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+ attendant services + nursing homes 2
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 (634)
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.