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7/30/98, 6:51 am
Tom Buggey
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.
State Senate Bill 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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