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ADAPT (628)
Edition USA/Colorado ADAPT seeks home care for all by Kerri S. Smith A national disabled persons’ advocacy organization based in Denver has launched a campaign aimed at moving people from nursing homes to home care. American Disabled for Attendant Programs Today (ADAPT) has at short-term goal: to re-direct 25 percent on the government's annual nursing home care budget. That money—estimated at $5.5 billion federal money and $5.5 billion from state coffers-would fund a national home care program instead. Under the ADAPT proposal, nursing home residents whose care is covered by Medicare or Medicaid could live at home. The government would pay home are attendants to care for them, rather than paying the facility. ADAPT spokesperson Mike Auberger said the group seeks “the ultimate demise of the nursing home system," and contends that paying an attendant to provide home care for a person usually costs less than nursing home care. In theory, the ADAPT plan would spend government money more efficiently-the same money would be used to care for more people who need assistance. The government is not enthusiastic about the idea, and a local nursing home industry spokesperson said ADAPT's demands are unrealistic. Auberger said Health and Human Services secretary Louis Sullivan declined to meet with ADAPT representatives. "We've been going back and forth with them, and the outcome is he doesn't meet with radical groups," Auberger said. And Arlene Linton, executive director of the Colorado Health Care Association (CHCA), said moving nursing home residents out of facilities “would isolate many of them from the community. “They'd also be without the 24-hour-care and rehabilitative services provided in nursing homes," Linton said. CHCA is the local branch of the American Health Care Association, which represents the nursing home industry. Linton added that ADAPT "is talking dollars, not people. Some residents have outlived their family and friends, and need the support a nursing home offers." A national campaign to publicize ADAPT's proposal began Jan. 15. Members demonstrated at government offices (including Health Care Financing Administration offices) and nursing homes in 24 cities. Auberger said media coverage was minimal, due to the Persian Gulf Crisis. Locally, ADAPT representatives demonstrated in Lakewood at Bethany Care Center. In the mid-'70s, the facility was operated by different owners and was known as Heritage House. Conditions at that time sparked a 13-year lawsuit over nursing home residents’ rights. The Federal Omnibus Reconciliation Act (OBRA) of 1988 also addressed quality of life issues for nursing home residents. The bill became effective Oct. 1, 1990. ln 1974, former Heritage House residents joined with Denverite Wade Blank and others to form the Atlantis Community, a local home care agency that currently cares for 135 people in Denver and Colorado Springs. Later, Atlantis Community leaders founded ADAPT. The group mobilized the civil rights movement for disabled persons, and ultimately affected the way nursing homes are inspected and regulated nationally. Auberger claims many current nursing home patients don't require intensive medical care, and "end up there only because they're out of money or their families can't care for them." Linton said CHCA met with ADAPT representatives twice to discuss the attendant proposal, "but they rejected our request to form a task force to find common ground." While Linton endorses home care as “a part of the long-term care continuum," she called the ADAPT proposal “robbing Peter to pay Paul. "We cannot support the concept of lowering funding for nursing home patients, to set up another funding to attendant services," Linton said. “We need new, additional funding for that." Recent federal budget cuts may make additional funding unlikely, at least in the near future. Atlantis and ADAPT are determined, however, and they are prepared for a long campaign.
