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I'd Rather Go to Jail Than to Die in a Nursing Home

by Stephanie Thomas

ADAPT, American Disabled for Attendant Programs Today, a national disability rights group, held its Spring Action in Houston Texas last May. The action, in part supported by Resist, was attended by record numbers of disability rights activists and pulled together many important parts of the issue of freeing people with disabilities from nursing homes and other institutions. Action focused on the nation's third largest nursing home corporation, Living Centers of America, as well as the Republican controlled Congress, particularly the notorious House Majority Whip Tom Delay. Houston was also the opening salvo on the managed health care industry whose tentacles are so slowly reaching for government health and long term care programs across America. In addition, Houston was the first in a series of national hearings on consumer (as opposed to provider) disability housing issues. HUD Secretary Henry Cisneros attended and tried in vain to defend his department's use of housing funds to guaranty loans for nursing homes.

This election-eve over 500 ADAPT members, activists with disabilities and our supporters, will gather in Atlanta to continue the Olympian task of redirecting our national long term care funding bias from institutions to community-based services. ADAPT is gathering in Atlanta November 2nd through 7th to protest the national convention of the American Health Care Association, AHCA, the nursing home industry lobby group which stands in the way of ADAPT's goal.

Started in 1983 ADAPT began as American Disabled for Accessible Public Transit (or Transportation, depending on who you talk to). Originally 36 members joined together to demand that a wheelchair lift be standard on ever new city bus. For seven years, as ADAPT grew, we blocked buses (sometimes chaining ourselves to them or crawling on board inaccessible buses) in cities across the United States to call attention to the need for access to public transportation, and disabled people's civil right to access to public services and facilities in our communities.

When the Americans with Disabilities Act became law in 1990, it not only required that -- starting a month after passage (ie in August 1990) -- all new buses have lifts, but it adopted into federal law the idea that access is a civil right.

But what good is the right to a ramp or an equal opportunity to work if you are stuck away in a nursing home? Over two million Americans are locked away in these facilities from which the industry brings in a cool $65 billion plus a year, $40 billion from Medicaid alone. Many of ADAPT's members have been locked away in nursing homes and other institutions and are well aware such facilities are little more than human warehouses in which people with disabilities serve as the commodity for the long term care industries. (80-203)

ADAPT wants to see at least 25% of these Medicaid nursing home funds redirected to fund a national attendant services program. Attendant services are help with things like bathing, dressing, eating and similar activities of daily living which a person needs help with due to his or her disability. ADAPT has drafted legislation, the Community Attendant Services Act, CASA (which means home in Spanish) to achieve this goal, and state versions are being promoted in Vermont, Wisconsin, Georgia, Texas and New Mexico.

Now over 5,000 strong nationally, ADAPT has chapters in over 32 cities and 27 states, and is growing daily.

One of the signature aspects of ADAPT is the passion our members bring to the struggle. Parallels with the Civil Rights Movement of the 50s and 60s are an easy parallel to draw to get across the concept that the goal of our work is civil rights for people with disabilities. The parallel seemed most apt when we were fighting for lifts on buses, and the line "we can't even get on the back of the bus" went a long way to make clear to those unfamiliar with disability and accessibility what we wanted.

In a real sense however, disability rights is in a much earlier stage than the civil rights movement. In many ways it is much closer to the abolitionist movement, to abolish slavery. Disability pride is shared among a minority of our community, and the attitude "better dead than disabled" is quite prevalent among the general population as well as among many people with disabilities. ADAPT's current focus on attendant services instead of nursing homes has been much more of an uphill battle than logic would have predicted.

While "classic" civil disobedience challenges unjust laws by breaking these very laws and thereby challenges the attitudes that support them, ADAPT's approach has been an adaptation. Through our actions (as we call our protests) ADAPT has sought to challenge the view that people with disabilities are helpless, sick, vulnerable and unable to direct our own lives. ADAPT's protests seek to challenge this view and challenge our opposition (AHCA the nursing home industry lobby group, politicians and government, etc.) with obstacles similar to some of those the opposition's policies and laws place in our lives.

Last fall ADAPT chose Lansing Michigan, home of Governor John Engler, then potential vice-presidential candidate and master-mind of the welfare reform and Medicaid block grants being promoted by Congress. When Governor Engler continued to refused to meet with ADAPT after letters, phone calls and a take over of his Michigan Republican Party Headquarters, we had no choice but try finding him at home. An example of the underestimation of disabled people: over 300 wheelchair users were able to stroll through Engler's country club neighborhood, through his heavily guarded -- but unlocked -- front gate right up to his front door. When he still refused to meet, ADAPT shut down the state capitol building for an afternoon, turning it into a nursing home from which the legislators and lobbyists were not free to go without ADAPT's permission. (Most nursing homes try hard to keep "residents" from coming and going without their permission.) Oddly enough, people felt the need to climb in and out of first floor windows in their desire not to loose control of their lives!

This was not ADAPT's first "home visit". House Speaker Newt Gingrich had for several years met with ADAPT promising to introduce ADAPT's draft legislation the Community Attendant Services Act, CASA. Yet Newt had failed repeatedly to follow through. So in May of 1995 ADAPT again went to the Speaker's office and when he was too busy to meet ADAPT took over his apartment building! Gingrich's behavior was so outrageous, his landlords, United Methodist Church officials, at first upset their building was being so inconvenienced, ended up joining ADAPT's call for Gingrich to act. Out of town, off giving a speech at the state department where he "could not be reached by telephone" according to his staff, Gingrich ended up slinking off to a hotel for the night. In September however, he met with ADAPT making another series of promises (which he has yet to live up to. It will be interesting to be so near his home district on election-eve to remind him of his promises.)

The last time ADAPT took on the nursing home lobby group AHCA was at their convention in Las Vegas in 1994. On profits and expense accounts gleaned from locking folks away in their facilities, AHCA was partying hardy at the Hilton Hotel made famous by the recent Tailhook Hotel. ADAPT took to the streets of sin city and there at the intersection of Paradise and Riveria Blvds., in front of the Hilton and the Las Vegas Convention Center, erected a cross with a wheelchair hanging from it to remind all involved of the lives that have been sacrificed to benefit that industry. As the Las Vegas police moved in to arrest they pulled on their latex gloves (a practice adapted I believe since the AIDS epidemic and ACT UP). ADAPT pulled on ours (350 people who have catheters, bowel programs, etc. are never in short supply of latex gloves.)

ADAPT actions have two goals: to create change addressing the issues we identify, and to empower people with disabilities to take control of our destiny and create a real place in society. As one Houston attendee put it "I really have found no bigger rush than being with ADAPT folks at a national action. There's an energy and a power you take home with you. I was in a nursing home for 12 years. I'd rather die than go back! It's like we were chanting 'I'd rather go to jail than to die in a nursing home'. Hell I'd rather go to jail than to have anyone have to live in one."

To find out more about ADAPT contact ADAPT in Denver at:

PO Box 9598
Denver, CO 80209
or contact
ADAPT of Texas
1319 Lamar SQ DR #101
Austin, TX 78704
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