Public Education & Policy :: Writings and Presentations

Testimony to The New Freedom Commission on Mental Health

July 18 by Sally Zinman

Thank you for this opportunity for people with psychiatric disabilities to testify. There are thousands of us who have organized into a consumer/survivor social change movement. I am one voice. Although I am the Executive Director of the California Network of Mental Health Clients CNMHC, the formal statewide advocacy voice of and for clients in California with 1400 individual members, and affiliate chapters, I see myself more as an advocate for the last 25 years in this social change movement. This social change movement was and is driven by core values. I suggest that you consider these core values as guidelines as you develop ways to enable people with psychiatric disabilities to live, work, learn and participate fully in their communities.

Background

The mental health consumer/survivor movement began almost thirty (30) years ago, perhaps not coincidentally, at the time of the beginning of deinstitutionaliztion. Former mental patients began to meet together in groups without psychiatric professionals. These former patients shared their feelings of anger at their abusive treatment and hope for independent living. They began organizing to fight for their rights and to provide support for each other. A new civil rights movement began. Initially, this social change movement concentrated on direct political action and organized in autonomous, grassroots groups, connected only by one newsletter and once a year unfounded Conferences, in campgrounds and universities. In time, as our activities grew, we sought and received funding, mainstreamed so as to reach the millions of mental health consumers who knew nothing about empowerment, and centralized, such as beginning state wide organizations. Today, there are self-help, mutual support groups throughout the country, statewide client advocacy organizations in the majority of states, training Conferences such as the annual Alternatives Conference and countless county and state consumer conferences, national technical assistance centers, the beginning of research by clients about self help and mutual support initiatives, substantive client involvement in policy making and program development and implementation, clients as providers in the mental health system and at management levels, an advance in rights protections and proliferation of lawyers and others protecting our rights. From experiencing oppression we moved to separatist empowerment groups and then to reentering society as equal partners working for social change - often literally reentering the very place in which we were hospitalized or treated.

Core Values

Throughout all of these changes, our basic principles have remained the same, a clear thread from then to now.

Choice and self-determination in treatment.

Involuntary commitment and forced treatment were and still are considered basic issues of human rights. Today at a recent national consumer Conference, consumers/survivors unanimously approved a Core Value from the National Council on Disability report, From Privileges to Rights. "Laws that allow the use of involuntary treatments such as forced drugging and inpatient and outpatient commitment should be viewed as inherently suspect, because they are incompatible with the principle of self-determination. Public policy needs to move in the direction of a totally voluntary community-based mental health system that safeguards human dignity and respects individual autonomy."

In a research study, the Well Being Project, produced by the California Department of Mental Health, 55% of clients interviewed who had experienced forced treatment reported that fear of forced treatment caused them to avoid all treatment for psychological and emotional problems. "Non-compliance" can be the result of forced treatment; more forced treatment is not a solution. Recovery and helping relationships can not exist in an environment of coercion. The Little Hoover Commission, an independent state oversight agency in California, in a recent mental health report, Being There: Making a Commitment to Mental Health, stated, "Inadequate access to voluntary care does not warrant the use of involuntary care." This echoes the Surgeon General' comments, in Mental Health: A Report of the Surgeon General. "Almost all agree that coercion should not be a substitute for effective care that is sought voluntarily. One point is clear: the need for coercion would be reduced significantly when adequate services are readily accessible to individuals with severe mental disorders who pose a threat of danger to themselves or others."

These reputable reports echo the client voice. Despite these reports and the experiential wisdom of clients who know what works, there is an assault on our rights and recovery that has been raging throughout the country for the last several years: to increase forced treatment through widening the criteria for commitment to a perceived need for treatment, increasing in hospital detention time, initiating involuntary outpatient commitment and decreasing procedural safeguards.

The need for non-harmful, respectful mental health services that do not re traumatize.

In an article entitled, The Third Barrier: People with Psychiatric Disabilities Complete the Surgeon General's Report, Vicki W. Smith describes the physical (e.g. restraints and seclusion) and/or psychological abuse that people can experience in the mental health system as a third barrier to receiving mental health services, in addition to stigma and accessing or paying for services. People turn away from services that are harmful.

The need for social and rehabilitative community mental health services that address the real life needs of persons with psychiatric disabilities - affordable housing, income supports, jobs, friends, substance abuse issues.

We are not reducible to biological entities or a diagnosis; a pill, although helpful to many people, is not a magic bullet that can address these barriers to full community integration and social role.

