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+ attendant services 3
ADAPT (635)
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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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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THE HANDICAPPED COLORADAN Vol.9, No. 5 Boulder Colorado December 1986 [This article continues in ADAPT 259, but the entire text is included here for easier reading.] PHOTO by Melanie Stengel, courtesy of UPI: A large heavy set man with no legs (Jerry Eubanks) sits in his manual wheelchair in front of a city bus. He has a determined and frustrated look on his face. Behind him and up against the front of the bus you can see another protester in a wheelchair (Greg Buchanan). On either side of Jerry is a uniformed officer, apparently unsure of how to proceed. One stands with his hand on this hip, the other officer is on Jerry's other side and is looking toward the first policeman, as if for guidance. caption reads: ARRESTING DISABLED PROTESTORS poses some unusual problems for police as these perplexed officers found out during the ADAPT Detroit demonstrations. Title: Doing hardtime in Cincy During the demonstrations at the regional convention of the American Public Transit Association (APTA) in Cincinnati this May 17 protestors were arrested. Three of them, George Cooper of Dallas, Mike Auberger of Denver, and Bob Kafka of Austin, were sentenced to 10 days in jail. Wade Blank, founder of the American Disabled for Accessible Public Transit (ADAPT), said it was the first time in the history of the movement that any disabled persons had done “hard time. ” The following is Kafka's own account of that hard time. The article is reprinted from Incitement, Vol. 2, No. 3, a newspaper published by the Texas ADAPT chapters. By BOB KAFKA Wednesday, May 21, 1986 4:30 p.m.— One by one they haul us off, seventeen in all. We go through the usual procedures: giving name, address, next of kin, all our property, a list of our medications. We sign the papers, are fingerprinted and photographed. We go into the detention center for hours of waiting while the powers that be decide what to do with us. Handicapism raises its ugly head again as judge Albanese releases six ADAPT members on their own recognizance. His reason: medical problems. The real reason: he can't understand those with CP and Frank, the one blind man, freaks him out. We become the Cincinnati Eleven. 8 p.m.—Mike Montgomery, the “head keeper" at the Hamilton County, jail, has a dilemma: eleven people in wheelchairs and not one empty bed in the infirmary. Where to put us? The decision had obviously been made to keep us together and apart from the rest of the prison population. They convert a training classroom into what looks like a hospital ward without windows. Eleven WWII hospital beds are hauled in. Two guards are stationed with us at all times and, for some reason, three from 11 p.m. to 7 a.m. The accessible bathroom is down the hall. At first we are guarded each time we go to empty our leg bags; soon they realize we are not going to try the “great escape." The starkness of our surroundings is stifling: ugly green concrete block walls, gray tiled floors, buzzing fluorescent lights, and two clocks on the walls always counting time and exactly how long we have been in jail. Thursday, May 22 6 a.m.- The room is quiet. Without windows the difference between night and day can only be separated by the morning eggs and the changing of the shifts. We are a curiosity to our keepers. Faces peer in the doorway all morning to look at "the handicaps." ll a.m.— The doctor and nurse arrive to evaluate our "conditions," We again list our medications and the daily supplies we need. Two bladder infections, two decubitus ulcers, one strained back, and many who need assistance dressing, showering and toileting. They leave saying everything will be taken care of. (This is not to be.) 3 p.m.- The social work staff arrive. They are here to make sure we are treated OK, we have access to the library, gym and telephone, and to take care of any crises. (Again, this is not to be.) 4:30 p.m.- Joni Wilkens, our attorney, comes to discuss how we will handle our cases. We decide to stay together and not plea bargain. 6 pm.- It is obvious by now that we are not going to get our proper medication. Substitutes for drugs they don't have don't work. Those needing Valium are told it can't be dispensed in a jail setting. George again asked, to no avail, for his raised toilet seat and "booties" to protect his feet from sores. Mike asked about his bowel program. The nurse and guards give us only blank looks. 10 p.m.—Lights out. The guards assist those who need it. By the time we leave many of them will make pretty good attendants. Friday, May 23 6 a.m.-Lonnie went to the hospital late last night. His decubitus started to bleed and they rushed him over around l a.m. He came back around 3 a.m. and remained in bed all day. 12 p.m.- Boredom is starting to set in. George is rolling back and forth in the halls. Bill is constantly talking, which helps to keep us awake during the day. We fill out commissary forms, but as Joe predicts, we never see the items ordered. Lunch arrives, Mike has the guard melt his spoon so he can feed himself. He makes them do it each meal. George R. again devours his food. E.T. is lying in bed shivering from his bladder infection. 2 p.m.