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+ attendant services 2
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 (1)
[This continues on ADAPT 2 and 3, but the entire text has been included here in ADAPT 1 for easier reading.] [letterhead] Atlantis Community Inc 2965 west 11th avenue denver colo 80204 303 893 8040 [Headline] The Atlantis Story In June of 1975, Atlantis was born as an alternative to the lives that young disabled persons were being forced to endure in nursing homes and state institutions. Early in 1974, a group of concerned disabled people and able-bodied allies began educating themselves to the plight of the young disabled adult. They found that the majority of these young people (some as young as twelve) who were living in nursing homes were virtually trapped in a stagnating, paternalistic prison where civil rights were blatantly violated, medical care was poor and impersonal, and individual initiative and self actualization were hostilely discouraged. The group that later became Atlantis began looking for alternatives to the prejudiced, dehumanizing lives these young people were seemingly doomed to continue. The first attempt was to create a special youth program in a nursing home, the object of which was to provide normalizing educational and social experiences. The program was to a large degree successful in terms of individual liberation, but it soon became apparent that the humanistic goals of the Atlantis group were in direct conflict with the profit making motivation and paternalistic traditions of the nursing home industry. It was then that the Atlantis Early Action Project was conceived - early in 1975. The goals were clear: to allow every disabled individual, regardless of the extent of her/his disability, the same rights and responsibilities of their able bodied peers - the freedom to choose a lifestyle and fulfill personal goals in education, employment, and personal growth, and freedom from a punitive traditional system that stigmatizes the disabled and segregates them from the mainstream of society. The planning started in January of 1975. Public housing units were leased from the Denver Housing Authority in the Las Casitas Development. Funds from the Colorado Division of Vocational Rehabilitation were secured to renovate the apartments and make them accessible to wheelchairs. In June, the first eight residents moved in. All were former 'patients’ in nursing homes, all had the courage and the desire to live on the outside. In a little over two years, Atlantis has grown from eight residents and a volunteer staff to an attendant staff of forty individuals and forty participants/residents. Seventeen of the residents presently live in the Early Action site, which has become a transitional living center, the remainder live in private sector apartments throughout the city and receive services from Atlantis. Traditionally the young disabled person has been denied the right to an adequate education or meaningful employment and has been sent to nonaccredited, segregated ‘special’ schools or to sheltered workshops to count fish hooks or untangle old phone cords for five cents an hour. Those who reside in nursing homes are often provided with no programming at all. At Atlantis, we try to assist the individual in fulfilling whatever goals s/he outlines. At the present time, residents are attending Denver Opportunity School, Boettcher School, and several of the area colleges. In addition, a constitutional law suit has been initiated by an Atlantis resident in an attempt to change existing laws which deny equal educational opportunities to the disabled. With funds from the Denver Opportunity School, Atlantis operates an Adult Education Center which offers individualized courses in remedial basic skills, speech therapy, and Braille. In an employment and basic life enrichment program financed by the Colorado Division of Vocational Rehabilitation, Atlantis provides a variety of employment opportunities to disabled persons and seeks out employment possibilities in the Denver-Metro area. In keeping with the Atlantis Charter, fifty percent of all positions at Atlantis are occupied by disabled individuals. Our experience has shown that merely providing housing and attendant services does not fully equip the disabled person coming out of an institution to lead an independent, self-directed life. For this reason, special programs have been initiated to aid residents in acquiring the skills necessary to take responsibility for their own lives. Home Training Classes, where residents meet in seminars and share ideas and skills, are held to teach how to organize and maintain an apartment. A Consumer Advocate teaches residents how to perform their own consumer activities such as budgeting money, using a checking account, and buying food and clothing. Other advocacy services available include a twenty four hour a day Crisis Hotline, a Financial Coordinator who assists individuals in getting their public assistance benefits, a Housing Information Service, a Legal Advocacy Service, and a Counseling Referral Service. Disabled persons are not 'sick' people. They do not require a 24 hour a day medical staff of nurses and aides to supervise their personal needs and social activities. What is needed is a consistent source of reliable assistance when they want it. In an attempt to break the traditional concept of home health care - Atlantis hires a pool of professionals who are trained and supervised by a Rehabilitation R.N. Attendant assistance is scheduled as it fits into individual routines and responds to individualized needs. Emphasis in health care is on teaching people to monitor their own - to be aware of their particular needs and be capable of getting those needs filled either self—sufficiently or with assistance. Staff is available on a twenty four hour a day basis in case an emergency arises, and can be reached by a call to the Crisis Hotline. The resident is responsible for scheduling baths, meals, etc. There are no rules governing any individual's mobility or social life. We uphold the right of the disabled to take responsible control over their own lives. Disabled people do have special medical needs. Nurses, attendants and physicians who work with them should have this specialized knowledge. The Atlantis attendant staff is trained in areas of special health concern such as skin, bladder and bowel care, and routine medical needs. Atlantis makes full use of existing medical facilities, primarily the Denver General Health System. We are oriented toward rehabilitative activities and any person who has the desire for rehabilitation is given the opportunity to explore it. Many who were diagnosed at an early age as unrehabilitatable have shown tremendous progress when allowed access to therapists and equipment. It is our belief that any disabled person should have the right to choose where and how s/he wants to live. We believe that the same monies that are provided to house someone in an institution should be made available to those who wish to live independently. We are working to this end. At the present time, an institution in Colorado receives upwards of $600.00 a month in tax money to provide custodial care for a ‘patient’. That same person, once out of an institution, is eligible for maximum public assistance Payments of $402.00 a month to support her/himself and purchase attendant services. Many receive less than the full amount. We can find no valid justification for this huge discrepancy which results in the taxpayer supporting the highly lucrative nursing home industry and discourages the disabled and elderly from pursuing independent and meaningful lives. Our philosophy envelopes the ideas of individual liberty and opportunity, and we are aware of the process that must take place. Liberation from the stagnation of institutional life needs to be coupled with a viable process by which disabled persons can integrate themselves into society as self-fulfilled, independent citizens. It is our hope at Atlantis that by bringing disabled persons together, they can, through shared energy and experience, teach and support each other in achieving freedom and growth.