Mental Health Programs
About CMHS
CMHS National Advisory Council Subcommittee
on Consumer/Survivor Issues
Gaithersburg, MD
June 17-18, 2002
Welcome and Introductions
Acting chair Paula Stockdale called the meeting to order on June 17, 2002, at 10:00 a.m. Other Subcommittee members present included Jon Brock, Sylvia Caras, Ph.D., Kevin Fitts, Juli Anne Lawrence, M.A., Maria Maceira, Cynthia Wainscott, and Sharon Yokote. Subcommittee members alternated in serving as chairperson. Members introduced themselves and discussed highlights of their activities. Dr. Caras reported that a recent issue of Psychiatric News uses the language "discrimination and stigma," evidence that the consumer movement is having a positive effect.
CMHS Director's Report
Paolo del Vecchio, M.S.W., Office of the Director, presented highlights of the CMHS Director's Report. The New Freedom Mental Health Commission will hold its first meeting June 18-19, 2002. The names of 10 members were announced, including the National Empowerment Center's Dr. Dan Fisher. The Commission will issue an interim report in October on unmet needs and barriers in the mental health system, and a final report in spring 2003 on recommendations for immediate improvements using existing resources that enable adults with serious mental illnesses and children with serious emotional disturbances (SED) to live in their communities.
Activity on Capitol Hill focuses on parity legislation, Medicaid community services, violence toward women, and veterans' services. Parity legislation includes S. 543 and H.R. 4066; a majority in the House of Representatives supports the House bill. Substantially different limits for coverage between mental and physical health would not be permitted under the provisions of the bills, and the bills would exempt small businesses (up to 50 employees) from the requirements. Both versions broaden the 1996 parity law. Definitions of mental illness and its cost implications are important issues. A vote may be forthcoming; President Bush has supported mental health parity. S. 2072 would help states cover more costly mental health treatments for high users; S. 2203 supports counseling services in women's centers; S. 2204 improves mental health and substance abuse treatment for traumatized women through research; and S. 2044 expands mental health services for veterans. Mr. del Vecchio noted that the status of a bill regarding funding 10 technical assistance centers is unknown.
Ted Searle has been named Acting CMHS Deputy Director. Thom Bornemann is the new director of the Carter Center's mental health program. The consumer affairs component of the Office of External Liaison is now part of the Office of Director within CMHS. Other functions centralized at the agency level deal with public affairs and policy and budget development and execution.
Preliminary findings of CMHS's HIV/AIDS Cost Study indicate that study participants with HIV/AIDS and co-occurring mental health and substance abuse disorders are more likely to receive HIV/AIDS and substance abuse care than mental health services. A national conference on Medicaid and mental health services will be held September 17-18, 2002, in Baltimore.
Discussion. Dr. Arons suggested that members offer input to SAMHSA staff members Darryl Kade, Gail Hutchings, and Greg Morris. He noted that the budget now calls for mental health services research by the National Institutes of Mental Health (NIMH). He suggested that this is an opportune time to make consumer issues known within NIMH. In response to members' strong concerns about addressing the adverse features of the budget vis à vis mental health and consumer/survivors, Dr. Arons noted the appropriateness of educating people on the issues. He stated that CMHS staff testify before Congress on consumer activities and priorities.
SAMHSA has set a goal to eliminate seclusion and restraint (S&R) practices in behavioral health settings. A consumer-based training manual on alternative practices is in development. The next consumer dialogue will convene consumers and members of the faith community and other community organizations to discuss recovery. CMHS's Carole Schauer received the Secretary's Distinguished Service Award for her New Freedom Initiative contributions. The sixth regional meeting for consumers was held in May in Chicago. The top needs in the Midwest identified were consumer-operated services, parity/consumer participation, discrimination and stigma, housing, financing and Medicaid reform. CMHS will soon launch its Resource Center to Address Discrimination and Stigma Associated with Mental Illnesses. The ADS Center will provide information at 1.800.540.0320 (website under construction).
