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Accueil / Albums / Mots-clés ADAPT - American Disabled for Attendant Programs Today
+ Medicaid 12
ADAPT (618)
November 1992 Access USA News Page 5 Atlantis leads to ADAPT leads to independence Cathy Seabaugh, Staff Writer DENVER,CO-Their offices are relatively small compared to the massive projects the American Disabled for Attendant Programs Today organization tackles. An inconspicuous location in south central Denver serves as national headquarters for the 29 states who have ADAPT chapters. This Colorado town is a gold mine for members of the disabled community, not so much for its accessibility and attitudes, but for the brainstem which this office at 12 Broadway has become. ADAPT representatives throughout the United States act as nerve endings, sending vital messages to the Denver office so it can operate efficiently and effectively. Effectiveness: a term well defined by ADAPT members. ADAPT was conceived and delivered by staff and volunteers of Atlantis Community, founded in 1975 by former nursing home employee Wade Blank and Mike Auberger, a quadriplegic from a bobsledding accident in 1971. Atlantis emerged so that individuals, even those who are severely, multiply-disabled, have the option to live outside an institution. ln its first l5 years, Atlantis was able to successfully transition more than 400 disabled adults from “sheltered settings" to more independent living standards. As an admirable offspring of Atlantis, ADAPT set its own agenda in June 1983 and embarked on an action-packed mission to make public transportation accessible to everyone. American Disabled for Accessible Public Transit set out to train, develop and empower disabled activists so they could effectively battle for that accessibility. Eighteen members of the Atlantis community had taken the first strides toward accessible public transportation in Denver when they gathered on July 5&6, 1978, to block city buses at Broadway and Colfax across from the state capitol. ‘Then in 1982, after beating up the board enough," said Auberger, one of the 18, "they decided they'd buy all lift-equipped buses." Once ADAPT formed the next year, the foundation was in place. With Denver as a model, activists began chipping away at other cities’ granite-like, antiquated public transportation systems. "(Former President Jimmy) Carter appointed Brock Adams in 1976 and Adams set a federal mandate that all new buses bought with federal money had to have (wheelchair) lifts,” Auberger said. "Under the Reagan administration, APTA (American Public Transit Association) sued (to avoid the lift requirements) and won. "APTA was having its national convention in Denver in October 1983 and about 20 people from across the country showed up to join about 22 people from Denver. We sent notice to (APTA) that their convention would not go uninterrupted if they did not meet with us. They went to the mayor, but he said he wouldn't protect them unless they agreed to meet with us.” ADAPT met APTA there. They would meet many more times. "We decided wherever they had a convention, we would go,” Auberger said. "It moved us around to communities where they'd never been exposed to the issues. People all of a sudden became aware. "If we're talking about the issues, people are going to form an opinion. You polarize people. Whether they support you or not is not the point. If there's not an opinion there, you can't change it." The deep roots, pockets or whatever of APTA were a long-time barrier for ADAPT. But as the Americans with Disabilities Act cemented and included regulations for public transportation, APTA’s resistance to ADAPT's demands weakened until the federal govemment finally made ADA the law. With that priceless piece of legislation signed and inducted into the pages of history, ADAPT was ready for its next mission. "What we said at that point to members was to put out feelers in your communities,” Auberger said. "What we found was personal assistants was the biggest issue of concern.” Retaining the ADAPT acronym, the group devised new plans to force change in the long-term health care system of the United States. “At least 60 percent of ADAPT members have (resided) in nursing homes at one time or another,” Auberger said, "The other 40 percent have spent their lives trying to avoid going into one.” Although ADAPT and Atlantis are neither to lose its identity in the other, they are a family unit and work together toward change. Atlantis is a certified home health care agency, making 53,000 visits each year in Denver and Colorado Springs, serving approximately 85 clients. “That's 365 days a year, whether there's three feet of snow on the ground or it's 105 degrees," Auberger said. “We have a 24-hours-a-day emergency backup system that works probably 98 percent of the time." One Atlantis client is a C2 quadriplegic who is on a ventilator nonstop. Yet he is allowed to live in his own home with the help of Atlantis personal attendants. "That shows you our capabilities,” Auberger said. ”We can provide 24-hour care for about $7,500 a year. A nursing home would do it for $20,000.” ADAPT’s scrapbook for the past two years includes protests in almost countless cities throughout the country. Wherever Dr. Louis Sullivan, Secretary of the Department of Health and Human Services, made a speech or appearance, ADAPT added itself to the invitation list. The protests usually involved arrests, which is a proven effective tool for drawing media coverage. Radical activity, some say. "We really give the middle-of-the-road disabled community members the power to make change," Auberger said. "We make them look sane. “It's like in Illinois, Gov. Edgar didn't have a problem meeting with the straight group who went to Springfield because they were sane. lf he dealt with our radical group, he'd have to deal with all radical groups. We really give (middle-of-the-road community members) a platform." ADAPT picks on Sullivan because, they say, he can initiate change. They argue that Sullivan's signature is all that's necessary to require the states receiving Medicaid to provide personal assistants. Just more than half the states provide such funding and many; if not all, of those programs are underfunded, restricted and far short of meeting the demand. ADAPT seeks to convince Health and Human Services - Sullivan - to take one-third of the $15 billion Medicaid dollars and commit it to home-based, consumer-controlled services. "Every state that buys into Medicaid has to fund nursing homes,” Auberger said, explaining how the system currently works. Sixty-five percent of all money paid to nursing homes is Medicaid funds. "States have little play in what they can do with Medicaid.” Nursing homes use what's called a “cold bed rate" which refers to the empty beds in their institutions that are not producing income. Lobbyists for the nursing home industry are looking at these rates and profit margins, not at long-term care that allows individuals to retain their independence. "We’ve become a valuable commodity,” Auberger said. "It's a normal mindset to put someone in a nursing home. This is so ingrained in our society. There's currently no alternative, and most people aren't able to envision the type of care we're talking about." Auberger encourages every person he can to write letters to members of Congress, senators and other politicians who can have an impact on the future of people with disabilities. "When you do that, you raise a level of consciousness,” he said. "You don't have to mention (the numbers), just the concept. "The logic is the problem. When parents are