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The Olmstead Decision The Olmstead Decision
The
Olmstead Decision: Consumer Rights to and Opportunities
for
Nursing Home Alternatives
Hollis
Turnham, Esquire
National
Long Term Care Ombudsman Resource Center
March
2001
Supported
by the U.S. Administration on Aging
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In its landmark decision of June 1999, Olmstead
vs. L.C. and E. W., the United States Supreme Court ruled that the Americans
with Disabilities Act (ADA) grants consumers new rights to live in something
other than an institution when health or supportive services are needed.
The decision applies to all governmental-funded programs and to all
people with disabilities, without regard to age or the kind of disability.
And yet, the decision also clearly puts some undefined financial
limitations on the responsibilities of states to build and fund
non-institutional alternatives. The
Olmstead decision and resulting guidance from the Department of
Health and Human Services (DHHS) construct both a federal legal foundation for
nursing home alternatives and a process for the creation of the augmented
non-institutional services.
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As a result, Long Term Care Ombudsman programs (LTCOP) have new tools to respond to the most frequent complaint of
nursing home residents and their families, "I
do not want to be here. I want to
go home." This short paper is an
introduction to the decision and its impact on the rights and options of long
term care consumers and how LTCOPs can respond to and maximize this opportunity.
Key topics addressed in this paper are:
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- The Supreme Court Decision
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- Federal Guidance to the
States
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- Olmstead and Ombudsman
Program Services
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The
Olmstead Supreme Court Decision
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L.C. and E.W. are both young developmentally disabled women. In 1995, both were
being treated in a state psychiatric hospital even though both young women and
their treating physicians said that a community-based setting would be better.
The women sued the state of Georgia claiming that the state was violating
Title II of the federal ADA that covers "public
services furnished by governmental entities."
ADA sections 12131-12165. These
provisions of the ADA provide that a disabled person, who is otherwise
qualified, may not be denied any public benefit, service, or program or
discriminated against because of the disability. This
language applies to the full range of state health, supportive services,
welfare, and housing programs.
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The plaintiffs found very strongly worded Congressional
findings that introduced the substantive provisions of the ADA.
In enacting the ADA, Congress determined, in part, that
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(2)
historically, society has tended to isolate and segregate individuals with
disabilities, and despite some improvements, such forms of discrimination
against individuals with disabilities continue to be a serious and pervasive
social problem;
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(3)
discrimination against individuals with disabilities persists in such critical
areas as ... institutionalization ...;
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(4) individuals
with disabilities continually encounter various forms of discrimination,
including outright intentional exclusion, .
. . failure to make modifications to existing facilities and practices,
. . . [and] segregation. ADA
section 12101(a)(2), (3), (5).
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As instructed by Congress, the Department of Justice (DOJ) had issued ADA regulations in 1992.
Guided by these congressional findings, the ADA regulations instruct all
governmental entities to "administer services, programs, and
activities in the most integrated setting appropriate to the needs of qualified
individuals with disabilities." 28
CFR 35.130(d). When read with the
Congressional findings equating discrimination and institutionalization, this
regulation clearly calls on governmental programs, particularly Medicaid, to
offer nursing home alternatives.
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In a 6-3 decision, the U.S. Supreme Court sided with the disabled women and said that unjustified placement or retention
of persons in institutions, severely limiting their exposure to the outside
community, constitutes a form of discrimination based on disability prohibited
by Title II of the ADA.
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But, the ADA's
provisions are not unrestricted, according to DOJ regulations and the Supreme
Court. Modifications to
governmental policies, practices, or procedures are not required by the ADA if
such modifications would fundamentally alter
the nature of the service, program, or activity. 28 CFR 35.130(b)(7). To
help define or find a fundamental alteration, the Court orders the lower courts
to "consider,
in view of the resources available to the State, not only the cost of providing
community-based care to the litigants, but also the range of services the State
provides others with mental disabilities, and the State’s obligation to mete
out those services equitably."
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Recognizing the complexity and difficulties of redesigning health delivery systems, five of the justices also gave the
states time to adapt and build their programs away from discriminatory
institutional bases.
