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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.
ADAPT (27)
[Headline] Handicapped Pin Hope on Atlantis By Sharon Sherman Denver Post Staff Writer The word "activist' once scared a group of young Handicapped Denverites. But after almost two years of wheeling themselves onto picket lines, sitting through meetings with government agencies and speaking out about the problems of being shunted out of the mainstream of society, they agree that the term activist describes what they have become. And they are proud of it. "At least we're actively trying to do what we can instead of sitting back and wishing', is the way Carolyn Finnell, 31, sees the new role of many physically handicapped young people. [Subheading] Buses for Handicapped Carolyn, and others like her in the handicapped community, helped convince the Regional Transportation District to begin adding buses equipped for the handicapped. They have testified at various hearings about problems of the disabled. [TEXT UNREADABLE] They are among the principal planners of the Atlantis Community, a project which would offer the physically handicapped many types of residential living arrangements with services they need available nearby. Carolyn, who has cerebral play which confines her to a wheelchair and distorts her speech, said it was hard to "face speaking out" to rooms full of strangers, but that living with other young adults at Heritage House Nursing Home youth wing has "brought me out a lot." [Subheading] Stayed Inside Shell If Mike Smith, 20, had had his way, he would have stayed inside his shell of poetry writing, reading, and discussing philosophy and listening to music. "I don't like being in politics, but it seems that's the way we have to go,'' Mike explained. " I guess you have to lose a little to get a lot.'' Linda Chism, 27, believes that for the first time, there are enough young disabled people ready and willing to push themselves forward, to speak out, that there is a chance of changing the entire lifestyle of the handicapped. For Mike Smith, those changes may come too late to be enjoyed. [Subheading] Depressed, Angry Mike has muscular dystrophy, a fatal disease. He has spent the past five years in nursing homes, living in one where, at 15, he was punished for breaking rules and being sent to the locked ward for 24 hours at a time. Finally, lonely for friends his own age, depressed at watching his elderly roommate die of cancer, angry at rules which confined him to the small world of the nursing home, Mike attempted suicide. "Luckily, I had no idea how to go about it," he remembers. "I took 20 bowel softener pills and instead of dying just created an incredible mess." For Mike, as for Carolyn, the youth wing at Heritage House is infinitely better than what they had before. But, Mike points out, once the first door that closes any human being away from the rest of the world is opened, that human being will see other doors to open. So it has been for Carolyn, who counted fishhooks for five years in a sheltered workshop before someone recognized her potential. [Subheading] Wants Meaningful Job Now, with a degree in journalism from Community College behind her, Carolyn wants some other things she's not getting out of life. Things like a meaningful job, an apartment of her own where she won't have to keep half her belongings in boxes under the bed, the privacy to entertain friends. "I'm probably living a more active life than I ever have before", she said, explaining that she now edits the youth-wing newsletter and is learning braille so she can tutor blind students. Having come so far, Carolyn's not willing to stop here. Neither is Linda Chism, who has had crippling rheumatoid arthritis for 20 years. Linda has "suffered a lot of surgery and a lot of hard, hard therapy" to become fairly mobile. She has taken three years of courses in biology and psychology at the University of Colorado. She was even offered a full-time job. [Subheading] System Inflexible But the system doesn't allow even the disabled who are capable of supporting themselves to do so, Linda said. If she was paid even minimum wage, she would earn too much and would lose her Social Security benefits. But it would take much more than a minimum wage salary to pay living expenses plus the $150 a month it would cost her to get to work and back. In addition, she would no longer receive Medicaid assistance, and medical bills for someone in Linda's condition are enormous. "Who's going to pay a beginner with no experience that much money?" she asked. [Subheading] Innovative Projects For now, for these and other physically handicapped young adults, the boundaries of their world still don't go far beyond the nursing home walls. But those boundaries will expand dramatically if the young disabled can find support for two innovative projects. One is Project Normalization, a one year pilot study to find out what services young people in nursing homes need to live as normal a life as possible. The project would be conducted at the young wing of Heritage House and is estimated to cost $241,872. The state Department of Social Services has suggested that the pilot project be run by the Department of Physical Medicine of the University of Colorado Medical School. Members of the department now are investigating that possibility. [Subheading] Denied Normal Life "Disabled people are often denied any resemblance of a normal life," the project introduction says. "Because of the segregation they encounter, and the sheltered nature of their early lives, when they reach young adulthood they are incapable of functioning satisfactorily in society and so are banished to nursing homes where the repressive, nonstimulating and socially undemanding environment serves only to multiply their social inadequacies and further depersonalize them. As its creators see it, Project Normalization would begin to to prepare handicapped young adults for the kind of independent living they hope Atlantis will someday offer. [Subheading] Create a Community Atlantis is an ambitious project, planned by a group of both handicapped and able bodied persons, which would create a community of residential units surrounding a hub housing medical, rehabilitative employment, counseling, homemaker, transportation, food and social services. The goal of the community will be to "provide needed services while respecting the individual resident's freedom and privacy," according to the project booklet. For some of the prospective tenants of Atlantis, that goal can't be realized too soon. "I just sort of wish they'd hurry, " said Mike Smith. "Some of us have fatal diseases, you know, I only have two or three years to wait. "