doing (personal attendant care), for free, it doesn't have to be skilled. When Medicaid pays for that same care, a nurse has to do it.” Statistics provided by the American Health Care Association show the average lifespan on an individual in a nursing home is 21 months. "You can't convince me there's quality care in a nursing home," Auberger said. "We (at Atlantis) are non-medical personal attendants. When the staff goes into a home, the person in that home is the boss. We do things the way they want us to do them. "People don't have to give up their power to able-bodied people. But it's okay to share the power." Although many members of the disabled community have made endorsements this election year, ADAPT chooses to remain rather neutral - for a change. "Don't pick a side,” Auberger said. "As soon as you pick a side and that side loses, you now have an enemy on the other side. That's been real effective tor us. We'll rate candidates on disability issues, but we won't endorse anyone. "If there's a disability issue in Colorado, legislators call here, the media calls here. We're a powerful entity in this state. As hundreds of ADAPT activists confronted the annual conference of the nursing home industry in San Francisco October 19-21, the power of this entity spread toward the Pacific. Persons interested in more information about ADAPT can call Auberger or Wade Blank at (303) 733-9324 (voice and TDD). INSERT AT CENTER OF PAGE: Across the top in bold letters the word "ATLANTIS" and below that ADAPT's new Free Our People logo, the wheelchair access symbol with it's arms raised above its head breaking chains that are bound to it's wrists. Above this figure, in a semi-circular pattern the words "Free Our People" and below, also in a semi-circular pattern, "ADAPT"
ADAPT (816)
This Week in Healthcare Photo: Protesters in wheelchairs sit in a group chanting. Their signs read: "Is there a nursing home in your future?" and "Our Homes not Nursing Homes." Front row left to right is George Roberts with Larry Biondi and another person behind him, and Stephanie Thomas and Karen Tamley with signs. Caption reads: Wheelchair-bound members of ADAPT, a patient-advocacy group, disrupt AHCA’s meeting. Title: Disabled protest AHCA approach in lobbying for reform by John Burns [This article contines in ADAPT 815 but the entire text is included here for easier reading.] Nursing home providers weren’t the only ones recommending comprehensive long-term-care reform last week during the American Health Care Associations convention in Nashville, Tenn. More than 250 people, many of them disabled and wheelchair bound, demonstrated outside—and inside—the convention's Opryland Hotel headquarters to protest the AHCA’s lobbying of the Clinton administration for increased federal funding for nursing home care. The incident was the latest in a series of clashes between healthcare provider and consumer groups reacting to President Clinton's healthcare reform plan. Last month, the American Association of Retired Persons and Families USA, a consumer advocacy group, launched separate advertising campaigns attacking the lobbying efforts of several healthcare special-interest groups (See related story, p. 60). Early in the week, Paul Willging, AHCA’s executive vice president, outlined the associations agenda for reform to an audience of more than 2,000 nursing home administrators. More than 4,000 people attended last week's convention, the largest turnout in eight years. The group represents about 10,000 for-profit facilities. Mr. Willging commended the Clinton administration for the inclusion of steps in its reform plan to improve long-term-care financing. The plan calls for the creation of a long-term-care insurance market to help residents pay nursing home costs. “We've argued for years that the private sector offers an answer to escalating Medicaid spending... and to the forced impoverishment of millions of Americans due to their long-term-care needs,” Mr. Willging said. The AHCA’s platform for reform calls for a private-public partnership for long-term-care financing. Under their vision of coverage, private insurance would pay a large portion of nursing home costs, while the federal government would pay for the poor. However, eliminating the "imprisonment” - not impoverishment—of nursing home residents was the battle cry of hundreds of protesters from a group called Americans Disabled for Attendant Programs Today. The organization is a Denver-based patient advocacy group representing people with disabilities who would rather live at home than in nursing homes. Throughout the week, ADAPT members protested outside the Opryland Hotel, demanding that the group be allowed into the convention to debate its agenda. The group’s primary goal is to shift at least 25% of Medicaid spending now designated for nursing homes so the money could be used to develop home- and community-based long-term-care programs. The AHCA, which denied access to ADAPT members, did offer to meet with them in a closed-door session, said Claudia Askew, an AHCA spokeswoman. However, after talks broke down on Sept. 28, ADAPT protesters stormed the hotel, disrupting the convention and hotel traffic for hours. Nearly 100 ADAPT members were arrested. “We think we share a common goal of supporting additional funding for home-care services,” Ms. Askew said. “But, after today, I don’t know if we can come to any agreement.” This isn't the first time the association and ADAPT have clashed. Last year, ADAPT staged a similar protest during the AHCA’s convention in San Francisco, resulting in numerous protester arrests, she said.
ADAPT (1018)
Houston Chronicle Tuesday May21, 1996 Headline: 5 arrested after building is taken over in protest [page has a crease down the middle so some text is hidden, most was able to be figured out] by Lisa Teachey -- Houston Chronicle About 400 disabled people took over a westside building Monday until police arrived to move the protest outside. Members of American Disabled for Attendant Programs Today, most of them in wheelchairs, blocked the entrance and elevators leading to Living Centers of America at 15415 Katy Freeway at about 10:30 a.m. Five people who refused to leave the building were arrested for criminal trespass, said Houston police Capt. D.E. Watkins. None of the arrested was wheelchair bound. The protest was staged because ADAPT wants a larger share of the federal money dedicated to nursing home care to go to programs that provide in-home care or community-based care for the disabled. “We're tired of the nursing home industry keeping a lock on over 85 percent of the long-term care money,” said protester Diane Coleman. “If a person needs long-term care, they should be able to say where they [obscured partially here] get, not the system.” Federal money is set aside through Medicaid for nursing home care as well as for attendant-care and community-based programs, said Katherine Hinson, of the Texas Health Care Association, a trade organization that represents long-term care facilities. “They want to take money from one under funded program and put it in another under-funded program,” Hinson said. “There’s not enough money to go around. We've asked them to join us to get more funding for all.“ Living Centers is a long-term health care corporation that operates nursing facilities, rehabilitation centers a other types of facilities. “Their main quarrel is with the government,” said Edward Kuntz, Living Centers chief executive officer. “They want additional funding." Kuntz said he agrees with ADAPT's call for more money, “but not at the cost of long-term nursing facilities."
