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3/16/98 9:25 am
Excerpts of Mike Auberger's Testimony
March 12, 1998
UNITED STATES HOUSE OF REPRESENTATIVES
COMMERCE COMMITTEE
SUBCOMMITTEE ON HEALTH AND THE ENVIRONMENT
...My testimony today is on behalf of the thousands of people with disabilities who want to have REAL choice to live in the community and participate in what our country has to offer. Needing personal attendant services is not a crime, but thousands of people with disabilities are locked away in institutions because there are very few REAL options in the United States' long term care system.
In the twenty-seven years since I acquired a disability, people with disabilities have been promised the moon and the stars. What we have gotten is a multitude of platitudes and programs that force people with disabilities -- young and old -- to leave our homes, leave our families, move across the country --just to continue to receive services in our own homes. Programs require people with disabilities to impoverish ourselves, sell our homes, divorce our spouses, and lie -- all to merely to access programs that only meet part of our needs. People with disabilities are forced into more expensive programs that over regulate, over medicalize, over control, and demean.
You may shake your head and say "This is an over statement. Is that possible?" Yes it is! It happens every day. It happened to me. I had to move from Ohio to Colorado to receive attendant services. Leaving a mother, a father, a sister, and a child behind. The only other choice? A nursing home. I vowed then, and now sixteen years after leaving Ohio I vow again that I would rather die then go to a nursing home. Drastic? Extreme? The truth.
How many of us in this room have been forced to place a loved one in a nursing home or other institution? Your mother, your father, your spouse, your sister, your brother, or even your child, all because there is no REAL choice?
How many more of my friends and acquaintances who have disabilities like John Craig, Susan Logan, John Folks, Robert Bunting, Bob Bott must die in institutions without ever having a choice? How many more people with disabilities young and old must die never having a choice? During my 5 minutes of testimony two more people with a disabilities will die in a nursing home somewhere in America, another faceless statistic in HCFA's annual morbidity report without a Real Choice. How many more will have to die before there is a Real Choice?
We would not be here today had it not been for the heroic efforts of hundreds and hundreds of ADAPT members, who for the past seven years have put their bodies on the line. These warriors have pressured the nursing home industry, politicians, government, and the public to finally address the need for Real Choice. Who would ever think Speaker Gingrich and Minority Leader Gephardt would join forces with us on this bill? It's not as far fetched as it might at first seem. This bill was introduced, and this hearing was scheduled because it is a good idea; because there is a need; and because it is the right thing to do. H.R. 2020 was introduced because the time has come to address this critical issue.
Forty nine national, 114 state and 18 1 local organizations have endorsed this bill because its time has come, and the list grows daily. From Brooklyn to Houston, from Portland to Chicago, from Iowa City to Lorain Ohio, from Berkeley to Albuquerque, across the nation the call is ringing out for MiCASA. The National Council on Independent Living, the Paralyzed Veterans of America, Self Advocates Becoming Empowered, the National Association of Area Agencies on Aging, TASH, the National Rehabilitation Association, NOW and NOD (National Organization on Disability), and hundreds of other groups have signed on as MiCASA supporters.
Too many of us have had to fight to get out of a nursing home or state institution. Too many have lost homes, lost families, lost dignity and worse simply because we need assistance with what the bureaucrats like to call "activities of daily living or instrumental activities of daily living." For us this is not a matter of developing policy, it is a struggle for our lives and the lives of our friends and colleagues.
Seven years is too long to have to wait for the human right to a home instead of a warehouse. Would you want to live in a nursing home? ...
...Our anger and frustration grow because the only publicly funded long term care system, Medicaid, designed over 30 years ago to meet what was thought, at the time, to be the needs of the older and disability population -- is not working. Instead the Medicaid long term care system has evolved into a fragmented, institutionally biased, over-medicalized, over regulated system which disempowers and is disliked by recipients and providers alike. It is inadequate to meet the needs of the growing number of people with disabilities, old and young, who want to have REAL choice and live in the community.
A long term services program must cover the whole U.S. but must give some flexibility to the states. HR 2020, MiCASA, would provide both this coverage and this flexibility. Unlike the current system which is institutionally biased and inhibits REAL choice, this program should not favor any one setting over the other and should allow users to decide where services should be delivered. HR 2020 provides this REAL choice.
A national program should be based on independent living principles of choice and control that have the person with the disability as the focus of the program. It must have the consumer at its center. IIg 2020 was built on this foundation and has these principles throughout. It offers many options in service delivery and consumer control is integral to each.
The time for change has come. You must act.
Tim Wheat
Memphis Center for Independent Living
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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