CMHS will publish six new booklets in the Recovering Your Mental Health series written with Mary Ellen Copeland. CMHS provides scholarships to many mental health conferences. About 120 consumer/survivors have been supported to date; they report back to CMHS. Dr. Caras noted that the report content should be shared with the consumer/survivor community.
A final report on the Invisible Children's Project (Orange County, N.Y.), which provides home-based, family-centered case management services to families with a parent with a mental illness, shows improvements in multiple outcomes, including keeping children at home and in the family.
Issue briefs on the needs of adults with mental health needs and children with special needs who may be impacted by welfare reform activities have been developed. Plans are underway to form an alliance with public- and private-sector partners on suicide prevention. In 2001 CMHS funded an effort to improve and evaluate crisis centers that operate hotlines; as of April 2002, 79 of 101 certified centers were networked through technology that provides national, toll-free access to crisis center/hotline services.
The National Child Traumatic Stress Initiative doubled in size to $20 million. CMHS is focusing on national disaster response and mental health. The Safe Schools/Healthy Students Initiative will fund a technical assistance coordinating center. A white paper on resilience and recovery will synthesize the state-of-the-art literature. Funding for the Community-Operated Services Program (COSP) ends August 31; a series of 13 multisite papers will be published.
Community Action Grants have been awarded to support consensus building and efforts in states and communities to implement effective mental health practices. Working with the Departments of Justice and Labor, SAMHSA is offering $2 million annually to each state in the Serious and Violent Young Offender Initiative for community reentry. A grant announcement to continue the five national consumer and consumer-supporter technical assistance centers for one year was issued.
The HHS Secretary's Workgroup to Reduce Chronic Homelessness will issue its report by August. A Policy Academy was held to develop state action plans to increase access to mainstream services for people who are homeless. SAMHSA and HRSA will provide $3.1 million in grants for mental health and primary medical care in community health center programs.
SAMHSA's National Mental Health Information Center is KEN with a new name. Dr. Caras suggested adding a website that ends in "dot gov."
A second training institute for state mental health Olmstead coordinators will be held in the fall. A Community Integration Now curriculum has been developed and a manual and materials translated into Spanish. A briefing paper on overcoming barriers to serving children in the community has been published; another on older adults is scheduled for September. CMHS will complete in the fall a video documentary on consumers who have moved into the community from psychiatric facilities.
The National Mental Health Statistics Conference in May was held in conjunction with the state block grant planners meeting for the first time. CMHS provides technical assistance on the Health Insurance Portability and Accountability Act (HIPAA), which will change procedures for how providers bill for Medicaid services and conduct electronic transactions. Subcommittee members suggested training for consumers on privacy stipulations in the legislation, such as permitting consumers to review their medical records and offer amendments.
Congress has asked for $5 million in technical assistance to look at mental health and aging issues, and a grant is pending to look at improving primary care settings for mental health service delivery for elders.
Old Business.
Approval of Minutes. The minutes of the Subcommittee meetings of September 5-6, 2001 and February 2, 2002, were approved at a Subcommittee conference call meeting on May 16, 2002.
Update on Vacancies. The Subcommittee welcomed new members Maria Maceira and Cynthia Wainscott, and staff member Chris Marshall. National Advisory Council members William Beardslee, M.D., Cynthia Wainscott, Donna Mayeux, Josie Torralba-Romero, M.S.W., and Karina Uldall, M.D., have been named to the Subcommittee on Consumer/Survivor Issues.
Status of Recommendations. Mr. del Vecchio reported that among the Subcommittee recommendations passed last February were funding of technical assistance centers and encouraging activities in the area of self-determination. The Center for Medicaid and Medicare Services (CMS) is preparing a demonstration project on promoting self-determination model approaches; SAMHSA hopes to participate. Mr. Brock reiterated that passing three recommendations maximum would have greater impact. Dr. Caras stated that not having a Subcommittee chair on the Council hinders the consumer work. Ms. Maceira asked for biographies of the new Subcommittee members before its next meeting.
