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July 1995 Consumer/Survivor Planning Meeting

Report for the Center for Mental Health Services

Prepared for:
Center for Mental Health Services
5600 Fishers Lane
Rockville, MD 20857

By: On Our Own of Maryland, Inc.
3421 Benson Avenue, Suite 210A
Baltimore, MD 21227

Printed 1996

This report is intended to stimulate further public dialogue and comment on this subject. It does not reflect a final position on its many findings and recommendations. Comments from interested individuals or groups are welcomed and should be forwarded to the:

Consumer- Affairs Specialist
Center for Mental Health Services
Substance Abuse and Mental Health Services Administration
5600 Fishers Lane, Room 13-103 Rockville, MD 20857

"The Center for Mental Health Services (CMHS), Substance Abuse and Mental Health Services Administration, is one of the U.S. Public Health Service agencies in the Department of Health and Human Services. It is the Federal agency designed to provide national leadership in partnership with States for improved prevention, treatment and support services for people with mental health problems and their families. The Director of the Center is Bernard S. Arons, M.D.

The Center's mission is to bring new hope to those who live with a serious mental or emotional disorder by leading Federal/State partnerships to demonstrate, evaluate and disseminate service delivery models to treat mental illness, promote mental health and prevent the development or worsening of mental illness when possible."

This document was prepared for the Center for Mental Health Services (CMHS) under grant number 6 HDS SM50463-03-2. These proceedings were edited and summarized from verbatim audio tapes and written notes. The contents of these proceedings do not necessarily reflect the views of the CMHS.

All material appearing in this report is in the public domain and may be reproduced or copied without permission from CMHS or the authors. Citation of the source is appreciated.

Printed 1996

Background

The Center for Mental Health Services (CMHS), Substance Abuse and Mental Health Services Administration (SAMHSA), as part of its efforts to facilitate consumer/survivor participation and involvement, invited over twenty-five diverse consumer/survivor organizations to designate a representative to attend a planning meeting.

The purpose of this planning meeting was to solicit:

1. Feedback and suggestions on present and future CMHS activities which will provide guidance in identifying and targeting issues and strategies that best meet consumer/survivor needs and preferences. Areas of discussion included: demonstration projects, Performance Partnership Grants, research and data collection areas and others; and
2. Suggestions for on-going methods and mechanisms to provide consumer/survivor input to CMHS.

This effort was prioritized by Bernard S. Arons, M.D., the Director of the Center for Mental Health Services. Paolo del Vecchio, Consumer Affairs Specialist at CMHS, spearheaded this event. CMHS contracted with the statewide consumer/survivor organization On Our Own of Maryland, Inc. to handle the logistics of this special meeting and to develop a report on the various recommendations made by the participants.

The meeting took place on July 14 & 15, 1995 at the DoubleTree Hotel in Rockville, MD.

The following is the final report on the recommendations of the July 1995 Consumer/Survivor Planning Meeting.

The authors of this report recognize that there are a number of terms used to identify people who currently are or were recipients of mental health services. For the purpose of brevity within this report, "consumers/survivors" or "consumers" will be utilized.

Offering Suggestions to The Center for Mental Health Services

Introduction: This is a report of a meeting of mental health consumer/survivors with the Center for Mental Health Services (CMHS). Since a number of participants expressed concerns about language and its importance to them, this report attempts to use the language of the participants in reporting the proceedings. Information presented does not necessarily represent the views of the group or consensus, but of the individual participants.

Opening by Bernard Arons. M.D. Director CMHS

Dr. Arons emphasized that the focus of this meeting is for the participants to provide input and suggestions to CMHS. CMHS wants, needs and is encouraged by the possibility of enhancing consumer participation in the activities of CMHS and needs to take further steps to make this happen.

The consumer movement has evolved into an effective grassroots advocacy effort. It has changed how people view mental illness and treat consumers. Diversity is a tremendous asset of this movement. To further involvement, we need to find areas of agreement, of concern and common interest that can help us do our work much better. We hope to make progress and establish a structure for participation so that we don't have to randomly bring people together to get their input.

Paolo del Vecchio's appointment at CMHS as the first Consumer Affairs Specialist reminds us of the importance of consumer issues. His responsibility is to facilitate consumer participation and to lay the framework for permanent, ongoing participation.

