support groups and consumer/survivor-run businesses. Other citizen-based initiatives like the Inter-Church Chaplaincy Project and the Welcome Home Initiative, described earlier in this book, are examples of informal supports that focus on community integration and access. Although the approach that we have described in this section is admittedly sketchy, we believe that it serves a useful heuristic purpose for community mental health reform. First, it suggests that there is no single correct path for providing services and supports towards the goals of treatment, rehabilitation, and community integration and access. Rather, there should be an array of choices and diverse alternatives. Second, this framework opens the door to re-examine treatment and rehabilitation from a non-medical model perspective. We have suggested that there are a variety of ways that informal supports and hybrids of formal and informal support can be organized to respond to psychiatric consumer/survivors' needs and preferences for symptom management and life skills development. Thus, we are pushing the boundaries of the empowerment-community integration paradigm into the deeply entrenched systems of professional and medical intervention. Within the range of alternatives, however, we want to affirm that the values and principles of the empowerment-community integration paradigm need to remain front and centre. Beyond Community Mental Health: the Empowerment-Community Integration Paradigm as a Guide for Social Policy and Practice for a Just Society When we think of community support and social policy, there are clearly competing paradigms for the twenty-first century. For some the corporate vision of a privatized health and social service system holds sway. This vision is based on an ideology that suggests that individuals should be totally responsible for themselves. For others there is a vision of collective responsibility for the welfare of all citizens. This latter vision implies the need for social polices and community structures that support vulnerable people. While our study of implementation and change in community mental health is rooted in the tradition of the latter

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vision, it also suggests new ways of supporting people. The empowerment-community integration paradigm suggests a social agenda that pays attention to both the 'public good' and 'equality.' These ideals serve as a guide for social policy and practice for a just society. Public good implies that the society supports the well-being of all its citizens. Mark Kingwell (1998) has argued that the public good demands justice, participation, and citizenship. Similarly, some researchers (e.g., Putnam, 1993) have shown that engagement, affiliation, and participation are important ingredients for social well-being. We suggest that the public good is also about inclusion in community life. The values of stakeholder participation, empowerment, community support, and integration give life to the public good. Equality is an essential ingredient for effective disability policy. Bickenbach (1993) noted that disabilities in our society have been constructed as 'differences' and 'inequalities.' He argued further that policy that embraces justice and equality provides a context for respect, participation, and accommodation. Such a focus mandates the removal of obstacles to supports, opportunities, and other social disadvantages (ibid.). The value of access to valued resources and social justice give life to equality in the empowerment-community integration paradigm. We have linked the empowerment-community integration paradigm to 'public good' and 'equality' to suggest that this paradigm might be a guide for social policy and practice for a just society. For this to occur, social policy would need to consider all elements of the new paradigm. After years of government retreating from the public good and equality, there is some evidence of a renewal of these ideals. Recently, for example, the Social Planning Council of Metropolitan Toronto developed a social vision for the twenty-first century. This vision included the values of interdependence, fairness and equity, participation and contribution, and diversity, which are similar to the values of the empowerment-community integration paradigm that we have identified throughout this book. In late 1998 the federal-provincial-territorial ministers released their In Unison: A Canadian Approach to Disability Issues — A Vision Paper, in which they provided a policy framework that includes greater equality and inclusion of persons with disabilities in all aspects of Canadian society. The empowerment-community integration paradigm may well appeal to other fields that are concerned with vulnerable populations. Whether it is developmental disabilities, child welfare, family support, or aging, the policy and practice issues are similar. This paradigm espouses values that need clarity in all of these fields. How often do we hear discussions

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of community integration for vulnerable elderly persons? In practice, these values will likely have great appeal to the baby boomer generation, which is starting to raise questions about how it wants to experience its elderly years. And child welfare is an area where there is finally attention being paid to how to build the strengths and capacities of child, youth, and families. Is it not time to utilize a paradigm that focuses on assets, not deficits? Winds of change are slow, and we have already seen how the empowerment-community integration paradigm got sidetracked in Ontario when the government changed policy directions. Like any sound idea, however, this paradigm is resilient and capable of growing in strength despite opposition. The community of Kitchener-Waterloo has demonstrated that the empowerment-community integration paradigm can be a sustaining influence in community mental health and beyond. While we see many virtues to and applications of the empowermentcommunity integration paradigm, we have also identified many challenges of implementation in one community. As we gain more experience with the empowerment-community integration paradigm, new problems and new solutions will emerge, leading to a fuller understanding of the discourse and practice of this paradigm. In our final chapter people connected with our project share their reflections. We welcome you to reflect on what this paradigm means to you in your life.

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Chapter Thirteen

Final Reflections on the Research Process

In this final chapter of the book we conclude with reflections on the research process. We begin with our own reflections, then we share the reflections of two members of the steering committee and three consumer/survivor research assistants who were members of the research team. Reflections of the Research Investigators During our research study we were not only learning about the organizations and the change in community mental health, but we were also constantly learning about new ways to conduct participatory action research. At the beginning of the project, for example, we had not expected that consumer/survivors would be participating in every aspect of the research, including writing up the findings and presenting them. Also, our roles were changing as the research evolved, and involved us as facilitators, trainers, supporters, and bridge builders. As Mitchell and Radford (1996) suggested, in the new paradigm there are multiple roles for researchers. With these new roles and relationships, we each experienced different feelings and thoughts about ourselves in relation to the research and to our partners. We share some of these experiences. Geoff's

Reflections

As I reflect back on this study I am struck by how my graduate training did not prepare me at all for this type of research. Instead, I needed to learn to trust my own judgment and use experience as my teacher. How

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was I to practise empowerment research when I had the edicts of 'control' drummed into me in my research training? Quite simply, I had to learn to listen and be humble when consumer/survivors said things to the effect that This does not make sense.' Sharing leadership and decision-making, I believe, led to a research endeavour that made sense to everyone. I also learned that empowerment research is about exchanging information, points of view, and experiences, such as we had at our monthly steering committee meetings. I have always believed in the importance of good communication, but I think I relearned this lesson throughout this project. I also learned that the relationship aspects of community research are as important or more important than the scientific aspects. In my training, I learned that there are the 'experimenters' and the 'subjects' in research. This is another idea that does not make sense in community research. Members of the steering committee and research team, who became co-researchers with us, are people with a great deal to contribute. As in any relationship, there were light moments of laughter and fun, serious discussions about important issues, and occasional conflicts. I believe that our strong relationships and good communication helped us to resolve the few conflicts that we experienced. One thing I struggled with throughout the project were the personal issues and the poverty that some of the consumer/survivors who participated on the project live with on a daily basis. Once the relationships began to develop, some individuals shared painful experiences that were personally disturbing to me. After the meetings, which we all enjoyed a lot, I would drive home in my car. Several of the consumer/ survivors did not have cars and would share rides. This symbolized for me the great difference in income between us and made me aware of how privileged I am. I sometimes felt ashamed of how much I have. But that feeling of shame does not really get anyone anywhere. So what I took away from my discomfort was a renewed motivation to work with people that I care about to help them get access to the same kinds of resources that I enjoy. Joanna's Reflections

Looking back over the two and a half years of the project, I recalled a number of challenges I experienced as a project coordinator, research team leader, and research partner. Perhaps the biggest challenge came from the expectations we had about our study. At the very beginning,

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the three of us expressed high hopes and had many ideas for making this an innovative project. We wanted to demonstrate that our project and all the people involved in it could work together in a way that mirrored the values of the empowerment-community integration paradigm. In our discussions we questioned whether what we were doing was in line with the principles of participatory action research and the new paradigm. I felt obligated to make sure that the principles were implemented and used in everyday practice. I found myself feeling responsible and sometimes worried about the experiences of all involved. I tried to make these experiences as positive as possible for everyone who was part of the study. I learned many lessons about creative project management. Challenges came from adding extra research activities within the same, small budget (e.g., the conference presentation, community forum). Sometimes planned activities took much more time and effort than expected. For example, during the third phase of the project when we were organizing our case studies, many of the potential research participants were experiencing difficulties, with some being hospitalized after they had agreed to be a part of the study. This stretched our time lines and required flexibility and creative problem solving. Working with inexperienced research assistants (mental health survivors and students) challenged me in another way. I found that having regular team meetings, which had three parts (training, reflecting on activities done, and planning future activities), helped to build relationships among team members and contributed to our sense of 'team spirit.' Practising the values and principles was one of the strategies that we used. Another strategy was sharing my own vulnerability; this helped to bridge our experiences and struggles and to relate to each other as humans. I found myself understanding the research assistants' challenges and learned to have a backup plan for all activities. When one of the research assistants was ill, another was able to step in and take extra responsibilities. I also felt a constant struggle with the amount of time the project required. Our project required many formal and informal contacts between research activities, such as keeping in touch and building relationships. At the same time, I was working on other research projects which limited the amount of adjustable time available. 'Flexible' was the way I defined my weekly schedules. As the coordinator of the Centre for Research and Education, it was also important for me to make sure that I had time for other research projects and administrative activities. Dur-

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ing the time of the study, the centre experienced a rapid growth in terms of the number of projects and staff. Balancing my diverse responsibilities with the need to be available for ongoing support to the research assistants and other partners was challenging and satisfying. I felt compassion for the participants, for the research assistants, for the organizations, and for the future of our community. I found myself identifying with the lives of consumer/survivors, their hopes, and their pains. For me that identification involved some realization of how much I have in common with these people. My identification also involved some frustration in realizing the barriers and difficulties in making a real change in our system. So the balance between hard work, serious discussions, constant reflections, and learning was mixed with having a good time, laughing, and enjoying each others' company. John's Reflections

From the first time that Geoff, Joanna, and I started meeting to plan this project the chemistry was right! Having been involved in numerous research projects over the years, I knew how important it was for the senior team to be grounded, committed, and 'working from the same page.' This lesson proved itself time and time again during this project, as we worked very comfortably together utilizing the same values and principles. Our collaborative way of working also created a model for others in the project. As a co-investigator, I was less involved than Geoff and Joanna in the day-to-day research activities. Sometimes this meant I had to work from 'second-hand experience' when working on an issue or with data. Although this was frustrating at times, I learned to trust the research process and to utilize the outstanding 'audit trail' that Joanna's research team had so carefully constructed. This experience reminded me of a critical lesson in community research: the importance of teamwork and the competence of individual researchers within that team structure. At the time of our project I was also doing some writing about 'partnerships' between disability groups, researchers, and community agencies. I learned from our project the value of being clear and explicit in partnerships. I am suspicious of 'false partnerships,' where everyone acts politely towards each other, while real differences or power issues are ignored. This project had an 'edge,' with tough issues on the table at the steering committee and within the research team. I felt that a genuine 'common ground' emerged among the various partners, even while

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sincere differences remained. Differences among our partners are now much less in relation to values and principles and are more related to strategies and tactics. For example, I sensed that there was respect for WRSH's uncompromising opposition to the introduction of ACT teams in our community, even though others approached ACT in a more collaborative fashion. I have learned that these kinds of differences should be seen as healthy and an important safeguard for any gains that have been made towards the empowerment-community integration paradigm. Yes, we need genuine partnerships, but we also desperately need voices for change and advocacy that are independent and sometimes forceful! Reflections from Steering Committee Members In this section two steering committee members share their reflections on their participation. The first is written by Anne Tschirhart, who was previously the executive director of Waterloo Region Self Help (WRSH) and who is currently the coordinator of branch development at the Canadian Mental Health Association (CMHA). What follows is an edited excerpt from Anne's invited address to the annual general meeting of the Centre for Research and Education in Human Services (12 September 1997). Creating an Inclusive Community