Subcommittee Logistics. Dr. Caras chaired a discussion on Subcommittee process.
Electroconvulsive Therapy: State Reporting and Data Collection Efforts. Acting Chair Juli Lawrence introduced Linda Andre, Director, Committee for Truth in Psychiatry; Linda Logan, M.P.A., Director, Office of Policy Development, Texas Department of Mental Health and Mental Retardation (TDMHMR); and Cindy Hopkins, Director, Office of Consumer Affairs, TDMHMR.
Ms. Andre discussed research on electroconvulsive therapy (ECT). Decisions on research priorities and methodology have been made to date by professional researchers. Excellent literature is available on technical issues such as memory and cognition. She noted that ECT research began in the 1940s, when women described their memory deficits; these recipients spoke in their own words, but narrative is not used in research today. In the Janus study, transcripts of interviews pre- and post-ECT are dramatic in their differences, but the study is rarely criticized or replicated. Most researchers try to measure memory loss and disability. NIMH has funded ECT research since 1981, but only two grants studied memory and cognition within the last 20 years.
Larry Squire, a well-known memory researcher, but not an ECT practitioner, studied amnesia in the 1970s and was the first to design a test for ECT recipients. In a three-year study in 1983, he asked about memory ability and amnesia; 58 percent reported memory function worse than prior to ECT. He created a time line to measure amnesia, the basis of a 1985 NIMH policy statement that estimated that ECT causes amnesia for an average of eight months, today's standard.
Ms. Andre pointed out that researcher Harold Sackheim, Ph.D., began working for an ECT manufacturer about 20 years ago, but has not disclosed any financial conflict of interest. Although he claims that ECT does not cause brain damage, Ms. Andre noted that Dr. Sackheim has never researched the issue; his focus is on the effects of different types of ECT. Dr. Sackheim has designed questionnaires that include requests for information on issues not affected by ECT and assesses cognition with elementary standards and low follow-up. In May 2001, he denied ECT's effect on cognition or amnesia. Ms. Andre claimed that Dr. Sackheim rarely follows patients over the long term, uses small sample sizes and self-designed instruments, compares but does not study, uses inappropriate controls, and recruits subjects atypical of the broad population.
Ms. Andre noted that ECT reporting is nonexistent in most states. Some researchers design their own ECT machines, resulting in lack of uniformity of equipment. Professional studies do not distinguish among memory, amnesia, and cognitive disability. Out of frustration, Ms. Andre asserted, 10 years ago survivors designed their own surveys and research. In one of the first studies, Ms. Andre modified a questionnaire for head injuries. She asked people, including long-term ECT recipients, if they experienced common symptoms of head injury, and whether they experienced them right after ECT or after a year with ECT. All subjects had some symptoms of head injury for both time periods. Both groups were asked about the degree of compensation for the deficits in order to find out what happened to people to help rehabilitate them. This study was published by National Head Injury Foundation and presented at the first European Conference on ECT in 1992. In 1999, England's ECT Anonymous devised a questionnaire to which more than 200 people responded on the effects of ECT; 82 percent reported permanent amnesia. Ms. Andre noted that when recipients receive neuropsychological testing for head injuries, the pattern of impairment is consistent. They do well and poorly on the same types of tests, but about 30 IQ points consistently are lost. She suggested comparing data held by the Food and Drug Administration, which regulates ECT machines. She pointed out the need for consumer-funded research with instruments designed by recipients to document the experiences of recipients, using larger samples than in professional research. She identified the need to describe discrete types of impairment. Patients are their own perfectly matched controls, pre- and post-ECT.