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The Washington Post, Metro Section 5/6/93 [Headline] The Disabled Plan to Show Washington They're Enabled—and Entitled By Liz Spayd, Washington Post Staff Writer Michael Auberger has shackled his wheelchair to city buses in Dallas. He has barricaded hotel entrances in San Francisco, and he has thrown himself in front of federal buildings, government officials, even oncoming traffic, all to draw attention to the rights of the disabled. This weekend, Auberger and hundreds of other activists from across the country plan to converge on Washington for a three-day blitz of demonstrations and marches in what promises to be the largest protest in history for people with disabilities. “We've written the letters, made the phone calls, had the meetings, and the bottom line is we're still being treated like second-class citizens." said Auberger, co-founder of ADAPT, an activist group that is spearheading the activities. “lf those channels don't work, you take to the streets." Organizers say the immediate purpose of the demonstrations is to demand that the federal government commit more money to helping disabled people live at home, instead of in institutions. At the same time, they want to continue the larger campaign for equal rights that produced the Americans With Disabilities Act, landmark legislation that went into effect last year. A march to the White House and a memorial service for Wade Blank, who was a leader in the movement, are expected to draw the largest crowds, both on Sunday. What may draw the most attention, however, are demonstrations on Monday and Tuesday, when protesters are expected to disrupt Washington with human blockades of buildings and streets. The exact places and times for those actions aren't being disclosed, but the targets could include public buildings, such as the Capitol and the White House, and some federal agencies. “We like to preserve the element of surprise," Auberger said. ADAPT — an acronym for American Disabled for Attendant Programs Today — has been staging protests every six months for more than a decade to fight what it says is the inhumane treatment of the disabled at nursing homes and other institutions. The group said it hopes to redirect 25 percent of the $23 billion in Medicaid funds currently budgeted for nursing homes into programs that would enable those with disabilities to have attendants in their homes. Currently, each state sets policy for how much Medicaid money will go toward attendant care programs, but there is no national policy. [Subheading] Disabled Activists Plan 3-Day Protest The strike on Washington is timed to pressure the Clinton administration into focusing on people with disabilities as part of its package of health care revisions, due out soon, activists said. "Clinton has talked about change and says he wants people to be able to live at home, but what we're looking for is more than just words," said Bob Kafka, an ADAPT organizer in Texas who plans to bring a caravan of about 50 people to Washington. In the past, ADAPT activists have drawn attention to their cause by employing sometimes sensational tactics. They have done belly crawls across hotel lobbies in San Francisco, clawing at passersby. They have taken sledgehammers to street curbs in Denver to protest sidewalks that were inaccessible to wheelchair users. And they have swarmed and blockaded buildings in virtually every major U.S. city; a demonstration in Chicago last spring forced the evacuation of more than 1,000 American Medical Association workers and created disruptions in a half-dozen other downtown facilities. Though such events have attracted media attention, some individuals and `groups` sympathetic to ADAPT’s cause question how effective they are in achieving the larger goal of attaining more money for in-home care. “We're sympathetic to their concerns, but we think the tactics they use bring attention to ADAPT and not the problem," said Claudia Askew, a spokeswoman for the American Health Care Association, which represents 11,000 nursing homes and is a frequent target of ADAPT protests. Disabled people also are somewhat splintered over whether ADAPT's approach helps or hurts their cause. “There are people with disabilities that think ADAPT is a little extreme," said Patrick McCurdy, vice president of Marylanders for Adequate Attendant Care, a group that generally relies on peaceful protests and negotiations to lobby for in-home care. McCurdy did defend ADAPT's technique as a necessary part of an overall approach to force change in a society that he said has long ignored the rights of disabled people. Few spoke up for those rights until recently, but the Americans With Disabilities Act provided new protections to disabled people and helped forge a civil rights movement among the 43 million people with physical or mental impairments. “A great byproduct of the [disabilities act] is the new sense of confidence and empowerment it has instilled within the disability community," said Justin Dart, chairman of the President's Committee on Employment of People with Disabilities, a small federal agency. “It's generated an enormous infusion of dignity and pride." Gregory Dougan, a District resident, said the renewed sense of hope is one reason he will take part in Sunday's march. Dougan, who was born with cerebral palsy and uses crutches, said he is fortunate to be able to live at home. But several of his friends live in institutions because they can't get the in-home care they need. And on Sunday, Dougan said, he will be thinking of them. "I'll be tired at the end of the day," he said, "but my crutches and me are going to that march."
ADAPT (690)
The Orlando Sentinel Local & state B TUESDAY, October 8, 1991 [This clipping contains two articles. Artilce 1, titled Q & A is a boxed insert. It is continued on a page that are not currently available. Article 2 continues in ADAPT 686 but the entire text of the article is included here for easier reading.] Main Title: Disabled protesters refuse to attend talks Article 1 - Title: Q&A no author given; Lauren Ritchie is interviewer. Mike Auberger discusses why the group of disabled people that he helped organize is protesting the meeting of the American Health Care Association. Auberger was interviewed Monday from his cell at the Orange County Jail by Lauren Ritchie. Question: Why is ADAPT targeting nursing home operators? Answer: The nursing home industry is a $50 billion a year organization. lf you happen to be 30 years old and disabled and live, say, in Ocala —— and there are no personal assistance programs — than you're forced into a nursing home simply because you have physical needs you can't take care of yourself. Q: Why, from your perspective, is that bad? A: If you've ever talked to anybody who's been in a nursing home, the only difference between there and jail is the color of the uniforms. The jail uses guns to keep you there; the nursing home uses pills. You have no choice about when you get up, what you wear, what you eat or don't eat and when you go to bed. When we talk about nursing homes, we talk in terms of incarceration. You never escape from a nursing home. lf you are older and disabled, you could be forced to sell your home, forced to give up everything. The issue is quality of life. Most people can be taken care of in their own homes. Q: Why does ADAPT focus on nursing homes rather than the federal goverment? A: Under the Medicaid program, each state is required to participate in nursing home funding [for the disabled]. Every time a state does a budget it has to identify a certain amount of dollars for nursing homes. If you ... please see Q & A, B-4 Article 2 Photo by Red Huber/Sentinel: The picture is divided almost down the middle by a line of police barricades. On the left side a row of uniformed police officers stand leaning forward, arms stiff, holding the barricades in place. On the right a line of ADAPT protesters (San Anontio Fuentes closest to the camera) face off with the police. Behind them several standing people look on. Caption: A steel barricade and a line of Orange County deputy sheriffs prevent protesters from reaching the doors at the convention center. Title: Deputies expect the protests will grow worse when famous speakers address the convention. By Mary Brooks, of the Sentinel Staff Disabled activists demonstrating at a convention of nursing home operators rejected an offer to meet with industry leaders Monday, calling it a ploy to end their protest. But a spokeswoman for the American Health Care Association, which is playing host to 3,500 people at its annual conference in Orlando, said members of ADAPT -- Americans Disabled for Attendant Programs - seemed more interested in drawing television cameras than in drawing up an agreement at a discussion table. Activists say they plan to continue trying to block entrances to the Orange County Convention and Civic Center until the conference ends Thursday. Deputies expect the worst will come during the visits of the convention's noted speakers. This morning, Red Cross president Elizabeth Dole will address the convention. Television weatherman Willard Scott is scheduled to speak Wednesday. In their second day of demonstrations Monday; about 120 ADAPT members clustered near the three main entrances to the convention center on International Drive. They were barred from approaching the center doors by portable steel fences and 130 Orange County deputy sheriffs. "In the past they've blocked entrances with chains. We want to prevent that," said sheriff's spokesman Cpl. Doug Sarubbi. “They have a right to be here, but the conference attendees have a right to be here. too." Two protesters were arrested late Monday after they refused to stop using a loudspeaker. The protesters, many of them in wheelchairs and a few with guide dogs, sang, chanted and shouted at convention-goers. Tension mounted for several minutes when some of the disabled rammed their wheelchairs into the barricades. There were no injuries. Organizers said the 74 protesters arrested in clashes with deputies on Sunday at the Peabody Hotel on International Drive would not post bond and would remain in the Orange County Jail. Pat Hasley, a hotel security guard who suffered a heart attack during Sunday’s demonstration, was in stable condition Monday at Sand Lake Hospital. Denver-based ADAPT wants Medicaid to funnel 25 percent of the $23 billion nursing home budget to home care for the disabled. The group also wants the chance to address convention participants. “Right now, if you're disabled and need medical services and can’t afford it, they’re going to lock you up" in a nursing home, said Stephanie Thomas, an ADAPT organizer. Demonstrators claimed that 1.6 million disabled people in nursing homes really shouldn’t be there. “We don’t think the extreme needs of a very small percentage should dictate where all the money goes,” said Molly Blank, an organizer from Denver. During about four hours of protest Monday, some convention-goers stood outside the center to watch. Ralph Frasca of Cedar Falls, Iowa, and Mary Scheider of Joliet, Ill., were among a few who ventured over to talk to the demonstrators. “They have a legitimate grievance,” Scheider said. “The main issue is at-home care, diverting funding from institutional care to home care. The funding system now is skewed toward institutional care." Frasca, a journalism professor at the University of Northern lowa, said many convention participants were tumed off by ADAPT’s approach. “The discussion thus far has not centered around issues but rather the sensationalism of the event. I think a non confrontational, peaceful dialogue should be taking place." Linda Keegan, a spokeswoman for the American Health Care Association, said the demonstration did not disturb the convention activities. She said ADAPT had not contacted the association about a meeting or about getting time on the convention agenda before Sunday. She said the health care association’s executive board has met with the group twice this year, each meeting ending in chaos. “We made a commitment to meet. They made a commitment to protest.” The association proposed on Monday to meet with ADAPT on Thursday under the condition that the activists stop protesting. “We don't think that is a good faith offer," said Thomas. The Sheriffs Office and the jail had made extensive preparations for handling the disabled protesters, including special training and added staff. Sarubbi said the Sheriff's Office would not know what the cost would be until the demonstrations are over. Ed Royal, an Orange County Jail administrator, said volunteers from jail ministries were helping to defray some of the costs of handling the disabled inmates. The jail also had to get foam mattresses, diapers, chargers for wheelchair batteries, and other special equipment. The problems of caring for the protesters are many, Royal said. Staff and volunteers had to document and administer medication, and to help inmates relieve, bathe and feed themselves. Jail officials were able to make trades for some supplies with hospitals, but other materials had to be bought. Monday morning, 37 jailed activists began refusing food and liquids and another 10 would not eat but were drinking. Medical staff were monitoring the hunger strikers and were prepared to take them to hospitals if needed, said Royal. On its lawyers’ advice, the corrections department has been videotaping the disabled inmates since their arrival. "They have a history of saying they were mistreated while in custody, so we're taking no chances," said Royal.