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To maintain a range of facilities and to administer services with an even hand, the
State must have more leeway that the court below understood the
fundamental-alteration defense to allow. If,
for example, the State were to demonstrate that it had a
comprehensive, effectively working plan
for placing qualified persons with
mental disabilities in less restrictive settings, and waiting
list that moved at a reasonable
pace not controlled by the State’s endeavors to keep its institutions fully
populated, the reasonable-modifications standard would be met. (Emphasis
added.) Olmstead opinion at page 9.
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Federal guidance to the
States
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The federal DHHS has made implementation of the Olmstead decision a major policy
initiative. An ad hoc workgroup
crossing DHHS divisions has been created. Two
DHHS divisions have extensive Olmstead
web pages.
Seizing the Supreme Court’s
language for a state plan as satisfying the reasonable modification language,
DHHS Secretary Donna Shalala wrote to each governor outlining the federal
department’s goals and abilities to help the states.
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Our
country’s progress . . . reflects a shared belief that no person should have
to live in a nursing home or other institution if he or she can live in his or
her community. The recent Supreme Court decision in Olmstead v. L.C.
affirms this shared value, by finding that unnecessary institutionalization of
individuals with disabilities is discrimination under the Americans with
Disabilities Act (ADA). In the decision, the Court explained that
a State may be able to meet its obligation under the ADA by having
comprehensive, effectively working plans ensuring that individuals with
disabilities receive services in the most integrated setting appropriate to
their needs.
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We encourage you to develop and
implement such plans, and to involve individuals with disabilities and other
stakeholders in the process of design and implementation. This Department
stands ready to assist you in these efforts.
(Emphasis added.)
January 14, 2000, letter from Secretary Shalala to each state Governor.
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On the same day, the Health Care Financing Administration (HCFA) and the
Office of Civil Rights (OCR) within DHHS sent letters to state Medicaid
Directors.
The letter again calls on the federal and state governments to work
together to enable individuals with disabilities to live in the most integrated
setting appropriate to their needs. The
letters suggested framework re-enforces several points:
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A
state with a comprehensive, effectively working plan for placing qualified
persons with disabilities in less restrictive settings, and a waiting list
that moves at a reasonable pace not controlled by the State’s endeavors to
keep its institutions fully populated will likely be able to demonstrate
compliance with Title II of the ADA.
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The
OCR within DHHS will be evaluating state efforts to comply with the ADA and
the Olmstead decision. OCR’s
work will be in both compliance reviews and responsive to any individual
complaints filed with the agency about the failure of the state to provide
services in the most integrated setting.
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A state
will likely be seen in ADA compliance if it is developing a plan to create more
community-based options.
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In
addition to planning for increased community services, states must also be
responsive to institutionalized individuals whom request their situations be
reviewed to determine if a community setting is appropriate.
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One clear message sent in the HCFA/OCR January letter is that the
best planning process within a state actively involve(s) people with
disabilities, and where appropriate, their family members or representatives, in
design, development, and implementation.
Through an Initial Technical Assistance Recommendation attachment to the
January 14th letter, HCFA and OCR give specific, detailed principles
and guidance to the states on how to plan for community-based services in a most
integrated setting.
The six principles outlined by DHHS include:
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Comprehensive,
effectively working plan(s) that
analyze existing programs as a framework for growth, awareness and agreement
among stakeholders and decision-makers about the elements of an effective
system, and evaluating the adequacy of the current periodic reviews of consumers
such as the PASARR process,
and finally how to avoid unjustifiable institutional placements in the first
place.
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Plan
development and implementation that
involve people with disabilities (and their representatives, where
appropriate) using methods that are constructive and ongoing.
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Create assessment
processes for potentially eligible populations that prevent or correct
current and future unjustified institutional placements including the collection
of baseline data about the numbers of people being served who could be served in
community-based settings and evaluation of the state's ability to respond in a timely, effective
manner to the findings of an assessment.
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Ensure
the availability of community-integrated
services that meet the needs of people with disabilities and their support
systems by evaluating the available funding sources and their coordination, the
current operation of waiting lists, and how well the current service system
works for different consumer groups.
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Furnish
consumers and their families the opportunity, information, and referral systems
to make informed choices regarding
how their needs can best be met in community or institutional settings.
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Ensure
that quality assurance, quality
improvement, and sound management are parts of the plans implementation.
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Olmstead and Ombudsman Program Services
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The Olmstead decision and
resulting guidance from DHHS construct a federal legal foundation for the
creation of nursing home alternatives, a process for building an expanded
non-institutional service system, and new advocacy avenues to serve nursing home
residents and other long term care consumers.
