Mental Health Programs
About CMHS
CMHS National Advisory Council
Subcommittee on Consumer/Survivor Issues
Discussion
Dr. Caras raised the issue of developing a mission statement for the subcommittee and suggested the following language: "to be a model of best practices in informing and supporting the CMHS National Advisory Council and its consumer member about consumer values and issues." She noted that the term "best practices" refers to the operation of consumer/survivor groups, rather than to medical best practices. It was noted that other terms, such as survivor, are used synonymously with consumer and suggested that they be listed in a footnote.
The issue was raised that the statement should be short and easy to remember and suggested "reform public mental health services through presentations of ideas and perspectives of consumers and survivors." Other members modified that statement to "reform mental health services through presentations of ideas and perspectives of people who use those services." The subcommittee agreed to consider possible statements at a future meeting.
Questions were raised about how the subcommittee should discharge its responsibilities in terms of fact-finding. It was suggested that visits to collect evidence and to talk with younger people is important because their experience with the mental health system is different from that of subcommittee members.
The issue of scientific "facts" that often do not capture emotional reality as well as anecdotes was also addressed, and it was noted that anecdotal evidence is not respected by the scientific community. Ms. Lawrence stated that personal testimony from the shock survivor community is important. It was suggested that holding public hearings is one method of allowing people to see consumer/survivor on their "good days." Focus groups were also suggested.
It was recommended that the concept of "People First" language be brought to the advisory council. For example, researchers receiving federal money are using such terms as schizophrenics in public meetings when referring to people with mental illness. It was suggested that the word discrimination be used instead of the word stigma so that eventually discrimination would be chosen to describe prejudice against people with mental illness, as the word discrimination often links consumer/survivor struggles to broader civil rights issues, whereas the word stigma only sets consumers/survivors apart.
The chair offered a list of the kinds of issues that the subcommittee could consider: involuntary commitment, discharge planning, community integration, planning councils, grants for grassroots advocacy, legal issues, issues of cultural competence, quality of life, stigma, discrimination, patient's bill of rights, parity issues, resiliency, violence prevention, training and the courts.
Welcome from SAMHSA Administrator, Nelba Chavez, Ph.D.
Dr. Chavez joined the meeting and noted the importance of the work of the subcommittee. Since her early involvement with community mental health in the 1960s, much has been achieved, but services are still inadequate and more work is necessary in terms of setting up adequate systems of mental health care. A current SAMHSA priority is a companion piece to the U.S. Surgeon General's Report on Mental Health that will focus on minorities.
Dr. Chavez encouraged members to follow the principles of the consumer/survivor movement. Treat all individuals with respect and grant them dignity. She noted the importance of completing the work outlined in the Surgeon General's report.
Term limits
Mr. del Vecchio presented issues concerning terms of service on the subcommittee. There are nine members of the subcommittee, with the consumer/survivor representative to the advisory council acting as chair. Each year, three members are replaced by new members. A member serving a three-year term must wait two years before applying for reappointment. Members serving one-and two-year terms may apply for reappointment after their service ends.
The Chairman asked if any members had changed their minds about service. None had. He asked for volunteers for particular terms of service. Ms. Mar and Ms. Preston volunteered for two-year terms.
The subcommittee followed a double-random procedure to allocate terms. The results appear as Appendix A to the minutes.
Members discussed procedures for future selection of committee members. For the next selection round, they will use the existing pool of candidates and will also advertise the openings. Mr. Burgmann said that selection of three members will be considerably easier than that of nine members. He noted the importance of diversity in such factors as geography, age and interests and added that the ability to network with consumers/survivors and consumer/survivor groups was a key factor in the selection process.
Vacancies and removals
There was discussions around two consecutive unexcused absences as grounds for removal for members with a three-year term. A vacancy can be filled from the existing pool of candidates. No agreement was reached about grounds for removal when absences are excused.
Networking with others
Members agreed that one of their key responsibilities was to solicit information from consumer/survivor groups and to inform them about the work of the subcommittee.
Discussion of possible recommendations
Discussion about recommendations occurred in two ways. (1) Members identified three issues to be brought to the advisory committee in the form of proposed recommendations. Mr. Brock agreed to draft a letter outlining those recommendations. It appears as Appendix B.
(2)Throughout the two-day meeting, members maintained a running list of issues that merit further attention from the subcommittee. Some items on the list can be viewed as action steps that are within CMHS's purview. Other items identify a need and still others require more study and conceptualization. The list appears as Appendix C.
In Mr. Pierce's absence, Dr. Caras convened the meeting at 9:00 a.m. Subcommittee members in attendance included Jon Brock, Sylvia Caras, Ph.D.; Caroline Kaufmann, Ph.D.; Juli Anne Lawrence, Donna Preston and Sharon Yokote. Maria Mar and Kevin Fitts participated by telephone. A quorum was present.
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