ADAPT (713)
The Guardian, May 27,1992 Photo by Tom Olin: A disabled man dressed all in white (Tim Craven) lies on his back to crawl under a police barricade. Beside him a woman (Barbara Bounds) in a wheelchair leans toward him as if to support and protect him. She is facing the barricade and has a sign taped to the back of her chair that says "People Before Profits." Two police men lean over the barricade toward Tim and another sticks his arm in between them. Behind them are even more officers. On the near side of the barricade yet another officer stands, bending almost all the way forward toward Tim on the ground. Caption reads: Protesters in Chicago got our of their wheelchairs and lay down in front of the barricades, forcing employees to walk over them. Disabled militants bring hope to health reform By Mary Johnson Chicago-Hundreds of members and supporters of ADAPT (American Disabled for Attendant Programs Today) took to the streets here May 10-13 to continue their fight for in-home attendant services and to move the national health-Cate debate into the rights arena. The group is aiming to force the American Medical Association—whose headquarters are here—and the American Health Care Association, the nursing home lobby, to replace “home care" with "attendant services“ which consumers control “in the location and manner of our choice,“ says ADAPT. ADAPT, which under the name American Disabled for Accessible Public Transportation won the national fight for wheelchair lifts on buses, intend their street protests as the “flashpoint," says founder Wade Blank, for national health care reform. There is nothing medical about assistance to bathe, eat or dress, these activists charge. Target: Louis Sullivan Learning that Health and Human Services Secretary Louis Sullivan would be speaking at University of Chicago commencements on May 10, the 250-strong ADAPT contingent cancelled a Mother‘s Day march and stormed into the university‘s pavilion, planning to disrupt Sullivan's speech. Police and Secret Service agents promptly ejected them, but the group spent the afternoon handing leaflets to graduates‘ families. Sullivan has been a perennial ADAPT target for his refusal to meet with them to discuss Medicaid policy on nursing homes. The next day, ADAPT surrounded the HHS regional offices in downtown Chicago, managing to get up to 15th-floor offices before being blocked by police. Others in the group cordoned off exits, forcing building employees to climb over them, and at one point succeeded in getting department officials into the street to listen to the group‘s demands. Ten protesters were cited and released. On May 12, ADAPT moved to AMA headquarters, blocking adjacent streets and crawling up to bang on office windows. Police barricaded the doors, but protesters got our of their wheelchairs and piled themselves at barricades, forcing AMA employees to step over them when their offices shut down early. Police moved to arrest four people they believed to be in command. The four included Mike Auberger of Denver and Arthur Campbell of Louisville, Ky., who were released later in the day. Garnering media attention Though ADAPT planned to press state targets only on May 13, the state barricaded its downtown State of Illinois Building on the two days before. Guards locked wheelchair access doors and forced wheelchair users to submit to police escort on elevators. On May 12, Chicago ADAPT member Paulette Patterson sued the state over discriminatory denial of access. Though District judge Milton Shadur failed to grant a requested temporary restraining order, Patterson’s attorney, Matthew Cohen, said he had “no doubt the suit had an effect.” On May 13, ADAPT took over the building while city police squabbled with state police over jurisdiction and mostly kept their hands off protesters. Longtime Chicago activists noted ADAPT‘s success in garnering media attention. Chicago Lawyers Guild member Ora Schub said ADAPT‘s protests got more coverage than Gulf war demonstrations in the city — even when antiwar protesters shut down Lake Shore Drive. There seems little question ADAPT has begun to have an impact beyond disability rights. As one of the only groups to take the health reform issue into the streets, ADAPT, says Blank, sees its role “as focusing the debate on a bigger political issue” within health-care reform: services as a legal right. “What the disability rights movement can do is humanize society,” he says. Tennessee ADAPT recently forced the hospital power structure there to accept a state financing fee that will fully fund Medicaid (see sidebar). Lawyer Gordon Bonnyman, who was involved in the Tennessee campaign, remembers a “poverty advocate friend" sending him a clipping about an ADAPT protest in Orlando, Fla., in 1990, when the group first took on the American Health Care Association over the attendant services issue. He and his friend “were despairing about health reform," he said, “asking ourselves when the people who were really affected were going to begin to influence the discussion. "l said, ‘l just don‘t see that ever happening until people are willing to stage some direct actions,‘ " Bonnyman recalls. “Then she sent me that clipping from ADAPT's Orlando action and she said, ‘Here are the folks who could do that.'" “My response at that time was, ‘That’s nice, but how many people is that?‘ I now think: ‘Enough.' ADAPT really does have the ability to have an impact nationally on health care issues-far beyond their own issue of personal attendant services." The group plans similar actions in San Francisco this fall. Second, sidebar, article inserted on this page: Saving Medicaid in Tenn Six people in wheelchairs moved swiftly a cross across the drive-way of the Tennessee Health Care Association in Nashville on March 31. Chaining themselves together, the small band waited for members of the Tennessee Hospital Association to come out of their meeting. It was a classic ADAPT action. This time ADAPT was leading a coalition of health care reformers that would force the state‘s powerful hospital lobby to drop its opposition to a state licensing fee intended to prevent a $1.1 billion loss in federal Medicaid funds. Tennessee pioneered the concept of leveraging matching federal Medicaid funds by levying a state financing fee against hospitals that took Medicaid patients. With its 70-30 match, the state took the $300 million collected from participating hospitals to obtain another $700 million in federal matching funds. With that tactic, Tennessee was fully funding its Medicaid program and feeling no financial crisis. By 1991 it was in use in 37 states, with many reporting similar success. The federal government, alarmed at having to pay out increased Medicaid funds to stares that used this method, devised a plan to derail it. A little-publicized 1991 law made such licensing fees illegal unless levied against all hospitals equally. It counted on opposition from hospitals that took no Medicaid patients (and therefore had no reason to agree to the fees) to fight state passage of licensing fee bills. That opposition was swift in coming in Tennessee. The state is home to Hospital Corporation of America and HealthTrust, two of the nation's largest hospital chains, and numerous other hospitals. The Tennessee Hospital Association, of which Hospital Corporation of America is a powerful member, opposed the fee. A state bill to extend the fee to all hospitals was virtually dead, said Tony Garr, head of the Tennessee Health Care Campaign, until ADAPT of Tennessee, led by organizer Diane Coleman, got involved. “The only way we could bring attention to the issue was to hit the streets,” said Garr. “ADAPT played a very important role" in helping other groups in the Tennessee Health Care Campaign “move to direct action,” said Gordon Bonnyman, a lawyer who has worked with Medicaid issues in Tennessee. Beginning in January, Coleman and Tennessee ADAPT members staged weekly actions, targeting the large hospitals as villains who were destroying the state’s Medicaid program. The first week a group of nearly 200 people, headed by ADAPT, marched to the Hospital Association's offices. The next week the group staged a protest in front of Baptist Hospital, which opposed the fee. The group hung a sign asking “Are you Christian?" on the hospital administrator's portrait. The group‘s fifth action targeted Thomas Frist, who heads Hospital Corporation of America. “We had a small casket, with dollar bills draped over it, and a sign that read, “Thomas Frist, how many must die for your $1.235 million in annual cash compensation?” said Coleman. The protests had the desired effect. Frist, reportedly upset by the negative publicity, capitulated the day the group surged on Health Care Association headquarters with the cross and withdrew his corp0ration’s opposition to the fee—reportedly urging legislators to vote swiftly to pass the law to avoid more unfavorable publicity. “There have been Medicaid cuts for the last 15 years in this country, and they have gone mostly unreported," said Bonnyman. “ADAPT galvanized people. Without them, the whole thing would have gone down the toilet." M.J.
