In the first decade of the 20th century, Clifford Beers, a former mental patient and the founder of the Mental Health Association, articulated the vision which nearly 50 years later became the core mental health policy in the United States. His vision arose from his own dreadful experiences during the several years he spent in a psychiatric hospital and from the experiences he witnessed. When he was finally discharged, he decided to devote his life to humanizing the conditions in mental hospitals and to preventing the need for hospitalization by developing outpatient services and by preventing mental illness and its disabling consequences. He believed that many people were hospitalized unnecessarily because of stigma and ignorance and sought to build a grassroots organization through which myths could be dispelled and progressive public policies could be championed.
As we approach a new century, Beers' vision is still a driving force of public mental health policy. While some of his vision has been achieved, much is left to be done. Perhaps the best way to understand the need to continue to improve mental health policy is in an historical context.
Deinstitutionalization, the first wave of mental health, was a disaster for a great many people who were essentially abandoned in the community without the services and supports that they needed. Some, of course, were far better off outside of hospitals. Many, however, lived in terrible conditions and without adequate treatment or became the responsibility of their families, who simply refuse to let family members live in danger and squalor.
In the late 1970's, about 10 years after the most aggressive period of deinstitutionalization began, New York State instituted a community support policy. This policy shift resulted in a significant expansion of services in the community for people with serious and persistent mental illnesses including housing, outpatient services, acute inpatient services in general hospitals, crisis services, rehabilitation, and case management. Many people who would have been living either in State hospitals or in terrible conditions 20 years ago are now leading lives in the community which are far more satisfying than the lives they would have had without the Community Support Program.
However, there are a number of notable inadequacies with the current mental health system.
There are a substantial number of people with recurrent, serious mental illnesses who tend to reject traditional mental health services. Many end up in crisis and then experience long hospitalizations, which could be averted if relevant community services were available. An increasing number of them are now in jails and prisons, generally for minor offenses. A very few commit acts of violence which make the headlines that dominate public debate about mental health policy.
Most of the people with serious and persistent mental illnesses who are well served by the current mental health system have not achieved the quality of life they desire. Of particular importance is the fact that few of them are competitively employed.
Despite remarkable improvements in the effectiveness of treatment over the past twenty years and a dramatic shift in attitude among the best practitioners towards recipients of services and their families, there remain serious problems with the quality of care. Many providers are not adequately trained in new treatment methods and/or in the need for respect and humanity regarding people with serious mental illnesses and their families. In addition, recently there have been new revelations about inappropriate use of restraint and seclusion, raising new concerns about patient abuse.
Children and adolescents with serious emotional disturbances are vastly underserved and frequently inappropriately served because of lack of service capacity and failure to integrate child serving systems.
There are a number of additional seriously underserved populations including: people in jails or prisons; people with serious mental illnesses who also abuse chemicals (MICA); older adults with significant mental health problems; people with a history of trauma; people with personality disorders that result in volatility and self-destructiveness and there has never been an adequate support for families who provide a significant amount of care for their family members with mental illnesses.
Historically New York State has been the nation's leader in mental health policy and service. Currently, however, its policy is built on following the example of those states which have introduced managed care with high hopes that it will both reduce costs and improve care. Over the past five years, the experience of managed care has been, at best, mixed. In some states there may have been a modest improvement in the accessibility and flexibility of public mental health services, but in other states it has been a disaster. Nowhere has it been the promised panacea.
Because of a mix of political, clinical, and fiscal issues, New York has yet to introduce its managed care program for people with serious and persistent mental illnesses. Whether that program moves ahead or not, we hope that New York State comes to realize that managed care is, at best, a tool to advance the goals of mental health policy. It cannot itself be the core element of a mental health policy.
Instead of merely following the examples of other states, New York State should revive its historical commitment to be the nation's leader in mental health policy and service. Its policy should be "population-based" -- i.e. built on a foundation of empirically based knowledge of the needs of people with mental illnesses and on a determination to progressively improve the mental health system so as to meet these needs.
1. The core of NYS mental health policy should be a reaffirmation of the need for a comprehensive and integrated array of mental health services including crisis intervention, inpatient services, outpatient services, housing, and community supports such as rehabilitation and case management. Future program development should be guided by an empirically based needs assessment and multi-year planning process.
2. The highest immediate priority is to build the capacity of the mental health system to serve people with mental illnesses who are unserved, underserved or inappropriately served. This should include: rapid expansion of both supported and supervised housing for adults with serious and persistent mental illnesses, providing at least 3000 new units per year including, but not limited to the NY, NY initiative; new initiatives emphasizing outreach and individualized support service (e.g. ACT) designed to engage and serve people with serious and persistent mental illnesses who currently are not adequately served by the current mental health system especially: people who are mentally ill and abuse drugs or alcohol; people who are homeless; people who avoid mental health services; people who are mentally ill and involved with the criminal justice system; and people who are long term patients in State Hospitals.
There should be continued expansion of recipient self-help initiatives to improve quality of life including: vocational and social rehabilitation services stressing recovery and employment; improved living conditions and mental health services for people with mental illnesses in adult homes and nursing homes; A multi-year commitment to build NYS's capacity to provide mental health services for children and adolescents and to integrate child serving systems.
A multi-year commitment to provide adequate services for underserved populations, including: older adults with serious mental health problems; trauma survivors and people with personality disorders that result in volatility and self-destructiveness.
3. NYS should commit to a widespread family support initiative to assist families who are providing housing and other forms of care for their mentally ill family members.
4. NYS should take steps to enhance quality of care through oversight both of providers and of professional training programs. It should sponsor a variety of training programs stressing new treatment methods, practice guidelines, and respect for recipients and family members as partners in care. And it should reaffirm that abuse of patients is not tolerable.
5. NYS should commit to an initiative to overcome stigma and discrimination and to educate the public about mental illness.
6. NYS should continue to have a system that has a diverse array of service providers including voluntary mental health agencies, family organizations, recipient run organizations, as well as general, State, and proprietary hospitals. It is particularly important for the State to take proactive steps to determine the future role of State, local and freestanding psychiatric hospitals so as to reduce unnecessary inpatient services while protecting essential inpatient capacity.
7. NYS should reaffirm its commitment to mental health research.
8. New York State must make a financial commitment commensurate with a progressive mental health policy, including:
Reaffirm NYS's commitment to reinvestment of savings from reductions of State inpatient operations and institute a policy to reinvest the proceeds of sale of State hospital land in housing for people with serious mental illness.
Commit to maintain adequate financial support for core elements for the community mental health service system with routine adjustments for inflation and to assure a living wage.
Increased funding for: Housing, Aggressive community treatment including peer advocacy, Integrated MICA services, Child and Adolescent services, Services for older adults, Forensic services, Family support, Parity, Funding to serve the uninsured.
This is an edited version of Giselle Stolper's testimony before the MHANYS' Public Legislative Hearing held on October 21, 1999.