The British Service User Research Enterprise (SURE) study focused on attitudes. Researchers examined published medical journal literature and evaluated it with sources such as legal testimony, news articles, a video archive of consumer/survivors, and e-mail forums. The diversity of resources lends added validity because of multiplicity of methodologies. First-hand accounts raised issues never touched upon in professional research. Recommendations made by NIMH in 1985 and in the SURE report have not been implemented: comprehensive research undertaken on persistent memory loss following ECT, with long-term follow-up. Data has not been collected on permanent losses related to ECT or whether ECT causes brain damage. Professional researchers are not asking basic research questions, only technical questions.
Discussion. Ms. Lawrence noted the disparity in content and focus between the professional literature in medical journals and the consumer studies, and questioned how to make the consumer approach acceptable to the medical research community. Ms. Andre noted that arguments that cognitive and memory impairment require evaluation on mood, not on cognition, are by analogy an implication, and no studies support this approach. Consumers could think about what kind of study might evaluate whether amnesia is due to depression or ECT.
Ms. Hopkins introduced the discussion on Texas legislation on ECT that responded to multiple reported abuses at private psychiatric hospitals. One bill to ban ECT emerged as an informed consent law that provides people with more protections from ECT than in any other state.
Ms. Logan described the law, which prohibits ECT for people younger than age 16, the age of mental health consent in Texas. The key provision is consent to therapy, unusual because, regardless of whether someone were or were not involuntarily committed, one still must give consent. A guardian can consent, but only in keeping with the wishes of the consumer, if known. Ms. Hopkins explained that the consent form must be signed before each administration of ECT; following ECT, retention of information may be problematic, so informed consent should be administered with an advocate to explain the conditions. The law prohibits involuntary ECT under any circumstances, and the question of voluntary consent and competence is raised because of memory loss post-ECT. To amend the law, she suggested a provision to appoint power of attorney to terminate the process if necessary. A large coalition supported absolute choice. The informed consent bill passed, but did not state the content of the form. A consensus agency rule was developed.
Data is collected on every ECT administered in Texas. Ms. Logan stated that the data collection process must be redefined in terms of pre- and post-ECT. Better definitions are needed, a difficult task given that participatory processes include everyone at the table. With direct mediation, a better chance exists of developing compromise. Consumers and advocates are involved actively in developing rules.
Ms. Hopkins described ECT reporting requirements. Ms. Logan explained that required registration of all ECT equipment tracks old machines, amperage differences, and safety of machines; data can be reviewed in death investigations. Ms. Hopkins stated that data analysis is a missed opportunity. She noted the need for uniform data reporting requirements and some expectation to do that, perhaps tied to data comparisons at the national level, such as the MHSIP report card. Research would be facilitated on a cross-site basis in a national study. Lack of analysis taints the data, because of unsupported claims that frequently attach to the data. No one has asked the questions that should be answered. CMS has the opportunity, through Medicaid, to put some requirements around ECT without having to go through legislation. Another recommendation is to begin a nationally uniform set of information around side effects. Ms. Hopkins pointed out that evidence-based practices require symptom reduction. Most states in the TMAP (Texas Medication Algorithm Project) program use a self-rating scale for depression. Ms. Hopkins suggested the importance of learning what percentage of people who get ECT are victims of abuse.
Ms. Hopkins recommended pre- and post-ECT self-ratings to derive a baseline of memory. Subcommittee members observed that a five-year retrospective case review might be worthwhile. Ms. Hopkins noted that forced ECT is permissible in most states. Managed care companies may prefer to pay for ECT on an outpatient basis rather than paying for inpatient care or a lifetime of the new-generation pharmaceuticals.
Dr. Caras suggested compiling a white paper on ECT and presenting a recommendation to the National Advisory Council. Ms. Andre stated that the Committee for Truth in Psychiatry has developed an informed consent form supported by recipients. It would be useful for CMS to change the rules for ECT providers to require reporting certain data elements.
Public Comment and Adjournment. Time was set aside for public comment, but no speakers appeared. The meeting adjourned at 5:05 p.m. and reconvened at 9:00 a.m. the following day.
