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CREATIVE LOAFING November 14, 1996 DISABLED ISSUES ADAPT rolls out After five days of conferences, rallies and protests, hundreds of disabled activists headed for home following adjournment of the fall convention of ADAPT (American Disabled for Attendant Programs Today). The Atlanta meeting was particularly productive, say organizers, who secured written commitments from House Speaker Newt Gingrich and President Bill Clinton to press for greater access to home and community-based care for the disabled. The organization, which has been campaigning to increase funding for such programs and steer policy-makers away from nursing home-oriented strategies, even secured a commitment from Georgia Nursing Home Association (GNHA) President Fred Watkins to support a moratorium on new nursing home construction in Georgia. But the concessions did not come easily. More than 400 activists occupied the Clinton-Gore headquarters on election eve, and 86 were arrested — then released — by Atlanta police. The following day, hundreds of demonstrators in wheelchairs blockaded Memorial Drive in front of the GNHA offices, then filled the lobby of the downtown Marriott Marquis, where members of the American Health Care Association (AHCA) were staying during their convention. They sought an audience with AHCA President Paul Wilging, but were unsuccessful; 120 demonstrators were jailed, but a municipal judge released them upon condition they refrain from any more disturbances. "AHCA is becoming less relevant, now that we have legislative measures in the works,” says Atlanta ADAPT member Mark Johnson. "We've definitely got some things to follow up on. We have a committed time-frame for action in Washington, and if things don't get done, we'll escalate again." —- Greg Land
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PHOTO: Shel Trapp, wearing his leather jacket and cap, sitting on a stone bench up against a monument type piece of stone. There is another monument in the background and grass in between. He is looking down at the ground.
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PHOTO: Linda Anthony in a purple ADAPT shirt and cap with a loudspeaker in her lap. She is rolling her manual chair forward with a policeman walking behind her. The photo is slightly out of focus implying motion.
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The Augusta Chronicle, Thurs. November 7, 1996 Advocacy group members arrested ATLANTA - Police arrested 109 members of an advocacy group for the disabled Wednesday for trespassing at a hotel where a nursing home conference was under way. It was the second time this week that members of Americans with Disabilities for Attendant Programs Today were arrested in Atlanta on criminal trespass charges. About 250 protesters blocked the entrance of the Atlanta Marriott Marquis, where the American Health Care Association, which lobbies for nursing and care homes, was holding a conference. The group has held a series of protests this week in Atlanta, where it is holding its annual convention through Thursday. The group wants the government to redirect federal money to help provide in-home care for people with disabilities instead of forcing them into nursing homes. — Compiled by Jennifer Miller
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In a room with white walls devoid of pictures and with a couple of large plants, a group of five police officers sit on a couch and two chairs around a coffee table. Two of the officers are using their radios. The others are sitting, semi-relaxed.
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This is a photo of a hallway packed with people. It's shot over the heads and back of ADAPT folks facing away down the hall. Facing toward them, and the camera are Bob Kafka with two Atlanta police officers behind him. All are smiling broadly.