The Centre (for Research and Education in Human Services) has become a friend to the local psychiatric survivor movement, and as the relationship grew, so did the level of trust. Achieving a level of trust through continued involvement may seem like an easy and natural occurrence, but the barriers to a trusting relationship have been many. The notion of research is not one that sits well with a lot of psychiatric survivors. Personally, I can seldom think of the word 'research' without thinking of some of the more horrendous things that have been done in its name. I think of Dr Ewen Cameron and his infamous LSD brainwashing experiments that were, with the approval and financial support of the Canadian government, carried out on psychiatric patients. Research makes me think of all the abuse that has occurred over the years, and continues to occur, in a world where our scientific community has had licence to exploit the institutionalized. In a lot of cases, I think our scientists remain unchallenged in the belief that this segment of the popu-

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lation is their own personal laboratory. So you can imagine how incredible it is that a psychiatric survivor initiative has come to work willingly and in partnership with a research facility. Being involved with the participatory action research of the centre is an exciting way to learn. The centre does not do research on people; they do research with people. And the learning is two-way. When the 'paradigm' research project was first proposed to the members of WRSH, there was a fear of exploitation, and many people expressed the following sentiment: 'How come the professionals are never interested in the things that I have to say until another professional puts my words in quotes and calls it research?' There is a truth in that sentiment. When people want to learn, they review the literature and talk to the academics. Learning would be a lot less cumbersome and lot less confusing if people could learn to learn from the source. The centre for Research and Education works to empower the vulnerable members of our community in just that way. The centre ensures that the voice of marginalized people does not get lost in the bureaucracy of research. They work to encourage marginalized people to become educators, and they work to build a community that is responsive to the message of marginalized people. Because of the ongoing work of the 'paradigm' research project and the participatory action research model used by the centre, our community has had the advantage of learning as we move forward, identifying from the initial stages of mental health reform what elements in our community help or hinder the successful emergence of the new paradigm. Consistent with the participatory action research model, the centre works with its stakeholders from the design stage, and participants have and enjoy meaningful involvement in all stages of the research. The research carried out by the centre is action-oriented and highly usable. The centre creates much more than a bound document, left to gather dust on a shelf. Feedback is ongoing, throughout the process, and the research project inevitably becomes a means for the group to learn and grow towards its ideals. Research findings are shared, not only in academic quarters, but across the community through summary reports and conferences and are presented in a manner thfit is accessible and of interest to the larger community. In this way education becomes 'hands on' and community-based, extending beyond the academic environment to the people who live and work in the community. I believe equality to be an indicator of the empowerment-community integration paradigm in community mental health, and the closest

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experience I have had to equality with other stakeholders has been through my involvement with the 'paradigm' research project. The project steering committee, of which I am a member, has consistently, over a two-year period provided me with the opportunity to experience the reality of the new paradigm. Each month, in the back room of the centre, professionals, academics, and consumer/survivors have been working effectively from a new paradigm perspective and that working relationship alone has given me faith in the possibility of creating a better world. The next reflection is an edited version of an article written by Jane Hildreth, a staff member of Waterloo Regional Homes and a member of the steering committee, and published in the Centre for Research and Education NewsReport, fall 1988. Research Committee! Are You Kidding? On 1 February 1996,1 walked into the Centre for Research and Education for the first time. I had agreed to represent my agency, Waterloo Regional Homes for Mental Health Inc., on the steering committee for the Paradigm Shift Study. The study was to review and analyse the changes in services within three local mental health agencies. I have to admit I was somewhat intimidated and terrified. I was not quite sure what I had agreed to and thought to myself that I had really got myself in way over my head. I remember looking around the room at all the faces. Names of folks that I knew, faces of folks I did not know, and reputations of all. I again asked myself what was I doing there! I thought that another staff member from our agency should be doing the representing. The meeting began with Geoff Nelson introducing himself, and then he asked that we go around the room and have everyone share something personal about themselves. I was intrigued by what I heard. All of a sudden these reputations became people. People with families, pleasures, and lives. They were not only people connected to mental health. There was another side to them. I was so busy worrying about speaking in front of these folks that I forgot that there was more to them. They did not live mental health twenty-four hours a day. We were all on an equal playing field. Instead of being labelled as consumers, family members, staff, and research members, we became committee members. The personal element remained for the full two years. We kept our personalities part of

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the committee. We shared birthdays, losses, and illnesses. We became committee members and co-workers first and agency representatives second. It was pretty amazing. I am not quite sure when this happened; however, I think we all realized this connection 'after the fact.' I benefited greatly from joining this committee. I learned about research. This was something I had no clue about in the first place. I learned about the other two agencies involved in the study in more depth. I found that through listening and working on the study, I began to understand the missions and ideologies of the co-agencies. I guess one of my biggest realizations, however, was that all three agencies were all working towards the same goals. We were only utilizing different ideas and styles to accomplish our goals. We complement each other. We may be different, but we are successful and effective. Consumers are truly given a choice. The paradigm shift has happened. I think a valuable benefit for me was that the research experience kept me honest with myself and with others. I was promoting my ideas at the steering committee meetings, and I was meeting members at other community activities. Was I promoting the same message in both places? I believe I was and continue to do so, however, it was a good experience for me. I could look at myself and ask questions to validate myself. The committee members became a gauge for me. I trusted these people to tell me honestly if I was not walking the same walk as I talked. These people became a part of my working life for the two years of the study. The good part is that some of them have become trusted confidants, close friends, and mentors. That is the biggest benefit of all. My feeling of being intimidated because of my lack of understanding of the concept of research, my fear of looking stupid, and my desire to participate while being uncertain about how to state my ideas were my challenges. I had to work at letting go of preconceived notions of who these people were and at taking away the reputations. It happened without my really knowing, but I began to speak and share my thoughts. I had volunteered to take the minutes for the committee meetings, because I believed that if I was writing, no one would seek my thoughts and opinions. Boy, was I wrong! You could not hide at these meetings. They got you to give opinions and share, even when you did not realize it was happening. Trust grew for me. I found that when I spoke, people listened. I kept on talking. I wonder if they realized the impact the group was having on me. I do believe that I was not the only one who felt the trust. Humour was also a key to building trust. We laughed and laughed some more. Every meeting brought some comical moment. It kept the

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meeting light, and at times we needed a release. I think we all saw the funny side to some of the moments, and humour kept us focused. When you laugh, things do not seem as overwhelming. Ideas and solutions usually rose to the surface after a good chuckle. Trust, humour and respect helped to build and to solidify the relationships of the committee. For me, one of the best examples of the bond that was formed came in November 1996. We were presenting our study at the Orthopsychiatric Conference held in Toronto. A gentleman in the audience was not overly positive about our presentation. One of the members of the research team responded to this gentleman with determination, knowledge, and dignity. The group supported the research member and assisted throughout the remainder of presentation to carry on with his promotion of the study. We left there that day proud of the study, our community, ourselves, and each other. We were focused, determined, and motivated to complete this study. Maybe some day our 'friend' from that conference will read our study and remember us. I hope so! This research project has taught me about myself, my own agency, the other two local mental health agencies, and about research itself. I now understand research better. I now know what people are talking about. (Research has a language of its own!) I learned that research is not boring, it does have a purpose, and it can provide a great wealth of knowledge for ourselves and others. I learned that it gives many an opportunity to grow. I guess the biggest lesson that I learned was that something that intimidated me at the start ended up being a great learning experience. In conclusion, I would encourage any group planning a study, or utilizing a steering committee, to keep the personal element at the forefront. It has been my experience and validated by my time at the centre for research that if you show an interest in the people you are working with, it makes the whole experience a much more powerful one. I think the lessons that I have learned along the way as a member of the research steering committee are that you can be close to the people you work with, as well as accomplish your goals. You can take the time to get to know people and make the work experience a much more enjoyable one. It is my belief, and one that the centre has reinforced, that if you do not build trusting, friendly, and enjoyable relationships with the people you are working with, you end up missing out. Relationships that are developed through work activities can be stepping-stones to new ideas, contacts for help, and supports in the future. I left this project with new

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friendships, renewed friendships, a mentor, and knowledge about a group of folks that I can call on for advice and suggestions. Pretty impressive, don't you think? I think so! Reflections of the Research Assistants The following are excerpts from the reflective field notes written by Paul Reeve, Sylvia Cornell, and Barry D'Costa, three of the research assistants, and from a focus group held at the end of the project in which the research assistants talked about their experiences in the project. Paul

The project dealt with shifting paradigms, and it has turned out to be work that was very fulfilling and satisfying and that challenged me to shift my thinking in a number of areas. My assumptions and beliefs have been confronted in the areas of work, relationships, power, and teamwork. The relationships among team members strengthened as the project progressed, and there was cohesiveness and growing trust that was enhanced as everyone shared pieces of their personal lives. This created a comfortable environment that allowed me to be me and participate even on those days when I was struggling with life. I found all the people at the centre created a very encouraging atmosphere. It was very empowering for me to be asked my opinions and positions. The leaders shared power through seeking consensus and including all team members in decision-making. It is heartening to me to see that this more open approach to working and participatory research is just as, if not more, effective than the traditional methods. The project has turned out to be a wonderful opportunity to grow and meet some fabulous people, and I thank everyone connected to it. The scepticism I arrived with proved unfounded, and over the course of the project I have developed a great respect for the staff and volunteers connected to the centre as they have demonstrated integrity and 'walked their talk.' Sylvia

There was excellent camaraderie amongst the researchers - both professional and consumers, and at no point did I feel that we were treated

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with any less respect or given any less responsibility because we were consumers. At some points this actually became a difficulty for me because I felt I might be carrying more responsibility than I was capable of. Training was clear and straightforward without being condescending. In the first phase, I found it particularly supportive as we worked in teams with one consumer and one student or professional. This gave me a sense that I was not totally on my own but if one of us missed a point, the other might pick up on it. To be included in a fairly academic environment such as this, I found inspiring - the enthusiasm for the project was tremendous. The concept of the project and the fact that a group of people were interested enough and caring enough to devote their time arid attention to changes and/or the need for change in the mental health field is very encouraging. This kind of interest and compassion is not found in all walks of life. The experience was not always easy. There were times where other consumers expressed opinions different from my own, and it was not always easy to maintain objectivity. In general, I think it is a very positive move to utilize researchers who have 'been through the ropes.' They provide an understanding of the situation, a mutual bond with other consumers, and a hope that they too may have something to offer. Barry

I feel like participation on this project has helped me a great deal even in terms of my own recovery. How? Well, just by being involved, you know - a feeling that I carry every day that I am glad to be a part of this. And for me to be involved in this project, knowing that it means a lot to a lot of people, even on a provincial level, made me feel pretty good. I found a lot of compassion among my peers here at the centre when I struggled, when I fell ill again. The centre motivated me through its friendship. I was constantly aware of its concern for me, how I was doing, and even the visits to the hospital were very appreciated. That challenge was met by dedication driven by the centre and my recovery was okay. It was my shortest hospitalization ever, and it included a lot of support from people from the centre, which was really helpful. People here have a lot of compassion for people; they have work for them and consumers in the community. I really value the friendship with the people here. Even if the project is over it is nice to know that the relationships will still be intact. I cannot say the same for all my jobs I have ever had.

