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Trang chủ / Đề mục / Thẻ Medicaid
+ independent living 4
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.
ADAPT (37)
The Denver Post August 29, 1976 PHOTO: A woman (Carolyn Finell) sits in her wheelchair turned sideways, relaxed, facing the camera. Her arm is slung over the backrest, and she is beaming. New Key Fulfills Residents' Dreams (continued from page 36) and the other four Atlantis residents to go out on their own without state support for a proposal advanced by Atlantis. That proposal was presented in June to Henry A. Foley, director of the Colorado Social Services Department. Foley's response was enthusiastic according to Wade Blank and Glen Kopp, co-directors at Atlantis. And as a result, Foley set up a pilot project which will go until the end of 1977. Simply stated, the project involves Atlantis'creation of an expanded staff of attendants to provide necessary services to the disabled in their apartments and homes as well as at Atlantis. And the state medicaid fund will pick up the difference between government cost for attendant services and the amount of funds that actually are expended to provide the disabled with necessary care as certified by a physician. Blank explained that the government pays an average of $575 monthly for a severely disabled young adult living in a nursing home. If the disabled person moves into his own apartment he receives $186?[text is blury] monthly from various governmental sources to pay for his rent, food, telephone and personal needs. And a county social services department may provide an additional $40 to $217 monthly to the disabled person for attendant services. But quite often, Blank said, even the maximum of $217 monthly doesn't cover the attendant services needed. And qualified attendants may not always be available, he noted. The cooperative program between Atlantis and the state might remedy those shortcomings and might cut government expenditures for the disabled substantially, Blank said. If the program is successful, Blank said, it could be expanded statewide for the disabled. Eventually, he added, the program might be extended to the state's elderly persons to keep them in their own homes and apartments, rather than placing them in a facility outside the home. Equally elated over the program is Mary Joyce, who is Jeannie's mother. Mrs. Joyce and her husband, Joseph, came to Denver last week from their home in Scarborough, Maine and were with Jeannie when she first viewed her apartment. “It's a pretty wonderful step" Mrs. Joyce said as she watched her daughter move in her wheelchair through the apartment. "We can't believe the strides she'd made in the last two years with her determination to live on her own and take care of herself." To two other Atlantis residents, George Roberts and Don Clubb, the move to their own apartment is "a pretty big change." Born with cerebral palsy, George, now 28, was left as an infant at the door of an adoption agency in southern Colorado. George then was placed in a state home and training school where he remained for 21 years - a period he describes as "all my life." He also spent more than four years in a nursing home before being accepted at Atlantis in June 1975. Don, who soon will be 20, lost both legs as the result of a slide down a mountainside when he was six years old. For about 10 years, Don was in state home and training schools. And for the past five years, he has been in a nursing home. He, too, is confined to a wheelchair. Last week, as George and Don viewed the apartment they will share in north Denver, they seemed to invest the nearly empty rooms with an almost magical air. "It's wonderful," George said over and over. Carefully, he moved his wheelchair up to the electric stove and inspected the oven. In the bedroom, he was jubilent as he examined the heating and air-conditioning controls. And almost reverently, he opened and closed the sliding doors of a large bedroom closed. Don spoke quietly but with no less enthusiasm. "It's a very nice place - the first place of my own," he said. He smiled in the direction of the outdoor pool and said he swam very well and would teach George. Also preparing to move into an apartment they will share in south Denver are two other Atlantis residents, Carolyn Finnell, 33 and Nancy Anderson, 31. When she was 21, Nancy underwent surgery for removal of a brain tumor. For the next nine years, Nancy just sat in Denver area nursing homes unable to talk or walk, her body partially paralyzed. At that time, doctors said Nancy would be confined to nursing homes for the rest of her life and would never walk again. But since moving to Atlantis last summer, Nancy has been striving diligently in therapy sessions at Denver General Hospital. Working through the pain and the fatigue, she has learned to walk for up to 300 yards with the aid of a walker. And she has expanded her vocabulary to almost 10 words and is using a word machine in the new process of learning others. For Carolyn Finnell, who was born with cerebral palsy, there has been no easy or direct road to independent living. After finishing the ninth grade, Carolyn wasn't particularly encouraged to continue. But she was convinced and convinced others, that she was capable of further education. She obtained her GED, or general equivalency diploma, which is equivalent to a high school diploma. And she earned a degree in journalism at Metropolitan State College. But then there were the leaden days - four years in nursing homes "which didn't work out." Afterward, Carolyn came to Atlantis and her hope was reborn. Now, Carolyn is working in the Atlantis planning office and preparing plans for the education of the disabled. In her quarters at Atlantis last week, Carolyn said it was painful to leave so many behind when she left the nursing home. "But as we move out of Atlantis, it will make it possible for others to move in - and they never thought that was possible," she added. Looking to the future, Carolyn said she would like to return to school to obtain training so that she can tutor disabled persons who have never had an education. "There's a whole generation of disabled people who have been denied an education," she said. Carolyn stressed that she wasn't going to "wage a war against nursing homes I'm willing to live and let live." But she obviously was emotionally affected as she said, "I never realized until I got out of a nursing home that for a young person, it's a living death: You really have nothing to live for...nothing to do but just sit. Many disabled persons, Carolyn noted, attend Opportunity School and Boettcher School in Denver. "But I know for myself," she said, "I didn't have any faith in my ability to work." "But I've been involved in Atlantis planning," she said as a smile swept across her face and she threw out her arms, embracing the air. "I've gained faith in my ability and I'm started to get ambitious." Her next words came slowly, with triumphal emphasis: "I....just....feel....alive!"