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HEALTH CARE [Headline] Options to Nursing Homes [Subheading] Urgency for Change Driven by Soaring Medicaid Spending by Tom Barry Have you ever known an elderly person who actually looked forward to going into a nursing home?" asks James Ledbetter, director of the Georgia Health Policy Center at Georgia State University. He believes there must be viable alternatives to nursing homes, and predicts that there soon will be. More home health services, foster care homes, assisted living facilities and other alternatives to a nursing home are all attracting new attention. Driving the urgency of the process are soaring Medicaid costs. Medicaid pays the bill for 85% of all nursing home patients in Georgia but provides little funding for less expensive community-based services. “Our payment mechanism in Georgia has caused a very good network of nursing homes to be built," says Ledbetter, "but we must figure out a way to provide incentives for...other levels of service." Ledbetter, whose nonpartisan think tank will soon propose revisions in state Medicaid law, sees a vastly different world for tomorrow's elderly. As managed care has come to hospitals, so too will it be coming to nursing homes, as the state seeks the most appropriate care at the least expense. Skilled-care, high-cost nursing homes should be the facilities of last —- not first — resort, Ledbetter believes, if Medicaid expenditures are to be restrained. He envisions separate facilities for Alzheimer patients, foster homes for the elderly and more personal care homes than exist today. So-called "respite centers” would be available to put up a home care patient temporarily, while relatives take a vacation or just have a night out. A web of home health, homemaker and nutrition services would allow more and more elderly to remain in their own home or with relatives. At the very least, they would be able to stay in their community. [Pulled quote] "Have you ever known an elderly person who actually looked forward to going into a nursing home?” [Boxed text] [Headline] NURSING HOME FACTS: The elderly (65-and older) population will double in eight states -— seven Western states and Georgia -- by year 2020. Georgia's elderly will increase from 695,000 to 1.4 million Over the same period, the number Georgians 85 and over will increase from 245,000 to 735,000. Medicaid pays for 85% of all nursing home care in Georgia, the fourth highest rate in the United States and roughly twice the national average, mainly because of the relatively low eligibility standard. Current standard tor Medicaid long-term care eligibility: $1,410 a month income and assets of $2,000 or less (excluding residence); New federal legislation criminalizes the transfer of assets to quality; Previously people could become eligible for Medicaid three years after signing over assets. Residents 65 and over comprise 12.2% of Medicaid recipients yet receive 27.2% of payments. By contrast, those 0 to 20 years of age make up 58.9% of Medicaid recipients and receive 32.5% of funds. Sixty percent of Georgians have or have had a close relative in a nursing home. Average annual cost of a nursing home in Georgia: $26,000 a year ($30,000 in metro Atlanta area), up from $19,000 a decade ago. Rate is 10th lowest in nation, but 73% of Georgians surveyed say they can't afford it. Approximately 40,000 people live in Georgia's 367 nursing homes. Age breakdown in 1990 Census 89.3% over age 65; 10.4% ages 25 to 64; and 0.3% under 25. Women made up 75% of nursing home population age 65 and over. Forty-tour percent of state residents say they could not care tor a loved one who required 24-hour assistance. Occupancy rate in Georgia nursing homes: 95%. The lifetime risk of going to a nursing home for a woman age 65 is 52%; tor men: 30%. Almost 84% of nursing home residents do not have a spouse, versus 45% tor elderly living at home. Sources: Georgia Nursing Home Association. Georgia Health Policy Center. State Department of Medical Assistance. "My hope is that all people who need long-term care, not just the elderly but also the disabled, will have more options, while encouraging people to be as independent as possible," says Ledbetter, former commissioner of the state Department of Human Resources. In Georgia, as elsewhere, the rite of aging is now frighteningly expensive. When the elderly become unable to care for themselves, or for family members to take care of, the nursing home is usually the only viable option. The decision can be wrenching, both emotionally and financially. With the cost of nursing homes averaging $25,000 to $30,000 a year, the elderly person typically exhausts personal assets in short measure and goes on Medicaid. In Georgia, it's been easy to qualify, with the maximum monthly gross income set at a relatively high level ($1,410 today). Never mind that the elderly person may not have needed a nursing home's round-the-clock care, but only someone to help her — or in much fewer cases, him — get dressed or eat or administer an insulin shot. (Women comprise three-fourths of nursing home residents age 65 and over.) Georgia now has more nursing home beds per capita than any state in the Southeast except Tennessee. Recent audits have shown that 40% of the nursing home residents don't need the high-end care they receive - and that is frequently to put Medicaid monies into less expensive services and pay a capitated rate per patient, in contrast to existing fee-for-service formulas. Fine-tuning the present system remains an option, Ledbetter says, but adds that experts believe managed care is the "most efficient” way to go. Georgia spends roughly one-fourth of its S3 billion Medicaid budget on nursing homes, and demographic changes are increasing pressure