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A benefit was in being able to have a voice at our team meetings, to influence decisions. I felt I was empowered to play an important role in forming questions, and I felt I was a valued partner. If I had concerns I could raise them and not only just raise them, but the concerns would be valued as well. And often people would thank me for my comments. I would recommend that other projects look at this project as an example of successful participatory action research. It is innovative. It has been a good experience for me, and it can be a good experience for other consumer/survivors.

References

Allan, J. (1996). Foucault and special educational needs: A "box of tools" for analyzing children's experiences of mainstreaming. Disability and Society, 11, 219-33. Anthony, W.A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16, 11-23. - & Blanch, A. (1989). Research on community support services: What have we learned? Psychosocial Rehabilitation Journal, 12, 55-81. Anthony, W.A., Cohen, M.R., & Farkas, M.D. (1982). A psychiatric rehabilitation treatment program: Can I recognize one if I see one? Community Mental Health Journal, 18, 83-96. - (1990). Psychiatric rehabilitation. Boston: Boston University, Center for Psychiatric Rehabilitation. Argyris, C. (1976). Theories of action that inhibit individual learning. American Psychologist, 31, 638-54. Bandura, A. (1986). Social foundations of thought and action. Englewood Cliffs, NJ: Prentice-Hall. Bargal, D. (1992). The early stage in the creation of two self-help organizations: An exploratory study. Administration in Social Work, 16(3/4), 81-98. - & Schmid, H. (1992). Organizational change and development in human service organizations: A prefatory essay. Administration in Social Work, 16(3/4), 1-13. Barlow, M., & Campbell, B. (1995). Straight through the heart: How the Liberals abandoned the just society. Toronto: HarperCollins. Barnsley, J., & Ellis, D. (1992). Research for change: Participatory action research for community groups. Vancouver: Women's Research Centre. Baxter, E.A., & Diehl, S. (1998). Emotional stages: consumers and family mem-

268

References

bers recovering from the trauma of mental illness, Psychiatric Rehabilitation Journal, 21, 345-55. Beard, J.H., Propst, R.N., & Malamud, TJ. (1982). The Fountain House model of psychiatric rehabilitation. Psychosodal Rehabilitation Journal, 5, 47-53. Beinecke, R.H., & Perlman, S.B. (1997). The impact of the Massachusetts managed mental health / substance abuse program on outpatient mental • health clinics. Community Mental Health Journal, 33,121-30. Belford, J. (1984). The growth of the Canadian Friends of Schizophrenics. Canada's Mental Health, 32, 16-17. Berger, P.L., & Neuhaus, R.J. (1996). To empower people: From state to civil society (2nd ed.). Washington, DC: AEI Press. Bergquist, W. (1993). The post-modern organization. San Francisco: Jossey-Bass. Berry, W. (1990). What are people for? San Francisco: North Point Press. Bickenbach,J.E. (1993). Physical disability and social policy. Toronto: University of Toronto Press. Blanchet-Cohen, N. (1993). Mental health reform: A progress report. Toronto: Canadian Mental Health Association / National Office. Bloche, M.G., & Cournos, F. (1990). Mental health policy for the 1990s: Tinkering in the interstices. Journal of Health Politics, Policy, and Law, 15, 387—411. Block, P. (1993). Stewardship: Choosing service over self-interest. San Francisco: Berrett-Koehler. Bond, G.R., Drake, R.E., Mueser, K.T., & Becker, D.R. (1997). An update on supported employment for people with severe mental illness. Psychiatric Services, 48, 335-46. Bond, M.A., & Keys, C.B. (1993). Empowerment, diversity, and collaboration: Promoting synergy on community boards. American Journal of Community Psychology, 21, 37-57. Borkman, T.J., & Schubert, M. (1994). Participatory action research as a strategy for studying self-help groups internationally. Prevention in Human Services, 11, 45-68. Bronfenbrenner, U. (1979). The ecology of human development. Cambridge: Harvard University Press. Brown, L.D., & Tandon, R. (1983). Ideology and political economy in inquiry: Action research and participatory research. Journal of Applied Behavioral Science, 19, 277-94. Bullock, R. (1983). Participation and pay. Group Organizational Studies, 8,127-36. Burns, B.J., & Santos, A.B. (1995). Assertive community treatment: An update of randomized trials. Psychiatric Services, 46, 669-75. Burstow, B., & Weitz, D. (Eds.) (1988). Shrink resistant: The struggle against psychiatry in Canada. Vancouver: New Star Books.

References

269

Campbell, M., Copeland, B., & Tate, B. (1998). Taking the standpoint of people with disabilities in research: Experiences of participation. Canadian Journal of Rehabilitation, 12, 95-104. Canadian Mental Health Association. (1963). More for the mind. Toronto: Canadian Mental Health Association / National Office. Capponi, P. (1992). Upstairs in the crazy house: The life of a psychiatric survivor. Toronto: Viking. - (1997). Dispatches from the poverty line. Toronto: Penguin. Carling, PJ. (1995). Return to community: Building support systems for people with psychiatric disabilities. New York: Guilford Press. - Miller, S., Daniels, L., & Randolph, F.L. (1987). A state mental health system with no state hospital: The Vermont feasibility study. Hospital and Community Psychiatry, 38, 617-24. Carver, J. (1990). Boards that make a difference. San Francisco: Jossey-Bass. Chamberlin, J. (1978). On our own: Patient-controlled alternatives to the mental health system. New York: McGraw-Hill. - (1990). The ex-psychiatric patients' movement: Where we've been and where we're going. Journal of Mind and Behavior, 11, 323-36. - (1997). A working definition of empowerment. Psychiatric Rehabilitation Journal, 20, 43-6. - (1999). Keynote address to the International Association of Psychosocial Rehabilitation Services - Ontario Chapter, Niagara Falls, ON, 21 Oct. - Rogers, E.S., & Ellison, M.L. (1996). Self-help programs: A description of their characteristics and their members. Psychiatric Rehabilitation Journal, 19, 33-42. Chandler, D., Meisel, J., & McGowen, M. (1996). Client outcomes in two model capitated integrated service agencies. Psychiatric Services, 47, 175—80. Cherniss, C. (1978). The Consultation Readiness Scale: An attempt to improve consultation practice. American Journal of Community Psychology, 6, 15-21. Chesler, M.A. (1991). Participatory action research with self-help groups: An alternative paradigm for inquiry and action. American Journal of Community Psychology, 19, 757-68. Chu, F., & Trotter, S. (1974). The madness establishment: Ralph Nader's study group report on the National Institute of Mental Health. New York: Grossman. Church, K. (1993). Breaking down / breaking through: Multi-voiced narratives on psychiatric survivor participation in Ontario's community mental health system. Unpublished doctoral dissertation, University of Toronto. - (1995). Forbidden narratives: Critical autobiography as social science. Luxembourg: Gordon and Breach Publishers.

270

References

- (1996). Beyond 'bad manners': The power relations of 'consumer participation' in Ontario's community mental health system. Canadian Journal of Community Mental Health, 15(2), 27-44. - (1997). Because of where we've been: The business behind the business of psychiatric survivor economic development. Toronto: Ontario Council of Alternative Businesses. Church, K., & Creal, L. (1995). Voices of experience: Five tales of community economic development. Available from Fred Victor Centre, 145 Queen Street East, Toronto. Church, K., & Reville, D. (1989). User involvement in the mental health field in Canada. Canada's Mental Health, 37(2), 22-5. Cochrane, J., Durbin, J., & Goering, P. (1997). Best practices in mental health reform: Situational analysis - Prepared for the Federal/Provincial/Territorial Advisory Network on Mental Health. Ottawa: Minister of Public Works and Government Services. Condeluci, A. (1991). Interdependence: The route to community. Winter Park, FL: PMD Publishers. Constantino, V., & Nelson, G. (1995). Changing relationships between self-help groups and mental health professionals: Shifting ideology and power. Canadian Journal of Community Mental Health, 14(2), 55-70. Covey, S. (1989). The seven habits of highly effective people. New York: Simon and Schuster. Cromwell, H.S., Howe,J.W., & O'Rear, G. (1988). A citizen's coalition in mental health advocacy: The Maryland experience. Hospital and Community Psychiatry, 39, 959-62. Curtis, L.C., & Hodge, M. (1994). Old standards, new dilemmas: Ethics and boundaries in community support services. Psychosocial Rehabilitation Journal, 18, 13-33. Cutler, D.L. (1986). Community residential options for the chronic mentally ill. Community Mental Health Journal, 22, 61-73. Dain, N. (1994). Psychiatry and anti-psychiatry in the United States. In M. Micale & R. Porter (Eds). Discovering the history of psychiatry (pp. 415-44). Oxford: Oxford University Press. Deci, P.A., Santos, A.B., Hiott, D.W., Schoenwald, S., & Bias, J.K (1995). Dissemination of assertive community treatment programs. Psychiatric Services, 46, 676-8. Deegan, P. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal, 11(4), 11-19. Deutsch, A. (1949). The mentally ill in America. New York: Columbia. Dewees, M., Pulice, R.T., & McCormick, L.L. (1996). Community integration of

References

271

former state hospital patients: Outcomes of a policy shift in Vermont. Psychiatric Services, 47, 1088-92. Drake, R.E. (1998). Brief history, current status, and future place of Assertive Community Treatment. American Journal of Orthopsychiatry, 68, 172-5. Drake, R., & Burns, B. (1995). Special section on assertive community treatment: An introduction. Psychiatric Services, 46, 667-8. Drake, R.E., McHugo, G.J., Becker, D.R., Anthony, W.A., & Clark, RE. (1996). The New Hampshire study of supported employment for people with severe mental illness. Journal of Consulting and Clinical Psychology, 64, 391-9. Dunham, H.W., & Weinberg, S.K. (1960). Culture of state mental hospital Detroit: Wayne State University Press. Dunst, C.J., & Trivette, C.M. (1989). An enablement and empowerment perspective of case management. Topics in Early Childhood Special Education, 8, 87-102. Edelman, M. (1977). Political language: Words that succeed and policies that fail. London: Academic Press. Edwards, D., & Potter, J. (1992). Discursive psychology. London: Sage. Emerick, R.E. (1990). Self-help groups for former patients: Relations with mental health professionals. Hospital and Community Psychiatry, 41, 401-7. Everett, B. (1994). Something is happening: The contemporary consumer and psychiatric survivor movement in historical context. Journal of Mind and Behavior, 15, 55-69. - (1997). A fragile revolution: Consumers and psychiatric survivors confront the power of the mental health system. Unpublished doctoral dissertation, York University. Fairweather, G.W., Sanders, D.H., Maynard, H., & Cressler, D.L. (1969). Community life for the mentally ill Chicago: Aldine. Federal/Provincial/Territorial Ministers responsible for social services. (1998). In unison: A Canadian approach to disability issues — A vision paper. Hull, Quebec: Human Resources Development Canada. Folger, R., & Konovsky, M. (1989). Effects of procedure on distributive justice on the actions to pay raise decisions. Academy of Management Journal 32, 115-30. Foster-Fish man, P.G., & Keys, C.B. (1997). The person/environment dynamics of employee empowerment: An organizational culture analysis. American Journal of Community Psychology, 25, 345—69. - Salem, D.A., Chibnall, S., Legler, R, & Yapchai, C. (1998). Empirical support for critical assumptions of empowerment theory. American Journal of Community Psychology, 26, 507-36. Foucault, M. (1965). Madness and civilization: A history of insanity in the age of reason. New York: Vintage Books. - (1972). Power/knowledge: Selected interviews and other writings 1972-1977. New York: Pantheon Books.

