The National Summit of Mental Health Consumers and Survivors, held in Portland, Oregon, from August 26 through 29, 1999, was organized by the National Mental Health Consumers' Self-Help Clearinghouse with the help of the Oregon Office of Consumer Technical Assistance, and co-sponsored by consumer/survivor groups from around the country.
Its goal was to develop consensus around the issues of greatest concern to consumers and survivors and create action plans for future work. The unifying principle was the construction of a platform from which the movement can influence the national debate. The Summit was organized in response to, and with the participation of, consumers/ survivors across the United States. Many had expressed, via the Internet, an increasing demand for such an event in order to help create a unified national voice, and they helped hammer out the event's framework, including selecting the 12 "planks."
Four hundred fifty people from across the country attended, and many praised the working atmosphere, the successful consensus-building, and "the knowledge, the wisdom, and the care with which a room full of strangers came together and created an action plan," in the words of one plank facilitator. One participant called it "my first positive experience with consensus building in 50 years."
Attendees played an active part in developing one or more of the planks, on the topics of Advocacy, Organizing, Force and Coercion, Financing, Alternative Services, Recovery, Stigma, Community Support Systems, Research, Forensic Issues, Multicultural Issues, and Social Accountability.
Goals / Objectives: To find common ground on several major issues regarding financing:
* Managed care
* Health care reform: the issue of parity and how it affects mental health consumers and their treatment
* Consumer-run alternatives
This report grew out of the five working sessions. These sessions focused on the issues (phrased as questions) listed below. During several of the working sessions, the participants brainstormed ideas and then voted on their top five choices.
What does recovery mean to you?
What are the values that are important to recovery?
What are the principles that are important to recovery?
What are our personal barriers to recovery?
What are the barriers that the system places between us and recovery?
What are our top priorities for services necessary to the recovery process?
What are our top priorities for supports necessary to the recovery process?
What actions should we as a group take to promote the recovery vision?
What is the role and function of these services? Are they to be viewed as an integral and essential part of the range of service options, including traditional mental health services, or are they to be seen as an alternative to traditional care?
Questions to think about:What are our common goals? How can alternatives help?
Examples of alternative services (not a comprehensive list):
1. Peer counseling
2. Employment assistance
3. Drop-in centers
4. Wilderness camping
5. Housing assistance
6. Holistic medicine
7. Herbal medicine
The consumers' and survivors' ("clients'") movement is gradually transitioning from its habituation to a bitter struggle for empowerment, towards sensitization to issues of respect for a person's way of being. We must pay more and more attention to issues of accountability to client values, to nurturing and maturing the insight that represents the creative side of our involvement with madness.
1. Incorporate social accountability as a topic in training workshops.
2. Support and strengthen the role of the client values in the client culture.
The clients' movement has an endemic difficulty with strained human relations and the problems of personal interaction associated with irrationality. We must work with people who connect with our values, to address trauma directly: we can work for new social relations around madness, towards a society truly free of abuse, discrimination, hypocrisy, and ignorance.
3. Construct reasonable ways to distinguish controversial activity from "dissing" (disrespectful activity).
4. Educate society about the nature of madness.
- The participants of the Forensics Plank spent two days discussing issues pertaining to all aspects of mental health and criminal justice, including:
- Methods for prevention of mental health consumer/survivor involvement in the criminal justice system to begin with.
- Ideal standards for police interaction with mental health consumer/survivors.
- Ideal standards for incarceration in hospital and jail/prison settings for mental health consumer/survivors who have committed misdemeanor or felony crimes.
- Ideal post-incarceration systems and resources for mental health consumer/survivors.
The group reached consensus around a utopian system for forensics issues nationwide.
Out of that utopian system, the group reached consensus around aspects that we can realistically and foreseeably attain. We then created plans of action around each of those individual aspects.
The group decided to consider the subject of force and coercion as it applied to several specific areas rather than as a broad issue.
1. Expansion of forced treatment, including involuntary outpatient commitment
2. Electroshock (ECT)
3. Advance Directives
4. Forced treatment
5. Rights protection and confidentiality
6. Seclusion and restraint
- Developed ground rules
- Brainstormed barriers to advocacy (everyone participated, shared ideas)
- Plank participants took turns as facilitators of each working session, to foster leadership skills and engagement in process and outcome
- Organized barriers into eight categories, and from there into three main categories, with specific needs identified in response to the barriers and then prioritized
- Action steps were identified to overcome barriers and meet consumer needs
The group decided to use its sessions to brainstorm in order to try to reflect the thinking that people might run into when forming an organization. What follows is the notes from these brainstorming sessions.