on it. A growing haven for retirees, Georgia is the only state east of the Mississippi whose elderly population is expected to double by the year 2020. With geriatric managed care on the rise nationally, the Georgia Health Policy Center is studying how it works in such states as Arizona and Oregon. Ledbetter says whatever system is eventually put in place here, strong government oversight will be needed. (ln 1994-95, 100 of 341 nursing homes in Georgia were deemed unfit to take on additional patients.) The state Department of Medical Assistance, which administers Medicaid, could Even act as the managed care organization itself, as opposed to private organizations competing for the market. Already several firms have shown interest in Georgia. Managed care horror stories abound, Ledbetter acknowledges. "But managed care does just what it's designed to do," he says. "And it would be a mistake to design a system that doesn't improve the quality of care.” Becky Kurtz, state ombudsman for long-term care, expresses concern that managed care firms would “limit the kind of choices people have. We wouldn’t want care to be rationed in a way detrimental to the individual." Kurtz doubts that private companies will want to get into geriatric managed care in the first place, considering the high cost of caring for the aged. "lt's not a population HMOs are excited about.” Anticipating the trend, Georgia's nursing home industry has begun to diversify. “Many of our nursing homes already operate personal care and assisted living facilities," says Fred Watson, executive director of the Georgia Nursing Home Association. "The more progressive homes are doing lab work and hospice and respite care, especially nursing homes in metropolitan areas." Watson believes the tightly regulated nursing industry must be given the flexibility to adapt while protecting patients who truly need advanced care. Under current law, he notes, nursing homes can't discharge patients against their will, even though they may not require such care. "lf we can save money by caring for a patient in a different way, we should be allowed to do that," he says. To envision a nursing home operator positioned for the 21st century, consider Larry Minnix, president and CEO of Wesley Woods Geriatric Center at Emory University. Over the past several years, Wesley Woods has reduced the number of its long-term care beds while building a network of outreach programs to enable the elderly to continue living in a private home. Wesley Woods operates outpatient clinics specializing in Parkinson's disease, memory disorders and psychiatric problems, including depression, the most common undiagnosed condition among the elderly. The geriatric center has forged relationships with various community groups to provide senior citizens with home health care, meals and transportation. The Wesley Woods campus off Clifton Road also offers assisted living quarters, where the elderly needing only minimal aid can live. "Ten years ago, we served 2,000 people annually," says Minnix. "This year we'll serve 17,000 or 18,000, yet we're downsizing our nursing home program." PHOTO: A man in a button down shirt sits at a table with papers in front of him. His hands are loosely clasped in front of his chest. "Managed care does just what it's designed to do, and it would be a mistake to design a system that didn't improve the quality of care. ” ——James Ledbetter, Director, Georgia Health Policy Center [Image] Drawing of three connected two and three storied buildings on a circular drive with several small trees in the center of the circle. Caption reads: Artist's rendering of Wesley Woods 52-acre continuing care retirement community near Newnan. Wesley Woods is building a continuing care retirement community north of Newnan, which will be among the first of its kind in Georgia. When completed, the S40-50 million, 52-acre community will have apartments, cottages, duplexes and assisted living facilities, as well as the more traditional skilled nursing beds. The elderly enter the community while still active and independent and receive specialized services as they age and become less able. Proposed Medicaid changes may ignite a fight in the General Assembly, where the nursing home industry has wielded disproportionate influence. For years, nursing home operators have said that Medicaid reimbursement rates — which average about $20,000 per patient per year — are too low to offset labor and other operating costs. An inkling of what may lie ahead came this past summer, when operators strongly protested state-imposed limits on Medicaid patient bed days and on money paid for management costs. Among other limits, the DMA announced that Medicaid would not pay more than $100,000 toward the salary of a corporate official. (Large corporations own many of the state's nursing homes.) In Fiscal 1995, under the previous funding formula, salary reimbursement exceeded S 100,000 for 22 executive positions in the nursing home industry, with one corporate official getting $615,713 in salary reimbursement. Those protests may be only the beginning of a protracted, fiercely contested battle if other Medicaid limitations are proposed. Minnix has another view. “Some nursing homes are fighting this, but quietly, many of them are just making plans to change. Everybody's looking at the numbers and recognizes we can't continue to pay the price we're currently paying for health care. "Our country spends more on health care than any country in the world and yet when you look at some of the fundamental indices of health, we're not at the top. We're not getting our money's worth. We can improve quality and raise consumer satisfaction while lowering costs." Presumably, corporate salaries might even be included in any lowering of costs.