272

References

Freire, P. (1973). Pedagogy of the oppressed. New York: Continuum Publishing. Friedmann,J. (1973). Retracking America: A theory of transactive planning. New York: Anchor Press. Fullan, M., & Stiegelbauer, S. (1991). The new meaning of educational change. New York: Teachers College Press, Columbia University. Gaventa.J. (1993). The powerful, the powerless, and the experts: Knowledge struggles in an information age. In P. Park, M. Brydon-Miller, B. Hall, & T. Jackson (Eds.), Voices of change: Participatory research in the United States and Canada (pp. 21-40). Westport, CT: Bergen and Garvey. Goering, P., Wasylenki, D., Lancee, W., & Freeman, S.JJ. (1984). From hospital to community: Six-month and two-year outcomes for 505 patients. Journal of Nervous and Mental Disease, 172, 667-73. Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Garden City, NY: Doubleday. Cuba, E.G., & Lincoln, Y.S. (1994). Competing paradigms in qualitative research. In Y.S. Lincoln & N.K. Denzin (Eds). Handbook of qualitative research (pp. 105-17). NewburyPark, CA: Sage. Hall, G.B., Nelson, G., & Smith Fowler, H. (1987). Housing for the chronically mentally disabled: Part I - Conceptual framework and social context. Canadian Journal of Community Mental Health, 6(2), 65-78. Hall, J. (1985). Productivity improvement through team building and organizational development: Evaluating the experiences of a human services agency at the county level. Public Personnel Management, 14, 409—16. - (1992). Public mental health policy: Some European issues. Journal of Mental Health UK, 1, 123-32. Hall, M., Knighton, T., Reed, P., Bussiere, P., McRae, D., & Bowen, P. (1998). Caring Canadians, involved Canadians: Highlights from the 1997 national survey of giving, volunteering, and participating. Ottawa: Statistics Canada. Handy, C. (1995). The age of paradox. Boston, Mass.: Harvard Business School Press. Harris, G.T., Hilton, N.Z., & Rice, M.E. (1993). Patients admitted to psychiatric hospital: Presenting problems and resolution at discharge. Canadian Journal of Behavioural Science, 25, 267-85. Health Services Restructuring Commission (1997a). Backgrounder. Toronto: Author. - (1997b). London health services restructuring report. Toronto: Author. - (1998). Waterloo Region health services restructuring report. Toronto: Author. Health Systems Research Unit, Clarke Institute of Psychiatry. (1997a). Best practices in mental health reform: Discussion paper. Ottawa: Health Canada.

References

273

- (1997b). Best practices in mental health reform: Situational analysis. Ottawa: Health Canada. - (1997c). Review of best practices in mental health reform. Ottawa: Health Canada. Hesleltine, G.F. (1983). Towards a blueprint for change: A mental health policy and program perspective. London: University of Western Ontario. Hogan, M.F., & Carling, P.J. (1992). Normal housing: A key element of a supported housing approach for people with psychiatric disabilities. Community Mental Health Journal, 28, 215-26. hooks, b. (1984). Feminist theory: From margin to center. Boston: South End Press. Howie the Harp. (1994). Empowerment of mental health consumers in vocational rehabilitation. Psychosocial Rehabilitation Journal, 17(3), 84—9. Humphreys, K., & Rappaport, J. (1993). From the community mental health movement to the war on drugs: A study in the definition of social problems. American Psychologist, 48, 892-901. - (1994). Researching self-help / mutual aid groups and organizations: Many roads, one journey. Applied and Preventive Psychology, 3, 217-31. Hunnicutt, A.W., & MacMillan, T.F. (1983). Beating burnout: Findings from a three-year study. Journal of Mental Health Administration, 10(2), 7-9. Hutchison, P., Lord, J., Savage, H., & Schnarr, A. (1985). Listening to people who have directly experienced the mental health system. Toronto: Canadian Mental Health Association / National Office. Hutchison, P., Lord,J., & Osborne-Way, L. (1986). Participating with people who have directly experienced the mental health system. Toronto: Canadian Mental Health Association / National Office. Janeway, E. (1980). Powers of the weak. New York: Knopf. Jenkins, J.C. (1983). Resource mobilization theory and the study of social movements. Annual Review of Sociology, 9, 527—53. Kelly, J.G. (1986). The ecological paradigm: Defining mental health consultation as a preventive service. Prevention in Human Services, 4(3/4), 1-36. Kieffer, C. (1984). Citizen empowerment: A developmental perspective. Prevention in Human Services, 3, 9—35. Kiesler, C.A. (1982). Mental hospitals and alternative care. American Psychologist, 37, 349-60. - (1992). U.S. mental health policy: Doomed to fail. American Psychologist, 47, 1077-82. Kingwell, M. (1998). Citizenship and the public good. Paper presented at Conference on the Public Good, University of Toronto, Nov. Kluger, M., & Baker, W. (1994). Innovative leadership in the non-profit organization. Washington, DC: Child Welfare League of America.

274

References

Kouzes,J.M., & Micos, P.R. (1979). Domain theory: An introduction to organizational behavior in human service organizations. Journal of Applied Behavioral Science, 15, 449-69. Kretzmann,J., & McKnight,J. (1993). Building communities from the inside out. Evanston, 111: Center for Urban Affairs and Policy Research. Kuhn, T.S. (1962). The structure of scientific revolutions. Chicago: University of Chicago Press. Lavoie, E, & Stewart, M. (1995). Mutual-aid and support groups: The Canadian context. Canadian Journal of Community Mental Health, 14(2), 5-12. Leff, H.S., Campbell, J., Gagne, C., & Woocher, L.S. (1997). Evaluating peer providers. In C.T. Mowbray, D.P. Moxley, C.A. Jasper, & L.L. Howell (Eds.), Consumers as providers in psychiatric rehabilitation (pp. 488-501). Columbia, Md.: IAPSRS Press. Lehman, A.E (1989). Strategies for improving services for the chronic mentally ill. Hospital and Community Psychiatry, 40, 916-20. Levine, M., & Levine, A. (1992). Helping children: A social history. Oxford: Oxford University Press. Levine, M., Toro, P.A., Perkins, D.V. (1993). Social and community interventions. Annual Review of Psychology, 44, 525-58. Lewin, K. (1946). Action research and minority problems. Journal of Social Issues, 2, 34-46. Light, P.C. (1998). Sustaining innovation: Creating non-profit and government organizations that innovate naturally. San Francisco: Jossey-Bass. Lincoln, Y.S. (Ed.). (1985). Organizational theory and inquiry: The paradigm revolution. Newbury Park, CA.: Sage. Lincoln, Y.S., & Cuba, E.G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage. - (1986). But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. In New directions for program evaluation (vol. 30, pp. 73-84). San Francisco: Jossey-Bass. Lomas, J. (1993). Health policy analysis - What is iff Hamilton, Ont.: Centre for Health Economics and Policy Analysis. Lord,J. (1994). Genuine partnerships: Challenges and opportunities. Keynote address to National Conference on Independent Living, Winnipeg, Manitoba, Sept. - (1997). Empowerment process and community: Reflections and paradoxes. Paper presented at the Empowerment and Social Work Conference, University of Toronto, September. - & Church, K. (1998). Beyond 'partnership shock': Getting to "yes," living with "no." Canadian Journal of Rehabilitation, 12, 113-21. - & Dufort, F. (Eds.). (1996). Power and oppression in mental health. (Special issue). Canadian Journal ofCommunity Mental Health, 15(2).

References

275

- & Hutchison, P. (1993). The process of empowerment: Implications for theory and practice. Canadian Journal ofCommunity Mental Health, 12(1), 5-22. - &Ochocka,J. (1995). Outcomes of an individualized family support program. Journal of Leisurability, 22(4), 22-32. Lord,J., Ochocka,J., Czarny, W., & MacGillivary, H. (1998). Analysis of change within a mental health organization: A participatory process. Psychiatric Rehabilitation Journal, 21, 327-39. Lord, J., & Pedlar, A. (1991). Life in the community: Four years after the closure of an institution. Mental Retardation, 29(4), 213-21. Lord,J., Schnarr, A., & Hutchison, P. (1987). The voice of the people: Qualitative research and the needs of consumers. Canadian Journal of Community Mental Health, 6(2), 25-36. Lucksted, A. (1997). Turning points and empowerment. Philadelphia: Center for Mental Health Policy and Services Research. MacGillivary, H., & Nelson, G. (1998). Partnership in mental health: What it is and how to do it. Canadian Journal of Rehabilitation, 12, 71-82. Macnaughton, E. (1992). Canadian mental health policy: The emergent picture. Canada's Mental Health, 40(3), 3-10. Manderscheid, R.W., & Henderson, MJ. (Eds.). (1998). Department of Health and Human Services Publication No. (SMA) 99-3285. Washington, DC: U.S. Government. Printing Office. Manning, S. (1999). Building an empowerment model of practice through the voices of people with serious psychiatric disability. In W. Shera & L. Wells (Eds.). Empowerment practice: Developing richer conceptual foundations. (102-17) New York: Columbia University Press. Maton, K.I., &: Salem, D.A. (1995). Organizational characteristics of empowering community settings: A multiple case study approach. American Journal of Community Psychology, 23, 631-56. McCarthy, J., & Nelson, G. (1991). An evaluation of supportive housing for current and former psychiatric patients. Hospital and Community Psychiatry, 42, 1254-6. - (1993). An evaluation of supportive housing: Qualitative and quantitative perspectives. Canadian Journal of Community Mental Health, 12(\), 157-75. McCubbin, M., & Cohen, D. (1996). Extremely unbalanced: Interest divergence and power disparities between clients and psychiatry. International Journal of Law and Psychiatry, 19, 1-25. - (1999). A systemic and valued-based approach to strategic reform of the mental health system. Health Care Analysis, 7, 1-21. McGregor, D.M. (1960). The human side of enterprise. New York: McGraw-Hill.

