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
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.
Left: Robert Bernstein, Ph.D., executive director of the Bazelon Center,
spoke on the 10th anniversary of the Supreme Court's Olmstead
decision to highlight the fact that the many people with mental illness who
continue to languish in institutional settings have yet to benefit from it.
Right: Ira Burnim, legal director of the Bazelon Center, noted that the
Department of Justice may take an increased interest in enforcing state
compliance with the Olmstead decision.
Credit: Bazelon Center
"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
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
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
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
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