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[Headline] Panel stalls on major fix for Medicaid By Laura Williamson, STAFF WRITER A coalition charged with devising a plan to overhaul Georgia's Medicaid program chose Friday not to recommend any immediate, drastic changes in health care for the poor or nursing home care for the elderly and disabled. After nearly a year of discussion, the Georgia Coalition for Health voted to put more teeth in an existing program that requires patients to get a doctor's permission before getting specialist care or using a hospital emergency room. It's unclear, however, how sharp those teeth will be or how much money the plan could save the state, which faces a potential $400 million budget shortfall in its Medicaid program by 1999. Coalition board members agreed only on the sketchy outlines of a proposal, which they will discuss in further detail at their Nov. 21 meeting. Gov. Zell Miller last year appointed former Department of Human Resources Commissioner James Ledbetter to form the coalition to recommend ways of reforming the state's Medicaid system. The coalition's plan builds on a Medicaid program that allows patients to choose their own doctor but requires them to get that doctor's pen"nissi0n before seeking special care. Medicaid patients in metro Atlanta also currently have the option of joining an HMO, where their choice of a doctor and hospital is limited. The new plan would allow "local communities" — a term the coalition left undefined - to decide what form of managed care they will offer. Communities could offer Medicaid patients an HMO. They could offer a health plan administered by a physician-hospital network. Or they could choose a beefed-up version of the current program that could allow patients to continue to choose their doctors but would scrutinize the amount and type of care those doctors provide. The coalition agreed to ask state Medicaid officials to apply for federal permission to treat more elderly and disabled people in their homes instead of placing them in nursing homes. It will take two years to get that permission, they estimated. After they work out the details of both plans, coalition board members will present their recommendations to the Department of Medical Assistance at a meeting Dec. 4. If DMA accepts the plans, they will be phased in gradually over a two to three year period. The compromise earned the support of physicians and other health care providers as well as patient advocates. They had previously considered three other plans that would have taken effect faster or severely limited a patient's choice of doctor or hospital. Some would also have reduced services to patients or resulted in big cuts to doctors, hospitals and nursing homes. "I think we really need to look at this over time,” said Linda Lowe, a consumer health advocate. “We need to make sure we're really serving the needs of patients." The move into stricter forms of managed care mirrors a move in the private sector, where 20 percent of Georgians are enrolled in managed care plans.
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The Denver Post PHOTO by John Prieto, Denver Post: A woman in a wheelchair (Carolyn Finnell) is surrounded four able-bodied persons. One man is kneeling down in front of her to talk with her. Caption reads: Carolyn Fannell (In wheelchair) discusses the protest with RTD executive director L.A. “Klm" Kimball. Boxed Text: "You were talking about a separate and unequal system." -- Protester Wade Blank Threat of Sit-In Over RTD Lift Plans Dissolves By GEORGE LANE, Denver Post Urban Affairs Writer [This story continues on ADAPT 113, but the entire text has been included here for easier reading.] After tense negotiations, Regional Transportation District officials avoided use of police force Thursday night to break up a threatened all-night wheelchair sit-in at RTD headquarters. The protesters want RTD to reconsider a decision not to put wheelchair lifts on new buses — a decision they say broke an agency promise made to them last year. Three district board members promised about 25 disabled persons they would try to call a special meeting to reconsider the anti-lift action. The sit-in was staged in the fifth-floor executive offices of the RTD at 1325 S. Colorado Blvd. by members of the Atlantis Community for the disabled. The promise, contained in a policy statement adopted by the RTD board a year ago, was that 50 percent of the existing bus fleet of more than 600 vehicles would be retrofitted with wheelchair lifts, and all new buses would be ordered with lifts. When the statement was approved, there was a federal regulation demanding that all federally financed transit agencies make transportation modes accessible to the handicapped, and all new buses purchased had to have the lifts. RTD was one of the only transit agencies in the country to take steps toward complying with the regulation. But the regulation was repealed last July. Thursday afternoon, the RTD board voted to save more than $1 million by canceling