276

References

McKnight, J. (1995). The careless society: Community and its counterfeits. New York: Basic Books. Mitchell, T.L., & Radford, J.L. (1996) Rethinking research relationships in qualitative research. Canadian Journal of Community Mental Health, 15(1), 49-60. Moosbruker, J. (1983). OD with a community mental health center: A case of building structures patiently. Group and Organization Studies, 8, 45-59. Morris, A.D., & Mueller, C. (Eds.). (1992). Frontiers in social movement theory. New Haven, CT: Yale University Press. Mowbray, C.T., Chamberlain, P.,Jennings, M., & Reed, C. (1988). Consumer-run mental health services: Results from five demonstration projects. Community Mental Health Journal, 24, 151-6. Mueller, C.M. (1987). Collective consciousness, identity transformation, and the rise of women in public office in the United States. In M.F. Katzenstein & C.M. Mueller (Eds.), The women's movement of the United States and western Europe (pp. 89-108). Philadelphia: Temple University Press. Nelson, G. (1994). The development of a mental health coalition: A case study. American Journal of Community Psychology, 22, 229-55. - & Earls, M. (1986). An action-oriented assessment of the housing and social support needs of long-term psychiatric clients. Canadian Journal of Community Mental Health, 5(1), 19-30. Nelson, G., Hall, G.B., & Walsh-Bowers, R. (1995). An evaluation of supportive apartments for psychiatric consumers/survivors. Canada's Mental Health, 43, 9-16. - (1997). A comparative evaluation of supportive apartments, group homes, and board-and-care homes for psychiatric consumer/survivors. Journal of Community Psychology, 25, 167-88. Nelson, G., & Lord.J. (1996). New paradigms, new partnerships: A conceptual overview. Paper presented at the Annual Meeting of the American Psychological Association, Aug. Nelson, G., OchockaJ., Griffin, K., & Lord,J. (1998a). 'Nothing about me, without me': Participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors. American Journal of Community Psychology, 26, 881-912. Nelson, G., Prilleltensky, I., & MacGillivary, H. (in press). Value-based partnerships with oppressed groups: Toward solidarity. American Journal of Community Psychology. Nelson, G., Sadeler, C., & Cragg, S.M. (1995). Changes in rates of hospitalization and cost savings for people with psychiatric disability participating in a case management program. Psychosocial Rehabilitation Journal, 18(3), 113-23. Nelson, G., & Smith Fowler, H. (1987). Housing for the chronically mentally

References

277

disabled: Part II - Process and outcome. Canadian Journal of Community Mental Health, 6(2), 79-91. Nelson, G., & Walsh-Bowers, R. (1994). Psychology and psychiatric survivors. American Psychologist, 49, 895—6. Nelson, G., Walsh-Bowers, R., & Hall, G.B. (1998b). Housing for psychiatric survivors: Values, policy, and research. Administration and Policy in Mental Health, 25, 55-62. Nelson, G., Wiltshire, C., Hall, G.B., Peirson, L., & Walsh-Bowers, R. (1995). Psychiatric consumer/survivors' quality of life: Quantitative and qualitative perspectives. Journal of Community Psychology, 23, 216-33. Niles, E., & Ross, K. (1992). Putting policy into practice: Mental health in New Brunswick. Canada's Mental Health, 40(1), 15-19. Nugent, J., & Spindel, P. (1998). The trouble with PACT: Questioning the increasing use of assertive community treatment teams in community mental health. Unpublished paper, Humber College, Toronto. O'Brien, J., & O'Brien, C.L. (1996). Members of each other: Building community in company with people with developmental disabilities. Toronto: Inclusion Press. Ochocka, J., & Lord, J. (1998). Support Clusters: A social network approach for people with complex needs. Journal of Leisurability, 25(4), 14-22. Ochocka, J., Roth, D., & Lord,J. (1994). Workplaces that work: Successful employment for people with disabilities. Journal on Developmental Disabilities, 3(1), 29-51. Oliver, M. (1996). Understanding disability: From theory to practice. New York: St Martin's Press. Ontario Ministry of Health. (1979). Agenda for action. Toronto: Author. - Provincial Mental Health Committee. (1988). Building community support for people: A plan for mental health in Ontario. Toronto: Author. Ontario Ministry of Health. (1991a). The community mental health legislation sub-committee report. Toronto: Author. - (1991b). The road to reform: Final report of the implementation strategy sub-committee for the provincial community mental health committee. Toronto: Author. - (1993). Putting people first: The reform of mental health services in Ontario. Toronto: Author. - (1994a). Implementation guidelines for mental health reform. Toronto: Author. - (1994b). Implementation vision: Mental health reform, Toronto: Author. - (1994c). Mental health reform implementation guidelines for housing and support services. Toronto: Author. Ontario Ministry of Housing. (1992). Consultation counts: Taking action on a housingframework for Ontario. Toronto: Author. - (1993). People-centered access: Design and implementation options. Toronto: Author.

278

References

Ornish, D. (1997). Love and survival: The scientific basis for the healing power of intimacy. New York: Harper Collins. Page, S., & Day, D. (1990). Acceptance of the 'mentally ill' in Canadian society: Reality and illusion. Canadian Journal ofCommunity Mental Health, 9(1), 51-61. Pandiani, J.A., Edgar, E.R., & Pierce, J.E. (1994). A longitudinal study of the impact of changing public policy on community mental health client residential patterns and staff attitudes. Journal of Mental Health Administration, 21(1), 71-9. Pandiani, J.A., Murtaugh, M., & Pierce, J.E. (1996). The mental health care reform debate: A content analysis of position papers. Journal of Mental Health Administration, 23(2), 217-25. Pape, B. (1988). Consumer participation: From concept to reality. Toronto: Canadian Mental Health Association / National Office. Park, P. (1993). What is participatory research? A theoretical and methodological perspective. In P. Park, M. Brydon-Miller, B. Hall, & T.Jackson (Eds.), Voices of change: Participatory research in the United States and Canada (pp. 1-19). Westport, CT: Bergen and Garvey. - Brydon-Miller, M., Hall, B., & Jackson, T. (Eds.). (1993). Voices of change: Participatory research in the United States and Canada. Westport, CT: Bergen and Garvey. Parkinson, S. (1999). An examination of the creation and impact of a supported housing program for psychiatric consumer/survivors. Unpublished MA thesis, Wilfrid Laurier University. - Nelson, G., & Horgan, S. (1999). From housing to homes: A review of the literature on housing approaches for psychiatric consumer/survivors. Canadian Journal ofCommunity Mental Health, 18(1), 145-64. Parsons, R.J. (1997). Assessing helping processes and client outcomes in empowerment based practice: Amplifying client voice and satisfyingfunders. Paper presented to Empowerment Practice in Social Work Conference, University of Toronto, Sept. Patton, M.Q. (1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage. Pedlar, A., Haworth, L., Hutchison, P., Taylor, A., & Dunn, P. (1999). A textured life: Empowerment and adults with developmental disabilities. Waterloo, ON: Wilfrid Laurier University Press. Perrin, B. (1991). Discussion paper on supportive housing. Toronto: Burt Perrin Associates. Petras, K., & Petras, R. (Ed.). (1995). The whole world book of quotations. Reading, MA.: Addison-Wesley.

References

279

Pranger, T. (1999). Mental health consumer involvement in service level decisionmaking: Rhetoric and reality. Unpublished doctoral dissertation, University of Toronto. Prilleltensky, I. (1994). Empowerment in mainstream psychology: Legitimacy, obstacles, and possibilities. Canadian Psychology, 35, 358-74. - (1997). Values, assumptions, and practices: Assessing the moral implications of psychological discourse and action. American Psychologist, 47, 517-35. - & Nelson, G. (1997). Community psychology: Reclaiming social justice. In D. Fox & I. Prilleltensky (Eds.), Critical psychology: An introduction (pp. 166-84). London: Sage. Pulice, R.T., McCormick, L.L., & Dewees, M. (1995). A qualitative approach to assessing the effects of system change on consumers, families, and providers. Psychiatric Services, 46, 575—9. Putnam, R.D. (1993). The prosperous community: Social capital and public life. American Prospect, (Spring), 35-42. Pyke, J., & Lowe, J. (1996). Supporting people, not structures: Changes in the provision of housing support. Psychiatric Rehabilitation Journal, 19(3), 5-12. Racino,J.A. (1991). Organizations in community living: Supporting people with disabilities. Journal of Mental Health Administration, 18, 51-9. Rappaport,J. (1977). Community psychology: Values, research, and action. New York: Holt, Rinehart, and Winston. - (1981). In praise of paradox: A social policy of empowerment over prevention. American Journal of Community Psychology, 9, 1-25. - (1987). Terms of empowerment / exemplars of prevention: Toward a theory for community psychology. American Journal of Community Psychology, 15, 121-44. - (1990). Research methods and the empowerment social agenda. In P. Tolan, C. Keys, E Chertok, & L.Jason (Eds.), Researching community psychology: Issues of theory and methods (pp. 51-63). Washington, DC: American Psychological Association. - (1993). Narrative studies: Personal stories and identity transformation in the mutual help con text. Journal of Applied Behavioral Science, 29, 239-56. - (1995). Empowerment meets narrative: Listening to stories and creating settings. American Journal of Community Psychology, 23, 795-807. - (1974). & Chinsky, J. Models for delivery of service from a historical and conceptual perspective. Professional Psychology, 5, 42-50. Reinharz, S. (1984). Alternative settings and social change. In K. Heller, R.H. Price, S. Reinharz, S. Riger, & A. Wandersman. Psychology and community change: Challenges of the future (2nd ed., pp. 286-336). Homewood, IL: Dorsey Press.

280

References

- (1992). Feminist methods in social research. Oxford: Oxford University Press. Riger, S. (1984). Vehicles for empowerment: The case of feminist movement organizations. Prevention in Human Services, 3(2/3), 99-117. - (1993). What's wrong with empowerment. American Journal of Community Psychology, 9, 1-25. Ristock, J., & Pennell, J.T. (1996). Research as empowerment:Feminist links, postmodern interruptions. Oxford: Oxford University Press. Rochefort, D.A. (1988). Policymaking cycles in mental health: Critical examination of a conceptual model. Journal of Health Politics, Policy, and Law, 13, 129-52. - (1992). More lessons, of a different kind: Canadian mental health policy in comparative perspective. Hospital and Community Psychiatry, 43, 1083-90. Roeher Institute. (1994). Violence and peopk with disabilities: A review of the literature. Ottawa: National Clearinghouse on Family Violence. Rosenblatt, A., & Attkisson, C.C. (1993). Assessing outcomes for sufferers of severe mental disorder: A conceptual framework and review. Evaluation and Program Planning, 16, 347-63. Rosenhan, D.L. (1973). On being sane in insane places. Science, 179, 250-8. Rothman, D. (1980). Conscience and convenience. Boston: Little, Brown. Rothschild-Whitt, J. (1976). Conditions facilitating participatory-democratic organization. Sociological Inquiry, 46(2), 75-86. Saleebey, D. (Ed). (1992). The strengths perspective in social work practice. New York: Longman. Salem, D.A., Seidman, E., & Rappaport, J. (1988). Community treatment of the mentally ill: The promise of mutual help organizations. Social Work, 33, 403-8. Salzer, M.S. (1997). Consumer empowerment in mental health organizations: Concept, benefits, and impediments. Administration and Policy in Mental Health, 24, 425-34. Santos, A.B. (Ed.). (1997). Assertive Community Treatment. (Special issue). Administration and Policy in Mental Health, 25(2). Sarason, S.B. (1972). The creation of settings and the future societies. San Francisco: Jossey-Bass. - (1982). The culture of the school and the problem of change (2nd ed.). Boston: Allyn and Bacon. - (1988). The psychological sense of community: Prospects for a community psychology (rev. ed.). Cambridge, Mass.: Brookline. Sarri, R., & Sarri, C. (1992). Organizational and community Change through participatory action research. Administration and Social Work, 16 (3-4), 99-122.

