The Bazelon Center for Mental Health Law

For Immediate Release
Thursday, July 18, 2002

Contact: Christopher Burley
Tel: 202-467-5730 x 133
Email: leec@bazelon.org

Testimony By
Robert Bernstein, Ph.D., Executive Director
Judge David L. Bazelon Center for Mental Health Law
Before The President's New Freedom Commission On Mental Health

The President's New Freedom Commission on Mental Health A New Vision for Public Mental Health

Mr. Chairman, Commissioners, my name is Robert Bernstein. I am a psychologist and serve as executive director of the Judge David L. Bazelon Center for Mental Health Law. I appreciate this opportunity to present a view of the nation's delivery system for mental health services and supports from our perspective as advocates for the legal rights of mental health consumers—by which I mean children with psychiatric or emotional disorders and their families and adults and older adults who seek or use mental health services.

The Bazelon Center has a broad action agenda, focused ultimately on enabling people with mental illnesses to enjoy full membership in their communities. What we seek is not revolutionary; it is a mental health system that promotes recovery, health, dignity and self-sufficiency. Yet what we see today is a system widely characterized by neglect of consumers' needs. This neglect is documented in the Bazelon Center's booklet, Disintegrating Systems, previously supplied to the Commission.

Except for isolated models, today's public systems are far afield from the direction once envisioned for community mental health in this nation. For large numbers of people, the emphasis tends to be on suppression of symptoms by simply dispensing medication, compliance with such treatment, and avoidance of crisis and rehospitalization. Goals such as these reflect low expectations that dismiss the capacity of individuals who have been diagnosed with a mental illness to recover and take their place in their communities. Further, they assume that public systems lack the capacity to be helpful to these individuals.

The Bazelon Center is appalled, as I am sure you are, at the perverse outcomes of the neglect tolerated by such low expectations. For example, working parents in at least half the states face a terrible choice—to forego mental health treatment for a child with a serious emotional disturbance or to relinquish custody of the child to the state in order to access Medicaid services. Through the same lens, we see homelessness and increasing substance abuse among adults with mental illnesses, efforts to force people into outpatient treatment, consignment of older adults with mental illnesses or dementia to nursing homes, and the expanding criminalization of people with mental illnesses—often on charges directly related to their lack of access to mental health services and basic supports. These are examples of the ways consumers are punished for the failures of a stagnant and underfunded public system.

Because of inadequate or misdirected funding, people with mental illnesses face rationing of services and its negative consequences. Mental health systems assign priorities based on changing political factors, leaving consumer populations to jockey for position. Many consumers drop too low on the list to receive more than minimal attention, if any. Ironically, they tend to be those who have sought services voluntarily, early on.

Admittedly, addressing the needs of people with serious mental illnesses or emotional disorders is a complex matter, well beyond the capacity of mental health systems as currently constructed. Mental illness affects every aspect of an individual's life, but coordination among the various public systems that should meet their needs is rare and collaboration almost nonexistent. As a result, cost-shifting from one system to another is rampant. Yet in public systems other than mental health, such as education, housing and vocational rehabilitation, people with mental illnesses are automatically assigned low priority.

The mental health system should not accept these punishing outcomes, nor should it tolerate the dysfunctional business of rationing and cost-shifting. It should not promote the use of jails and prisons as service sites for people neglected by the mental health system. It should not rely on court-ordered interventions to compensate for its own failures. It should not focus on shelters and services for people on the street at the expense of collaboration with housing development and supportive programs that will enable them to rebuild their lives. It should treat co-occurring substance abuse and mental illness as the norm and not permit addiction-treatment providers to refuse to treat people with mental illnesses as "not yet ready for recovery."

Implementation of the Supreme Court's Olmstead decision, affirming the integration mandate of the Americans with Disabilities Act, affords an opportunity for mental health systems to focus on more ambitious—and more appropriate—goals. It is an opportunity to end reliance on board-and-care homes, nursing homes and similarly segregated arrangements and focus instead on the quality of consumers' lives in the community.

To take advantage of this opportunity, a number of changes are needed. Funding will need to follow the individual, rather than being tied to numbers of beds or program slots. Consumers must have a far greater role in defining services and supports, greater choice of voluntary services, and more control over how resources designed to help them are spent.

Community integration for people with mental illnesses became law more than a decade ago, in 1991, when federal regulations for the ADA were issued. But only now, under Olmstead, is it acknowledged as a mental health consumer's civil right. Discrimination against people with mental illnesses must end—in health and mental health services, housing, employment and, for children, education. This will lead to meaningful integration, which, in turn, will do more than anything else to reduce stigma.
Our nation's failure to realize this goal reflects not a lack of know-how, but rather the absence of political will. We believe the Commission has the opportunity to discern what went wrong and to change the direction of the debate. The Bazelon Center would like to work with you to address some of the major barriers to full integration:

• the present rationing of services and its discouraging effect on the development of voluntary services that better engage consumers and avert crises
• the increasing use of courts and other approaches to force consumer compliance as a substitute for requiring mental health systems to be responsible for offering services that consumers want and need;
• the common failure to include consumers—particularly those regarded as hard to serve—as partners in the planning and delivery of services; and
• the current practice of purchasing services rather than outcomes that reflect recovery.
  

As one approach, we offer a packet called A New Vision of Public Mental Health. Its centerpiece is a model law creating an entitlement to voluntary, recovery-oriented mental health services and supports. This model is just one tool that may serve to refocus the debate and revive our common commitment to a consumer-centered, community-based mental health system. We look forward to working with you to develop additional policy recommendations for fulfilling that commitment.

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The Bazelon Center for Mental Health Law is the leading national legal-advocacy organization representing people with mental illness or mental retardation. Through precedent-setting litigation and in the public-policy arena, the center works to define and uphold the rights of adults and children who rely on public services and ensure them equal access to health and mental health care, education, housing and employment. The nonprofit organization is supported primarily by private foundations and individuals.