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Chicago Tribune, Thursday May 14, 1992 [This article continues in ADAPT 712 but the entire text has been included here for easier reading.] Photo by Eduardo Contreras: A man (Randy Horton) in a denim jacket kneels on the bottom step of an escalator with his arms spread from one handrail to the other. Someone stands on the escalator facing him. Behind him are a group of other protesters in wheelchairs filling the area. The group includes: Steve Verriden, San Antonio Funtes, Chris Hronis and others. Caption reads: Randy Horton (on knees) blocks John Meagher on a State of Illinois Center escalator. Title: Disabled protesters take hard line by Christine Hawes and Rob Kawath Rolling his wheelchair around the cavernous State of Illinois Center, shouting for his rights, Ken Heard recalled how he used to spend his days in a Syracuse, N.Y., nursing home where doctors controlled his life. They would tell him when he could get up in the morning, when he could go to sleep, what he could eat. They would feed him pills, but they wouldn’t tell him what they were for. It was as if he had no mind of his own. “l saw people tied down in their beds, said Heard, who has severe cerebral palsy. "And I saw people die in there." It took some time, a marriage that got him out of the nursing home and a raging desire for independence, but today Heard has regained the power to think for himself. He now earns his own income, rents and fumishes his own apartment and even takes vacations in Las Vegas. His joumey to self-sufficiency began when he heard about an activist group now called American Disabled for Attendant Programs Today. On Wednesday, about 200 ADAPT protesters in wheelchairs disrupted operations at the State of Illinois Center, 100 W. Randolph St., blocking exits and occasionally fighting with building patrons and workers as police stood by, arresting no one. Elaborate security measures the state had put in place Monday to keep the 16-floor, 3,000-employee building functioning broke down while state and Chicago police squabbled over who was responsible for arresting protesters deemed to have gone too far. But the scene of disabled men and women dragging themselves up escalators, surging into the building lobby and clutching the legs of people trying to walk past is just another picture in the well-publicized story of a group of vociferous activists savvy in street action. “One of the strongest points of their civil disobedience is making themselves look as pathetic as possible,” said one Chicago-area official at an agency that has been a target of ADAPT. The official, who asked that his name be withheld, said, “They are excellent media users, and they are very successful at putting spotlights on issues that most people probably wouldn’t normally pay attention to.” ADAPT has taken its dedication to a fever pitch, too fevered for some, and like many new protest `groups`—including the AIDS Coalition To Unleash Power (ACT -UP) for gay rights, People for the Ethical Treatment of Animals (PETA) for animal rights and Earth First for the ecology—is using dramatic, sensational tactics for their cause, to allow any nursing home residents the ability to live on their own. And though some may question their efforts, none can doubt they have impact. One woman who said she was grabbed, tripped and bitten during Wednesday’s melee confessed a few hours later, “I can’t help but feel guilty.” During Heard’s 10-year stay in the nursing home, he met some ADAPT members from Denver and listened to them tell of how they took sledgehammers to Denver's street curbs as a way of objecting to inaccessible sidewalks. Now Heard is a political organizer for ADAPT, in town with 350 other protesters. And though members are no longer taking sledgehammers to cement, they are steering wheelchairs into intersections, chaining themselves to buildings and crawling along dirty streets to get over curbs too high for wheelchairs. For the past two years, ADAPT has been staging demonstrations every six months in support of reallocating one-fourth of the country’s Medicaid funds that now go to nursing homes to in-home health care, and to make it easier for disabled people like Heard to escape their “prisons.” This week in Chicago, protests have played out at the quarters of everyone ADAPT perceives as the health-care power brokers: the federal Department of Health and Human Services, the American Medical Association and the offices of Gov. Jim Edgar. ADAPT claims that having personal, in-home attendants for the disabled costs $900 a month less in state funds than keeping them in nursing homes and other institutions. Illinois officials say the difference is only $600. But aside from financial concerns, ADAPT members say they’re fighting against inhumane restraint and abuse in nursing homes. Their strategy is to make the able-bodied feel as uncomfortable and limited as they themselves do—and to grab as much media time as possible. Television cameras were there Wednesday when bands of wheelchair users mobbed workers trying to use an escalator in the State of Illinois Center. And they were there Tuesday when protesters crawled out of their wheelchairs, across Grand Avenue and over foot-high curbs outside of the American Medical Association’s national headquarters. “This makes us visible," said Jean Stewart, a 42-year-old novelist from New York, who has used a wheelchair since she lost her hip muscle because of a tumor about 17 years ago. “And it enables us to get our message across. It’s not a publicity stunt, it’s education.” The group’s history is rife with attention-grabbing acts of protest after talks with officials were unsuccessful and full of what they feel is noteworthy success. The end result of the Denver protests, said Wade Blank, a founding member of the group, was one of the most accessible cities for disabled people in this country. Three years ago, a handful of ADAPT members were arrested for blocking a Chicago Transit Authority bus with their motorized wheelchairs. But two results of those efforts, they feel, were CTA purchase of buses with wheelchair lifts and even the passage of the federal Americans with Disabilities Act. ADAPT members say they are disrupting business as usual because they are shut out of offices where politicians and association presidents could be sitting down to discuss the issue. And they are trapping members of the public to demonstrate how they feel trapped and restrained. “For so long the issues surrounding disability have remained invisible,” said Stephanie Thomas, who lost her ability to walk when she was run over by a tractor 17 years ago. “So we have to do some extraordinary things to make people pay attention.” Wednesday’s protest, which came after U.S. District Judge Milton Shadur refused to order a lessening of security measures at the state’s Chicago headquarters, left police and Department of Central Management Services security officers snapping only at each other, even after the protest turned ugly. “I have to get to an appointment!" yelled one middle-age man as he wrestled on the ground with two protesters who had grabbed his legs and, in the process, had been pulled out of their wheelchairs. “This is what it feels like to be trapped in a nursing home!” yelled one protester. The man finally struggled free and hustled out of the building while Chicago and Central Management Services police watched from only a few feet away. “We’re sorely disappointed with the Chicago Police Department,” said Central Management Services Director Stephen Schnorf. “Certainly they provided better protection to the other buildings where there were protests this week.” But Chicago Police Cmdr. Michael Malone said the state was in control and his officers were just there to back them up. He said the state was misrepresenting the agreement between the two departments. And all that consternation was caused by a group that claims to be loosely organized and barely funded ADAPT, which has about 5,000 members nationwide, has very little formal correspondence, aside from a newspaper called Incitement and a rare memo, Blank said members keep in touch through word of mouth more than anything, and most of them support their travels through small fundraisers. But though the group says most of its day-to-day procedures are hardly sophisticated, ADAPT leaders are extremely skilled in using the media, say some who have watched the group’s protests first-hand. Sonya Snyder, public relations director at a Florida hotel where ADAPT demonstrated against the American Health Care Association last October, said the protesters only became rambunctious when television cameras appeared. “For most of the time, the police and the protesters would share sandwiches,” Snyder said. “But when the media came, down went the sandwiches and up went the protest.” And Janice Wolfe, a spokeswoman for the health care association, said the group’s efforts are “frustrating and misdirected. Their efforts could be better spent on individuals who are in power to do something.” ADAPT members view their protests as grand displays of strength, not pitiful appeals. They speak of their demonstration plans as though they are plotting battle strategy, using words like “identified enemy,” “privileged information” and "top secret." They pattern their protests after the civil rights demonstrations of the 1960s and compare themselves to the black leaders of that era “This is just like Martin Luther King,” ADAPT member Bernard Baker from Atlanta “We’re fired up, and we can’t take it anymore."
