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January 2011



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November 6, 2009

Dear Speaker Pelosi, Minority Leader Boehner, and Members of the House of

The disability community has been advocating for over twenty years for the
equitable choice to receive support services in their own homes and
communities rather than nursing homes or other institutions.  We believe
this is a civil rights issue.  Though there has been progress reducing the
institutional bias in Medicaid, we hope during this Year of Community Living
(July 2009 – July 2010) and as we celebrate the 20th anniversary of the
Americans with Disabilities Act (ADA), this progress can continue.

For this progress to occur we believe the Administration and Congress must
work with the states and the disability community in two areas.  One is
stronger enforcement of the Supreme Court’s Olmstead decision and the other
is protection of Medicaid optional home and community services in healthcare
reform legislation.  The recent October 30thletter from the Centers for
Medicare and Medicaid Services (CMS) Regional Office to the State of
Missouri,  detailing how they are not complying with the Olmstead decision
and the steps CMS wants them to take in order to come into compliance,  is a
positive example of what the disability community would like to see
continued all over the country.

States are currently reducing home and community services and people with
disabilities and their families are being threatened with having to go into
an institution because there are few community service options available.
Though we understand the economic realities confronting states, we believe
that criteria must be developed and enforced by Department of Health and
Human Services –Office of Civil Rights, CMS and the Department of Justice
that protects our rights to services in the most integrated setting.
States currently have little guidance on what implementing the Olmstead
decision means and we believe many states are currently violating the
decision’s language of services in “the most integrated setting.  We believe
the Administration should work with the disability community, National
Governors Assn and the National Conference of State Legislators to assure
the community integration rights of people with disabilities are protected.

The reform of the healthcare delivery system has been one of the highest
priorities on the agenda of most national and state disability rights
advocacy organizations in the country.  Expanding coverage to the uninsured
and those of us with pre-existing conditions are just two of the major
benefit of all the proposals that are currently moving forward in Congress.
People with disabilities of all ages have a personal stake in the outcome of
the debate on how acute medical and long term services and supports are
delivered and paid for though most of the discussions have surrounded
doctors, hospitals, durable medical equipment, insurance companies and other
payers of healthcare services.

The Congressional proposals use the expansion of Medicaid as the payer for
those currently uninsured for those up to 133% of poverty in the Senate bill
and 150% of poverty in the House.  This is a logical approach because the
legislation builds on a system that is established in every state in the
country.  We support the expanding of Medicaid funding for the uninsured
with some protections for those currently receiving Medicaid services.

Our concern is how the expansion of Medicaid for the low income uninsured
will affect the delivery of Medicaid optional services for people with
disabilities at a time that states are currently under extreme budget
restraints and are reducing not only Medicaid optional services but also
slashing education and other needed human services. Proposals in Congress
have states picking up between 5%-23% of the costs of covering the low
income uninsured.  Governors have expressed their concerns about  how
absorbing  this increase will increase their deficits and may result in
massive cuts in education and human services.

The fact that all Medicaid home and community services are optional make
them particularly vulnerable to cuts though these community long term care
services are less expensive and overwhelmingly preferred over nursing home
and other institutional services.  Currently US long term care policy makes
it mandatory for states that choose to deliver Medicaid funded services must
provide nursing home services.  The rebalancing of the long term care
system, moving from funding focused on nursing homes and other institutions
to a system giving a real choice for home and community services, has been
accelerating over the last decade.  It would be a major irony if one
unintended consequence of health care reform legislation was to reverse this
rebalancing trend by putting states in the position to make the difficult
and wrenching decision to cut home and community services and other optional

Though there are proposals to protect  from states cutting out Medicaid
optional populations there is nothing in the bills that would prohibit
states from cutting Medicaid optional services like home and community 1915
(c) waivers and/or the Personal Care Option.  We ask you to work with us to
put in language in the legislation that will protect home and community
services and continue the rebalancing of the long term care system that
gives people with disabilities of all ages a real choice for services in the
most integrated setting.

President Obama declared that the year from July 2009 to July 2010 as the
“Year of Community Living”.  On July 26, 2010 the disability community will
celebrate the 20thAnniversary of the Americans with Disabilities Act, ADA.
We hope that strong enforcement of the Olmstead decision and the passage of
health care legislation by Congress will promote the values and principles
of integration, inclusion and independence that are at the foundation of the
ADA and of people with disabilities lives in the community.

For an Institution and Barrier Free America,



American Association of People with Disabilities (AAPD)

Autistic Self-Advocacy Network (ASAN)

Coalition for Community Integration


Hearing Loss Association of America (HLAA)

Little People of America

National Center for Environmental Health Strategies, Inc.

National Coalition of Mental Health Consumer/Survivor Organizations

National Council on Independent Living (NCIL)

National Spinal Cord Injury Association

National Telecommuting Institute (NTI)

National Youth Leadership Network (NYLN)

Not Dead Yet

Self Advocates Becoming Empowered (SABE)


United Spinal Association


Consumer Directed Personal Assistance Association of New York State

Disabled Action Committee (DAC Virginia)

Michigan ADAPT

NC Disability Action Network

New Jersey Association of Community Providers (NJACP)

New York Association on Independent Living

New York State Independent Living Council (NYSILC)

New York Association of Psychiatric Rehabilitation Services (NYAPRS)

Starkloff Disability Institute

Statewide Independent Living Council of GA, Inc.

Texas State Independent Living Council


Boston Center for Independent Living

Chicago ADAPT




S.E. Kansas ADAPT

Cc:  National Governors Assn

        National Conference of State Legislatures

Ari Ne’eman
The Autistic Self Advocacy Network
(202) 596-1056

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the Dan Marino Foundation at http://www.nomyths.org

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