the order to have the lifts installed on 89 high-capacity, articulated buses expected to be delivered in 1983. Wade Blank, co-administrator of Atlantis, pointed out to board members before the vote was taken that the day the regulation was rescinded, RTD officials said lifting the regulation would have no effect on the district's commitment to serving disabled persons. “A week ago I came to a meeting, and about 10 minutes to four, it was casually mentioned" there would be no lifts on articulated buses, Blank said. "I was dazed... it took a few days to realize that you were talking about a separate and unequal system." Robert Conrad, also an Atlantis administrator, told RTD board members he feels "betrayed" because he has worked closely with RTD on providing service to the handicapped “and all of a sudden you spring this on us." Board member Flodie Anderson explained to the approximately 75 angry persons attending the meeting that RTD intends to use the articulated buses on express routes and other heavy routes. Under that plan, Anderson said, other buses will be freed that will be lift-equipped and able to provide better service to disabled people than is provided now. Board member Edward Cassinis told the group that buses currently equipped with wheelchair lifts are carrying a maximum of 270 wheelchair passengers per week. RTD's “handiride,“ which provides front-door service to disabled passenger, is handling 831 riders per week. When the vote was taken on the action, the outcome was 12-4 against installation of the lifts. Members of the Atlantis Community and several other disabled organizations then gathered ln hallway outside the first-floor meeting room and decided to “resume civil disobedience." The group of about 25, all from Atlantis, then rode the elevators to the fifth floor of the building and began their sit-in shortly after 4 p.m. Motorized wheelchairs were parked in the doorways of the three elevators to make it impossible for them to be used. Shortly after the beginning of the demonstration, Bob West, RTD’s director called for police assistance and paramedics “because we don’t want anybody to get hurt.” The police, however, didn’t arrive for more than an hour and when they did arrive, the negotiating session that would end the sit-in already was in progress in a fifth-floor conference room. During that session, board members Mary Duty, Kathi Williams and Thomas Bastien agreed to try to get their fellow board members to meet again to possibly reconsider the issue. L.A. “Kim” Kimball, RTD’s executive director and general manager, also agreed not to execute the board action until an effort is made to set up the special board meeting. “But I can’t guarantee they will” Kimball added. “We can guarantee that if they don’t, we’ll file suit for breach of promise,” responded Mary Penland, an Atlantis employee. “And we’ll guarantee those articulated buses won’t roll unless they roll over our bodies.”
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news [Headline] Civil Disability [Subheading] Disabled activists protest nursing home stranglehold by Greg Land For nearly an hour they file from the downtown Radisson Hotel, along Harris Street and into the chilly shade of Centennial Park. Man and woman, young and old they come; some walk, some hobble on walking sticks, but the majority roll — in powered wheelchairs, or in simpler models pushed by companions or self-propelled by their occupants. Some 500 disabled activists from throughout the country and as far away as Great Britain rallied Sunday, kicking off the fall convention for ADAPT (Americans Disabled for Attendant Programs Today). Their goal: To end the stranglehold that nursing homes and institutions have on funding for the disabled, and to free up Medicaid and other money so that hundreds of thousands of Americans may live — and work — in homes and offices, just like their able-bodied countrymen. "ln the time it took to get here, 20 people died in nursing homes," booms Bob Kafka from his chair, an interpreter for the deaf signing furiously at his side. Two days before the general election, the assemblage is restive: Kafka informs his listeners that a delegation is conferring with House Speaker Newt Gingrich, attempting to pressure the congressman into fulfilling a 1994 pledge to introduce legislation allowing the disabled to choose between institutional care, and home or community-based services. "We've got word the Newtster’s signed something,” says Kafka. "Well, signing’s one thing —- doing’s another!" A cheer goes up from the crowd, who scheduled their election-week convention in Atlanta to coincide with another convention, and one with an entirely different focus: that of the American Health Care Association, which begins its four-day convocation Wednesday, Nov. 6. ADAPT and other disabled-rights organizations have long assailed the nursing home industry in general, and AHCA in particular, as more interested in profits than in people. ‘The industry is totally resistant to alternative care,” says Mark