ADAPT (45)
Rocky Mountain News Mon., March 22, 1976, Denver, Colo. Banner Headline for story. PHOTO on left of headline: Head and shoulders shot of a young man (Michael Smith) with dark hair, pulled back in ponytail, dark beard and moustache. His head is tilted slightly to one side and he is smiling a bit. Caption reads: Michael Smith. He had a dream; He prayed that He would walk again someday. But someday never came. [Headline] Late poet a plaintiff in nursing home case Page 5 [Banner headline in ADAPT 44. Story starts here in ADAPT 45 and continues in ADAPT 46, but the entire text is included here for ease of reading.] Late poet was plaintiff in nursing home lawsuit By Jonathan Dedmon, News Staff Michael Smith was a poet. A victim of muscular dystrophy, Michael wasn't able to hold a pen, however. Weighing less than 100 pounds, one of the few physical tasks he was able to perform was to turn the pages of the many books he read. He would keep stanzas of poetry stored in his head and wait for friends or staff at the Heritage House Nursing Home in Lakewood where he lived to have free time so he could dictate his verse. A former aide remembers when she would be busy caring for patients and Mike would say, "Got to write." "We'd say, ‘Sorry, Mike‘ Don‘t have time.‘ A lot of his poetry was lost." In addition to being a poet, Mike also was an idealist. Because of what friends say was that idealism, in spite of the fact Mike died in October at the age of 21, he lives on not only in a published book of his poems but also in a giant legal battle in U.S. District Court. THE BATTLE COULD have a large impact on the care of handicapped patients in nursing homes throughout the country since it attacks the entire method of delivering health care. The suit, in which Mike was an original plaintiff, charges nursing home patients routinely are being denied their rights and even fundamental medical care, contrary to the wishes of Congress in its Medicaid law. U.S. Judge Richard Matsch currently is considering how much jurisdiction the federal court has in the case. But already a number of patients and nursing home employees have come forward with a series of affidavits which are a litany of patient abuse. The charges are leveled primarily against the former Heritage House Nursing Center in Lakewood, which since has been sold and is operating under new management and a new name. The suit’s allegations range from patients not having the colostomy bags changed to failure of the staff to provide any rehabilitation efforts. THE NURSING HOME attorney and a part owner deny the charges which are contained in a half dozen affidavits filed with the court. Pam Malpass worked as an aide from August 1974 to February of last year. Here are parts of her affidavit: “People were punished sometimes by having their wheelchairs turned off, cut their mobility (sic). Wheelchairs at Heritage House were constantly in disrepair and falling apart leading to weekly crises. Paul Brae, a Heritage House resident, fell out of his chair because it was falling apart and crawled under his bed and said he was (sic) [not] going to come out until he got a new wheelchair [cut off] we procured for him with some difficulty. Bowel programs for a number of residents weren't maintained properly resulting in infections. Colostomies and catheters weren't cleaned properly or regularly also resulting in infections for a number of patients. I also often observed that colostomy bags and catheters improperly were connected to the people that needed them with the result that they leaked and backed up." Michael Ray, an orderly from May 1974 to January of last year, said in his affidavit that on at least a dozen occasions, he made marks with a felt-tipped pen on patients’ dressings on open bed sores to make sure they were being changed twice a day as they should have been. “Each time when I looked, a day later, sometimes longer, the dressings I had put on with the markings were still there. The unclean sores lead to more serious complications and infections. During the six months I was working at Heritage House I never saw a doctor." FAILURE TO MAINTAIN a bowel program can lead to bowel poisoning and even to surgery. Mark Biles was impacted for three weeks while I was there necessitating an elaborate program of oral laxatives, suppositories and enemas to give him relief. The owners and the administrators always met suggestions or requests from the staff on behalf of patients residing there with the remark that they cost too much or if you don't like it why don't you get the hell out. “The only time that Heritage House was concemed about the cleanliness of the home was when the state inspection team announced it would appear.” ACCORDING TO JOHN Holland, who heads a team of Legal Aid attorneys working on the case, “We're saying that when Congress established Medicaid, it intended to create a real system of delivering high quality medical care to poor people, not a system that couldn't deliver for a significant number. The benefits aren't getting there.” A particular target is the U.S. Department of Health, Education and Welfare (HEW), which is charged with making sure nursing homes comply with federal standards to insure high quality health care. Legal Aid, which is reluctant to say too much about the case because it is pending, feels HEW merely established a “paper compliance" system whereas Congress wanted a compliance system to “see benefits and rights delivered and prevent the kinds of injuries and deprivations of rights alleged in the suit." THE SUIT NAMES every rung in the bureaucracy which participates in the provision of nursing home care, ranging from the owners of Heritage House to the state Department of Social Services and HEW. In addition to asking for monetary damages, the suit also seeks an injunction prohibiting deprivation of medical care and patient rights. The rights include proper medical and psychosocial treatment and care, the right to seek legal counsel and manage personal monies, the right to voice grievances and the right to adequate notice and opportunity for a hearing prior to transfer, among others. It also asks HEW to come up