On Our Own, Together: Peer Programs for People with Mental Illness

Chapter 1: About Us: What We Have in Common

3 1 About Us: What We Have in Common Sally Clay In the winter of 1998, mental health consumers from eight different states metinWashington,DC,tojoinresearchersandgovernmentrepresentatives to begin a four-year federal study of the workings of peer-run programs. The Consumer Operated Services Program, known as the COSP study, was a large, multi-site project to examine successful programs run entirely by mental health consumers for their peers—adults with schizophrenia, bipolar disorder, major depression, and other serious mental illnesses. We consumer/survivors who represented these programs joined with other consumers on research teams to form a Consumer Advisory Panel as part of our participation in the federal study. Our programs had been chosen because consumer/survivors controlled all of their operations and expenditures. Thus, the fundamental definition of a peer-run program is that it is operated by us and for us. In the first ever major quantitative study of self-help mental health programs, peer-run programs were examined alongside traditional mental health programs to determine whether they contribute to the effectiveness of mental health services in the community and whether they are cost effective. The study was funded by the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) from 1998 to 2002, at a cost of over $20 million. Thepurposeofthisbookistodescribetheinnerworkingsofconsumeroperated services. At its heart are eight chapters about the programs in the federal COSP study, written by the people who developed them and who live them every day. Chapters 3–10 describe eight programs in detail and from personal experience, bringing to life what has previously been presented usually from a clinical perspective and by researchers not perOnOurOwnFinalPages .indd฀฀฀3 4/16/05฀฀฀6:09:46฀PM 4 On Our Own Together: Introduction and Background sonally involved in the self-help programs. The authors of these chapters, all members of the Consumer Advisory Panel (CAP) of the COSP study, write about their own programs. They are the recipients and the providers of the mental health services researched in the study. Jean Campbell, author of Chapter 2, on the history of consumerrun programs, was head of the coordinating center for the study. She is a consumer /survivor herself, as well as a recognized researcher in the field. Chapter 11 is the only chapter written by nonconsumers. The three authors, Matthew Johnsen, Gregory Teague, and Elizabeth McDonel Herr, are all researchers who report the results of a fidelity measure designed to find out whether the programs “do what they say they do.” Chapter 12 includes updates on how the eight programs have fared since the end of the COSP study. Organizing the Programs into Clusters At first, we consumers regarded each other with some misgivings. For one thing, our programs and our perspectives were different in many ways. Some of us were active members of the mental health consumer/survivor movement that had struggled since the 1970s to reform—some might say transform—the mental health system. Other peer leaders had established their programs independent of civil rights ideology and more in partnership with existing mental health services. Despite their superficial differences , however, each of the peer programs in the COSP study fell into one of the three clusters—drop-in, peer support, and education/advocacy (see Table 1.1). Later we would examine the different catagories of common ingredients that applied to all of these clusters. The first cluster consists of drop-in centers that provide varied services , such as meals and housing assistance for members, as well as a place to meet friends and relax in a stigma-free environment. One can expect that a drop-in center will include a permanent environment, with norms and structures, but flexible choices in activities and a relaxed time frame for participation. For example, the St. Louis Empowerment Center is in the basement of a large building in downtown St. Louis. Although the center maintains rules of behavior, all rules and standards are “selfimposed and self-enforced.” Likewise, a center member is free to come at any time during its hours of operation; he or she may participate in any activity or may choose simply to chat with other members and have a cup of coffee. The second cluster includes two programs based on peer support and OnOurOwnFinalPages.indd฀฀฀4 4/16/05฀฀฀6:09:47฀PM About Us: What We Have in Common 5 Table 1...