- Joni arrives with her partner, after a long session with the Cincinnati judicial system. The judge and D.A. will accept a plea of disorderly conduct and a fine of $60 (2 days already served) for the eight who were charged with disorderly conduct. They would go free. Lonnie's charge of resisting arrest would be dropped, but there are no guarantees for Mike, George and me. 4 p.m.- The eight are released, Mike, George and I receive 1O days, with credit for two served. Eight days to go. 9 p.m.- The room seems empty without the other eight ADAPT members. The guards kid about us being the hardened criminals. George continues to ask for his raised toilet seat, I for my correct medication and Mike about assistance with his bowel program. Again-no response. Saturday, May 24 7 a.m.-The library, gym, and telephone are not available on weekends and holidays. Monday is Memorial Day. We realize we will not have access to these amenities until Tuesday. Very much like a hospital stay. We also realize our medical needs will not be met; however, we continue our demands that something be done so Mike and George can get the help they need with their bowel program. Security continues to relay this to the medical staff. Medical staff continues to say it is security’s responsibility. This double think has been going on four days now, with no assistance given so far. 2 p.m.— George is beginning to have adverse effects from Valium withdrawal. Mike is having more and worse spasms because the substitute medications are not working. I have no idea if the substitute antibiotic is doing any good at all. Sunday, May 25 4 p.m.-The day passes as usual. Up at 6 a.m. with breakfast of cold eggs and boiled water that had looked at a coffee bean. After lunch our daily request for medication, supplies, and bowel program assistance is duly noted in the guard’s record book, but as usual no action. Joni and Art Wademan, a minister who has been invaluable throughout the week in Cincinnati, came about 2:30 p.m. We share our concern that if we don't get some assistance one or all of us might get very ill. They go to the supervisor and suggest that if medical is not going to act, then we should be transported to a hospital. Going to a hospital for a bowel program might seem extreme, but after five days, impaction is a real possibility. To our amazement, Mike is taken down to medical and then to the hospital. A raised toilet seat is borrowed from Good Samaritan Hospital. We are finally allowed to take our medications which are brought in from the outside. Monday, May 26 Memorial Day — a quiet day, a day for reflection. If non-disabled prisoners were prevented from relieving themselves for five days, it would be considered torture. Equality is as much a farce in jail as it is out of jail, maybe more so. Cincinnati's judicial and penal systems obviously feel it is fine to use a person's disability as a means of punishing that person. Documented omissions which place disabled people in potentially life-threatening situations don't raise an eyebrow, even from the defenders of justice or the media. Reports that the jail is well-equipped to handle our needs but that we will simply be “less than comfortable" go unchallenged. The fact that we have two people who care, who spend some time and resolve our problem, only highlights the injustice to those who do not have a Joni or an Art and must suffer because of ignorance of the needs of disabled persons. Tuesday, May 27 11:30 a.m.—-The court is two blocks from the jail. They usually transport the prisoners to the court by van for security reasons. We present a problem, since the van is inaccessible. They look to a supervisor, and after a half hour the answer comes down. Let the prisoners roll to the courthouse with a deputy sheriff guarding each of us. Babs, Tisha, Reverend McCracken, Art and Vivian (friends and family) are waiting in the hall. The guards hurry us into the courtroom. The media is out in force. As we wait, we wonder what the D.A. will do. Joni enters the room and her face is blank. Rubenstein, the D.A., is his usual arrogant self. Joni states that the six days served are both punishment and deterrent. Rubenstein surprisingly agrees, but asks the court to get our statement. Had we learned our lessons? He wants us to grandstand for the cameras and to get the judge mad at us again. Instead, we suppress the urge to yell "WE WILL RlDE" and simply state we will be returning to our homes and work. Cincinnati will be only a memory. Judge Sundeman accepts the motion to mitigate. We are free. 2 p.m.—We are sitting in Skyline Chili, a local restaurant, and talking over the last six days. Needless to say much of the talk is also about Detroit, October 5-9, our next battle with APTA. Spending six days in jail makes one think about commitment. Detroit will take commitment from us all, but . . . WE WILL RIDE! PHOTO 1: A close up of a man (Mike Auberger) with shoulder length dark hair and a short beard and mustache. He is wearing a light color sweater and shirt with a collar, and the chest strap from his wheelchair is visible. He looks very serious. Caption reads: MIKE AUBERGER Back in the slammer again. PHOTO 2: At least 4 policemen standing around a manual wheelchair in which someone (Bob Kafka) is being bent forward and something weird is happening with a pole (the picture is dark and hard to make out.) Caption reads: THE AUTHOR being arrested in L.A.