with a decent system of enforcing compliance with such federal laws. Because of the complex nature of the suit, it already has become a “paper nightmare," according to Holland, and a “paper war,“ according to Heritage House attomey Bob Eberhardt. THE PLEADINGS STAND some two feet high and the court hasn't decided jurisdiction yet. Perhaps one of the most damning affidavits filed so far is by Janice Jacobson, a former administrator of Heritage House. “Heritage House was filthy, cockroaches had infested the entire home (with the exception of the kitchen). The walls wene very dirty and an odor of urine permeated the air. “Flies were everywhere. They present a particular problem to those persons who are bedfast or paralyzed because they can't swat the flies from their faces or bodies. “Temperature controls were broken. Zone control valves which control the room temperature were corroded either open or shut so that the rooms were unbearably hot or cold. “INDIVIDUAL CARE PLANS are either totally inadequate or not existent." “Patients who had to be fed were degraded by impatient orderlies who constantly hurried them along faster than they could comfortably go on the pretext of there not being enough time to feed them." “Staff would get angry with people for having something wrong with them like uncontrolled bowels." “Lots of patients would never get dressed every day. The staff didn’t like to take the time to dress them. By keeping patients undressed a general institutional goal of keeping them in bed and more inactive was more readily achieved. “It was not uncommon for people who did get dressed to not be undressed but rather to sleep in their clothes. l received complaints from one family that one of the male patients there had the same clothes on for weeks. They knew because the same spot was on his shirt for three weeks." “Visitors and relatives often complained that their relatives or friends hadn't received baths or showers for weeks." “It was reported to me by nursing staff the director of nursing believed physical correction of resident misconduct was permissible and that she employed a technique of having persons she decided were misbehaving placed in cold showers." “The call button system at Heritage House often wasn't working and when it was, working staff very often didn't respond to calls. There was one incident while I was there where family members called in and said they heard their mother was dead. The nurse had to go down to the room to see if this was so. The woman had been dead for several hours." Mrs. Jacobson says, in her view, Heritage House was “warehousing people, not delivering health care." "Residents had no more rights than children and the official view was that the staff knew what was best for them and if the patients didn't think we were doing everything right or what they needed they could just leave." Management expressed this view often. “PATIENTS WERE KEPT tractable and quiescent by intimidation and medication. Encouraging people to be as normal as they can be is the essence of good nursing care. It was not done at Heritage House.“ In response, Heritage House attorney Eberhardt said the accusations are “totally untrue and completely without foundation. You can't cross-examine affidavits. The truth will come out in the trial. “ He also points to the affidavit of Allen Buckingham, regional director of the HEW office of Long Term Care Standards Enforcement. Buckingham stated his office never received any complaints concerning the allegations. Oscar Gross, former part owner and also a defendant, said he never would have been able to keep his license if the allegations were true. In addition, he said his home was the only home to provide a wing specifically for handicapped youths and he even received two awards from the wing. “We tried to do our best," he said. He also offered to take the News to the home to interview patients about conditions. He said his wife still visits patients. Gross sold the home in February and it now is under new management. Gross said he sold the home simply as “a business transaction.“ Before Michael Smith died last year, he testified at one hearing on the case. “He already felt he had won," recalled Mrs. Malpass.
ADAPT (1764)
IF HEAVEN ISN'T ACCESSIBLE, GOD IS IN TROUBLE by Tari Susan Hartman Reprinted from Incitement, A publication of Atlantis/ADAPT [This article appears in ADAPT 1764 & 1773 but is completely included here for easier reading.] ADAPT mourns the loss of one of our greatest leaders, Wade Blank, and his son Lincoln. while on a family vacation in Todos Santos, Mexico, Lincoln got caught in an ocean undertow. Wade swam out to save him and both drowned on February 25th, 1993. They are survived by Wade's wife Molly and daughters Heather and Caitlin. Ironically, Wade died in the same way he lived swimming out into the face of hostile under currents, and giving his life to help others fight for theirs, Those who have come to national ADAPT actions remember in the early days Lincoln rode along on Wade's back. Later, he walked by wade's side while Caitlin rode. with his elfish smile, Lincoln quietly drank in all the action at demonstrations, vigils, planning meetings and anything else that came up in his dad's activist life. while other kids play "doctor" or "house", Lincoln played "rally." Wade was born December 4, 1940 in Pittsburgh, PA. After attending an all white high school, he travelled with Dr. Martin Luther King Jr. to Selma on a dare by a black college roommate. His experiences there taught him the deep oppression perpetuated by our "civilized" society. Once he graduated college, he served as pastor of a church just outside of Kent, Ohio that became the underground meeting place for the Students for a Democratic Society, SDS. After the Kent State killings, he returned to get a masters degree from McCormick Theological Seminary and was ordained a Presbyterian minister. Burnt out on his past activism and organizing, he moved to Denver and began working in a nursing home. with years of civil rights, war on poverty and antiwar organizing experience, he could not ignore the oppression he found there. So he began to