ADAPT (34)
The Sunday Denver Post - August 29, 1976 [This article in continued in ADAPT 37, but the entire text is included here for easier reading] [Headline] Denver and the West Denver Post Photos by Ernie Leyba, Photo 1 (top left): Two hands gently hold a key. Photo 2 (on right): A young woman (Jeannie Joyce) in a manual wheelchair sits next to a floor lamp, and beside her kneels an older woman (Mary Joyce). Jeannie is looking up and her mother is looking forward to the right. Both are absolutely beaming. Captions (in middle) read: A key, left to a new apartment is a thing of joy to Jeannie Joyce, in wheel chair being hugged, at right, by her mother, Mrs. Mary Joyce, after Miss Joyce moved into her new apartment. [Subheading] Apartment Key Fulfills Dream for Five Atlantis Residents by Fred Gillies “My key!" Jeannie Joyce cried out exultantly, cupping a door key almost prayerfully in her hands and moving in her wheelchair room to room in the small apartment in south Denver. Jeannie's eyes sparkled and at times misted as she turned the wheelchair in one direction and then another. "It‘s my house," murmured Jeannie, 25, who has been confined to a wheelchair most of her life by a form of muscular dystrophy. Jeannie and four other residents of the Atlantis Community for the handicapped in Denver are taking a major step. They are moving from Atlantis into their own apartments as part of a pilot project that may become a model for the state. The move is supported by state officials who see it as an exciting extension of the Atlantis goal - making disabled persons more independent and providing a stimulating atmosphere in which they can realize their full potential. To Jeannie and the four other Atlantis residents, this move to their own apartment is “a dream come true." Jeannie shouted with joy last week when she saw her apartment - the first she has ever had. "I love it!" she said "it fits me because it's a little place and I'm a little person." But the road to this apartment was a long one. After living at home for her first 21 years, Jeannie entered a nursing home where she remained for more than three years. At the nursing home there was no particular program for Jeannie. Her only work was at a sheltered workshop where she counted fishhooks and placed them in packages and performed other simple and undemanding tasks. Slightly more than a year ago, Jeannie was among eight disabled persons who moved from Denver area nursing homes and became charter residents at the Atlantis Community, 2965 W. 11th Ave. At Atlantis, Jeannie began working as an operator on the telephone hot line which helps Atlantis residents and other disabled persons in metropolitan Denver find the services they need. In time, Jeannie was named supervisor of the hotline. Newly established in her own apartment, Jeannie will continue to work on the hot line at Atlantis. This is the way she always wanted it - her own home, a meaningful job and a wide-open future. But Atlantis officials have stressed that it wouldn't have been possible for Jeannie and the other four Atlantis residents to go out on their own without state support for a proposal advanced by Atlantis. That proposal was presented in June to Henry A. Foley, director of the Colorado Social Services Department. Foley's response was enthusiastic according to Wade Blank and Glen Kopp, codirectors at Atlantis. And as a result, Foley set up a pilot project which will go until the end of 1977. Simply stated, the project involves Atlantis' creation of an expanded staff of attendants to provide necessary services to the disabled in their apartments and homes as well as at Atlantis. And the state Medicaid fund will pick up the difference between government cost for attendant services and the amount of funds that actually are expended to provide the disabled with necessary care as certified by a physician. Blank explained that the government pays an average of $575 monthly for a severely disabled young adult living in a nursing home. If the disabled person moves into his own apartment he receives $186?[text is blurry] monthly from various governmental sources to pay for his rent, food, telephone and personal needs. And a county social services department may provide an additional $40 to $217 monthly to the disabled person for attendant services. But quite often, Blank said, even the maximum of $217 monthly doesn't cover the attendant services needed. And qualified attendants may not always be available, he noted. The cooperative program between Atlantis and the state might remedy those shortcomings and might cut government expenditures for the disabled substantially, Blank said. If the program is successful, Blank said, it could be expanded statewide for the disabled. Eventually, he added, the program might be extended to the state's elderly persons to keep them in their own homes and apartments, rather than placing them in a facility outside the home. Equally elated