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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 (354)
Austin American-Statesman Sunday, October 25, 1987 Lifestyle section Title: Streetcars and Desire Activist couple dedicate lives to tearing down walls between city buses and the disabled By Carlos Vidal Greth, American-Statesman Staff (This is a compilation of the article that is on ADAPT 354 and ADAPT 353. The content is all included here for easier reading.) Most visitors to the Bay Area relish the opportunity to hop a cable car and "climb halfway to the stars," as Tony Bennett croons in his signature song, I Left My Heart in San Francisco. Stephanie Thomas, organizer for Americans Disabled for Accessible Public Transportation, had other ideas. "To mobility-impaired people, keeping those historic symbols of public transit alive memorializes inaccessibility and makes it seem like a positive thing," she said. ADAPT, a national civil-rights group, strives to make it easier for disabled people to ride city buses. They differ from mainstream disability-rights groups in that members sometimes commit acts of civil disobedience when the usual political channels clog or hit a dead end. Thomas, her husband Bob Kafka, and eight other Austinites went to San Francisco in late September to conduct a protest during the national convention of the American Public Transit Association, a lobbying organization. Kafka and 15 others were arrested when they climbed out of their wheelchairs and staged a sit-in at the cable car turnaround at Powell and Market streets. Thomas was arrested twice, once for blocking a shuttle bus and once for blocking a cable car. "I've been arrested eight times or so," she said. "I've lost count. Bob has been arrested 14 times. The police are usually aware it's a demonstration about civil rights, and that we're not out to hurt their city. But it's scary. We're not automatons. Some members break down and cry when they go to prison." As far as Thomas is concerned, the suffering has been worth it. "The demonstrations got national exposure. More important, we got the transit association's attention. They are beginning to listen." Thomas, who is also executive director of the Coalition of Texans With Disabilities, could sit for a poster portrait of the committed political activist. Her shock of amber hair shifts of its own accord like the wind ruffling a field of grain. Wide, blue eyes fix visitors with the riveting gaze of a woman who believes she fights for what is right. She was born 30 years ago in New York to parents who fought for justice in their way. Her father organized political campaigns and worked for arms control. Her mother, a writer, was involved in the women's movement. "Mom taught me to question people's perceptions," Thomas said. "The women's and disabled movements have something in common: We're defined by our bodies. You have to fight that all the time." Her first protest occurred when she was in elementary school. Mothers in the apartment building where her family lived wanted to establish a day-care center. The owners didn't want to provide the space. "Women and children took over the building," Thomas said. "We weren't angry college protestors. We were non-threatening moms and kids. But our presence made a difference." Despite her progressive upbringing, she was a shy girl who hid from the world behind the covers of books. When she was 17, her legs were paralyzed when she fell off a farm tractor while doing chores. What could have been a tragedy turned her life around. "I realized that life doesn't go on forever, and that you need to make the most of every moment," Thomas said. Thomas attended Harvard, where she and other disabled students organized a group to help make campus more accessible. "When I look back, I see we were very tame,” she said. “We were polite but usually got what we asked for.” Over the years, Thomas became increasingly active in disability rights. She got involved in independent living centers, communities of disabled people supporting one another so they can live with dignity outside institutions. In the early 1980s, she joined the Austin Resources Center for Independent Living. She went to work for the Coalition of Texans With Disabilities in 1985. The 9-year-old coalition lobbies for, represents and coordinates 90 organizations (including ADAPT) concerned with disabilities, as well as the more than 2 million disabled Texans. “It is the collective voice for the disabled in Texas,” said Kaye Beneke, spokeswoman for the Texas Rehabilitation Commission. "They’re committed - the members live every day with the problems they try to solve. “Stephanie understands there’s a spectrum of political views in the coalition, which tend to be more middle-of-the-road than ADAPT. She takes responsibility for the representing of all those views. But don’t call the coalition passive. They’ve had their way in the legislature and on the local level.” As a leader in two of Texas major disability-rights organizations, Thomas has her hands full. It helps having Bob Kafka, who broke his back in a car accident in 1973, at her side. The experienced trouble maker -- albeit trouble for a good cause -- has made a name for himself. He won the Governor’s Citation for Meritorious Service in 1986. Appropriately, Kafka met Thomas at a disability-rights conference. “Stephanie was real involved, real committed and real attractive,” he said. Sharing home and office has increased their commitment to the cause they serve- and to each other. “Bob and I are an activist couple,” Thomas said. “It’s intense because we work so closely. But it’s rewarding. It has made us an incredibly tight couple.” Thomas has to rework her concept of activism when she joined ADAPT. “Demonstrations force the public to look at disabled people in a different light,” she said. “The cripple is the epitome of powerlessness. We say we’re sorry if it scares you to look at me, but we have to live our lives.” Confrontation, however can cost allies as well as foes. This year, the Paralyzed Veterans of America severed ties with ADAPT and any organization "advocating illegal civil disobedience.” “Our charter states that we must act in accordance with the laws of the land,” said Phil Rabin, director of education. “To act otherwise would be to violate our charter. “The veterans and ADAPT members share first-hand the frustration of living in a society that is not accessible to the disabled. We don’t want to fight ADAPT. It’s a waste of precious resources to divert our energies.” Though Thomas’ group is controversial, it has achieved many of its goals. Albert Engleken, deputy executive director for the American Public Transit Association in Washington, D.C., acknowledged that ADAPT’s street theater has had some effect. In September his organization created a task force to study the issue of providing service for disabled, he said. Engelken, however is not a convert to their cause. “ADAPT wants a lift on every transit bus in the country,” Engelken said. “We believe it should be left to local transit authorities to decide how to handle transportation for disabled people. Transit officials are not robber barons. We’re paid by the public to provide the most mobility for the most people.” Thomas knows how to work within the system. Ben Gomez, director of development for Capital Metro, said ADAPT members have been effective on the Mobility Impaired Service Advisory Committee, which makes recommendations on service to the transit authority board of directors. “They’re well-organized,” Gomez said. “We don’t always agree on the approach and issues. We’ve made many of the adjustments they’ve asked for, but not always within their time frame.” The concessions have been gratifying, but Thomas has only begun to fight. “ADAPT took a dead issue änd made it hot again,” she said. For information on American Disabled for Accessible Public Transportation, write to ADAPT of Texas, 2810 Pearl, Austin 78705/ To learn more about the Coalition of Texans With Disabilities, call 443-8252, or write to P.O. Box 4709, Austin 78765. [curator note: addresses and phone numbers no longer valid] Staff Photo by Mike Boroff: A man (Bob Kafka) with Canadian (wrist cuff) crutches, a plaid shirt, light colored jeans and sneakers sits in the lap of a woman (Stephanie Thomas) with wild big hair and a button down shirt. She is sitting in a manual wheelchair. Caption reads: "Bob and I are an activist couple,” says Stephanie Thomas who met Bob Kafka at a rights conference. “It’s intense because we work so closely. But it’s rewarding.” Photo by Russ Curtis: A group of protesters are looking up at something over their heads and their mouths are open shouting. In the front of the picture a woman in a manual wheelchair (Stephanie Thomas) is sitting on a line on the pavement that reads passenger zone. She has her finger raised pointing and is wearing a t-shirt with the ADAPT no-steps logo. Beside her is a man (Jim Parker) with a headband looking back over his shoulder, beside him another man in a wheelchair. Behind Jim stands a woman (Babs Johnson) with her arms by her sides and her mouth open yelling. Behind her a line of other protesters is arriving. Caption reads: ADAPT organizer Stephanie Thomas traveled to San Francisco to participate in a rally protesting the policies of the American Public Transit Association.