References

281

Schlesinger, M., Dorwart, R., & Epstein, S. (1996). Managed care constraints on psychiatrist's hospital practices: Bargaining power and professional autonomy. American Journal of Psychiatry, 153, 256-60. Schmuck, R.A., & Miles, M.B. (Eds.). (1971). Organization development in schools. Palo Alto, CA: National Press Books. Schwartz, D. (1997). Who cares: Rediscovering community. Boulder, Colo.: Westview Press. Seidman, E., & Rappaport,J. (Eds.). (1986). Redefining social problems. New York: Plenum Press. Segal, S.P., & Aviram, U. (1978). The mentally ill in community-based sheltered care: A study of community care and social integration. New York: Wiley. Segal, S.P., Silverman, C., & Temkin, T. (1995a). Characteristics and service use of long-term members of self-help agencies for mental health clients. Psychiatric Services, 46, 269-74. - (1995b). Measuring empowerment in client-run self-help agencies. Community Mental Health Journal, 31, 215-27. Senge, P. (1990). The fifth discipline: The art and the practice of the learning organization. New York: Doubleday. Shera, W., & Page,J. (1995). Creating more effective human service organizations through strategies of empowerment. Administration in Social Work, 19(4), 1-15. Simmons, H.G. (1990a). Mental-health policy in Ontario compared to policy for persons with developmental handicaps. Canadian Journal of Community Mental Health, 9(2), 163-76. - (1990b). Unbalanced: Mental health policy in Ontario, 1930-1989. Toronto: Wall and Thompson. Smith, D.E. (1990). The conceptual practices of poiuer: A feminist sociology of knowledge. Toronto: University of Toronto Press. Smith, R.W. (1995). Servant leadership: A pathway to the emerging territory. In L. Spears (Ed.), Reflections on leadership (pp. 198-213). New York: Wiley. Solomon, P. (1992). The efficacy of case management services for severely mentally disabled clients. Community Mental Health Journal, 28, 163-80. Spector, M., & Kitsuse,J.I. (1987). Constructing social problems. New York: Aldine de Grutyer. Stan ton, A.H., & Schwartz, M.S. (1954). The mental hospital. New York: Basic Books. Starhawk (1987). Truth or dare: Encounters with power, authority and mystery. San Francisco: Harper. Stein, L.I., & Ganser, L.J. (1983). Wisconsin's system for funding mental health services. In J.A. Talbott (Ed.), Unified mental health systems: Utopia unrealized.

282

References

New Directions for Mental Health Services (no. 18, pp. 25-37). San Francisco: Jossey-Bass. Stein, L.I., & Test, M.A. (1980). Alternative to mental hospital treatment: I. Conceptual model, treatment program, and clinical evaluation. Archives of General Psychiatry, 37, 392-7. - (Eds.). (1985). The Training in Community Living model: A decade of experience New Directions for Mental Health Services (no. 26). San Francisco: Jossey-Bass. Stringer, E.T. (1996). Action research: A handbook for practitioners. Thousand Oaks, CA: Sage. Supportive Housing Coalition. (1981). Community housing for consumers of mental health services in Metropolitan Toronto. Toronto: Author. Surrey, J.L. (1991). Relationship and empowerment. In J.V. Jordon, A.G. Kaplan, J.P. Miller, I.P. Stiver, &J.L. Surrey (Eds.), Women's growth in connection: Writings from the Stone Center (pp. 162-80). New York: Guilford Press. Szasz, T. (1961). The myth of mental illness. New York: Delta. Taube, C.A., Morlock, L., Burns, B.J., & Santos, A.B. (1990). New directions in research on assertive community treatment. Hospital and Community Psychiatry, 41, 642-51. Tefft, B. (1987). Advocacy coalitions as a vehicle for mental health system reform: A case study. In E.M. Bennett (Ed.), Social intervention: Theory and practice (pp. 155-85). Lewiston, NY: Edwin Mellen Press. Torrey, E.F., Erdman, K,, Wolfe, S.M., & Flynn, L.M. (1990). Care of the seriously mentally ill: A rating of state programs (3rd. ed.). Washington, DC: Public Citizen Health Research Group and National Alliance for the Mentally 111. Toulmin, S., & Gustavsen, B. (Eds.). (1996). Beyond theory: Changing organizations through participation. Amsterdam: Benjamins Publishing. Townsend, E. (1999). Good intentions overruled: A critique of empowerment in the routine organization of mental health services. Toronto: University of Toronto Press. Trainor,J., & Church, K. (1984). A framework for support for people with severe mental disabilities. Toronto: Canadian Mental Health Association / National Office. Trainor,J., Lurie, S., Ballantyne, R., & Long, D. (1987). The supportive housing coalition: A model for advocacy and program development. Canadian Journal of Community Mental Health, 6(2), 93-106. Trainor, J.N., Morrell-Bellai, T.L., Ballantyne, R., & Boydell, K.M. (1993). Housing for people with mental illness: A comparison of models and an examination of the growth of alternative housing in Canada. Canadian Journal of Psychiatry, 38, 494-501. Trainor, J., Pomeroy, E., & Pape, B. (Eds.). (1999). Building a framework for support: A community development approach to mental health policy. Toronto: Canadian Mental Health Association / National Office.

References

283

TrainorJ., Shepherd, M., Boydell, K.M., Leff, A., & Crawford, E. (1997). Beyond the service paradigm: The impact and implications of consumer/survivor initiatives. Psychiatric Rehabilitation Journal, 21, 132-40. Trainor, J., & Tremblay, J. (1992). Consumer/survivor businesses in Ontario: Challenging the rehabilitation model. Canadian Journal of Community Mental Health, 11(2), 65-71. Vandergang, A. (1996). Consumer/survivor participation in the operation of community mental health agencies and programs in Metro Toronto: Input or impact? Canadian Journal of Community Mental Health, 15(2.), 153-70. Wadsworth, Y, & Epstein, M. (1998). Building in dialogue between consumers and staff in acute mental health services. Systemic Practice and Action Research, 11, 353-79. Wartenberg, T. (1990). The forms of power: From domination to transformation. Philadelphia: Temple University Press. Wasylenki, D., Goering, P., & MacNaughton, E. (1992). Planning mental health services: I. Background and key issues. Canadian Journal of Psychiatry, 37, 199-206. Waterloo Region District Health Council (1986). Mental health needs assessment study. Kitchener-Waterloo: Author. - (1990). The background paper: Issues affecting mental health service planning in Waterloo Region. Waterloo: Author. - (1991). A mental health perspective for Waterloo Region to 1995. Waterloo: Author. - (1995). Mental health issues and concerns. Waterloo: Author. - (1996a). Mental health needs review. Waterloo: Author. - (1996b). The Waterloo Region mental health system: A systems approach to providing services and supports for people with serious mental illness in Waterloo Region. Waterloo: Author. Watts, R. (1992). Elements of a psychology of human diversity. Journal of Community Psychology, 20, 116-31. Watzlawick, P., Weakland, J., & Fisch, R. (1974). Change: Principles of problem formation and problem resolution. New York: W.W. Norton. Weatley, M. (1992). Leadership and the new science. San Francisco: Brett-Koehler. Weick, K. (1984). Small wins: Redefining the scale of social issues. American Psychologist, 39, 40-9. Weisberg, S. (1994). Housing policy for persons with mental illness in Ontario. Administration and Policy in Mental Health, 21, 227-38. Weitz, D. (1984). 'On Our Own': A self-help model. In D.P. Lumsden (Ed.), Community mental health action: Primary prevention programming in Canada (pp. 312-20). Ottawa: Canadian Public Health Association. Whiteford, H., MacLeod, B., & Leitch, E. (1993). The national mental health

284

References

policy: Implications for public psychiatric services in Australia. Australian and New Zealand Journal of Psychiatry, 27, 186-91. Whyte, J.M. (1996). Past the velvet ropes. Canadian Journal ofCommunity Mental Health, 15(2), 21-2. Wickizer, T., Lessler, D., & Travis, K. (1996). Controlling inpatient psychiatric utilization through managed care. American Journal of Psychiatry, 153, 339-45. Wilson, S.F. (1989). Implementation of the community support system concept statewide: The Vermont experience. Psychosodal Rehabilitation Journal, 12(3), 27-40. Wilson, S. (1996). Consumer empowerment in the mental health field. Canadian Journal of Community Mental Health, .75(2), 69-85. Wolf, J. (1990). A chronicle of change: A case study of the Connecticut mental health system. Administration and Policy in Mental Health, 17, 151-64. Yeich, S., & Levine, R. (1992). Participatory research's contribution to a conceptualization of empowerment. Journal of Applied Social Psychology, 22,1894-1908. Young, S.L., & Ensing, D.S. (1999), Exploring recovery from the perspective of people with psychiatric disabilities. Psychiatric Rehabilitation Journal, 22, 219-31. Zimmerman, B. (1996). The art and science of managing changeability: Lessons from chaos and complexity theories. Keynote presentation given at the Order and Chaos conference, Grenfell College, Memorial University, Newfoundland, May. — & Armstrong, R. (1994). Remembering the future: Creating changeability at Linda

Lundstrom Ltd. North York, ON: York University, Faculty of Administrative Studies. Zimmerman, M.A. (1995). Psychological empowerment: Issues and illustrations. American Journal ofCommunity Psychology, 23, 581-600. - & Rappaport,J. (1988). Citizen participation, perceived control, and psychological empowerment. American Journal of Community Psychology, 16, 725-50.

Index

access to valued resources, 20, 27-8, 144; changes in, 196-204, 198t; facilitation and inhibition of, 204-9; influence of political context, 224, 232-3; medical issues, 207; public policy, 228. See also social justice ACT. See assertive community treatment (ACT) acute hospital approach, 13 ADA. .See Americans with Disabilities Act (ADA) adult education, cuts to, 89 advocacy, 23, 205; of Mary Henman, 7l;roleofWRSH, 136 Agenda for Action report (Ontario Council of Health), 71 Alex (CMHA),46 alternative businesses. See businesses alternative paradigm, 20, 229. See also Waterloo Region Self Help (WRSH) alternative settings, 128-9; collectivist structure of, 32-3 American Orthopsychiatric Association conference, 53-4, 263

Americans with Disabilities Act (ADA), 84 Anthony, W.A., 34, 35, 247-8 Argyris, C., 30 Armitage, Larry, 19-20, 25 assertive community treatment (ACT), 64-5, 91-3, 228 Aviram, U., 143 The Background Paper: Issues Affecting Mental Health Planning in Waterloo Region (DHC), 85 Bargal, D., 116 Bast, Jeff, 117 Berry, Wendell, 223 Bickenbach, J.E., 252 Blanchet-Cohen, N., 65 Bond, M.A., 103-4, 145 boundary spanners, 145 British Columbia, mental health reform in, 65 buffers, against vulnerability, 223 Building Community Support for People: A Plan for Mental Health in Ontario (Ontario Ministry of Health 1988), 77