Eight major points of concensus addressing issues of importance to persons from diverse backgrounds.
The working sessions came to consensus on important issues via a brainstorming process whereby everyone had the opportunity to express his or her concerns as issues to be examined. Once everyone had a chance to speak, the group combined similar issues from the flip chart and prioritized the most important ones. From this information, the group collectively designed a mission statement, prioritized issues, and formed various principles for community support systems.
Panelists from the University of Chicago shared information that raised awareness about the fact that internalized stigma, stigma that one holds against oneself once diagnosed, is just as damaging as external stigma, the way the world looks upon and judges those diagnosed as a group.
Participants were eager to identify ways in which to address both internal and external stigma. Numerous action steps were identified, and were categorized as addressing either internal or external stigma. It is important to note that there was not overall agreement on all of these methods. Additionally, some ways were identified as courses that could be taken to implement the action steps. Finally, the group came to consensus on ten action steps that are recommended initially to move forward in the fight against stigma.
Two major themes are:
1. Involvement of consumer/survivors as research partners
2. Protection of research participants
Consensus statements and recommended actions are recorded
The Summit, to be held August 26-29, 1999 in Portland, Oregon, is fast approaching. The background papers have been developed in conjunction with the facilitators for their respective sessions. The purpose of these papers is to provide a little history and help kick off the discussion on the various issues. It is our hope that people, through discussion and dialogue, will use these papers to help them develop a consensus statement and an action agenda at the meeting in Portland. Again, these papers are for background purposes only. They are intended as tools to stimulate thought and discussion.
Over the last 30 years, consumers/survivors have spoken out strongly,both for their own individual rights and to effect systems change. However, many barriers to advocacy still exist, and there is an enormous need for advocacy education along with ongoing support to consumers/survivors to ensure that a knowledgeable, strong, visible and vocal grassroots movement is built.
There is no national voice of mental health consumers and survivors, and little or no consistent representation of the grassroots movement in Washington. As a result, the movement has a limited impact on mental health policy at the national level.
Perhaps the most controversial and divisive issue in the mental health community, including among family groups, providers, consumers/survivors, and citizen advocacy groups, is whether people diagnosed with mental illness should be treated, or even held in "custodial" care, against their will.
In the last decade, managed care has become central to the physical and behavioral health care delivery system in the United States. While there is a great deal of skepticism as to its merits, the key issue for consumers/survivors to resolve is how to intervene within the context of managed care principles, which emphasize cost-cutting and centralized decision-making, to achieve more consumer-responsive mental health services, including more accountability, freedom of choice and consumer control.
Alternative services, also known as peer-run or self-help services, have traditionally been developed, implemented and operated by individuals who themselves have received mental health services from the public or private sector.
What is recovery? And what are we recovering from? What are the values, principles, services and supports that are needed in a recovery vision? What are the tasks or activities that must be accomplished at the national, state and local levels to move our system to a recovery vision?
Enormous damage has been done by the stigma of mental illness. Some people are unwilling to seek treatment because of it; others are denied employment or housing because they have a psychiatric diagnosis; and many feel great shame because they have been labeled with a mental illness, which has a terrible impact on their lives.
The concept of community support systems began in the 1960s, when President Kennedy enacted the Community Mental Health Center Act. Over the years, many authors, researchers, and advocates have expounded on various community support system models. Some have developed flow charts, pie graphs, and even wheels to better illustrate community supports and how they tie into a network of overall care.
There has been scant research on peer-run alternatives, which has hindered the acceptance of such programs by the traditional mental health community. This situation has also limited the capacity of peer-run programs to generate funding through grants and direct appropriations.
As state hospitals are being downsized or closed, the conventional wisdom is that jails and prisons have taken their place. It is clear that people with mental illness are over-represented there. According to the National GAINS Center for People with Co-Occurring Disorders in the Criminal Justice Systemhttp://www.prainc.com, the rates of mental health disorders are four times higher among prisoners than in the general population.
In order to treat someone effectively, mental health service providers must recognize, respect and take into account the person's ethnicity and culture. Failure by mental health professionals to be sensitive to communication styles, religious beliefs, and familial relationships that are different from those in their own culture can result in misdiagnosis as well as practices destructive of individual and family identity.