If you want to know how the deinstitutionalization of mentally ill individuals as mandated by the Supreme Court has progressed, advocates suggest just thinking about the word itself. Deinstitutionalization has gone from a celebratory word to a pejorative term associated with crime and crisis.

Ten years after the landmark U.S. Supreme Court decision in Olmstead v. L.C. & E.W. concluded that long-term institutionalization of people with mental illness deemed capable of independent living violated their rights under the Americans With Disabilities Act, huge numbers of people continue to languish in such settings, while overall state funding for mental health care is dwindling.

Mental health advocates are marking the anniversary of the 1999 decision by calling attention to the minimal progress that has been made in moving people whom mental health clinicians deem capable, from institutional and other long-term-care facilities to community housing. Such a move—ordered by the high court—would not only improve the quality of life for many people with mental illness, say proponents of the ruling, but it would drastically lower the costs of care to public health systems. FIG1

"Olmstead has not had the impact it should have had for people with mental disabilities," said Robert Bernstein, Ph.D., executive director of the Judge David L. Bazelon Center for Mental Health Law. His comments came during a June press conference at which advocates released a report on the lack of progress implementing Olmstead.

The Bazelon Center report chronicled the extent to which states have ignored the Olmstead decision. In all, states have kept 527,725 men, women, and children in residential mental health facilities for a median of 869 days, as of 2006, according to records from the Department of Health and Human Services (HHS). Another 500,000 people with mental illnesses other than dementia are kept in nursing homes, and more are segregated in group homes or other "congregate settings," according to a June report in Health Affairs.

States continue to rely overwhelmingly on institutional care for people with mental illness because of long-standing federal Medicaid incentives that make it preferable to use such facilities over community-based and independent living options. Those practices have begun to change in some states but largely continue due to both inertia and opposition to change from organizations and professionals that financially benefit from the continued emphasis on institutional care, advocates said.

"There are vested financial interests in maintaining the status quo," Bernstein said, about private facilities and contractors who financially gain from the current emphasis on institutional care.

State officials have resisted transitioning people with mental illness out of institutions despite cost studies that showed potential savings from broader use of independent housing that comes with clinical support for residents.

A recent change in federal law to encourage compliance bars federal matching money to nursing homes for people who should not be placed in such care, such as those with nondementia-related mental illness. However, states have done a poor job enforcing this requirement, according to findings by the HHS inspector general. One result has been increasing reports of violence against the elderly in nursing homes by people with mental illness who should not have been placed in those facilities, said Chris Koyanagi, legislative director of the Bazelon Center.

The lack of significant movement of people with mental illness into community settings by state officials has been further complicated by the vastly increasing budget pressures during the ongoing recession. States have slashed their funding for mental health care from a high of $261.7 billion in 1955 to $30.9 billion in 2006, when adjusted for medical inflation and population, according to the National Association of State Mental Health Program Directors Research Institute.

In the face of these entrenched interests and budgetary challenges, substantial progress in moving people from institutional settings to community locations will require political leadership at the federal and state levels, said Koyanagi and other advocates.

At least some cost concerns voiced by state officials could be addressed by moving more people with mental illness from institutions to independent living that includes a range of continuing support services, according to mental health advocates. For instance, one study by Pathways to Housing found that the annual per-person cost to keep someone with mental illness in a state hospital in New York City was $175,000, while that person could receive continuing care and independent housing for $40,000.

Several speakers encouraged mental health advocates to urge members of Congress to include rehabilitation-services funding for people at risk for institutionalization in the health reform legislation they are formulating.

The version of health reform approved by the Senate Health, Education, Labor, and Pensions (HELP) Committee (see Congressional Panels Approve Health Care Reform Bills) includes many provisions of the Community Living Assistance Services and Supports, or CLASS, Act (S 697). That legislation would create a national, voluntary, disability-insurance program to provide—depending on the level of disability—nonmedical services and supports to allow the beneficiary to maintain his or her independence.

Other health reform measures under consideration in Congress would beef up Medicaid funding for community-based services for people with mental illness, according to advocates. However, since there is no assurance that the increased community care, Medicaid funding, and other beneficial measures for people with mental illness will be included in the final reform measure that Congress will approve, advocacy support is crucial, they maintained.

"We want Congress, as it looks at health care reform, to consider the needs of people with mental illness," Bernstein said.

Progress for people with mental illness who are languishing in institutional facilities may come from increased enforcement of the Olmstead provisions by the Department of Justice (DoJ), according to Ira Burnim, legal director of the Bazelon Center, who argued the Olmstead case. There have been some signs of increased interest in it at the DoJ, he said, including the department sending observers to recent trials at which Olmstead rights were an issue.

More information on the Bazelon Center's Olmstead report is posted at<www.bazelon.org/newsroom/2009/Olmstead_Call-to-Action.htm>.▪