286 Burstow, B., 11-12 businesses: of consumer/survivors, 23, 28, 80, 134; the Mad Market, 72 'calling 911' metaphor, 29 Callwood, June, 76 Cambridge Active Self-Help, 86 Cameron, Ewen, 259 Cameron House, 181 Canada Pension Plan, 205 Canadian Mental Health Association (CMHA): Access Centre, 133, 167; external integration, 143; Framework far Support, 7, 23, 25, 28, 66, 74, 78, 80, 208-9; individualized service approach, 132-3; Jean's story, 152-5; management style, 130-1; National Office, 23, 25, 48; New Brunswick Division, 66; Ontario Division, 48; organizational change, 139-45; value base shift, 128; Waterloo Regional Branch,7-9, 37,70,102, 105-11 Capponi, Pat, 15, 76-7, 170; Upstairs in the Crazy House, 76 Carling, Paul J., 15, 62, 82, 109, 112, 140 CarverJ., 108 Center for Community Change through Housing and Support (US), 25, 62, 109 Centre for Research and Education in Human Services, 7, 8, 51, 84, 109; community role, 39; coordinating role, 229-30; strategic planning, 113; Anne Tschirhart's address, 259-61 Centre for Research and Education NewsReport, 261

Index Chamberlin.Judi, 15, 26, 32, 72, 116, 127, 172, 231 change process: change agents, 122, 124; community-at-large, 174-5, 178-9; community mental health organizations, 123t; in community participation, 185-93; policy and planning, 113-14; social change window, 239. See also organizational change children, decrease in support for, 193 child welfare, 253 Chu, E, 28 Church, Kathryn, 23, 35 claims-makers: and homelessness, 228; and housing conditions, 75; new groups, 73 Cohen, D., 17-18, 22 Cohen, M.R., 35 coherency: during times of change, 97; in policy and planning, 98 Community Aftercare Program, 106 community mental health. See mental health community support and integration, 7, 20, 25-6, 44, 83-4, 87, 173-94; changes in, I75t; and empowerment-community integration paradigm, 193-4; individual support, 185-7; role of, 175-8 community treatment-rehabilitation approach, 13-16, 25, 73, 106 conflict: dealing with, 234; implementation process at CMHA, 110, 115-16; within WRSH, 119-21, 234 Connecticut, mental health reform in, 63 Constantino, V., 245 Consumer/Survivor Development Initiative (CSDI), 80, 117, 240; and

Index community integration, 83; and finances, 119 consumer/survivors, 11, 86; change agents, 22, 187-8; and community treatment-rehabilitation approach, 15-16; crisis plans, 160; decisionmaking power, 104; diversity of, 247; and family members, 21, 119-21, 234; fears of, 169-70, 207-8; financial constraints, 181; organizations for, 23, 26; in Parkdale, 75; participation of, 85-6, 129-30; personal issues, 34-5, 192; policy and planning, 85; powerlessness of, 159; quality of life, 208-9, 212; research project role, 42-3, 56; sites of resistance, 23, 183; success of, 204-5; traditional paradigm and, 88; US studies, 34 control: by stakeholders, 159-61; and elite groups, 93; and medical treatment, 171; and power, 17; social, 17 Cornell, Sylvia, 264-5 Covey, Stephen, 162 CSDI. See Consumer/Survivor Development Initiative (CSDI) cutbacks: funding, 191; government, 206-7; by Tory government (Ontario), 192; to valued resources, 89; welfare, 206-7 Czarny, Wendy, 38, 111 Dain, N., 17 Dave (WRSH),46 D'Costa, Barry, 264, 265-6 deinstitutionalization, 7, 69, 73; and consumer/survivors, 12-13; and mental health issues, 5; and Welcome Home, 93-4

287 Depressive and Manic-Depressive Association, 86 DHCs. See Waterloo Region, District Health Councils (DHCs) Dick, Terry, 117 disabilities, 26,193; attitudes towards, 188-9; and the community, 35; and equality, 252; 'nothing about me, without me,' 37, 56; pensions, 206; and unemployment, 4 Discovery Personal Planning, 176, 178 disculturation, 12 Discussion Paper on Supportive Housing (Ministry of Housing and Ministry of Community and Social Services), 81 diversity, as a neglected value, 246-7 Dix, Dorothea, 11 Dunst, C.J., 22 Dylan, Bob, 94, 232 Earls, Mary, 74 ecological approach. See multilevel ecological perspective Edelman, M., 232 Edgar, E.R., 62 edifice complex, 28-9 education: changes in, 197-8; cuts to, 89; and employment integration, 84, 87; role of WRSH, 136 elite groups, control of policy and planning, 93 Emerick, R.E., 23 employment: changes in, 198-9; and education integration, 84; train and place model, 14 empowerment, 7; and community, 34, 212-13; discourse, 155-6; employee, 126; and enablement

288 approach, 22; multilevel construct of, 21, 33-5; outcomes, 156-64; process, 152-5; and recovery, 34, 152,164; as 'self in community,' 21, 151, 169, 172, 211, 212, 213; and voice, 210. See also personal empowerment empowerment-community integration paradigm: access to valued resources, 208-9; ambiguity and reluctance in, 97; changes towards values of, 142-4, 218t; and CMHC, 112; in community mental health, 19-36; diversity as neglected value, 246-7; and holistic health care, 247-51; housing literature, 159; mental health organizations, 213; outcome indicators, 20-1, 34; and personal empowerment, 172; power and oppression, 230-5; project implementation, 48-56; shift towards, 219-40; social justice, 208-9; and traditional paradigm, 35-6; treatment and community support, 213, 248-9, 249 Fig. 12.1; values, 20-8, 38, 47, 78, 97, 222-3, 239, 243-5 Table 12.1; Waterloo Region, 93-4. See also traditional paradigm Ensing, D.S., 152 Epstein, M, 43 equality, and disability policy, 252 Everett, Barbara, 210 external integration, 143 families, as stakeholder group, 72 Family Benefit Allowance (FBA), 192, 199-200 Family and Friends, 74, 86, 185 family self-help organizations, 80, 86

Index Farkas, M.D., 35 feminist movement, 22, 27, 35 Fisch, R., 29 Foster-Fishman, P.G., 126 Foucault, Michel, 17, 234; Madness and Civilization, 17 Fountain House, 14, 106 Framework for Support (CMHA), 7, 23, 25, 28, 74, 78, 80, 208-9 New Brunswick project, 66 Freison, Eric, 6 Friends of Schizophrenics, 72, 86 funding: Consumer/Survivor Development Initiative (CSDI), 80; and organizational change, 141. See also cutbacks Goffman, Erving, 12, 69 Graham Report, 8, 77-8, 83, 85, 87, 232 Graham, Robert, 77 Grossman, Larry, 73 group homes, Waterloo Regional Homes, 111 Cuba, E.G., 40 Harris, G.T., 12 Health Services Restructuring Commission (HSRC),89 Henman, Bill, 71 Henman, Mary, 70-1 Henman, Ted, 70-1 Heseltine, G.F., 71-2 Heseltine Report, 71-2 Hildreth, Jane, 261-4 Hilton, N.Z., 12 Hogan, M.F., 15 holistic health care: as emerging value, 241-6; and empowermentcommunity integration paradigm,

Index 247-51; ideal indicators, 245; service delivery, 135 homelessness, 4; in Toronto, 228 hooks, bell, 22 hospital restructuring, 13, 89-90 housing, 44; changes in, 200-1; coalitions, 81; cooperatives, 28; and delinked support, 81, 84, 112, 133; government withdrawal from, 206; policy changes, 80-2; programs, 14-15; and psychiatric consumer/ survivors, 104; supported, 62, 80-2, 161; in Toronto, 73, 75; Waterloo Region, 87. See also social housing Human Resources Development Canada (HRDC), 7 Hutchison, P., 33-4, 152 income: changes in, 199-200; limited, 170-1, 206 individual change, 38; personal empowerment theory, 33-5, 36 individuals: changes in the lives of, 209-13; community support and integration for, 185-7; outcome indicators, 33; safeguarding the identity of, 54-5 institutionalization, community alternatives to, 14-15 institutional-medical approach, 10-13, 70 Inter-Church Chaplaincy Project, 5, 184, 251 internal integration, 143 In Unison: A Canadian Approach to Disability Issues - A Vision Paper, 252 Janeway, Elizabeth, 21, 35, 210, 223; Powers of the Weak, 159

289 Janice's story, 156-9, 161-2 Jan's story, 195, 201-3 Janzen, Rich, 47, 53 Jean's story, 152-5 Jonathan's story, 173, 180-3, 211 Jones, John, 38-9, 106 Jones, Lisa, 13-15 Kansas, mental health reform in, 67 Keys, C.B., 103-4, 126, 145 Kiesler, Charles, 13 Kingwell, Mark, 252 Kitchener Public Library, forum, 241-6 Kitchener-Waterloo, community context, 4-5, 174 Kitchener-Waterloo Hospital, 70 Kitchener-Waterloo Housing Coalition, 205 Kuhn, Thomas, The Structure of Scientific Revolutions, 10

labour unions, resistance to change, 83, 240 leadership: at CMHA, 107, 108; in learning organizations, 103; WRSH, 131-2 learning organization theory, 31-3, 101-3, 121 Lehman, A.F., 63, 227 Levine, A., 96 Levine, M., 96 Lewin, Kurt, 32 Liberal government (New Brunswick), mental health policy, 66 Liberal government (Ontario), 77, 79, 96; social issues, 229 Lincoln, Y.S., 40 Lomas, J., 96 London Psychiatric Hospital (LPH),

290 6,12, 70; assertive community treatment (ACT), 91 Lord, John, 7-8, 33-4, 47-8, 53,118, 140, 152, 169; Centre for Research and Education in Human Services, 74, 84,113; as change agent, 124; reflections, 258-9; Welcome Home project, 94 Lowe.J., 104, 133 LPH. See London Psychiatric Hospital (LPH) Lucksted, A., 152 MacAulay,Jack, 117 McCubbin, M., 17-18, 22 McKnight, John, 25-6 Macnaughton, E., 65 Mad Market, 72 Madness and Civilization (Foucault), 17 managed care systems: as cost driven, 17, 29, 67; impact of, 64; in US, 67 Manitoba, mental health reform in, 65 Maryland, mental health reform in, 63 Massachusetts, mental health reform in, 63-4 Maton, ILL, 127 medical-institutional sector: mental health policy, 68; resistance to change, 240; shift to treatmentrehabilitation approach, 29; traditional paradigm of, 97 medical model: ACT, 228; mental health, 72 Mennonite community, 4, 5, 220 mental health: changing paradigms in, 24t, 28-9; and consumer/survivor movement, 23; paradigm shift

Index in, 217-19, 218t; reform, 59-67; as social system, 30; traditional paradigm in, 3-18. See also mental health organizations; policy and planning Mental Health Coordination Group, 92 Mental Health Issues and Concerns (DHC),90 Mental Health Needs Assessment Study (DHC),85,87 Mental Health Needs Review (DHC), 90-1 mental health organizations: limitations of, 208; partial paradigm shift, 142; and personal empowerment, 165-6; as safe organizations, 213; support from, 204 A Mental Health Perspective for Waterloo Region to 1995,85,87 Mental Health Reform Steering Committee, 82 Mood Disorders Association of Ontario, 48, 72 More for the Mind (Tyhurst Report), 68 MPA. See Vancouver Mental Patients' Association (MPA) multilevel ecological perspective, 30, 57-8, 225-30; research process, 229-30; substantive changes, 226-9; substantive and process lessons, 226t multilevel theory of change, 220 Multi-Year Mental Health Plan (DHC), 90 mutual aid. See self-help and mutual aid organizations national/provincial advisory committee, 48