over the program is Mary Joyce, who is Jeannie's mother. Mrs. Joyce and her husband, Joseph, came to Denver last week from their home in Scarborough, Maine and were with Jeannie when she first viewed her apartment. “It's a pretty wonderful step" Mrs. Joyce said as she watched her daughter move in her wheelchair through the apartment. "We can't believe the strides she's made in the last two years with her determination to live on her own and take care of herself." To two other Atlantis residents, George Roberts and Don Clubb, the move to their own apartment is "a pretty big change." Born with cerebral palsy, George, now 28, was left as an infant at the door of an adoption agency in southern Colorado. George then was placed in a state home and training school where he remained for 21 years - a period he describes as "all my life." He also spent more than four years in a nursing home before being accepted at Atlantis in June 1975. Don, who soon will be 20, lost both legs as the result of a slide down a mountainside when he was six years old. For about 10 years, Don was in state home and training schools. And for the past five years, he has been in a nursing home. He, too, is confined to a wheelchair. Last week, as George and Don viewed the apartment they will share in north Denver, they seemed to invest the nearly empty rooms with an almost magical air. "It's wonderful," George said over and over. Carefully, he moved his wheelchair up to the electric stove and inspected the oven. In the bedroom, he was jubilant as he examined the heating and air-conditioning controls. And almost reverently, he opened and closed the sliding doors of a large bedroom closed. Don spoke quietly but with no less enthusiasm. "It's a very nice place - the first place of my own," he said. He smiled in the direction of the outdoor pool and said he swam very well and would teach George. Also preparing to move into an apartment they will share in south Denver are two other Atlantis residents, Carolyn Finnell, 33 and Nancy Anderson, 31. When she was 21, Nancy underwent surgery for removal of a brain tumor. For the next nine years, Nancy just sat in Denver area nursing homes unable to talk or walk, her body partially paralyzed. At that time, doctors said Nancy would be confined to nursing homes for the rest of her life and would never walk again. But since moving to Atlantis last summer, Nancy has been striving diligently in therapy sessions at Denver General Hospital. Working through the pain and the fatigue, she has learned to walk for up to 300 yards with the aid of a walker. And she has expanded her vocabulary to almost 10 words and is using a word machine in the new process of learning others. For Carolyn Finnell, who was born with cerebral palsy, there has been no easy or direct road to independent living. After finishing the ninth grade, Carolyn wasn't particularly encouraged to continue. But she was convinced and convinced others, that she was capable of further education. She obtained her GED, or general equivalency diploma, which is equivalent to a high school diploma. And she earned a degree in journalism at Metropolitan State College. But then there were the leaden days - four years in nursing homes "which didn't work out." Afterward, Carolyn came to Atlantis and her hope was reborn. Now, Carolyn is working in the Atlantis planning office and preparing plans for the education of the disabled. In her quarters at Atlantis last week, Carolyn said it was painful to leave so many behind when she left the nursing home. "But as we move out of Atlantis, it will make it possible for others to move in - and they never thought that was possible," she added. Looking to the future, Carolyn said she would like to return to school to obtain training so that she can tutor disabled persons who have never had an education. "There's a whole generation of disabled people who have been denied an education," she said. Carolyn stressed that she wasn't going to "wage a war against nursing homes I'm willing to live and let live." But she obviously was emotionally affected as she said, "I never realized until I got out of a nursing home that for a young person, it's a living death: You really have nothing to live for...nothing to do but just sit. Many disabled persons, Carolyn noted, attend Opportunity School and Boettcher School in Denver. "But I know for myself," she said, "I didn't have any faith in my ability to work." "But I've been involved in Atlantis planning," she said as a smile swept across her face and she threw out her arms, embracing the air. "I've gained faith in my ability and I'm started to get ambitious." Her next words came slowly, with triumphal emphasis: "I....just....feel....alive!" PHOTO: A woman (Carolyn Finnell) sits in her wheelchair. She is turned sideways, relaxed, facing the camera. Her arm is slung over the backrest, and she is beaming.
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. "