Last in Line
Barriers to Community Integration of
Older Adults with Mental Illnesses and Recommendations for Change
This February 2003 publication looks at the persistent
segregation of older Americans with mental illnesses and provides a
prescription
for reform. The report's full executive summary appears below.
Older adults with mental illnesses remain segregated in
nursing homes and other isolating environments, even as other groups have
begun to gain full membership in the community. The Bazelon Center for
Mental Health Law, with support by the Retirement Research Foundation,
undertook a project to analyze the barriers that have led to the neglect
of older adults in states’ efforts to shift mental health services
to the community. The Center has conducted extensive work on issues related
to community integration for individuals with mental disabilities generally,
most recently in the context of the Supreme Court’s 1999 decision
in Olmstead v. L.C.1 While in
most states Olmstead has not yet produced tremendous progress, we hoped
to discover whether the unique needs of older adults with mental illnesses
pose particular challenges to creating community-based services for this
population, and to what extent states have been addressing those challenges
in their planning for community integration.
While it was not possible to study all 50 states in depth,
we chose to focus on five: Pennsylvania, Alabama, Illinois, Michigan and
Nevada. We chose these because of the variety they offer in geographic
location, population age, mental health and aging infrastructure, and
Olmstead planning efforts. The goal was twofold: 1) to identify the state
policies and practices that create barriers to community integration for
older adults with mental illnesses and the efforts that have been successful
in overcoming some of these barriers, and 2) to formulate recommendations
for change to reduce the number of older adults with mental illnesses
needlessly segregated in institutions of various types and facilitate
better (and, often, less costly) service models in community-integrating
settings.
We began with a survey questionnaire sent to mental health
and aging advocates, service providers, government officials and consumers
to determine what steps their states were taking to facilitate community
integration of individuals with disabilities, how they were addressing
particular issues that affect older adults with mental illnesses, what
factors they saw as the primary barriers to community integration for
this population, and what the state was doing to address those barriers.
We then conducted follow-up interviews with survey respondents and many
other individuals to whom we were directed as we proceeded. We visited
four Michigan, Illinois, Pennsylvania and Alabama to meet with interviewees
and observe settings for older adults with mental illnesses. We also reviewed
documents provided by interviewees, including long-term care studies,
legislative bills, testimony and geriatric mental health training materials
and manuals. Our final report focuses more on information from interviews
than from the survey, as the interviews yielded more detailed and comprehensive
information.
The Bazelon Center hopes to build on this project with state-based
efforts to promote community integration of older adults with mental illnesses.
With the relationships we developed through this project and the knowledge
we gained about specific policies and practices that hinder access to
community-based mental health services for older adults, we hope to work
with organizations in the states studied—or other states— on
strategies to modify some of these policies and practices and eliminate
barriers.
The project yielded many significant findings, described in detail in
the full report and a state-by-state addendum. We found that the overarching
barriers to community integration across all of the states we studied
were consistent with barriers noted in several recent national studies,
such as the Surgeon General’s 1999 report,2
an Administration on Aging report the same year,3
and a 2002 report by the Substance Abuse and Mental Health Services Administration.4
The principal barriers we found across all five states were:
- stigma among older adults about the receipt of mental health services;
- lack of knowledge about geriatric mental health issues on the part
of primary care physicians, mental health providers and senior service
providers;
- lack of coordination between aging and mental health agencies;
- unavailability of transportation to assist seniors in accessing services;
- unavailability of in-home mental health services;
- inadequacy of Medicaid and Medicare reimbursement schemes to finance
community-based mental health services for older adults;
- lack of housing;
- inadequacy of managed care coverage;
- the bias of public funding schemes favoring institutional care;
- lack of political will for reform;
- the limits of screening to prevent unnecessary confinement of individuals
with mental illness in nursing homes;
- bureaucratic stumbling-blocks;
- the exclusion of dementia from many state community mental health
programs; and
- delays in states’ Olmstead planning for community integration.
We also found policies and practices particular to one or
more of the states that have the effect of hindering development of community-based
services for older adults with mental illnesses. For example, the mental
health department in Pennsylvania excludes older adults with mental illnesses
in a “psychiatric transitional facility” from discharge to the
state’s community-based mental health programs; Alabama does not
permit Medicaid reimbursement for case management services provided by
both mental health and senior service providers, even though those case
management services secure very different types of services—all of
them important to older adults with mental illnesses; Illinois has directed
an enormous percentage of its long-term care resources to nursing facilities
rather than community-based services and funds services for a large number
of individuals in “institutions for mental diseases” that provide
few services to residents and generate little federal reimbursement; Michigan’s
state Medicaid program has implemented a policy that would convert the
bulk of the state’s community-based mental health services funded
by Medicaid into discretionary services; and Nevada has only one outreach
program targeting older adults with mental illnesses in the entire state.
In an addendum to the main report describing our findings
in each of the states, we make recommendations for modifying some of these
state policies and practices as part of efforts to promote community integration
and in hopes of spurring critical evaluations in all states about the
biases against community integration for older adults with mental illnesses
that are embedded in policies and practices guiding public healthcare
and reimbursement systems. The report concludes with a set of general
recommendations for:
- Outreach programs that target older adults with mental health needs.
- Coordination between mental health and aging systems.
- A public funding stream to assure that older adults with mental illness
are able to be served in the community and not be forced to enter a
nursing facility for lack of affordable community options.
- Training of primary care physicians in geriatric mental health issues.
- Cross-training of mental health and aging services agencies and providers.
- A centralized source of information on substantive geriatric mental
health issues and updated information about available resources in each
area.
- Inclusion of dementia in mental health programs.
- Redirection of funds from closure and consolidation of state hospitals.
Older adults with mental illnesses should not be pushed
to the end of the line for access to the community integration that is
their fundamental right.
Notes
1. Olmstead v. L.C., 527 U.S.
581 (1999), holding that unnecessarily institutionalizing individuals
with disabilities is a form of discrimination that may violate the Americans
with Disabilities Act.
2 Mental Health: A Report of the Surgeon General, Chapter
Five (1999), at http://www.surgeongeneral.gov/library/mentalhealth.
3 See http://www.aoa.gov/mh/report2001.
4 U.S. Department of Health and Human Services, Substance
Abuse and Mental Health Services Administration, Promoting Older Adult
Health: Aging Network Partnerships to Address Medication, Alcohol, and
Mental Health Problems (2002), http://www.ncoa.org/mem/promot_hlth.pdf.
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