SAMHSA Administrator's Report
Acting chair Kevin Fitts introduced Joseph H. Autry, III, M.D., Deputy Administrator, SAMHSA. Dr. Autry stated that SAMHSA Administrator Charles Curie is a strong advocate for helping consumers and families. He noted that tight budgets are anticipated for 2003 and 2004, and that SAMHSA supports treating people in the least restrictive environment. SAMHSA activities are based on three themes: citizen centered, results oriented, and market based (meeting the needs of the people they seek to serve). The SAMHSA priority matrix sets the themes and programs for years to come. The New Freedom Initiative's Mental Health Commission will help get the best interventions into everyday clinical practice in the least restrictive, community-based treatment possible. The Commission will recommend to the Administration how to invest resources and get the best science. Its one-year term implies the necessity for input and testimony.
SAMHSA focuses on recovery in mental health and substance abuse to enable people to remain in their communities without recurrence. A report on co-occurring mental and substance abuse disorders is due to Congress in December 2002; a consensus framework has been developed. The Mental Health Commission will debate this issue.
SAMHSA is developing a strategic action plan for seclusion and restraint (S&R), including better interface with other systems for prevention, treatment, and recovery to best leverage other agencies' money. CMS is working with institutions and SAMHSA on S&R training in children's residential settings. The Protection and Advocacy Program has put S&R on its agenda. NASMHPD's National Technical Assistance Center provides technical assistance to state mental health systems on S&R. SAMHSA collaborates with CMS and JCAHO.
Homelessness is an area of major concern. SAMHSA is working with HUD to ensure that the most effective treatment and housing options are available. Together with other federal partners, SAMHSA recognizes a confluence of interests to stop approaching issues as individual problems, but to address whole individuals. Two state policy academies were conducted on homeless families and chronic homelessness. With HUD, SAMHSA is looking at developing options for a continuum of care model wherein housing and mental health treatment are linked. HRSA is working to make mental health screening and services available in mental health and community clinics to address the whole person. The 2003 budget proposes an increase in projects for homelessness.
Discussion. Dr. Caras noted concern about linking housing to treatment compliance. Dr. Autry stated that the goal is to remove contingencies for housing; all needs must be met. Ms. Yokote suggested that mental health training is needed for local HUD officials. Dr. Autry pointed to difficulties in getting primary care clinicians to ask the right questions on mental health and substance abuse because of time constraints. Modules of assessment, as for depression, might be developed for housing issues. Dr. Autry noted that the Mental Health Commission will view the CMHS National Advisory Council as a resource. Dr. Autry confirmed that "discrimination" has joined "stigma" on the matrix and that Mr. Curie wants to use stigma to migrate toward the issues of disparities and discrimination.
Mr. Brock expressed concern about the Subcommittee's new members who may tip the balance away from the perspective of people who have experienced mental illness. Dr. Autry responded that the composition of the Subcommittee will conform to federal guidelines and that no plans exist to discontinue the Subcommittee. He asserted that it will be helpful to have Council members on the Subcommittee will help ensure the work is helpful to the Council, and suggested that the Subcommittee discuss how it can be helpful to the new Commission. He also suggested bringing to the Council's attention the Subcommittee's need for a permanent chair.
Mr. Brock questioned the value of an evidence-based approach to medicine that promotes professional ascendancy and demotes/excludes citizen involvement. Dr. Autry stated that "evidence-based" in practice refers to "something that works." Increased emphasis on the recovery approach to mental illness produces a new layer of evidence that shows that individuals in the community can maintain recovery and avoid jail and hospital. SAMHSA is interested in people knowing about the whole range of treatments that work and wants to ensure that greatest emphasis will promote community-based care.
Ms. Stockdale noted that abuse is surfacing as a cause of mental illness. She stated her hope that the Commission adopts the matrix in looking at how mental health is addressed in this country. Dr. Autry stated that the system must focus on recovery and the need for social supports, especially for people with SED. The broader range of real world practices must be examined.