Johnson, an Atlanta-based ADAPT activist. "Some nursing home operators have gotten into other areas — home—health is one of them — but the industry is realizing that its bread and butter, warehousing people in nursing homes, is breaking down.” As budget cutters sharpen their pencils in Washington and throughout the nation, federal programs are being dismantled, and money is shifting back to states. The problem, says Johnson, is that those funds are still aimed at institutions, and there is no guarantee of any greater availability of home and community-based services. ADAPT cites figures showing the average cost for one year of nursing home care tops $30,000 per person; attendant service averages $8,000. Government numbers show that just 14 percent of Medicaid funding goes to home and community-based care. In preparation for this year's AHCA convention and anticipated acts of civil disobedience, World Congress Center officials enlisted the aid of Johnson and other activists to help train 400 police and security officers in the proper procedures to arrest a disabled person. "AHCA doesn't want to see us," says Johnson with a smile, "but we're going to be there. And they're going to notice us. ADAPT has drafted a resolution it hopes to present to AHCA’s board of directors, for a vote by the entire organization. Among other things, the document seeks AHCA’s pledge to adopt policies promoting the “redirection of 25 percent of all current federal and local spending to self-directed, community-based attendant service," as well as directing that 51 percent of all future spending be similarly targeted. AHCA officers have agreed to meet with ADAPT, but neither side is optimistic of finding satisfactory common ground. "We disagree with their approach," says AHCA spokesman David Kyllo. "We think a comprehensive, long-term care policy needs to be created, including attended care. But we don't think taking from one needy group to give to another is a sound policy." He disputes ADAPT’s charges that as many as 1 illion of the 1.7 million American nursing home residents can be adequately, cared for elsewhere. Studies show that more than 90 percent of nursing home patients are over 65, says Kyllo, and that as baby boomers age, that percentage is going to rise. "Nursing homes are not what they were 20 years ago," Kyllo notes. "A lot of our members support the assisted-living industry. We are the assisted-living industry.” Johnson’s heard it all before. PHOTO BY STAWNIAK: In the midst of a tightly paccked crowd of people, most in wheelchairs and most with small flags, a man (George Roberts) in a wheelchair holds a small child (Stephanie) bundled in a blanket. Behind him stands a woman (Jeanette Roberts). Both are wearing sunglasses and ADAPT caps and the man has a sign taped the side of his chair that reads "DOWN with Nursing Homes." Caption reads: George Roberts and his daughter Stephanie, from Denver, Colo. “They invite us in, talk to us, offer us panels and workshops then do nothing,” he says. "We just want them to introduce this resolution; we know they're gonna vote it down. We want a vote for the record." As of Sunday night, the assembled activists have something else for the record. ADAPT activists gave little credence to a bill Gingrich co-sponsored three days before adjournment this year, painting it as a cynical election-year sop. But Sunday night, Gingrich pledged to create a legislative committee, including ADAPT members, to work directly with his office by Thanksgiving, and to draft legislation to be presented next Ianuaxy aimed at offering a choice of care to disabled Americans." Distributing copies of the two-page document, scrawled in the congressman’s own hand and bearing his signature along with that of ADAPT national organizer Michael Auberger, Johnson is cautiously optimistic. "We've got something," he says. "Now we've got to hold him to it." At any rate, Gingrich has managed to dodge a planned takeover of his campaign headquarters on election eve, and Johnson and his colleagues are plotting other strategies. "This doesn't let Dole and the rest of the Republicans off the hook," he says. "And President Clinton — he's done a lot more for us than Dole or Gingrich, but we're talking to him, too. But we want some action, we want a commitment. Or maybe we'll go on over to the Clinton/Gore headquarters.” Sure enough, several hundred activists spent Monday afternoon occupying the headqaurters of the Democratic presidential candidate, with 86 of them eventually being carted away by police. “We didn't get as much [as from Gingrich] says Johnson. "They did promise to convene a meeting with us within the first quarter of 1997, if Clinton's reelected, and there were no charges against the people who were arrested. Now we're off to AHCA ..." The end
