Federal Study Finds Common Ingredients of Consumer-run
by Sally Clay
What is a consumer operated service program (COSP)? Does a consumer-operated service offer benefits not available from a traditional service alone? How is it different from a traditional mental health service?
For the last two years, consumer-run programs from around the country have labored over these questions with researchers and representatives from CMHS. We are putting together a multi-site study of consumer-operated programs that is the largest such study ever undertaken. This federally-sponsored program, funded by SAMHSA, holds the promise of legitimizing and supporting the services that consumer/survivors have provided over the last two decades. Actual research began this year, and will continue for about two more years.
There are seven research sites, studying consumer-run programs in eight states: Connecticut, California, Florida, Illinois, Maine, Missouri, Pennsylvania, and Tennessee. The COS programs include drop-in centers, educational programs, and peer support programs. Florida and California consumer-run drop-ins have partnered to form a joint site, called “FLiCA.” The subjects of our research are clients of traditional mental health services, some of whom will be randomly assigned to the consumer-operated programs. All of these participants will be interviewed using a common protocol developed jointly by the seven sites and the Missouri coordinating center.
An important first step in this study has been the development of a list of common ingredients to serve as a benchmark for necessary characteristics of a consumer-operated service. The Consumer Advisory Panel, along with ROW Sciences, developed a working common ingredients document, still under review and development.
The challenge in listing these ingredients was to find characteristics common to all consumer-operated programs. In our multi-site study, the three clusters of COS programs are very different from each other. The three drop-in sites offer multifaceted services in a permanent location, whereas the educational programs have a specific focus and time-limited classes. Both differ from the cluster of programs based on individual peer support or mentoring.
When the Consumer Advisory Panel first sat down to hash through these differences, we all feared that our differences would prevent agreement on commonality. Remarkably, though, this was not the case. In several hours of debate and dialogue, the consumer members of the steering committee reached consensus on most of the items now present in the draft document. In later discussions, some differences have arisen, making the development of the list a work in progress that will not be completed until all of the research is in.
The working description of common ingredients is organized under the categories of Structure, Belief Systems, and Process. Under Structure, one key ingredient was found to be that “staff consists primarily of consumers who are hired by and operate the COSP,” and that consumers decide all policies and procedures. The environment of the program is an important part of Structure, and includes the element of safety from “threat of commitment, clinical diagnosis, or unwanted treatment.” Remaining environmental ingredients are accessibility, informal setting, and reasonable accommodation
The category of Belief Systems includes the peer principle, the helper’s principle, and empowerment. The first two of these ingredients express the fundamental philosophy of consumer-operated services. The peer principle is that relationships are based upon shared experiences and values, and are characterized by reciprocity, mutuality, and mutual acceptance and respect. The helper’s principle, a corollary of the peer principle, is a concept previously introduced by other consumer-researchers. This is the principle that working for the recovery of others facilitates personal recovery. These peer relationships are integral to delivery of services to other consumers. Empowerment is a “sense of personal strength and efficacy, with self-direction and control over one’s life,” and is honored as a basis of recovery. Other important Belief Systems are creativity and humor, choice, recovery, acceptance and respect for diversity, and spiritual growth.
Process within a consumer-operated service, the third category, is always based on the peer and helper principles. It includes peer support, telling our stories, consciousness raising, crisis prevention, and peer mentoring and teaching. Peer support, of course, is the most important activity of any consumer-operated program. “Individual participants are available to each other to lend a listening ear, with empathy and compassion based on common experience.” It was agreed that personal witnessing, or telling personal stories, is “embedded in all forms of peer support.” Sharing these life experiences is a part of formal peer support groups, and it is often used in public education, thus becoming an effective means of eliminating stigma and making consumers more accepted within their community.
Many of us feel that the development of the common ingredients of a consumer-operated program may be one of the most important accomplishments of the COSP project. The list of common ingredients developed by consumers will be checked out and used as a fidelity measure by the coordinating center. If accepted as a definitive standard for consumer-operated programs, this model can contribute to the establishment of more such programs in the future. Putting these beliefs and guidelines down on paper enables us to appreciate what we are doing ourselves, and allows us to take our message and our successes to the public.
The COSP Consumer Advisory Panel is now putting together a book describing each of our consumer-operated programs to illustrate how common ingredients appear in operation. We hope to publish this book for the use of other consumer programs around the country.
The Consumer-Operated Service Program Multi-site Research Initiative is supported through cooperative agreements between the Coordinating Center at the Missouri Institute of Mental Health and the Substance Abuse and Mental Services Administration (SAMHSA) through the Center for Mental Health Services (CMHS).