CMHS is aware of several pressing consumer concerns including involuntary treatment and electroconvulsive therapy (ECT). Involuntary treatment is not governed by Federal law but by State and local law. CMHS can and is working to develop alternatives that will reduce the need for involuntary treatment including the use of advanced directives. Likewise ECT is not regulated by CMHS but rather the Food and Drug Administration ( FDA). CMHS can assist by facilitating discussions with the FDA. Also, there is currently work being done around informed consent issues.

Dr. Arons quoted from Dr. Martin Luther King who said in 1971, "All this is simply to say that all life is interrelated. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly. As long as there is poverty in this world, no man" (or woman King would add) "can be totally rich even if he has a billion dollars. As long as diseases are rampant, no man or woman can be totally healthy. Strangely enough, I can never be what I ought to be until you are what you ought to be. You can never be what you ought to be until I am what I ought to be. This is the way the world is made, I didn't make it that way. But this is the interrelated structure of reality. John Donne, a product of a few centuries ago cried out, "No man is an Island, entire of itself, every man is a piece of the Continent, a part of the main;....any man's death diminishes me, because I am involved in Mankind; And therefore never send to know for whom the bell tolls; It tolls for thee." If we are to realize the American dream, we must cultivate this world perspective.

The-question that was asked of the group was, "How can we structure consumer involvement in order to have regular and ongoing input?"

Report on Budget Proposals

The meeting began with a discussion of the recent congressional budget actions passed in the House. Demonstration grants have been reduced from $506 million to $144 million for SAMHSA where most could go to substance abuse. PATH, CSP, CAASP have all been eliminated in the House.

Performance Partnership Grants

The current Block Grant program is to become Performance Partnership Grants if legislation passes. Mental Health Block Grants existed since the early 80s and have a number of requirements which states must address. Performance Partnership Grants envision that state and federal governments work together on health as opposed to the delivery system. The Department of Health and Human Services will collaborate and negotiate with a number of parties (including consumers) on establishing the national health status goals and objectives that will be used in performance grants. States will choose which objectives they wish to address. These will then be evaluated by quantitative objective measures to insure that the health objectives are met.

Suggestions to CMHS

• That agendas and outcomes should be driven by consumer perspectives.
• CMHS could facilitate a rule that sets up planning councils as having a set number of consumer/survivors on them rather than just a set number of consumers or family members.
• Family members and consumers on committees should be actual users of the public mental health system.
• Further progress should be implemented for consumers to participate on review panels to insure what is in the plans is actually occurring.

Consolidated Demonstration Projects:

Research is important as a policy matter and to use findings to let the policy makers know what can be done and what it will cost. In that regard, demonstration projects will be identifying questions that the system needs to have answered, in order to help improve the system. The basic purpose of Demonstration Projects is to generate information about what works.

Suggestions to CMHSV

• Support a Demonstration Project to answer the question: What allows people to become independent of the mental health system?
• Support a Demonstration Project that identifies: What are the supports that would allow for independent living free of psychiatric drugs?
• Support a demonstration project on the cost effectiveness of self- help services.

People of Color Issues:

The primary issue for people of color is cultural competence - services that are culturally sensitive and relevant. One of the major activities of this Branch has been to increase the number of ethnic providers. Much work has already begun in places like Ohio in looking at the prevalence of mental disorders among ethnic populations and their diagnosis. We need to begin to ask for the status of ethnic minorities in the system and their outcomes. In many cases, states do not have this data.

CMHS is aware that rural areas have an ethnic way of life and has begun work with the University of Denver to look at Rural and Frontier Issues. Services in isolated rural areas are a problem. These issues will be extremely important as managed care begins to look at how to provide services in these areas. CMHS is also working collaboratively with the Department of Housing and Urban Development, the Department Of Agriculture, and the Veterans Administration on ethnic rural issues.

Suggestions to CMHS

• Focus on issues of Native Americans. We need more involvement and more input from this populace.
• Gay/lesbian issues should be recognized as a need to be addressed. The Fruit and Nut Bar (an organization representing gays and lesbians) needs to be invited and included in discussions to insure their voice is heard.
• We need to increase outreach to African Americans and recruit them to participate.
• Blacks and others may seek alternative treatments since some groups tend to distrust psychiatrists and look for alternative care. Discussion around alternative treatments used by other cultures should be furthered.
• There is a need to prepare. people to be able to come to these meetings and participate.
• There is also a need to be more inclusive with regard to meetings with Guam/Asian Americans.
• Mental Health Consumerism is a culture and work should be done to help define what is culturally appropriate.