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SPINAL COLUMN p.22 [Headline] On Their Own [Subheading] People with disabilities don't belong in Institutions by Alan Friedman Edwin McWilliams is considering pursuing a career in the ministry or perhaps owning an electrical supply business. Meanwhile, Linda Stinson Worley, is running for office as a candidate for state representative. Goals such as these would be considered ambitious under any circumstances. But for both Edwin and Linda, the pursuit of these goals is testimony to how the effective use of health care resources can empower people with disabilities. In 1980, 19-year-old Edwin McWilliams was severely injured when the car he was driving slammed into a telephone pole near his Macon home, leaving him paralyzed from the neck down and dependent on a ventilator to breathe. Linda Stinson Worley is quadriplegic as a result of a virus that struck more than 20 years ago. Edwin and Linda have been given a second chance at living independently thanks to Georgia's Medicaid lndependent Care Waiver Program (ICWP). The state's independent care legislation was established in 1992, the result of efforts by Shepherd Center and local disability rights advocates to convince law makers that Medicaid funds could be more effectively spent on helping severely disabled people live independently, rather than paying for their care in nursing homes and long-term care facilities In some cases, attendant services at home are less expensive than the same services in a nursing home. In 1991, $105,000 was approved to fund a pilot independent care project for a half-dozen people. The following year, funding for the program was expanded to $1.2 million. Today, $5.6 million in state and federal funds allow l l2 disabled Georgians to get the assistance they need at home. Presently, there are 200 people on a waiting list. The 1996-97 increase is due in large part to Governor Zell Miller's budget redirection plan; that plan requires each state agency to trim its budget by five percent, and some of the money saved is being redirected to specific state projects. Edwin's acceptance into the ICWP in July 1995, helped end a crisis for his family, and especially his sister, lune, who lives nearby. Alter his rehab at Shepherd, Edwin returned home to live with his mother who provided him with 24-hour-a~day care for 14 years. 1n 1994, she was diagnosed with cancer, and she passed away earlier this year. When his mother became too ill to care for him, Edwin moved in with lune, who assumed his care. But the full-time demands weighed heavily on her, her husband and their two young daughters now ages six and two. Photo: A woman in a flowery button up shirt sits in a wheelchair with tubes coming off the side. Her head is back and her arms extended on the armrests and she is smiling slightly. Caption reads: Linda Stinsun Wurley is running for state representative — her campaign slogan is, “Paralyzed from the neck down, not the neck up." “Medicaid paid for two-and-a-half hours a day of assistance, but I still had to be there all the time," June recalls. “And they were going to stop paying because they only cover home health when it‘s temporary, and this was a long-term situation." Eventually, though she hated the idea, June tried to find a nursing home for Edwin, but none would accept him. Her only recourse, she was told, was to formally “evict" her brother from her home, forcing the state to place him in a nursing home. “l couldn't bear the thought of that," she says. Through an article in Spinal Column, she read about the waiver program. When Edwin applied, there was a waiting list of 200 people for 40 spots. But because of his acute situation, and through the intervention of his state senator, Edwin was accepted in July, l995, and began participating three months later. “It's a blessing," his sister says. “It's the first time since his injury he's been able to live on his own." The ICWP provides funding for a variety of services, including information and referrals, ‘personal support, home modification, skilled nursing, transportation, companion services, specialized medical equipment and supplies, counseling and personal emergency response services. BOXED TEXT: Managing one's disability is a personal matter first, and medical matter second. Back to article: Edwin has moved into a house in Macon which he rents. He received surgical attention for a pressure sore that had kept him bedridden for the previous five years, and which he could not afford to have treated before. He was able to get a new wheelchair, and under the guidance of his case manager, his home was renovated to accommodate his needs. The improvements included creating one big room out of two smaller ones, modifying the bathroom and shower, widening doorways and installing a deck with ramp to enable him to get around outside. June still cares for Edwin, but only for one eight-hour shift per day as one of three personal support sen/ice individuals. Having helped care for her brother since she was 13, June is qualified to care for him under the ICWP, and she is paid to train Edwin's other caregivers. Now that he's well on the road to independence, Edwin is looking into the possibility of furthering his education. "We are checking into schools," June