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[This clipping has 2 articles in it. Article 2 starts in the left top column. Article 1 continued from ADAPT 691 and the text of that article in included with ADAPT 691 for easier reading.] ARTICLE 2 Title: Health care activism on the rise Title: Special-interest patient `groups` are multiplying while the amount of money available is decreasing. By Delthia Ricks, of the Sentinel staff The dilemmas of increasing numbers of special-interest patient `groups` and a decreasing supply of health care dollars are spawning a growing militant movement in medical care. The opening of the American Health Care Association’s annual meeting in Orlando has drawn a spotlight to the activism increasingly associated with national health care issues. From AIDS to breast cancer to rare diseases, patients are organizing and resorting to demonstrations and protests — often violent ones — to express their views. Members of ADAPT — American Disabled for Attendant Programs Today — have formed human barricades, chained themselves by the neck to buildings, tacked up posters against the Health and Human Services secretary, and hurled themselves from wheelchairs. The group stages many of these demonstrations at AHCA's meetings, which ADAPT routinely follows around the country. The non-profit AHCA, headquartered in Washington, is a key lobbying organization for nursing homes and other long-term health care facilities, representing about 10,000 of them nationwide. At issue for both `groups` is the way the federal government spends it health care money. Nursing home executives would like to see long-term health care policies reformed. ADAPT members want a share of the federal dollars going to nursing homes now. “They're not looking at the real issue, which is long-term health care financing," Linda Keegan, an AHCA vice president said of ADAPT. “One of the biggest issues we face today is long-term health care financing reform." Among the issues her organization will address throughout the week will be ways in which the government can devise a long-term health care policy and meet the needs of elderly and disabled Americans, she said. But ADAPT's members see billions of dollars currently flowing into long-term health care facilities and would like to have 25 percent. This way, they say, the disabled would be kept out of special care homes and living independently. ADAPT sees using money allocated through the state and federally administered Medicaid program for in-home health care aides. The aides would be paid to cook, drive and do chores for people who are blind, have lost the use of their limbs, or suffer other disabilities. “The issue is the right to independent living," said Ida Unsain, director of home health care at ADAPT‘s Denver headquarters. “People with disabilities are being admitted into care homes. Some of these individuals don't belong there and could be taken care of through home health. The current structure of reimbursement is slated toward care home industries, and what ADAPT is stating is that a percentage of that budget be allocated to states for independent care for the disabled." In 1989, the most recent year federal figures are available, the federal govemment paid $23 billion in nursing home costs through the Medicaid system. Another $23 billion was paid by a combination of family assets, Veterans Administration benefits and private insurance to meet additional nuising home costs. In Florida, nearly $850 million is paid to nursing homes from a Medicaid budget of about $4 billion, By 2020, federal officials estimate Washington's contribution to nursing homes will be $100 billion if the nation maintains the current Medicaid payment system. Lack of a long-term health care policy that will carry the nation into the 21st century has been as big a problem for established `groups`, such the AHCA, as it has been for patients. President Bush repeatedly has said that a long-term health care policy is an administration goal, but a plan that meets the needs of both the elderly and disabled has yet to be approved. ADAPT's Unsain said her group does not want to wait for the administration to produce a new long-term health care policy. Money may not be allocated for them in a new health-care pie, she said, and that's why ADAPT members are seeking money now. “The violence is part of the outcome," Unsain said. “lt's what happens when we try to express our views. It's not what we're all about." She attributes passage of last year's federal Disability Act mandating increased access for the disabled on public transportation systems, and in buildings, to ADAPT's militancy throughout the 1980s. Keegan of the nursing home association said ADAPT members, who stage protests every time the AHCA meets, are not concerned about changing the way the government finances long-term care. “I think the reason they follow us is because they are looking for attention, and the method they've chosen to got mention is confrontation and disruption.“ she said.