LTCOPs have new tools to help each resident who wants a less restrictive
place to live and receive services. The
decision supplies the program, through a state initiated Olmstead planning
process, a forum to work with consumers and other advocates to create a long
term care system that works.
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For the individual nursing home resident who wants a less restrictive
place to live and receive services, two options are now clearly available to
help meet that desire. In its
1/14/00 letter to state Medicaid directors, HCFA/OCR explained that a state must
be "responsive"
to a nursing home resident who asks for a review to determine if a community
setting is appropriate. A LTCOP
should assist a resident or family seeking that review. If the state is
"unresponsive,"
an individual can also file a complaint with the regional OCR office that the
state has failed to comply with Title II of the ADA.
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Similarly, any disabled person, particularly those dependent upon
Medicaid, facing placement in a nursing home from home, hospital, board and care
home, or assisted living ought to be able to use the same two options, state
review and OCR complaint, to seek community services instead of nursing home
care.
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Moreover, many states are in a formal Olmstead planning process to create a long term care system that works for consumers. These
states have taken seriously the Court’s suggestion of a credible state
planning process coupled with moving
waiting lists will be viewed as ADA compliance by both OCR and federal courts.
A new state system can strengthen the state’s home and community-based
waiver services, help elders remain in board and care/assisted living with
Medicaid funding or expand respite beyond a weekday, 9 to 5 service.
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Some states began this process quickly while others have not yet taken action responding to the Olmstead decision.
A handful of states is challenging the decision.
A first step for state Ombudsmen would be to determine what action - if
any - has begun within the state. Contacts
with the state’s Medicaid agency and the disability community will probably be
the most fruitful along with visits to the websites noted in this paper.
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Disability advocates suggest that the process begin with a letter from
consumers to the state’s Medicaid director asking that planning begin
following the DHHS guidance.
Such a letter from the aging and disability communities jointly would be
a powerful beginning to reform. Under
its federal Older Americans Act responsibilities to represent the interests of
residents before governmental agencies and to analyze, comment on, and monitor
the development of implementation of federal and state laws and governmental
policies affecting the health, safety, welfare and rights of residents,
the LTCOP could facilitate such an effort with leaders of the disability
community such as ARC, Centers for Independent Living, Protection and Advocacy
Services, United Cerebral Palsy, or others.
The Alzheimer’s Association, state chapters of the National Council for
Senior Citizens, or AARP might also take the lead in facilitating the joint
letter to the state’s Medicaid director.
Convening the aging and disability communities prior to the formal
planning process would also give the affected stakeholders an opportunity to
develop suggestions for the how the overall process can best be organized and
consensus approaches to fact-finding, decision-making, and system reform.
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Additional Resources
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The National Ombudsman Resource Center will continue to issue Olmstead
Alerts addressing the questions raised by LTCOPs and reporting on the elements
of a successful Olmstead plan and its development.
In the meantime, there are some valuable materials currently available.
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In February, DHHS, HCFA, the MedStat Group, and the School of Social Work
at Boston University put a new website up:
http://www.hcbs.org
. This site may be the place to find the most up-to-date
releases from DHHS.
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AARP’s Public Policy Institute has posted a paper on the Olmstead
implications for older people with mental and physical disabilities, http://research.aarp.org/health/2000_21_disabilities_1.html.
The paper is an excellent explanation of the Court’s opinion, ADA
requirements, and raises some important initial implementation questions.
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The disability community has developed a wealth of helpful advocacy tools
available on the Internet. Three,
in particular, provide all the basic information needed such as links to
information from the Supreme Court and DHHS, updates on what is happening in
many states, and detailed suggestions for how to get an Olmstead planning
process up and running and producing effective results.
First, is a site created by people with disabilities from a more radical
frame of mind, www.freedomclearinghouse.com.
The site is full of basic organizing and research tools all focused on
making the Olmstead planning process credible and productive.
While the document is set in a disability as opposed to aging dialect,
its Blueprint for developing an effective State Plan to implement Olmstead is an
excellent step-by-step guide to putting substance on the principles DHSS laid
out for effective planning.
