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Consumer/Survivor-Operated Self-Help Programs CONSUMER/SURVIVOR-OPERATED SELF-HELP PROGRAMS: A Technical Report A Retrospective Review of the Mental Health Consumer/Survivor Movement and 13 Federally Funded Consumer/Survivor-Operated Service Programs in the 1980s U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov CONSUMER/SURVIVOR-OPERATED SELF-HELP PROGRAMS: A Technical Report A Retrospective Review of the Mental Health Consumer/Survivor Movement and 13 Federally Funded Consumer/Survivor-Operated Service Programs in the 1980s U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov ACKNOWLEDGMENTS This publication was developed for the Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS) by Laura Van Tosh and Paolo del Vecchio under contract number 92MF059138. Significant contributors at CMHS included CMHS Community Support Program Chief Neal Brown and Government Project Officer Jacqueline Parrish. In addition, Patricia Deegan, Deborah Dennis, Mike Finkle, Howard Goldman, Susan Ridgely, and Phyllis Solomon provided con- tributions. Finally, acknowledgment is granted to the individuals and con- sumer/survivor organizations that participated in the grant project. Their pio- neering efforts are a testament to consumer/survivor strength and ability. Disclaimer Access to Publication The content of this publication does not nec- This publication can be accessed electronical- essarily reflect the views or policies of the ly at: http://www.mentalhealth.org. For addi- Center for Mental Health Services (CMHS), tional copies, call: CMHS Knowledge Substance Abuse and Mental Health Services Exchange Network, 1-800-789-2647. Administration (SAMHSA), or the Department of Health and Human Services. Originating Office Office of External Liaison Note on Language Center for Mental Health Services Emerging concepts in mental health require a Substance Abuse and Mental Health vocabulary that accommodates change. The Services Administration goal of this guide is language that is flexible 5600 Fishers Lane and accessible to the general public. Room 15-99 Rockville, MD 20857 Public Domain Notice All material appearing in this report is in the Funding has been provided by the public domain and may be reproduced without Center for Mental Health Services permission from SAMHSA. Citation of the Substance Abuse and Mental Health source is appreciated: Services Administration Van Tosh, L. and del Vecchio, P. Consumer- U.S. Department of Health and Human Operatied Self-Help Programs: A Technical Services Report. U.S. Center for Mental Health February 2001 Serfvcices, Rockville, MD. 2000. DHHS Publication No. (SMA) 01-3510 TABLE OF CONTENTS Page Introduction . .v Chapter 1: The Consumer/Survivor Self-help Movement: A Literature-Based Review . .1 Chapter 2: Description of the 13 Demonstration Grant Projects . .21 Chapter 3: Cross-Site Findings and Recommendations . .73 Chapter 4: Overall Recommendations . .81 References . .85 Appendix A: Table of Findings . .91 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services iii INTRODUCTION The mental health consumer/survivor self-help movement has experienced remarkable growth over the last two decades. The impact of this movement on mental health systems nationwide has been dramatic. No longer are people who use these services seen simply as passive recipients but as active participants at all levels in planning, providing, and evaluating services. The Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS) has played a key role in supporting these important developments. Beginning in the early 1980s, the Community Support Program (CSP), which is located within CMHS/SAMHSA, initiated various technical assistance activities to promote self-help, peer sup- port, and client-directed approaches. In 1988, CSP issued a new grant program to demonstrate and evaluate services run by and for individuals with psychiatric disabilities. Fourteen projects were awarded funding for over $1.2 mil- lion, the first such projects to be supported by a Federal agency. This document is a retrospective review of the mental health consumer/survivor self-help move- ment and, specifically, the findings and recommendations from these innovative demonstration projects. Consumer/Survivor-Operated Self-help Programs, is the first comprehensive documenta- tion of the experiences of consumers/survivors in designing and operating their own self-help pro- grams. The lessons from these past efforts are invaluable in assisting us to improve mental health services today and in the future. Joseph Autry III, M.D. Bernard S. Arons, MD Acting Administrator Director Substance Abuse and Mental Health Center for Mental Health Studies Services Administration Substance Abuse and Mental Health Services Administration U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services v Chapter 1 THE CONSUMER/SURVIVOR SELF-HELP MOVEMENT: A LITERATURE-BASED REVIEW In 1987–1992, the National Institute of Mental Methodology Health’s (and later the Center for Mental This document summarizes an examination Health Services’) Community Support Program of the findings of these innovative grant proj- (CSP) launched a unique program to fund ects focusing on their accomplishments, community-based consumer/survivor demon- implementation, operation, and evaluation. stration grants. Through this effort, grants A cross-project analysis was used to deter- totaling nearly $5 million were awarded to mine similarities, differences, generalizable 14 States to implement and evaluate an array observations, and recommendations for of services to Americans with severe mental implementing, operating, and evaluating illness provided by mental health consumers/ consumer/survivor-run programs. survivors. The goals of this effort were to: This report is unique in that it is based on • Address a critical shortage in the research techniques and has been guided by number and type of self-help services persons with an understanding of consumer/ available to mental health consumers survivor self-help issues. in the community; The initial method implemented was the • Demonstrate the feasibility and effective- identification and summarization of published ness of consumer-operated programs; and unpublished literature on self-help and programs operated by and for consumers/ • Analyze, synthesize, and package find- survivors. Project staff completed a literature ings from these grants so that other con- search with key informants in the consumer/ sumers/survivors could replicate these survivor self-help movement, self-help techni- services in their local communities; cal assistance centers, national consumer/ • Generate a series of recommendations survivor organizations, self-help researchers, useful to policymakers with responsibili- CMHS documents, and other sources. In ties for funding community-based mental addition, notices were placed in national health services; and consumer/survivor newsletters requesting literature on this topic. • Foster support for sustaining existing programs and increasing the number of consumer/survivor self-help initiatives so that effective services will be available to those who need them. U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 1 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review As a result, over 80 pieces of literature • Implementation issues and barriers; were located. These materials have been • Successes and evaluation findings; and reviewed while examining such issues as: • Project recommendations. • How is “self-help” generally defined? The final activity centered on conducting What are the essential characteristics analyses across the projects to determine sim- of “self-help”? What is the history and ilarities, differences, generalizable knowledge rationale for its use? How has it been gains, and recommendations for implementing, instituted in different service fields? operating, and evaluating consumer/survivor- run programs. • What is “mental health consumer/ A comparative analysis of the qualitative survivor self-help”? What is its history findings of each project enabled a synthesis of and the rationale for its use? What are information about the projects’ similarities as its major philosophies, goals, values, well as differences in approaches and serv- and outcomes? ices, and it contrasted problems encountered • What are consumer/survivor-operated and results achieved. In so doing, a matrix self-help programs? What are the topolo- analysis was employed to complete this task. gies of services delivered? How do the Generalizable observations were extracted programs differ and how are they similar? from the information in the above domains, • How are consumer/survivor-operated and conclusions and recommendations were self-help programs organized to achieve then drawn from this analysis. their aims? How are these efforts fund- ed? How are they managed and admin- Limitations of Methodology istered? What sort of staffing patterns A number of factors affect the
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