Dr. Autry noted that the Administration's budget for 2003 omitted support for the technical assistance centers. Congress has yet to act on that, but some members will debate the issue. He noted that without drop-in centers in a community, someone is less likely to succeed in the community; the need is to show payors that drop-in centers are a necessary service. In the move toward performance partnership block grants, states will want to try this approach. Mr. Fitts suggested looking at and publicizing what is effective in states and communities. Dr. Autry responded that both the PATH Program and the Children's Mental Health Program were highlighted to the Secretary because they work. Feedback has prompted modifications in the next wave of interventions to improve them. The Commission will spotlight more successes.
Mr. Fitts noted the need to help people get jobs. Ms. Yokote suggested that CMHS move to train paraprofessionals and create career ladders, a cost-effective way to move to empowerment. Dr. Autry stated that SAMHSA wants to do training on evidence-based practices. He stated that as the field moves to a managed behavioral care environment, different professions may be created, including paraprofessionals who will become a part of that system. Practice guidelines are needed in the private sector. States are looking at outcomes for the money they are spending, outcomes that may be achievable with less highly trained individuals. The Commission may address states purchasing paraprofessional services that produce good outcomes.
Public Comment. Economist and human rights consultant Michael L. Sharpston suggested consideration of the role of employee assistance programs (EAP), now operated by 80 percent of large U.S. companies. In addition to substance abuse, EAPs now deal with depression and elder care issues. EAPs have significant potential for outreach. This much-appreciated benefit for employees has data to support it. It is important for companies and consumers to sort out issues of potential role conflict and confidentiality. Major cost savings to employers may be possible if conditions are treated earlier rather than later. Dr. Autry noted that HIPAA probably applies to EAP. Few medium-sized and no small companies use EAPs. Kim Murphy, CONTAC, West Virginia Consumer Association, described the Alternatives 2002 Conference in Atlanta, September 18-22, 2002. CONTAC runs six consumer-run drop-in centers, with transportation, and plans to develop three more drop-in centers in West Virginia. CONTAC offers computer training, peer support, and other consumer services.
SAMHSA Administrator's Remarks
Charles G. Curie, M.A., A.C.S.W., SAMHSA Administrator, stated that systems must be consumer-driven and that consumers must be at the tables of influence in policy development, treatment planning, and recovery planning. He assured Subcommittee members that SAMHSA is focused on what consumers need. He noted that the current "era of recovery" is based on consumers taking charge of and managing their own illnesses, affairs, and lives. He stated his understanding that quality of life depends on a job, a decent place to live, and a "date on Saturday night"—connection to a community. He noted that multiple consumer voices exist and that SAMHSA's responsibility is to have diverse voices at the table to move the system forward and divergent viewpoints closer.
Mr. Curie urged Subcommittee members to forge a connection with New Freedom Commissioner Dan Fisher, and noted that Mr. Curie was appointed ex officio to the Commission. The Bush Administration has not discussed the issue of forced medication. Mr. Curie suggested that the Subcommittee provide input to the Commission, including paper testimony. He has discussed with CMHS Director Arons his expectation of representation of the consumer/survivor viewpoint on CMHS's and SAMHSA's Councils.
Subcommittee Goal Setting. Acting Chair Sylvia Caras led the discussion on future directions for the Subcommittee. Members identified issues that SAMHSA expects the Commission to look at, including criminal justice, homelessness, and early childhood and older adults; controversial issues such as forced treatment; how "outliers on the bell curve" have thrived; service disparities; needs of consumers in rural areas; violence and criminal justice; transportation; 5-by-5 program; parenting with a psychiatric disability and the needs of children with parents with psychiatric disability; inclusion; and data gathering as a focus of issues.
Dr. Caras suggested the theme "a job, a decent place to live, and a social life." Another theme was "nothing about me without me." Mr. Brock noted that traditional links should include alternative approaches and suggested "going where the money is" and where development is expected to be, tying values to consumer programs and services. Dr. Caras noted the need for links to other agencies and a focus on best practices.