Consumers/Survivors and Managed Care:

There are three main issues for consumers about managed care: Gaining knowledge about the system; Being able to negotiate systems and having access; and Being empowered. There are several publications that CMHS has available that will help individuals gain knowledge in these areas.

Traditional managed care developed in the 1930s in California through Kaiser Permanente's HMO model. In the public system, utilization review has developed into the managed care models that we are talking about today.

Today in the U.S., 107 million people in the private sector are covered by managed care organizations. This represents approximately two thirds of the privately insured. A number of states have already begun to use Medicaid waivers to implement managed care as part of the public system.

There are four major areas of concern as the public system is implementing managed care. The first is the transition from fee-for- service providers to managed care organizations. The second issue is one of carve-in vs. carve-out. Carve-out approaches means that services are provided outside of the rest of the health care system. The issue of the safety net is the third issue. Who will provide the necessary back-up when all services are exhausted or disasters occur? As managed care develops into a totally medical model approach, what will happen to social services, housing, and self-help activities that are now part of public mental health.

CMHS has been active in looking at appropriate clinical protocols that will become part of managed care. Clinical protocols are standards of practice that are generally agreed upon by a clinical field. There is a great need to develop clinical protocols for rehabilitation and self- help. CMHS has also been active working to develop quality performance indicators. These outcome measurement tools or report cards are the only instrument focused on consumer outcomes.

Suggestions to CMHS from Participants:

• There is a need to help define what goes into the packages of services that managed care organizations will provide.
• CMHS could help distribute model grievance and ombudsman procedures like those developed as part of the Oklahoma waiver.
• CMHS could further refine and suggest the development of satisfaction teams that include consumers like Florida has.
• CMHS could suggest that a quality managed care system does not use involuntary treatment.
• The words behavioral health care can be easily confused with social control. Education to managed care organizations about language and consumer issues would be useful.

Report from Break-out Session on Electroconvulsive Therapy

Informed consent doesn't often work because individuals don't have adequate information. There is concern that the information provided by ECT machine manufacturers is very biased and one sided. CMHS could aid in the development of more balanced information about ECT that could be made available to anyone who wishes it. CMHS should work on informed consent such as the Texas model.

There needs to be more research about whether ECT causes brain damage which CMHS could work to encourage the National Institute of Mental Health to sponsor. This research should include survivors who have experienced ECT. There is also a need to develop methods to overcome researchers' objections to "non-researchers" participation.

• CMHS should put together a literature review of not just professional articles, but, experiential pieces from shock survivors themselves.

• There needs to be better reporting of ECT use and problems caused by ECT. Possibly, CMHS could sponsor a forum to discuss reporting issues and determine methodology. Issues of national statistics and the need to collect data from States with the possible establishment of a national requirement for reporting.

• Educational materials on ECT need to be developed. Possibly a video could be developed about ECT that individuals could have available to them along with information before and after treatment to promote real informed consent.

• CMHS should sponsor a round table much like the round tables on forced treatment to addresses the issues of ECT.

• CMHS should review letters submitted to the FDA to address the adverse effects reported of ECT.

• CMHS should promote research on the adverse effects of ECT with possibly a pre and post MRI test.

• CMHS should gather an oral history of people who have had ECT looking particularly at qualitative measures and experiential descriptions.

• CMHS should work on alternatives to ECT, possibly with the National Institutes of Health, Office of Alternative Medicine.

• CMHS should promote the participation of consumer/survivors on scientific advisory committees exploring the issues of ECT.

• CMHS should leverage its role with other Federal agencies and suggest to FDA and others that they should establish a consumer advisory committee.

• CMHS should provide better education for physicians and psychiatrists to broaden their perspective about ECT consumer/survivor experiences.

• CMHS should bring together a group to explore the ethical and moral issues of ECT.

• CMHS should establish an 800 number for balanced ECT information.