Deinstitutionalization did not fail; it was never completed. Community services were never funded. Many mental health services rely on medication as an exclusive response. On the other hand, what clients want and need are services that deal with the whole person. In a survey conducted by the CNMHC, when asked "How does a competent mental health system provide services that are sensitive to client culture", clients overwhelmingly responded, "Deal with quality of life issues - housing, employment", "See the whole person". The idea that people diagnosed with mental illness can fully recover and live full productive lives has been a long held belief of the client movement. Recently, this concept is being adopted by many mental health administrators, policy makers and providers. It is a concept supported by recent research. Ten worldwide long term studies investigating the assumption of downward course have consistently found that half to two thirds of patients significantly improved or recovered. In a study by Dr. Coutenay Harding averaging approximately 32 years of deinstitutionalized patients from the backwards of Vermont State Hospital who had been given a model rehabilitation program, 62 to 68% achieved significant improvement or recovery across multiple domains of functioning. Clearly, medication is not enough; additional services such as housing, vocational training and employment, income maintenance, medical care, substance abuse services and rehabilitation are essential to recovery.

In California, an innovative voluntary outreach program was initiated 3 years ago, the "AB 34" programs, integrated services offered in a client friendly and non threatening way primarily to homeless persons, parolees and probationers with psychiatric disabilities The programs have engaged 84% of the people who have been contacted, people who are generally regarded to be hard to serve and resistant to treatment. The reductions in hospitalization, incarceration and homelesssness are dramatic as well as the cost savings, or cost avoidance.

Voluntary services that address the needs of the whole person and are based on a belief in recovery redeem lives and save dollars.

The need for client-run (peer) programs and mutual support groups-programs run totally by the recipients of the services - as well as clients as providers within more traditional mental health programs.

Self-help services are high among the kinds of services preferred by clients. This is a genre that emerged from the activism of clients over the past thirty years. From a seedling idea in the minds of clients, client-run programs, in the form of drop-in centers, housing services, crisis teams, advocacy projects to simple support groups have mushroomed around the country and are considered a necessary part of any community mental health continuum of care. The underlying philosophy of peer support is that the best helpers are those who have experienced similar problems. In client-run programs, people with psychiatric disabilities see others like themselves in positions of responsibility, as role modes, and thus have more confidence in themselves. They are places to which people who will not use any other mental health services will come, because they are safe among their peers. Client-run programs certainly represent best practices of today. However, although proven highly effective, these programs are very under funded in proportion to the funding of other programs and under researched.

The need for our involvement in all decision-making of the mental health system as it directly affects our lives, on every level of policy making and program monitoring. Nothing About Us, Without Us.

The client movement has come far from the days that it stood outside the rooms where decision-making was occurring with pickets demanding a seat at the table. Clients in most states are sitting at the table now. In fact, more and more clients are reentering the mental health system as providers. By working within the mental health system, clients are finding another way of being change agents. Bringing the peer expertise to the mental health system can only make the system more responsive to client wishes.

I hope that the New Freedom Commission on Mental Health as it conducts hearings throughout the country will either have a consumer on every panel - true integration - or have a consumer panel at each of these sites. In this way, the Commission will witness the breath and spirit and contributions of clients throughout the country.

The need to end stereotyping and discrimination of people with psychiatric disabilities.

The myth of the violent mental patient and the myth of lack of insight/competency, although not supported by research, are part and parcel of the public's perception of us. These stereotypes interfere with our day to day ability to integrate into the mainstream society and deprive us of our dignity. Any exploitation of these stereotypes, for any reason, is condemnable.

It is within the context of these values that statewide and local client-run advocacy groups emerged and are emerging. Today there are thousands of self help and other initiatives, all of which have sprung from and are part of this civil rights movement.

What We Can Do For You

As I became involved with this social change movement 25 years ago, my main purpose was to try to change the system so that others would not have to experience what I had. In the language of the day, it was to liberate others. I soon realized, that what I and my colleagues were also doing was "liberating" ourselves, empowering ourselves. We recreated ourselves, individually and as a group. Some time later I realized that we were also "liberating" a system, making the system a better place for all of us - providers, clients, family members. I ask you to support this consumer movement and all of its efforts not only for what you can do for us, but what we are doing for you, what we are bringing to the mental health system. "Consumer organizations have had measurable impact on mental health services, legislation and research." (Mental Health: A Report of the Surgeon General.)