291

Index natural supports, 178-9, 186, 189-90 Nelson, Geoffrey, 8-9, 30, 46, 47-8, 51, 53, 106, 245; conflict at WRSH, 120; housing coalition, 84; MA program at WLU, 74; reflections, 255-6 New Brunswick: Mental Health Commission, 66; mental health reform, 65,66 New Democratic party (NDP) government (Ontario), 77, 79, 96, 224; Family Benefit Allowance (FBA), 192; social issues, 229 new paradigm: theories of change, 222; values, 227 Niles, E., 66 Ochocka, Joanna, 8, 39, 47-8, 53, 140; Centre for Research and Education in Human Services, 84, 113; as change agent, 124; reflections, 256-8 Oliver, M., 211 On Our Own (Toronto), 72 On Our Own (Vancouver), 32 Ontario: changes in socio-political context, 72-3; mental health policy in, 68-75; reform in, 59; resource allocation, 82-3; social policy, 31 Ontario Council of Health, Agenda for Action report, 71 Ontario Federation of Community Mental Health and Addictions Programs, 48, 72, 77, 82, 112 Ontario Ministry of Health, 48; Adult Community Mental Health Branch, 69, 106; Building Community Support for People: A Plan for Mental Health in Ontario (1988), 77-8; Consumer/Survivor Devel-

opment Initiative, 48; district health councils (DHCs), 4, 70; funding from, 44; guidelines for mental health planning, 79; Putting People First (1993), 78, 80, 82, 91, 97 oppression and empowerment, substantive changes, 30, 230-3, 23It organizational change, 31-3, 36, 38, 101-5; change process, 121-4; conflict and resistance in, 115-16, 119-21; facilitation and inhibition of, 138-42; factors that influence, 144-5; human service organizations, 103-4; outcomes, 126-38, 145, 146-7t; participatory decisionmaking, 32, 103; research information gathering, 49; Waterloo Regional Homes, 111-16 Orthopsychiatric Association. See American Orthopsychiatric Association outcome indicators, 20-1 hospitalization and symptomatology, 33; individual, 33

Pandiani, J.A., 62 paradigm shift, 10, 29; partial, 142, 239 paradigms, thinking about, 9-10 Parkdale (Toronto): housing, 81; as psychiatric ghetto, 73, 75 Parkinson, S., 172, 231 Parsons, R.J., 164 participation: in change process, 185-93; in community-at-large, 178-9; facilitation and inhibition of, 185-93; in human services community, 179-80 participatory action research, 42-4, 56, 229, 233, 238

292 partnerships, 26-7; and relationships, 235-9, 236t; and substantive changes, 236-7 peer support, 23,117,183 personal empowerment: changes in, 160t; and community integration, 211; facilitation and inhibition of, 165-72; as goal for consumer/survivors, 230; indicators of, 159-64; outcomes, 164; skills development, 163; theory, 33-5, 151-2. See also empowerment Phoenix Rising magazine, 72 Pierce, J.E., 62 planning. See policy and planning policy and planning: in Canada, 65-6; of change process, 113—14; changes, 57-8, 77-84, 94-6, 95t; coherency in, 98; consumer/survivors participation, 85; elite groups control of, 93; person-centred, 134-5; research information gathering, 49; and resource mobilization theory, 67; in US, 60-5 poverty: of consumer/survivors, 15; limitations of, 170-1, 201-3 power: consumer/survivors and professional providers, 15, 22; and control, 17; imbalance of in mental hospitals, 11; and oppression, 230-5; and partnerships, 56 power contract, 223; individual and K-W community organizations, 210; and partnerships, 235; psychiatric consumer/survivors, 210 Powers of the Weak (Janeway), 21,159 Pranger,T., 104, 117 professional providers, resistance to change, 83 Progressive Conservative (Tory) gov-

Index ernment (Ontario): 1980s waning support for, 73; 'blaming the victim' ideology, 224; business agenda of, 89; and 'Common Sense Revolution,' 88-9; funding cutbacks, 192; housing freeze, 228; in power 1995, 77, 88-94 psychiatric consumer/survivors, 11-12, 19, 28, 31; housing policies, 80-2; movement, 79; On Our Own, 72; Parkdale (Toronto) as ghetto for, 73; power contracts, 210 'A Psychiatric Rehabilitation Treatment Program: Can I Recognize One if I See One?' (Anthony, Cohen, and Farkas), 35 public good, 252 Putting People First (Ontario Ministry of Health, 1993), 78,80,82,91,96,97 Pyke.J., 104, 133 qualitative research project. See research project Racino,J.A., 126 Rappaport,J., 21, 29, 166, 233 recovery: and empowerment, 34; process, 162 Reeve, Paul, 264 Reflections on Leadership (Smith), 102 research assistants, 53; reflections of, 264-6 researchers: and the organizations, 45; role of, 233-4; their stories, 7-9; training, 55 research process, 225, 229-30,233-5, 237-9; Geoff s reflections, 255-6; Joanna's reflections, 256-8; John's reflections, 258-9; steering committee reflections, 259-64

Index research project: assumptions, 43; data gathering and analysing, 54-6; design, 43; information gathered, 49-56, 50t; methodology, 40-4, 48-9, 51; objectives, 39-40, 49, 52, 54; participants, 38; planning the study, 37-44; qualitative methods, 44, 235; sampling methods, 52 research team, 47-8; development, 53 resource mobilization theory: New Brunswick, 66; new claimsmakers, 73; social policy and regional planning change, 30-1; Vermont, 62; 'window of opportunity,' 96 restructuring of health services, 13, 89-90 Reville, David, 80 Rice, M.E., 12 Riger, S., 213, 232 Ross, K, 66 Royal Bank, 94, 232 safety and protection, feelings of, 190-1 Salem, D.A., 127 Salzer, M.S., 127 Sarason, S.B., 28-9, 59, 68 Schwartz, David, 26, 29 Segal, S.P., 143 Seidman, E., 29 self-help: power of, 201-3; in recovery and change, 180-3 self-help and mutual aid organizations, 19, 23, 26, 44, 72, 79, 116-21, 167-9; family, 80, 86; in K-W, 220; literature review, 116-17 Senge, P., 101

293 service delivery: changes in, 134-5; holistic approach, 135; shift to individualized support, 166 Shrink Resistant (Burstow and Weitz), 11-12 Simmons, Harvey, 68-9, 81 sites of resistance, 23, 183 'small wins' theory, 6 Smith, Dorothy, 17 Smith, Richard, Reflections on Leadership, 102 social change: change agents, 59, 68; as political process, 30-1, 239 social constructivism, 40-2 Social and Economic Integration of People with Disabilities, 7 social housing, 144; freeze on, 89, 200, 228. See also housing social justice, 20, 27-8, 144, 195-213; influence of political context, 224; public policy, 228; and social policy, 209. See also access to valued resources social movement theory, 219 Social Planning Council of Metropolitan Toronto, 252 social policy: for a just society, 251-3; and regional planning change, 38; resource mobilization theory, 30-1, 36; shift in, 232; and social justice, 209 Social Sciences and Humanities Research Council (SSHRC), 7; research proposal, 38-9 socio-political context: influence of, 224, 228; Ontario, 72-3; and Tory government, 93 South African disability movement, 37 SSHRC. See Social Sciences and

294 Humanities Research Council (SSHRC) staff roles, and values, 136-8 stakeholders: changes in socio-political context 1980-4, 70-5; leadership roles, 42, 129; participation of, 20-3, 25,56,107-8,113-14,249; in participatory action research, 46-7; Welcome Home, 93-4 Starhawk, 164 steering committee, 45-7, 49, 51-6, 229; paradigm shift, 237; reflections, 259-64; of stakeholders, 42 Steve's story, 175-8 stigma: associated with mental illness, 69-70, 188, 191; reduction of, 26 strategic planning: at CMHA, 106-7; Waterloo Regional Homes, 111-16 The Structure of Scientific Revolutions (Kuhn), 10 support coordination approach, 22 Supportive Housing Coalition of Metropolitan Toronto, 73, 81 Szasz, Thomas, 11 'The Times They Are A'Changin' (Dylan), 94, 232 Toronto: consumer/survivor participation, 227; homelessness in, 228; On Our Own, 72 Torrey, E.F., 61,62 Towards a Blueprint for Change: A Mental Health Policy and Program Perspective (Heseltine), 71-2 traditional paradigm, 25; absence of consumer/survivors, 21; and institutional buildings, 28; managed care system, 17; of medical-institutional sector, 97; in mental health, 3-18, 23; Mental Health Needs Assess-

Index ment Study (DHC), 85; and policy changes, 28; re-emergence of, 88-94. See also empowermentcommunity integration paradigm Training in Community Living Program (Wisconsin), 64 Trainor, J.N., 81, 83-4 treatment and rehabilitation, 249-50 Trivette, C.M., 22 Trotter, S., 28 Tschirhart, Anne, 38, 118, 259-61 Tyhurst Report, More for the Mind, 68 United States: mental health reform in, 60-5; self-help organizations in, 23 Upstairs in the Crazy House (Capponi), 76 value base: clarification process, 121; organizational change theory, 127-8 values: of assertive community treatment (ACT), 92-3; importance of, 17-18; participation and principles, 220-2, 22It, 222-3; and staff roles, 136-8 Vancouver Mental Patients' Association (MPA), 72 Vancouver, On Our Own, 32 Vandergang, A., 79, 227 Vermont, mental health system in, 61-3,109,112 Victoria House (CMHA), 176-8 vision and values: Waterloo Regional Homes, 112; WRSH, 118-19 voice: for consumer/survivors, 78; and empowerment, 210 Wadsworth, Y, 43

Index Wartenberg, T., 164 Waterloo Region, 74-5; community mental health services in, 74; District Health Councils (DHCs), 12, 45, 70, 85-6; mental health services prior to 1980, 70 Waterloo Regional Branch (Canadian Mental Health Association). See Canadian Mental Health Association (CMHA), Waterloo Regional Branch Waterloo Regional Homes, 8, 37, 44, 74, 84, 111-16; and ACT, 92; group homes, 111; individualized support, 143; Janice's story, 157-9; levels system, 111-12; management, 131; mission of, 222; organizational change, 139-45; service delivery, 134-6, 223; value base, 128 Waterloo Region Self Help (WRSH), 8, 37-8, 44, 51, 84, 86, 102,117-21, 128-30; and ACT teams, 92; as alternative organization, 32, 116-21, 124, 143, 167; and empowerment principles, 156; entrepreneurship program, 144; hospital visiting program, 167; Jan's story,

295 201-3; management, 131-2; organizational change, 139-47; program activities, 134; service delivery, 135-6; values, 128, 222 Watzlawick, P., 29 WeaklandJ., 29 Weitz, D., 11-12, 116 Welcome Home Initiative, 11, 93, 184, 251 welfare cutbacks, 89, 206-7 Whyte, J.M., 15, 34 Wilfrid Laurier University (WLU), 74 Wilson, Gary, 10-11 'window of opportunity,' resource mobilization theory, 96 Wisconsin, mental health reform in, 63,64 WLU. See Wilfrid Laurier University women: empowerment of, 35; and governing, 210 WRSH. See Waterloo Region Self Help (WRSH) Young, S.L., 152 Zimmerman, M.A., 33, 34, 151