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11/25/98, 11:27 amcst
Statements by
Dawn Russell
and Deborah Cunningham
in support of the Mid-South Arc's position statement on long-term care in Tennessee
Today ADAPT stands before you leading the disability community in saying to our elected officials that we will no longer tolerate the state's total disregard for individuals and our civil rights. The 1990 Americans with Disabilities Act was passed to assure that people with disabilities, young and old, would not fall victim to states deciding the fate of its citizens, but to empower each person to truly access what is available to them.Title II of the ADA requires that:
"public entities administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities."This cannot be accomplished when 99% of Medicaid dollars to nursing homes.
Medicaid dollars are long term care dollars. Over and over, Tennesseans have been told by Governor Don Sundquist and his administration that they must find new money to implement home and community based services. This is simply not true. What is true though is that by ignoring the integration mandate of the ADA, the Governor and his appointees go about their work illegally.
Until the day that people with disabilities have a choice in where they live and receive services the sate will continue to violate American's civil rights. With all this being said, one must ask oneself why this issue is so complex. I would like to take the liberty to answer that question.
The nursing home industry has one of the most powerful lobbies in the country and obviously in our state. ADAPT hoped that today is the day that all Tennesseans join those of us who are here in saying we value the ADA and together we will work to see that the law is enforced.
Thank you. FREE OUR PEOPLE!
Dawn Russell
November 24, 1998
The Memphis Center for Independent Living joins the ARC and ADAPT in urging our state legislators and Governor Sundquist to listen to the voices of Tennesseans across the state. Tennesseans are crying out for choices in long term care services. Thousands of people with newly acquired and progressive disabilities and the elderly are being placed din nursing homes each year because Tennessee does not provide community based services. They are separated from their families, neighbors and their children and deprived of the opportunity to participate in their community.
We know that money is available for community based services and we know that our citizens want choice, not forced institutionalization.
Let our message be clear - Tennessee must end the stanglehold which the nursing home lobby maintains in our state. People with disabilities and the elderly want choice in long term care. We challenge Governor Sundquist to respond to the citizens of our state rather than well-heeled lobby groups by funding a statewide comprehensive long term care services plan. This funding would include Medicaid dollars as well as state and other revenue.
Deborah Cunningham
Tom Buggey
Position Statement on Options for Long Term Care
for Tennesseeans with Disabilities
Written by
The Advocacy Committee of
Mid-South ARC
The following position paper on Options for Long Term Care for Persons with Disabilities in Tennessee is being submitted to the public at this time due to the ongoing problems this state has had in providing feasible and humane programs for this population and because of two proposed bills presently being considered that directly relate to this situation.
According to the Report Card to the Nation, a research publication of the National ARC, Tennessee ranks 50th of the 50 states in terms of community integration options and services for persons with disabilities. This ranking was based on the rate of decline in persons living in institutions, numbers living in smaller community settings, and the numbers of persons with disabilities served relative to state population. This finding was corroborated in a survey conducted by ADAPT in 1998. Not only is there a crisis in terms of viable options of long term care, there is also a severe lack of basic services in this area. Tennessee has a waiting list for services in long term care of 1651 families. The Memphis area alone has 533 families and citizens waiting for services. These numbers are probably low estimates as many families have simply stopped trying and some citizens have actually died while waiting. In light of governmental surpluses and a healthy economy and from a basic humanitarian standpoint, this lack of service provision is inexcusable. There is also very good reason to believe that Tennessee's lack of progress in consumer-driven, community-based service options for persons with disabilities is illegal and opens the door for litigation. Legislation such as the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) has set standards for programs to be delivered in the "least restrictive environment". Attorney General Janet Reno has stated:
"...We believe that states have an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs. And we have used the law to fight for this. Many individuals with disabilities are placed in nursing homes or other institutional settings even when they don't really need to be there... But some states don't understand what I've been talking about and they refuse to make reasonable modification in their policies that would allow this to happen..." (Reno, May 15, 1998)
Considering Tennessee's national ranking in community inclusion, we believe Reno's remarks apply directly to our state government. The two bills related to long term care options for persons with disabilities are State Senate Bill 2411 and the federal Bill H. R. 2020 familiarly called MiCASA (My house). Both bills work to empower persons with disabilities by allowing them a range of consumer-driven, long-term care options with an emphasis on assisted community living. S. B. 2411 was passed and is a progressive sounding piece of legislation, but unfortunately, it has no provision for funding. An earlier edition of this proposal had provisions for funding through Medicaid growth funds, however, this part of the bill was cut. It is agreed by all those signing this position paper that S. B. 2411 must be enacted with adequate funding support to insure that the provisions of the law are created in reality. It must also be implemented with provisions for organization and service coordination that would allow individuals and families to navigate within a truly people-first environment.
We also believe that MiCASA serves the same purpose and urge that our representatives in Washington and the citizens of Tennessee support the passage of this legislation. Passage of MiCASA would give people REAL Choice, by allowing resources that now pay for them to live in a nursing home or other institution to be used where they choose. Surveys and other research indicate that the vast majority of persons in need of long term care, whether they be elderly or persons with disabilities, opt for their own home in their own community.
What we are urging is not radical. It is basic to our Constitution and laws. The same inalienable rights granted to all American Citizens must be made available to those with disabilities. The concept of "separate cannot be equal" which is the basis of our civil rights legislation is as relevant in this situation as it was during the civil rights movement of the 50's and 60's. It is time to rectify past errors in our attitudes toward and treatment of persons with disabilities. We must also recognize that the population labelled as having disabilities is not limited to those who acquire disabilities during the developmental years. The majority of families will experience the need for long-term care as family members age and become less able to meet daily care needs (Many local AARP affiliates and the national Area Agencies on Aging have endorsed passage of MiCASA). It is time for Tennessee to transcend the disgraceful distinction of being the worst state in our country in relation to community inclusion of persons with disabilities. A first step would be the humane implementation of S. B. 2411 (with adequate funding) and passage of H. R. 2020. The second step would be to ensure that that implementation of these measures fully complies with the intent of the law. It is the commitment of those signing this position paper to work toward these ends through whatever legal means possible.
The Memphis Center for Independent Living
1633 Madison Avenue,
Memphis, TN 38104
(901) 726-6404 v/tty (901) 726-6521 fax
mcil@mcil.org
MCIL is a United Way of the Mid-South member Agency
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