Subcommittee members agreed to focus for a year on subject matter guided by the New Freedom Mental Health Commission and SAMHSA's priority matrix. Data will be the "driver," with program issues to be decided. An overarching theme will be that consumers' values should be embedded in researchers' questions. The Subcommittee will participate in teleconferences about values and setting a theme for the next three meetings. Recommendations will have consistency for the Council. Ms. Wainscott suggested that Subcommittee-driven issue papers first should be presented in two-sentence proposals to the Council for agreement.
Members discussed attribution of remarks in public to make it clear that individuals speak only for themselves.
Mr. Brock noted that consumer-operated programs and services may offer a forum for action on a variety of issues. If COSP supports consumer-operated programs and services, it will allow the whole array of talent, skill, interest, and drive to be harnessed. Dr. Caras noted the opportunity to promote to the Commission self-help, consumerism, consumer participation, consumer-operated services, choice, and outcomes—all supported by the existing evidence base.
Commissioner Dan Fisher will receive a standing invitation to participate in Subcommittee activities. Irrespective of the subject matter, Subcommittee members agreed that the lens through which they look at a topic should be a set of values. By the September meeting, the Subcommittee will have developed a list of priority needs and issues for consumers. The Subcommittee will develop a three-dimensional model for programs, principles, and consumer values. Before the September meeting, the Subcommittee will begin collecting input on evidence-based programs and best practices. At the September meeting, the Subcommittee will select those programs to send forward to the CMHS National Advisory Council for approval to be sent to the Commission, with an overlay of consumer values on the SAMHSA matrix. At the January meeting, the Subcommittee will review and react to Commission products to date. The spring meeting will focus on the work of the Commission, with subject matter to be determined.
Recommendations to the National Advisory Council. The Subcommittee passed unanimously the following two recommendations to the National Advisory Council:
The Subcommittee on Consumer/Survivor Issues recommends that the CMHS National Advisory Council support improved and uniform collection and analysis of data regarding electroconvulsive therapy. Attention should be focused on formulating consumer-driven research questions on the issue.
The Subcommittee on Consumer/Survivor Issues recommends that the CMHS National Advisory Council endorse the 10 recommendations made by the National Council on Disability in its document From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves published in January 2002. The report's core recommendations (paraphrased) are:
- Public policy needs to move towards a totally voluntary, community-based mental health system.
- A central role must be played by people labeled with psychiatric disabilities themselves in the direction and control of programs and services designed for their benefit.
- Aversive treatments should be banned.
- Culturally appropriate alternatives and consumer/survivor-driven alternatives should be encouraged.
- Support services in the community should never be contingent on treatment.
- Rehabilitation programs must be individualized and responsive.
- Federal income support programs should provide flexible and work-friendly options.
- Parity laws must define parity only in terms of voluntary treatments and services.
- Implementation and enforcement of ADA, FHA, CRIPA, PAIMI, must give people labeled with psychiatric disabilities a central role in setting the priorities.
- Timely, coordinated, family-centered supports and services must be made available in mainstream settings in order to reduce the institutionalization of children and youth.
Ms. Wainscott urged the Subcommittee to remember prevention as concept vital to public health. If the Consumer Survivor Subcommittee talks about it, it has great impact. Dr. Caras and Ms. Yokote agreed to serve as point persons for the task to compile information on values and models.
The Subcommittee agreed to add communication guidelines about people with disabilities to the Subcommittee's operational guidelines. Members discussed the concept of prevention, a controversial theme among consumer/survivors and others. Ms. Wainscott noted the suitability of the topic for continued Consumer/Survivor Subcommittee discussion.
Adjournment. The meeting was adjourned at 2:40 p.m. Tentative dates for the next Subcommittee meeting are September 3-4, 2002, with the CMHS National Advisory Council meeting on September 5-6, 2002.
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