Report from Break-Out Session on Involuntary Treatment / Civil Commitment

This group focused on understanding forced treatment from first-hand accounts. Because the CSP program hosted a serious of meetings on involuntary treatment from 1990 1992, the session determined it would submit that report as a series of recommendations. The CSP report is titled, "Report on the Round Table of Alternatives to Involuntary Treatment." Generally speaking, people in the subgroup were against involuntary treatment. Attention needs to be paid to passive threats of involuntary treatment and to coercion. Children's issues around involuntary treatment should also be addressed as this is a moral issue rather than a legal issue.

Suggestions and Comments on Involuntary Treatment/Civil Commitment

I. Crisis Response

• Focus on primary/secondary prevention - holistic approach to the person - the current system of 'care' responds only to crisis.
• Crisis prevention/management and community support services are often funded and administered separately - little attention is paid to the relationship between the availability of the basic necessities of life and the development of crisis.
• Need-for more flexible community supports. .typically housing providers are unable to offer needed support/respite during crisis and end up committing a resident to avoid disrupting the living environment of other residents.
• "Crisis" can be the result of: physical illness, stressful circumstances, drugs (legal/illegal), organic conditions, a history of experiencing violence or sexual abuse, rage about social/racial discrimination, loss of a job or housing, death in the family, interpersonal conflicts, etc. Appropriate responses to crisis situation are required.

II. Use of Coercion to Enforce Conformity

• Belief that the slightest deviation from 'acceptable behavior' could lead to recommitment.
• The existence of coercive power leads the provider to assume responsibility for defining the situations which require intervention and intervening even when no good solutions exist (e.g. "not doing well," external appearances, productivity, congruence with earlier behaviors).
• Families often fail to appreciate that substantial personal changes may result from the individual's former coercive contacts with the system. Externally defined "success" criteria results in the threat of coercion to ensure that someone remain within another's imagined goals and potentials.
• Minor law-breaking or interpersonal conflicts can result in commitment if the individual involved is known to be a mental health client.
• Recommend use of alternate dispute resolution or problem-solving mechanisms.

III. Limiting Alternative Approaches

• The more the system depends on coercive strategies, the less likely it is to develop techniques for intervening early to prevent escalation or crisis situations.

IV. Whose Best Interest?

• 'Give one person Haldol and seven people's blood pressure goes down...'
• 'Protecting society, maintaining a tranquil environment, minimizing professional risk...'
• -Such goals create confusion about the actual events transpiring, a lack of honesty in the interaction and tremendous anger on the part of the individual involved.

V. What are the effects?

• Damaged Self-Esteem - feelings of dehumanization, apathy, submissiveness, frustration, marginalization, destruction of trust and inability to establish 'therapeutic relationship' with persons who hold the power to commit.
• The combination of fear and self-stigmatization which can result from involuntary commitment and / or treatment may prevent the individual from asking for / seeking help when next it is needed.

Report from Break-Out Session on Communications & Stigma

Dr. Arons has been spending a lot of time recently talking about stigma so CMHS is always looking for personal experiences of stigma or additional information to include in speeches.

Consumer/survivor groups are one group that is not addressed in the numerous publications that deal with disasters. Suggest special publications and information for consumer/survivor organizations and members who may face a disaster.

The question was raised in this group discussion of whether, as SAMHSA is developing its stigma campaign, issues of mental illness and substance abuse can be addressed together. Artists for Recovery is a group that is currently working on both and might be considered as a model.

Education about stigma needs to be provided to: State and local governments; curricula in colleges to educate the educators; general public; family members; and consumer/survivors.

Generating knowledge about stigma is not enough.

Consumer/survivors could begin a massive educational campaign in high schools and participate in developing curricula.

With the criminalization of substance abuse, the issue was raised if it was wise to link the stigma of mental illness with a criminal activity.

The root causes of stigma should be focused on and would require more time than just this meeting. This should be considered for a round table type discussion or institute.

The stigma of other disabilities was discussed. Particularly the issue of having materials available in braille for people with vision impairments. The National Library Service (800-424-8567) was given as a resource that can assist with making information available in alternative formats.

Issues of language were discussed. Continuing to use the word stigma instead of discrimination does not help. The language in many statutes such as "serious and persistent mentally ill" is offensive and contributes to stigma. There is a need to make sure that the language used is acceptable to the people it refers to first. There should be a survey conducted of what consumer/survivors should call themselves as the term consumer/survivor has evolved and no one has asked the populace if this is preferred.

