Who is a consumer/survivor?  Guidelines

Many experiences shape one's self-identification as a person with a psychiatric disability.   Those who self-identify have some of these experiences and some of these values.  Matching candidates against these summary suggestions may help decide if they meet the criteria for serving as a consumer/survivor on local boards, committees, commissions, planning groups and as consultants.  In order to enhance their service by gathering input and disseminating results, those who are in designated slots also are an active part of a consumer constituency.


The Planning Group which created a model selection process for the CMHS National Advisory Council C/S Subcommittee made these suggestions about the diverse current or former experiences that define a consumer/survivor that could be represented on the subcommittee:

inpatient or outpatient commitment; seclusion; restraints; ECT; peer-support services (as a recipient or provider); child and adolescent mental health services; dual MH/MR, MH/DD, MH/SA experience; public mental health services; homelessness; private mental health services; SSI, SSDI, or VA disability benefits; physical or sexual abuse; onset after the age of 55; other trauma; physical disability; VA services; incarceration by the criminal justice system; dual role as both a consumer/survivor and a family member of a consumer/survivor (e.g., a c/s who is a parent of a child with ADHD, a c/s who is the adult child of a parent with dementia, etc.); dual role as both a consumer/survivor and a provider of consumer/survivor services; living, working, or receiving services in a rural area


Consumer/survivor values are put into action in consumer-run service programs. The Consumer-Operated Service Program Multi-site Research Initiative, funded by Substance Abuse and Mental Services Administration through the Center for Mental Health Services, found common ingredients among the programs being studied that embody consumer/survivor values.

One key ingredient was that "staff consists primarily of consumers who are hired by and operate the COSP," and that consumers decide all policies and procedures. The environment includes the element of safety from "threat of commitment, clinical diagnosis, or unwanted treatment," as well as accessibility, informal setting, and reasonable accommodation.

Essential ingredients include the peer principle, the helper’s principle, and empowerment. 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 is 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 elements are creativity and humor, choice, recovery, acceptance and respect for diversity, and spiritual growth.

Peer support is the most important activity of any consumer-operated program - telling our stories, sharing life experiences, consciousness raising, crisis prevention, and peer mentoring and teaching. "Individual participants are available to each other to lend a listening ear, with empathy and compassion based on common experience." (http://www.mhamerica.org/research.htm#Federal Study Finds Common Ingredients of Consumer-run Programs)


Paolo del Vecchio, the first CMHS Consumer Affairs Specialist, described the base of shared consumer/survivor values that remains constant: self-determination and empowerment, independence, egalitarianism, voluntariness, confidentiality, responsibility, choice, respect and dignity, peer support, hope and recovery, social action (del Vecchio, P. (1993). The world-wide movement of mental health service users, United Nations Conference on Mental Health, May 13, 1993, New York.)


The consumer/survivor movement is a human rights, self-help and advocacy movement that embraces these ideas.

 
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