explains. “He has a desire toward the ministry. But my lather is a retired electrician Boxed Text: What You Can Do - Find out what your state is doing by calling your state Medicaid agency’s home and community-based services department. Call or write your state representative and find out where he or she stands on the issue. -ADAPT is meeting in Atlanta November 2 through 7. For more information, contact Mark Johnson (404) 350-7490. -You Choose, an advocacy guide for lawmakers and citizens is available for Month at (716) 442-2916. -An Overview of Long Term Care Policy, findings and recommendations on home and community based services, is available from the Statewide Independent Living Council of Georgia at (404) 373-5454. continued from ADAPT 985 & 984 who owned his own business, and Edwin's thinking he might like to do that. Nothing is etched in stone." Thanks to the ICWP, he has the chance to consider opportunities once considered unthinkable. While Edwin McWilliams is only recently becoming more independent, Linda Stinson Worley represents how far someone can go when they get the assistance services they need apart from a nursing home or hospital setting. Linda met her husband, fellow patient Will Worley, at Shepherd in 1978. He was killed by a drunk driver in 1994. “If not for the program, l would be in a nursing home," says Linda. “There’s no life in a nursing home." As it is, Linda Stinson Worley leads a very full life. She is up each day at 6:30 a.m. and out of the house by 8:30. She runs errands and goes shopping or to the post office. She also attends commissioners meetings in Forsyth County, where she is politically active. Other days, especially on the weekends, she spends much of her time making campaign stops. That's because she's a candidate for state representative. The campaign is personal, to an extent, because the man Linda is expected to run against, Mike Evans, opposes the ICWP. Prior to the waiver program, she spent some time in a nursing home, and was later cared for by friends who eventually found themselves burned out by the process. Linda credits the ICWP with allowing her to hire a caregiver whose expertise permitted her to end her dependence on a ventilator and around-the-clock care. “What people need to understand is that the money going toward these waivers is not new tax money, but money being redirected from nursing homes," Linda explains. “It is more cost effective for people to live in their homes, and it's more productive to have people who are independent and happy because of it." Photo of a door Boxed Text next to photo: Although most nursing home residents are over 70, some are as young as two. Not all require the services of nurses on a daily or even a weekly basis. Insert article [barely legible] The Fight to Live at Home Jenny Langley is doing just fine thank you. Jenny is a former Shepherd patient and high quadriplegic who in 1990 proved to Georgia lawmakers that people who need attendant care and financial assistance can have a lifestyle that is minimally burdensome to taxpayers and personally fulfilling. A diving injury at 14 and paralysis at the C5/6 level was followed 10 years later by an automobile accident which left Jenny paralyzed at the C1 level and dependent on a ventilator. Her parents and sister care her at home by the financial strain was too much. After 3 years her insurance was exhausted, family resources were depleted and her parents home was lost to foreclosure. Jenny was facing life in a nursing home when money from Shepherd's indigent care trust fund helped her establish a prototype self managed independent living arrangement. She rented a home in Lawrenceville when which she share with her sister and two nieces and the following year state lawmakers committed $105,000 to fund the pilot project that would eventually become the ICWP. Today Jenny lives in Jonesboro where she continues to advocate for people with disabilities. She chairs the state's advisory group on independent care. Mark Johnson and other disability rights advocates are working to make sure that program not only survives, but is available for more people who need it. Mark is Shepherd's advocacy and community support coordinator and liason with several groups, including ADAPT (American Disabled for Attendant Programs Today) which is focusing its efforts this election year on independent living alternatives for peopel with severe disabiltiies. "ADAPT is not partisan and does not endorse candidates but it does educate folks and legislators about creating independent lving alternatives," Mark says. We need to let people know there is quality of life after disability. "Neither side (in the election) has elevated this to the level of importance we want but I'm optimistic" he adds. "I think there has been change and there will be greater change. How fast it goes depends on the outcome of the election. Boxed Text: 1.9 million Americans with disabilities have not choice but to live in nursing homes. Home and community-based services offer a choice. The end.