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+ attendant services 5
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"
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This Brain Has A Mouth (The Mouth) Jan/Feb 1991 PHOTO by Gary Bosworth: A small neat looking white woman in a motorized wheelchair, Cindy from Mass., sits in a revolving doorway. Wrapped loosely around her shoulder, wheelchair and the door frame is a long metal chain. She has a poster sign across her legs, but in the photo it is too dark to read. On her left side and slightly in front and partially in the picture, another small neat looking woman in dark sunglasses, Lillibeth Navarro, sits in her chair and appears to be talking over her shoulder. Below the picture is a text box that reads: In March of 1990, 104 members of ADAPT were arrested in the Capitol Rotunda for lobbying the old-fashioned way — with their stubborn bodies and loud mouths. Four months later President Bush sent a personal invitation to every one of those arrestees to attend the ceremonies at the signing of the Americans with Disabilities Act in the White House Rose Garden. ANGER can make you a hero, or put you in jail, or both. written and photographed by Gary Bosworth. I was one of 200 people with disabilities who converged on Atlanta three months after the historic ADA was signed, to raise the banner of ADAPT’s new demand: a clear-cut national policy on attendant service programs. The lack of basic attendant services keeps one million disabled Americans imprisoned in nursing homes when they could be full-fledged, contributing members of society. While it costs $30,000 a year to keep one of us in a nursing home, the cost of providing attendant care services for the same person is $4,000 to $6,000 a year. In an ever-deepening federal budget crisis, ADAPT’s simple proposal will cost not a single penny, but simply redirect 25% of the funds currently spent on nursing home care. Attendant services in fact save money and cut the deficit by allowing all Americans — not just the able-bodied — to be productive workers, taxpayers. October’s action for disability rights at Morehouse College in Atlanta was the national kickoff for this vital issue. Morehouse College’s most famous graduate is Martin Luther King, Jr. Our protest there followed in King's grand tradition of non-violent passive civil disobedience. Morehouse College is also the alma mater of U.S. Secretary of Health and Human Services, Louis Sullivan — the man with the power to push for a new national policy on attendant services. ADAPT had written to Secretary Sullivan months in advance, asking for a meeting. Sullivan was scheduled to be in Atlanta the week before. ADAPT asked for an hour of his time. Sullivan did not respond. More than fifty of ADAPT’s demonstrators took over the President's office at Morehouse College for the night of October 1st. A young boy saw news of our protests on TV that evening. He stayed up late into the night to make a sandwich for each demonstrator, pack each sandwich into a bag, and write on every bag: "You are my Hero." The boy and his mother delivered those hero sandwiches to the demonstrators the next morning. When we returned from the college, street vendors along the route stood up and applauded our wheelchair parade. At another protest in Decatur, Georgia, traffic stopped several times on a four-lane highway while the drivers honked their horns in support of the issues we raised. On October 3, we forced the issue further, blockading the doors of the Federal Building. [See photos...] During the four hours it took for the police to arrest 64 people with disabilities who were blocking the entrance, one police officer took a break to speak with a woman in a wheelchair who waited to be loaded onto the arrest bus. The cop said that his wife had just suffered a stroke. Because there is no attendant services program in Georgia, he expected to see his wife go into a nursing home — against both their wishes — within the next six months. The woman he had arrested told him that's why she was demonstrating: to speak for people like his wife who couldn’t speak out themselves. After the woman was loaded onto the arrest bus, the policeman asked to hold her hand. She reached out the window. He took her hand. Then he cried. Please, let us all put our anger into action and speak out for attendant services. Whatever happens — jail or heroism or both — we're going all the way. PHOTO by Gary Bosworth: A group of about 7 protesters, all but one in wheelchairs, stand in front of the mirror glass walls and front door of a building. One person standing and one person in a wheelchair hold a giant ADAPT flag behind a man in a wheelchair giving the power fist. Bob Kafka is sitting behind the flag and Cindy from Boston and another wheelchair user hold the end of the flag. The end Gary Bosworth has been active in disability rights for 8 years, is co-founder of Desert Access of Palm Springs, California, and member of the Board of Directors of Southern California ADAPT.
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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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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.
ADAPT (688)
[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.