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Another very helpful website is from the National Association of
Protection and Advocacy Systems. It
has a large catalogue of information under the heading "Olmstead v. L.C.,
Resources for Advocates," at its website www.protectionandadvocacy.com
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The site also has more detailed information about the Olmstead related
litigation going on across the country. Included
are instructions on how to file a complaint with OCR.
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The Bazelon Center for Mental Health Law has completed an analysis of the
Olmstead decision’s impact on people with mental illnesses. Uniquely, their analysis has a detailed listing of
places to look for funding non-nursing home services.
The site also has up-to-the-minute analyses of ADA and Olmstead
litigation developments. Their work can be found at www.bazelon.org/lcruling.html
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Finally, the Department of Justice has its own ADA home page with a broad
summary of the entire Act and activities across the country,
http://www.usdoj.gov/crt/ada/adahom1.htm
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Conclusion
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LTC consumers have sought Ombudsman help to find different set of long
term care options and services since the program’s beginnings. The Olmstead
decision, built on the ADA, offers an historic opportunity to integrate
facility-based long term care with home-based long term care creating a rational
system of real consumer choices. The
opportunity is too good to miss.
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Footnotes
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The
ADA's
definition of disability is quite broad including any physical or mental
impairment "that
substantially limits" one or more of the major life activities including the
ability to care for yourself. ADA
section 12102(2).
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The
DOJ regulations are patterned on the 20 year old regulations for the section
503 - 505 of the Rehabilitation Act of 1973 which also prohibited
discrimination based on disability.
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The
regulations give no advice on the meaning of "fundamentally alter" and the
Supreme Court’s decision is not clear.
This meaning of this term will be the key to all Olmstead work.
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The
ADA is not limited to people with mental disabilities.
Universally, commentators read the Olmstead
decision to apply to anyone who meets the broad ADA definition of
disability.
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www.hcfa.gov/medicaid/olmstead/olmshome.htm, the Health Care Financing
Administration site and www.hhs.gov/ocr/mis.htm, the Office of Civil Rights site.
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www.hcfa.gov/medicaid/smd1140a.htm
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Ibid.
While a summary of the principles and guidance is provided here, you are
strongly urged to study the original document and its list of initial
planning questions. www.hcfa.gov/medicaid/smd1140a.htm
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PASARR
(pre-admission screening and annual resident review) process is a required
element of the federal Nursing Home Reform statute.
Before admission and annually thereafter, all nursing home residents
are to be assessed for mental retardation and mental illness.
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Instructions
on how to file an Olmstead complaint with OCR can be found at the www.protectionandadvocacy.com
website under "Olmstead
v. L.C., Resources for Advocates."
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It
is estimated that as many as 30 states are doing Olmstead planning.
Attempts are being made to solidify a list of states in the planning
process and contact names within each state.
For now, check the noted disability websites for updated state based
information.
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One
such challenge was the Garrett
decision. The Supreme Court’s
decision did not negatively affect the Olmstead
ruling. For more information on this case, go to http://www.bazelon.org/garrettcase.html
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A
sample letter to the state's
Medicaid director can be found at www.freedomclearinghouse.com.
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Section 712(a)(3)(E)(G)
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ABOUT THE AUTHOR
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Hollis Turnham is a nationally
known advocate for elderly Americans. While
holding the John Heinz Senate Fellowship in Aging, she worked on the
successful reauthorization of the Older Americans Act and staffed Senator
James M. Jeffords' (R-VT) membership on the Senate Special Committee on Aging.
Ms. Turnham served as Michigan's Long-Term Care Ombudsman with Citizens
for Better Care for almost 16 years earning commendations for a quality
program for AARP and the Office of Inspector General for the Department of
Health and Human Services. During
her tenure as the state LTC Ombudsman, Ms. Turnham was also a member of the
Institute of Medicine's Committee that evaluated the LTC Ombudsman program
nationally for the federal Administration on Aging.
As an attorney, Ms. Turnham has also chaired the Elder Law and Advocacy
section of the State Bar of Michigan and served on numerous state councils and
task forces examining the legal rights of elders.
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ABOUT THE REPORT
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This document was supported,
in part, by grant No. 90AM2139 from the Administration on Aging, the
Department of Health and Human Services. Grantees undertaking projects under
government sponsorship are encouraged to express freely their findings and
conclusions. Points of view or
opinions do not, therefore, necessarily represent official Administration on
Aging policy.
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