deliver Dr. Martin Luther King Jr.'s dream of freedom directly to the doorstep of the disability ghetto: the nursing home. In 1971, while on staff at Heritage House, a Denver nursing home, Wade tried to work within the system to dignify the lives of the young disabled residents. A recent ABC—TV movie with Fred Savage entitled "When You Remember Me" chronicled this story. Wade and the resident's efforts were doomed to fail, but they gave birth to a better alternative. In 1974 Wade founded the Atlantis Community a model for community-based and consumer controlled independent living center named for the lost continent of Atlantis, those easily forgotten and dismissed. The first members of Atlantis were those young adults incarcerated in Heritage House, from which Wade had been fired. Forgotten by the system and often by their families, these individuals were not forgotten by Wade as he began to liberate them from the nursing home into the Atlantis Community. Years later Wade and attorney John Holland masterminded a $32 million lawsuit against Heritage House nursing home for obstruction of justice and violation of civil rights. The case went all the way to the US Supreme Court. Today many of those original nursing home residents are raising families in homes they now own. In 1978 Wade and Atlantis realized that if people with disabilities were to truly live independently, they would need, and should have a right to, accessible public transportation. On July 5-6. 1978 a "gang of nineteen" disability activists and Wade held their first inaccessible bus hostage in the Denver intersection of Broadway and Colfax. Late that night Wade was surprised when US Congresswoman Pat Schroeder handed him a doughnut and a cup of coffee. Atlantis‘ decision to take the fight for lifts on buses to the national level soon led to the birth of ADAPT (American Disabled for Accessible Public Transit. ADAPT was the nation's first direct action, grass-roots movement of disability activists and mushroomed in over 30 states, Canada, Sweden and England. Like the freedom riders of the 60s, ADAPT's struggle for accessible public transit became a national battle cry of the 80s. Over the course of eight years of biannual national demonstrations throughout the country, hundreds of ADAPT activists and their families and friends were arrested for their beliefs and commitment to ensure civil rights for all disabled citizens. Twelve years after the first bus seize, the Americans with Disabilities Act, ADA, mandated lifts on buses. ADAPT's street chant "access is a civil right" echoed in the halls of Congress, as politicians became increasingly aware that ADAPT and the disability rights movement fully expected ADA to be passed as landmark civil rights legislation. ADAPT organized the "wheels of Justice" march in March of 1990, and Wade played a key role. It was a call-- to— action that galvanized the disability rights movement to demand swift passage of ADA with no weakening amendments. Over 1,000 disability rights activists from across the nation joined forces with ADAPT to demonstrate to the world that they were to be taken seriously. On the second anniversary of the signing of the ADA (July 25, 1992), the city of Denver and its Regional Transit District commemorated that historic event by dedicating a plaque to Atlantis/ADAPT and the "gang of nineteen" who held the first bus. Wade refused to have his name engraved on the plaque, but his silent tears at the dedication ceremony revealed the depth with which he felt the issues of disability rights. He had left his mark forever etched in the foundation of our civil rights movement. In 1990, when it was clear that ADAPT had successfully led and won the fight for accessible public transportation with the passage of the ADA, wade and other national ADAPT leaders convened to plot their next course of action. There was little question for anyone what that next issue would be. ADAPT transformed its mission and became "American Disabled for Attendant Programs Today." Together, ADAPT and wade returned to the scene of one of society's most heinous crimes the warehousing of 1.6 million disabled men, women and children. These disabled Americans committed no crime, yet were and still are, interred against their will, in nursing homes, state schools and other institutions. They are used as the crop of industries like the nursing home lobby, physicians and their conglomerate owners who continue to get rich by robbing our people of their fundamental civil, human and inalienable rights to life liberty and the pursuit of happiness. Most of us are spectators sitting on the sidelines of life, learning history from books. Wade, was an active participant in over three decades of political organizing. He taught others how to create and record their own destiny. A brilliant strategist, he helped shape the tide of the disability rights movement. Yet Wade was never too busy to roll up his sleeves and assist someone with attendant services, push or repair a chair or drive a van. He stood up for what he believed in and expected others to do the same. In his Pursuit to free others from the chains of oppressions he was arrested 15 times and proud of it! Several weeks ago Wade Blank's story, including the development of Atlantis and ADAPT, was officially accepted into the National Archives. Wade, a passionate Cleveland Browns fan, was a loving husband, daddy, friend, organizer and leader. He valued and encouraged the unique contributions that each of us has to give to ourselves, each other and the world around us. We honor his contribution, value his friendship, and grieve the loss of our beloved friend and colleague. Wade was one of the few non disabled allies of the disability rights movement who understood the politics of oppression. At times through the years, his leadership role was questioned, but he never lost sight of the vision, nor lacked the support of those he was close with. Photo by Tom Olin: Wade Blank and Mike Auberger sitting on either side of the plaque honoring the Gang of 19. Caption reads: Co-Directors Wade Blank and Mike Auberger reflect on the past decade of organizing and activism.