Is there an assumption that a biological label to a mind process can reduce stigma?

Report from Break-Out Session on Self-Help Services and Employment

This group reported that it looked at four main issues in this area: The Self-Help Technical Assistance Centers; Demonstration Projects; employment and the employment demonstration grants; and self-help.

The group reported that it would like CMHS to find funding for the two self-help technical assistance centers. The Centers should be focused on information dissemination in a variety of forms including pamphlets and written materials, but also face to face, on site, and technical assistance by telephone. There should be an emphasis on regional assistance, local and even neighborhood access to the Centers bringing information to where the people are rather than simply saying this is what we have available.

Demonstration projects should put emphasis on non-biased recruitment, not taking into consideration what a person is labeled with, but what services are available. Greater attention should be paid in the demonstration projects on training. Issues that should be addressed through training include: assertiveness, empowerment, Americans with Disabilities Act (A.D.A.), and Social Security Administration work incentives.

This subgroup was in absolute agreement with the value of work. Real emphasis should be placed on the idea that work is an offering of service and we should not get caught up on whether it is paid or volunteer. Training needs to be provided to employers, consumers, and labor unions to expand opportunities to make employment possible. A.D.A. issues should be approached through local bar associations to do more pro-bono work. Legal aid--which is considered the first place to go--needs more training on the A.D.A., particularly around issues for people with psychiatric disabilities. The coordinating center for the employment demonstration projects should include direct consumer/survivor input including consumer/survivor representation on the steering committee.

Self-help should begin to focus on real supports rather than passive training. Materials could be developed and provided to groups on practical issues such as Social Security work incentives. Lots of time was spent talking about pre-vocational training, and pre-employment opportunities, but one group member stated that "pre" means never.

Report from Evening Break-Out Session on CMHS Suggestions

This group focused on identifying the broad-based items that should be suggested to CMHS as policy issues. The following list was developed by a group of 19 individuals who arrived at it through consensus.

1. Develop a Consumer/Survivor Bill of Rights for Managed Care Organizations.
2. Location of meetings that CMHS holds and sponsors could be co-located in or near hospitals, prisons, jails, shelters, and community programs.
3. Disseminate information about national meetings to local consumer groups so that they can communicate their issues with consumer/survivor representatives who may be attending.
4. Have consumer/survivors help in defining data to be collected from State and other organizations and assist in developing the strategies for data collection.
5. CMHS should assist and require consumer/survivor participation on all boards of organizations that CMHS contracts with.
6. CMHS needs ombudsmen for the managed care arena.
7. New technical assistance center contracts should include free technical assistance for local organizations. Technical assistance centers should develop a national database of consumer/survivor experts which is made available to state and local organizations.
8. CMHS should fund the existing offices of consumer affairs to initiate local consumer/survivor demonstration programs.
9. CMHS should not view technical assistance centers as spokespeople for all mental health consumers, since they are technical assistance centers, not organizations which have membership.
10. Within meetings and conferences, time allotments should be given to consumer/survivors that are not tokenistic within the framework of the meetings.
11. CMHS should facilitate more discussions with other Federal agencies (including Office of Personnel Management, Department of Housing and Urban Development, and Department of Education, etc.) to involve consumers/ survivors in their planning and implementation of the various programs that impact upon consumers/survivors.

Report from Evening Break-Out Session on CMHS Reauthorization

This group focused on the CMHS budget cuts and their impact on demonstration programs. The major resolution of this group was that demonstration project funding should be maintained so that technical information can be shared.

This group recommended and resolved that: As individuals, they support continuation of CMHS and those services that empower mental health consumers/survivors, eliminate forced treatment including ECT.

