Testimony to California Little Hoover Commission
September 23, 1999
By Sally Zinman, Executive Director, California Network of Mental Health Clients
The California Network of Mental Health Clients (CNMHC) is part of a mental health consumer/survivor movement that began almost thirty (30) years ago, perhaps not coincidentally, at the time of the beginning of deinstitutionaliztion and the tightening of criteria for involuntary treatment. 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. Basic principles of this movement included the following:
· Choice and self-determination in treatment. Involuntary treatment and forced treatment became basic issues of human rights. · The need for holistic community mental health services that addressed the real life needs of persons in addition to "medical" needs -- housing, income supports, jobs, friends, drug & alcohol problems. We were not reducible to biological entities.
· The need for client involvement in all decision-making processes of the mental health system as it directly affects the lives of client, on every level of policy making and program monitoring. · The need for client-run (peer) alternatives to the mental health system-programs run totally by the recipients of the services.
It is within this context that statewide and local client-run advocacy groups, such as the CNMHC, (the first state wide client organization in the nation) emerged. Today there are thousands of client-run (also known as self-help) initiatives, all of which have sprung from and are part of this civil rights movement. We have been called "the last minority."
Lack of Voluntary Services to Meet Needs of Mental Health Clients
There has never been an increase in mental health funding since deinstitutionalization occurred more than 30 years ago. Mental health services are grossly under funded. Deinstitutionalization did not fail; it was never completed. Community services were never funded. Mental health services also 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 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 function including loss of schizophrenic symptomology, increase in work, social relationships and self care. When the Vermont group was compared to desintitutionalized patients from Augusta State Hospital in Maine who did not receive rehabilitation services, the Maine's did significantly less well than the Vermonters. 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. Except for some model programs, holistic services based on a recovery model are not available. The current mental health system is based on a maintenance model of mental health care: "Once a schizophrenic, always a schizophrenic", "Patients must be on medication their entire lives." It is a hopeless prognosis which, because of its hopelessness, becomes self-fulfilling.
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 models, 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 feel 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. If voluntary services of the nature that clients wanted and needed were available and assessable, the concept of involuntary treatment would be obsolete. Clients are being held responsible for being noncompliant to non-existing services.
The quickest way to access a public psychiatric hospital is to be forcibly committed. There is no room for voluntary admittees. There are countless stories of mental health clients seeking voluntary services and being turned away, only to be returned involuntarily because their emotional crisis worsened. The mental health system encourages forced treatment. However, 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. Noncompliance is the result of forced treatment; more forced treatment is not a solution. Recovery and therapeutic relationships cannot exist in an environment of coercion. In 1997, the Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Administration, U.S. Department of Health and Human Services sponsored a meeting on Involuntary Intervention and Coerced Treatment of People with Mental Health Disorders. The CMHS expressed as its purpose for convening the meeting, "By definition, involuntary interventions and coercive practices interfere with the enjoyment of freedom and liberty by people with mental illnesses and CMHS has an interest in reducing the need for these practices in the delivery of mental health care nation wide."
Currently, there is a trend in the country to expand forced treatment, including involuntary outpatient commitment. Proposed changes to the law in California include widening the criteria for commitment to the perceived need for treatment, increasing in-hospital detention time, initiating outpatient involuntary commitment and decreasing procedural safeguards.
· Changing the LPS Act is unwarranted because the current commitment criteria are adequate and provide necessary safeguards of individual liberties. In 1998, in Los Angeles County alone 43,000 people were involuntarily committed on 72 hour holds; 20,000 were held involuntarily for 14 days. This represents an overall increase in forced treatment over previous years. Clearly, current commitment laws are adequate.
· Proponents of the expansion of forced treatment have conducted a campaign to link mental illness with violence, promoting the public's stereotyping of people with mental disabilities as violent and, thus, increasing forced treatment as a public safety measure. Studies refute this conclusion. The MacArthur Violence Risk Assessment Study found that "the prevalence of violence among people who have been discharged from a hospital and who do not have symptoms of substance abuse is about the same as the prevalence of violence among other people living in their communities who do not have symptoms of substance abuse."
· Proponents of the expansion of forced treatment assert that persons with mental disabilities are incapable of making decisions and have no insight into their condition. This is far from the truth. According to the MacArthur Treatment Competence Study, "Most patients hospitalized with serious mental illness have abilities similar to persons without mental illness for making treatment decisions. Taken by itself, mental illness does not invariably impair decision making capacities."
· Proponents of increasing forced treatment argue that there are new wonder drugs that provide safe and effective treatment for people diagnosed with mental illness. In fact, reports show that medications have not been shown to be any more effective than individual Freudian therapy in the long run. For acute treatment, neuroleptics may help one out of three patients delay a psychotic relapse. But for the other two out of three persons, the drugs do not appear to play a role. (From a speech by David Cohen, PhD., noted expert on psychiatric drugs.) In addition, new studies indicate that there may be harmful side effects with the new wonder drugs as well.
· The most recent study of outpatient commitment, Research Study of the New York City Involuntary Outpatient Commitment Pilot Program, found that, when comparing a control group to persons court ordered to outpatient commitment, there was no difference in any qualitative or quantitative outcomes. What made a positive difference with both the court ordered and non court ordered groups was the enhanced community services offered to both. An array of voluntary services of a kind that clients want and need are the answer, not more forced treatment.
Nothing About Us, Without Us
The consumers/survivors/clients of the nation have a saying, "Nothing About Us, Without Us". The California mental health system has to be commended for its involvement of mental health clients in policy making, monitoring and review of mental health services, and all other decision-making processes that affect mental health clients. 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 California 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. However, problems remain. It is easier to mandate representation than to change attitudes. In the survey of California clients previously referred to, clients repeatedly described professionals as being condescending and stereotyping in their interactions with clients.
· Client volunteers report experiencing discrimination on many of the committees on which they sit. Their views are invalidated and they are patronized. They are not held accountable to the same standards as other committee members. They feel they are used as tokens, and not part of the substantive work.
· Although clients have made strides in gaining employment in the mental health system, their numbers are still too few and their positions are generally peer counselors, with too few in management and middle and upper level positions.
Client providers also experience the same discrimination from their coworkers as do client volunteers on committees.
The mental health system is experiencing two contradictory trends. On the one hand, the California mental health system has grown immensely in supporting client empowerment, more recently, endorsing the concept of recovery as a goal of the system. More and more clients are employed in the mental health system and sitting on boards and committees. More and more funded client-run group/programs are developing. On the other hand, the client community is confronting the biggest threat to our autonomy and empowerment in the last thirty years in the guise of LPS reform - expanding forced treatment, including involuntary outpatient commitment. This trend would set back the client movement, and by extension the emerging client friendly mental health system thirty(30) years.