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Title: Deputies prepare for protesters by Christopher Quinn of the Sentinel Staff [This articles continues on 687 but the entire text of the article is included here for easier reading.] PHOTO [AP file photo]: A guy in an ADAPT T-shirt sits on the sidewalk in front of a set of glass doors. His knees are bent but together and his feet are out to each side. His mouth is slightly open and he is wearing a hat. Behind him, through the glass a group of security men are standing holding the door handles and conferring. Caption: A disabled activist sits outside a casino in Sparks, Nev., in an '89 protest. Orange deputies are studying videos of the event. Title: Disabled activists plan to disrupt a convention of nursing home operators. In city after city since 1983, wheelchair-riding activists have climbed from their chairs, dragged themselves along the ground, halted traffic and chained themselves to buildings. On Sunday they’re coming to Orlando. They intend to be arrested, and the Orange County Sheriffs Office plans to accommodate them. Deputies have spent the past month gathering information on how to handle the protesters. "This isn't a win situation. No one wants to arrest paraplegics,” Sheriff Walt Gallagher said Thursday. “But I have to enforce the law.” The activists are members of ADAPT (Americans Disabled for Attendant Programs Today) and they plan to disrupt a convention of nursing home operators. The members believe the federal government spends too much money on nursing homes and too little helping the disabled live at home. The protest is aimed at the American Health Care Association, which is holding its annual meeting Sunday through Thursday at the Orange County Convention and Civic Center. “We want to make life miserable for them," said Mike Auberger, a quadriplegic who cofounded the group and now fights nursing homes. Auberger said the group will try not to inconvenience anyone but convention delegates. He said the convention is a prime target for his group because it is the only place so many nursing home operators gather. The protesters want 25 percent of the federal money spent on nursing homes shifted to home care for the disabled. Law enforcement officials who have dealt with the protesters in other cities say the group's main goal is favorable television coverage. “They'd like nothing better than to have the local media take a picture of three or four big cops taking a guy to the ground.” said Bob Cowman, a lieutenant for the Sparks, Nev., police. Members of the group descended on Sparks, a city near Reno, in 1989. They were stymied, however, when police methodically stopped the activists from disrupting a convention. Sparks officers gently arrested anyone who broke the law. When members threw themselves to the ground and crawled across streets, hoping to be picked up and hauled off to jail, police just watched, frustrating the protesters. The Sparks methods for dealing with the group’s tactics have become the standard other agencies emulate. Orange deputies have spent hours watching videotapes of the Sparks protest. The tapes show legless protesters throwing themselves out of their wheelchairs and walking on their hands across streets. “Members have been known to throw their colostomy bags at the Police,” says a Sparks report on the protest. Auberger said that’s just not true. The Sparks convention and protest were smaller than what is expected in Orange County. The Sparks convention involved 500 delegates and around 100 protesters. The convention here will involve more than 3,000 delegates and more than 300 protesters. “We’re as prepared as we’re going to be,” said Sgt. Jon Swanson, head of sheriffs intelligence. Today a wheelchair-bound consultant will teach deputies how to arrest the disabled without hurting them or damaging the wheelchairs. Starting Sunday a riot squad will be at the convention center 24 hours a day. If the disabled protesters attempt to block traffic or center entrances, 120 deputies will be on hand to make arrests. The county will have to pay as much as $200,000 in overtime. “One hundred and twenty cops isn't going to do it," Auberger said. “That's not enough per person." The cost is in addition to whatever Orange jail chief Tom Allison spends housing arrested activists and tending to their medical needs. Allison said he’s ready to handle hundreds of prisoners in wheelchairs. Swanson and Allison said they hope any activists who get arrested stay in jail a few days. Bonds will be set at $500 for the misdemeanor charges the protesters usually face. Because the activists are from out of state, bail bond agents will be unlikely to help, said John Von Achen, president of the Tri-County Bonding Association. When members have been arrested and freed without bond in other cities, they have immediately returned to the protests to be arrested again. “We don't want to get into a scenario where we arrest them, release them, arrest them, release them, arrest them, release them,” Allison said. Auberger said there is another way: “Not to arrest any of us.” The headquarters hotel for the convention is the Peabody Orlando, across from the convention center, but some delegates are staying up the street at the Clarion Plaza Hotel. The protesters have reserved 90 rooms at the Clarion. The convention schedule calls for delegates to be in seminars at the convention center or in training at Walt Disney World on Sunday and Monday. Auberger said his group might stage a protest at Disney. On Tuesday morning, however, Red Cross president Elizabeth Dole will address the convention. Television weatherman Willard Scott will speak Wednesday. Swanson said the protesters might save their big protest for the speeches. Cowman, the Sparks lieutenant, said Orange deputies just need to expect the worst. “Some of them are basically professional protesters,” he said of the group’s members. But they are severely disabled, and Sparks officers repeatedly offered to help the activists. “You can’t help but feel sorry for these people," Cowman said.
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Disabled occupy Morehouse office ATLANTA (UPI) — About 60 wheelchair-bound protesters occupied the Morehouse College president’s office Monday, demanding a meeting with Health and Human Services Secretary Louis Sullivan. The group, American Disabled for Attendant Programs Today, or ADAPT, targeted the predominantly Black college for the demonstration because Sullivan is a former president of the Morehouse School of Medicine. The disabled protesters hoped Morehouse officials would use their influence to arrange a meeting with Sullivan. Morehouse spokesman Robert Bolton said the college’s president was trying to decide on a response to the situation, and was discussing what to do with Health and Human Services officials. ADAPT wants Sullivan to redirect 25 percent of Medicaid’s $17.5 billion nursing home budget to programs that would provide home care for the disabled. “People commit suicide, they die in nursing homes because they don’t have attendant care,”' said Michael Auberger, an organizer of the demonstration. Auberger said ADAPT was not asking for more money. Instead, the group wants funds reallocated to community programs, so disabled people can live at home with assistance. “We’re not talking about nurses,” said Auberger, who is wheelchair- bound. “Typically, most disabled people aren’t sick. For instance, I mostly just need help getting dressed and getting in my(wheelchair). “A national attendant service program would allow people to conceivably become employed when they otherwise wouldn’t" he said. Auberger said ADAPT sent a letter to Sullivan in July requesting a meeting, but had received no response. Dozens of protesters have come to Atlanta from 22 states and as far away as California for a week of demonstrations to dramatize the plight of the disabled.
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Different TIMES, September 24, 1990, p. 6 ADAPT fights for attendant services (Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.) [This story continues on 623 but the text is included here in full, for ease of reading.] “People with disabilities have the civil and human right to dependable attendant services that meet our daily needs in the location and manner of our choice." This simple declaration, made in Denver this summer, signaled the offensive being launched by ADAPT against “the nursing home lobby feeding off peoples' lives." It's ironic, says ADAPT member Mark Johnson. "Here we've finally got our rights now, in a law, and here you have more and more severely disabled people wanting to kill themselves—literally kill themselves—because they're being forced into nursing homes." “That Ken Bergstedt in Nevada [who petitioned the court in May to disconnect his respirator] is literally saying, “l'll end my life before I'll go in a nursing home," Johnson said. “What do you expect when people only have institutionalization to look forward to?" adds actress Nancy Becker Kennedy, one of the group that conducted a hunger strike in Los Angeles in July to protest the cut of California’s In Home Supportive Services. “Their attempts to stay in their homes are thwarted." lt’s the same with Georgia's highly publicized Larry McAfee, who was just put into a “group home," says ADAPT. Even after all the publicity, the State of Georgia will not put any money into funding attendant services in one's own home. And ADAPT is fed up. Recalling the phrase the transit industry used to argue that each city should decide whether or not to put lifts on buses, ADAPT calls the patchwork system of funding in-home services “the old ‘local option’ stuff all over again." “We're sick of it,"says Johnson. There needs to be a national commitment. In California, activists battled for several months to restore their In Home Support Services program which had been entirely cut from the state budget—and succeeded