It was also recommended that CMHS take a public position on forced treatment and ECT

7/15/95 DAY II

Creating the Vision of Expanded CMHS Consumer/Survivor Participation

- by Paolo del Vecchio, Consumer Affairs Specialist, Office of External Liaison, CMHS

There are a number of issues which the Consumer Affairs Specialist immediately became involved with. The major focus is to advocate internally promoting consumer/survivor issues and involvement in all CMHS matters. Due to the large number of areas, priority was given to the following activities:

• Development, updating and maintenance of consumer/survivor mailing lists. The last list was refined several years ago and no current list was available;
• Develop a consumer/survivor database of interest or expertise to provide referrals to increase consumer/survivor participation. This is being facilitated by using a questionnaire in the newsletter just circulated from this office;
• Develop a Consumer/Survivor "Participation Plan" to provide recommendations on how consumer/survivors can become more involved in Center activities:
• Communication and networking - although a limited travel budget, Paolo is trying to attend local, regional and national meetings and network with advocacy groups to listen to consumer/survivors and provide a pipeline for their issues to CMHS;
• Begin preparing basic information about managed care in a booklet to make it understandable for people on the grass-roots level;
• Involuntary treatment issues, and ECT; and undertaking a role with SAMHSA on their stigma project to train their staff on stigma issues.

Suggestions to CMHS from Participants:

• Publish more about needs and issues in the technical assistance centers' newsletters.
• The CMHS consumer newsletter should be shared throughout the Statewide groups maybe put notice or suggestion in it to State consumer groups to distribute information in it.
• CMHS National Advisory Council only has one consumer/survivor and needs more. Recommend at least 51% consumers/survivors on the advisory council.
• Insure consumer/survivor involvement in writing of Request For Proposals (RFP's) that CMHS develops and consumer/survivor involvement in writing research questions. Paolo needs to be involved in writing all RFP's out of CMHS.
• Paolo needs his own advisory group or standing committee of consumer/survivors which could also be advisory to CMHS.
• It is recommended that Paolo be in the loop at CMHS and SAMHSA.
• Paolo should report directly to the Center Director (Dr. Arons) and in his office.
• CMHS must take advantage of designing Paolo's position with assistance from NACSMHA
• CMHS must stop using the excuse that they can't find consumer/survivor input because we lack a national organization.
• Paolo needs to have a staff of at least two more people.
• Issues the Center and Paolo are working on should be reported in the CMHS consumer/survivor newsletter.
• CMHS should not think of the technical assistance centers as experts or spokespeople for mental health consumers/survivors.
• Attention should be given to honorariums and amenities provided to consultants so that there is equity of consumer/survivors with others.
• Regional meetings should be held, since regional issues (ie. Border State issues) often get lost in national context.
• More attention needs to be placed on language (e.g. we talk about assertive community treatment models and yet if consumer/survivors are assertive they are considered aggressive and put into quiet rooms).
• Need to define what technical assistance is available from the technical assistance centers.
• Need to define what is empowerment and disseminate that definition so that community providers understand what we are talking about.
• In order to get more consumer/survivors involved in RFP development and grant review, a manual could be developed on how to be effective in those forums. This would provide a base of knowledge so that consumers/survivors invited to participate in those processes are seen as competent and their participation as meaningful.
• CMHS meetings could be hosted at or in close proximity to jails, homeless shelters, community programs, hospitals etc. This would expose policy makers to consumer/survivors in those environments. It would also expose the staff of those institutions to the latest thinking and current research on topics.
• CMHS should produce a booklet or pamphlet on the jargon or alphabet soup that exists.
• CMHS needs to establish a technical assistance center in the west.

Organizational Reports on "Contributing to the Vision"

We need to be in more places besides CMHS. CMHS has hired some consumers/ survivors but not all Federal agencies have. Twenty-five states have now established offices of consumer affairs which can assist in the development and growth of Statewide consumer/survivor organizations. NASMHPD has established an official relationship with NACSMHA.

A Consumer Managed Care Network has been established and has held two teleconferences with 65 members and 25 States represented. One of the strategies of this network is to have a national conference planned by the network. By the Fall, there is hope to have regional representation. The aim of the conference will be to ensure consumer/survivor involvement in programs and processes of managed care.

People should not think that Altered States of the Arts is just fluff, frivolity and a talent show. We need to recognize Altered States' accomplishments and that it is part of both technical assistance centers grants. Howie the Harp, a founder of Altered States, stated that "Altered States is a hallucination come true." This is an inclusive group. Major accomplishments are the "Let Us Entertain You" workshops which are held in state hospitals, the Dare to Vision conference and a booklet on involuntary treatment.