only in restoring it to its former level, which allows a disabled person to hire an attendant only at minimum wage and for no more than eight hours a day. People who need an attendant around the clock, like Ken Bergstedt, have little hope of avoiding a nursing home even in California, often cited as the state with the best attendant services program in the nation. Yet such battles sap the energy of disability activists for the larger fight for a national commitment. ADAPT has modified its former name, “American Disabled for Accessible Public Transportation" to “American Disabled for Attendant Programs Today" to reflect its new focus. ADAPT says attendant services are a right. The group wants the program it's calling for to make attendant services available "based on functional need" rather than “whether a person can work or not." They don't want "employability" to be a "condition for getting services. And they don't want eligibility based on any specific disability, as it is in many states now. They want it to be available “to people of all ages, 24 hours a day, seven days a week, with back-up emergency services."They stress they're not asking for “someone to hold your hand" but are speaking of the realistic needs of people like McAfee, Rick Tauscher, and Bergstedt who need an attendant available around the clock. They also say a program that allows the disabled person maximum control over an attendant is mandatory. Maybe a disabled person won’t want that control; maybe they'll want someone else to handle the paperwork and hiring decisions. That should be the disabled person‘s option, they say. There’s a quality-control issue here, they insist; they want to make sure disabled people get quality care but are allowed maximum say over personal services they receive—which is all too often not the case today as home "health" agencies muscle their way into the home "care" field. They‘re sick of the word “care.” They want a program that doesn’t keep anyone from services because they make too much money; they're willing, they say, to deal with a sliding scale for fees for such a program; but they want it available to anyone who needs it—regardless of income. It's a right, and cost is simply not an issue, they say. Keeping disabled people in institutions is ludicrously more expensive than providing in-home services in this country today. They blame that lack for the problems Larry MeAfee's constantly found himself in; they blame the nursing home industry for siphoning off the money that could go to fund such services. And they charge that home health agencies are nothing more than “the new nursing homes." Home health agencies “take people on Medicare and give them services and then bill them for $60 a pop," says ADAPT organizer Wade Blank. “Then when their Medicare coverage runs out after six months, they drop ‘em." The group says it’s also targeting “the big insurance companies like Prudential" and health maintenance organizations, who they say have a vested interest in keeping the system like it is. “We're saying that ethically and morally, nursing homes are not the place to go," says Blank. “When I see my severely disabled friends, living in their own homes, when l visit them in their apartments, listen with them to records or order in a pizza—and then I see my friends living in nursing homes, wasting away, waiting to die, I get very, very angry,” said Southern California ADAPT member Lilibeth Navarro. A survey of ADAPT members through their newsletter, Incitement, led them to decide to shift the focus to attendant services, said Navarro. And they're emphatic about the term too. “It’s not ‘attendant care‘ anymore," said Blank. “Whenever anybody said ‘care’ everybody booed,“ he added. It is fitting that ADAPT, whose original members came from Denver‘s Atlantis Community, will focus on attendant services. It was that need which led to the start of Atlantis, a “community” of disabled people and attendants. Atlantis “has a neat system,"agrees Navarro, noting that the 24-hour rotary attendant services allows any Atlantis person to have an attendant available whenever it's needed. “We could call an attendant at 11:30 p.m. and have somebody here," she said. “People who are having trouble with attendants can call and get an emergency back-up." Navarro, like others, said she knew of people “who endured abuse because they were afraid to lose their attendant"—"because it's so hard to find somebody, and nobody to turn to in an emergency situation." She related the story of a man whose attendant simply walked out on him and left him, unable even to reach a phone, for four days. “If his father hadn't checked on him, he'd be dead." “Only a national attendant program," she stressed, “will free us from emotional slavery Nancy Becker Kennedy agreed with Navarro. “The linchpin for independent living is in-home attendant services. It’s humane; it gives us a future." The group has sent a letter to Health and Human Services Secretary Louis Sullivan demanding a meeting in Atlanta Oct. 1; they've given Sullivan until Aug. 15 to reply. ADAPT activists from around the nation will descend on Atlanta the first week of October to launch the fight. They’ll be calling for a quarter of the money now going to the nursing home industry to “go into a pot for attendant services." As usual, ADAPT doesn’t expect this to happen without a fight -- primarily from the “nursing home lobby.” “This October," says Blank, “we will serve notice on those groups who are the enemies of a national attendant services program." TEXT BOX: ADAPT will converge on Atlanta — home of Morehouse College, HHS Secretary Louis Sullivan’s alma mater — on Sept. 28 for week-long direct action protest and training. Nationally known organizer Shel Trapp will conduct the session Saturday, Sept. 29. For more information on travel and hotel arrangements, contact ADAPT in Denver at (303) 936-1110. — Reprinted with permission from the Disability Rag; Box 145; Louisville, KY 40201.
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Edition USA/Colorado ADAPT seeks home care for all by Kerri S. Smith A national disabled persons’ advocacy organization based in Denver has launched a campaign aimed at moving people from nursing homes to home care. American Disabled for Attendant Programs Today (ADAPT) has at short-term goal: to re-direct 25 percent on the government's annual nursing home care budget. That money—estimated at $5.5 billion federal money and $5.5 billion from state coffers-would fund a national home care program instead. Under the ADAPT proposal, nursing home residents whose care is covered by Medicare or Medicaid could live at home. The government would pay home are attendants to care for them, rather than paying the facility. ADAPT spokesperson Mike Auberger said the group seeks “the ultimate demise of the nursing home system," and contends that paying an attendant to provide home care for a person usually costs less than nursing home care. In theory, the ADAPT plan would spend government money more efficiently-the same money would be used to care for more people who need assistance. The government is not enthusiastic about the idea, and a local nursing home industry spokesperson said ADAPT's demands are unrealistic. Auberger said Health and Human Services secretary Louis Sullivan declined to meet with ADAPT representatives. "We've been going back and forth with them, and the outcome is he doesn't meet with radical groups," Auberger said. And Arlene Linton, executive director of the Colorado Health Care Association (CHCA), said moving nursing home residents out of facilities “would isolate many of them from the community. “They'd also be without the 24-hour-care and rehabilitative services provided in nursing homes," Linton said. CHCA is the local branch of the American Health Care Association, which represents the nursing home industry. Linton added that ADAPT "is talking dollars, not people. Some residents have outlived their family and friends, and need the support a nursing home offers." A national campaign to publicize ADAPT's proposal began Jan. 15. Members demonstrated at government offices (including Health Care Financing Administration offices) and nursing homes in 24 cities. Auberger said media coverage was minimal, due to the Persian Gulf Crisis. Locally, ADAPT representatives demonstrated in Lakewood at Bethany Care Center. In the mid-'70s, the facility was operated by different owners and was known as Heritage House. Conditions at that time sparked a 13-year lawsuit over nursing home residents’ rights. The Federal Omnibus Reconciliation Act (OBRA) of 1988 also addressed quality of life issues for nursing home residents. The bill became effective Oct. 1, 1990. ln 1974, former Heritage House residents joined with Denverite Wade Blank and others to form the Atlantis Community, a local home care agency that currently cares for 135 people in Denver and Colorado Springs. Later, Atlantis Community leaders founded ADAPT. The group mobilized the civil rights movement for disabled persons, and ultimately affected the way nursing homes are inspected and regulated nationally. Auberger claims many current nursing home patients don't require intensive medical care, and "end up there only because they're out of money or their families can't care for them." Linton said CHCA met with ADAPT representatives twice to discuss the attendant proposal, "but they rejected our request to form a task force to find common ground." While Linton endorses home care as “a part of the long-term care continuum," she called the ADAPT proposal “robbing Peter to pay Paul. "We cannot support the concept of lowering funding for nursing home patients, to set up another funding to attendant services," Linton said. “We need new, additional funding for that." Recent federal budget cuts may make additional funding unlikely, at least in the near future. Atlantis and ADAPT are determined, however, and they are prepared for a long campaign.