NARPA does not believe in any form of forced treatment. The Center for Mental Health Services should cooperate in efforts to ban forced ECT. Persons should have the right to adopt or reject the medical model. CMHS should explore more acceptable alternatives to psychiatry.

The Clearinghouse does regular mailings including its publication called the KEY. Our main focus is to provide technical assistance. We have battled to maintain CSP for many years now. The Protection and Advocacy for Mentally Ill Individuals Program must be maintained at CMHS and not diluted

I am the co-coordinator of the Support Coalition International along with David Oaks who many of you may know as the editor of Dendron. We are now made up of over 30 groups including representation from South Africa, New Zealand and Canada. The Support Coalition is open to anyone who opposes forced treatment in psychiatry. We work aggressively against forced shock and are now working against the Violence Initiative.

This group was founded in 1993 and now comprises 28 administrators in offices of consumer affairs from around the country. If people are interested in more information, they should contact me and I will send them literature on it.

This is an attempt to articulate and communicate a number of concerns, issues and aspirations that surfaced in a discussion among members of the American Association of People of Color Mental Health Consumers held in December of 1992 in Philadelphia, PA. We recognize that a great stigma is attached to persons of non-white racial status. We need to address issues of empowerment and brother/sisterhood. In our discussions, the following issues have emerged. The current social, economic and political environment has created a powerful rethinking, revisiting and reforming of many of our social values, priorities and commitments. The history of social change suggests those changes being considered will benefit some and hurt others. We continue to assert that mental health consumers of color share a disproportionate risk of being adversely affected by the potential injustice from these changes. Conversely, we also assert that the genuine partnership with others in crafting approaches to these issues offer a great potential for universal benefit.

Our vision of enhancing collaboration would help to address the pressing issues of language barriers, physical barriers, public health care reform, migration, immigration, cultural barriers and welfare reform, knowledge generation, use of inhumane conditions within the criminal justice system, mental health services for under served populations, equal access to protection and advocacy services, mental health services resulting in excess morbidity, use of mental health treatment for social control, the dynamics of power differences in social policy development and others.

Because of the longstanding nature of many of these issues identified above, our Association sorely lacks the resources needed to address these matters. Therefore, we request any lawful assistance from any group, association or organization that is better positioned to guide funds for this purpose. We do request that any assistance offered, be provided in such a way that it does not threaten the integrity and self determination of our fledgling association. Specific types of assistance needed include: communication assistance; development support; travel and transportation support; technical assistance in the following areas: organizational skill development, collaboration, leadership skills development, and information and knowledge generation development.

Believes that there is a need to get more people to sit on boards of directors. There needs to be more attention paid to women's issues, restraint and recovery.

Mike Faenza sends his greetings. The National Mental Health Association is about promoting partnerships. We held a national consumer/survivor public policy forum right before our annual meeting. Identified issues will be addressed and followed up in future meetings. The National Mental Health Association wants to establish an office of consumer affairs at their office to focus on developing training and materials from a consumer perspective. The role of the National Mental Health Association is advocacy and public education with a focus on inclusion, bringing together consumer/survivors, family members and advocates.

There is some cause to be optimistic about NAMI. At the national level, consumers are working on the Board of Directors trying to bring their views to NAMI's board and its membership. They have just established a Consumer Outreach Coordinator to increase consumer/survivor membership, prepare materials on recovery, and provide staff support for the Consumer Council. NAMI hopes to add two to three consumers on their national board. The Illinois AMI consumer group. (AMI Cares) has developed materials on recovery and support. NAMI expects over 200 consumers at their national conference out of an estimated 2500 attendance with many consumers being on panels and presenting. The new Consumer Council bylaws now require consumer/survivor representatives to be elected at Statewide meetings rather than appointed by Statewide AMI presidents.

There are only two national centers doing research on client-run programs of which I represent one. The other center is in Michigan. Our mission is to generate knowledge about consumer-run services through research projects, specifically looking at the effectiveness of client run programs. We look to have an outcome study of services received from consumer operated services. Specific outcomes might include how persons feel about themselves, self-esteem, housing, employment and how they feel their lives are improved.

The Committee for Truth in Psychiatry is a national organization representing people who have received ECT. Our goal is to get informed consent policies established around ECT.. We are working on obtaining oral and written histories of shock survivors and establishing a model informed consent form. This group has been around for 10 years with no funding.

There are now over 330 groups across this country, and the world who make up the NDMDA. Our concerns are about access and quality of care. We believe if someone doesn't want care than that is their right. Our major activity is fostering support groups. We have just opened a governmental affairs office in Washington, D.C. and hope to be a major player inside the Beltway.

We must respect diversity and disagreement. Our interest is in getting people access to communication and support on the Internet. Through this media, we have instant communications and a level playing field.

This is a national group made up of consumers/survivors who serve on state mental health planning councils. The goals of NACSMHPC is to provide support for one another, share information and explore alternatives to institutional psychiatry. This is a new group, but already 43 states are represented.

The focus of the National Empowerment Center is empowerment and recovery. We are developing a plan to do more outreach to the West coast. Currently plans are underway for the Alternatives Conference in August 1995.

The Consumer/Survivor Research and Policy Workgroup is working to develop an infrastructure to support its activities. Two major activities are a contract with Darby Penny to develop a manual on managed care and consumer/survivor interface and one with Jean Campbell to further develop a national report card of mental health systems.

The D.C. Consumers League is a new organization that started as an outgrowth of District of Columbia Mayor Sharon Pratt Kelly bringing together some consumers and providers to talk about the mental health system.

A few years ago, Pennsylvania withdrew its membership in NAPAS because there were no consumers/survivors on the board. Today, they are doing better. Statewide P&A's appear to be doing better in regards to representation as well. NAPAS puts out excellent information reports and alerts on current mental health information, which I would be happy to fax to people.

The World Association of Electro Shock Survivors believes that ECT is harmful. We need to work on alternatives to shock to avoid people being injured.

The Well Mind Association is an all volunteer group that serves as a national resource on alternatives to mental illness biological treatment. We are especially interested in vitamins/allergies, chemical sensitivity and toxic reactions to psychiatric medications.

Additional Suggestions to CMHS

• Prior to the closing of this two day meeting, participants had the opportunity to provide final suggestions to the CMHS. These are:
• CMHS should provide funding for people to be on the Internet.
• CMHS should provide ongoing avenues for this type of input; we need to establish ways to have ongoing dialogues between consumers/survivors and the staff of CMHS.
• CMHS should consider in-service training for SAMHSA on Managed Care from the consumer/survivor perspective.
• CMHS should try and get people with visible disabilities and mental illness to do outreach in order to increase vocational services.
• CMHS should get input from other consumers/survivors and not just the people who attended this meeting. CMHS needs more regional input.
• CMHS should consider funding smaller, regional Alternatives conferences.
• CMHS should consider distributing the journal "Altered States of the Arts."
• CMHS should provide technical assistance to consumer/survivor groups to better understand various governmental policies, regulations and standards.
• CMHS needs to look more at children's issues and the needs of siblings.
• CMHS needs to look at developing ways for people with psychiatric disabilities to become federal employees in various governmental agencies around the country. especially people on SSI and/or SSDI.
• CMHS should simplify alphabet soup in order to facilitate education of consumers/ survivors and how information is disseminated. CMHS needs to develop a guide or book on definitions, (Medicaid waivers, Managed Care, etc.) Consumers need to know what these are. CMHS needs to explain what "outcome measures" are.
• We need to increase consumer/survivor presence at the National Institutes of Health and especially the National Institute of Mental Health (NIMH). NIMH has funded consumer/ survivor research projects and we need to remember this.

Closing Remarks:

Paolo del Vecchio thanked Dr. Arons for his openness and interest in having this type of a meeting.

Paolo also thanked Ann Marshall for facilitating the two day event. Paolo informed the participants that this was just the beginning process to look at ways CMHS can increase consumer/survivor input into the Center for Mental Health Services. Paolo stated that, "This is a shared responsibility. We need to have and maintain the value of Hope."

Dr. Arons officially closed this special meeting by thanking Paolo del Vecchio for his hard work in coordinating this event. Dr. Arons also thanked Natalie Reatig, Peggy Clark, and especially Jackie Parrish who made a special contribution in this area over the several years that she worked at CMHS. Dr. Arons thanked everyone for their participation and the willingness to share their time.

ATTENDEES AT THE JULY 1995
CENTER FOR MENTAL HEALTH SERVICES MEETING

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