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Care may dwindle for AIDS patients
By WES ALLISON, Times Staff Writer For the past four years, a special Medicaid program has paid for massage to keep Patsy Stewart walking, routine housework to keep her home clean, meals to keep her weight up. She recently fell in the shower and broke her right arm. A day after Stewart left the hospital still weak from pneumonia, a case worker arranged for a bath seat and physical therapy. The program, called Project AIDS Care, was designed to save the state money by allowing poor patients with full-blown AIDS to continue living, and to die, in their own homes, rather than in nursing homes or hospitals. Ms. Stewart, 48, who was diagnosed in 1993, said the program has allowed her to keep as many vestiges of her old life as possible. "I would probably be in an nursing home, or an assisted living facility (without it)," she said. "This has just let me live more independently, and to live comfortably in my own home." She and 6,000 other Florida AIDS patients in Project AIDS Care, including about 1,200 in the Tampa Bay area, soon will have to make some other arrangements. The program faces a $10-million cut -- 43 percent of its funding -- over the next year as part of the Legislature's recent efforts to balance the state budget. Officials with hospice groups and other agencies that provide the care contend the reductions are short-sighted: Cutting key services likely will force more patients into institutions, costing more in the long run. These patients are very sick, with a plethora of health problems, and most have no family or other safety net to fall back on, the officials say. Many suffer from dementia and long-term drug abuse. "I'm just at a complete loss. I am convinced that somebody in Tallahassee does not understand the ramifications of this," said Lorraine Langlois, executive director of Metropolitan Charities Inc. in St. Petersburg, which has 250 clients in the program, including Ms. Stewart. Medicaid administrator Bob Maryanski said agency staff tried to pick cuts that would disrupt patients as little as possible. The cut was mandated by the Legislature, and half ($5-million) must go during the last half of the state's fiscal year, which ends June 30. "The last thing we wanted to do was to cut services to this population," Maryanski said. "It's a fragile population, and most of the patients who use this service have serious medical problems, they can't do a lot for themselves." As for concerns the cuts eventually will cost the state more money, Maryanski said only time would tell. "I can't say that in every case somebody is not going to end up in a nursing facility . . . but we can only hope that's going to happen in a minimum of cases," he said. The Tampa AIDS Network, Metropolitan Charities and other agencies learned of the cuts on Tuesday morning. On Thursday, Medicaid officials agreed to meet with the Florida AIDS Action Network, an advocacy group, early next month to discuss ways to soften the impact. "Within the program, what exactly will be cut is at their discretion, and we'll be helping them to figure out the most appropriate way to make that reduction with minimal impact on clients," said Dr. Gene Copello, executive director of Florida AIDS Action. As proposed, the cuts would eliminate five in-home services: physical therapy, housekeeping, health assessment, pest control and therapeutic massage. Several more would be significantly reduced, including in-home meal service. But the toughest loss, advocates say, would be a two-thirds reduction in case management. For sick people who rely on public assistance, a case manager is akin to an administrative assistant for life. He or she helps the patient navigate bureaucracy and find free or low-cost services to augment government aid. Case managers also help get the electricity restored, scramble to find next month's rent or arrange transportation to doctor's appointments. Currently, Medicaid pays for case managers at a rate of $44 per hour. A typical case manager has about 40 clients and spends about three hours a month on each, Langlois said. Under the proposed cuts, Medicaid will pay just $50 per client per month. That will force agencies to fire some case managers and give the rest more clients than they can adequately serve, said Langlois and Janna Zumbrun, executive director of Tampa AIDS Network. "A lot of (clients) don't function well on their own. They won't know what to do," said Mark Davis, case management director at Metropolitan Charities. The Project AIDS Care reduction is part of slightly more than $1-billion the Legislature recently cut to balance Florida's budget. Copello said AIDS funding overall made out well: All AIDS-related programs were spared except this one. But while home health care may may appear luxurious to some, for those who qualify it's a necessity. AIDS destroys the immune system, and people who have it typically suffer recurrent bouts of opportunistic infections. Ms. Stewart has had pneumonia so many times her lungs are permanently damaged, forcing her to use bottled oxygen. On Oct. 27, a day after being released from the hospital, she took off her oxygen tube to shower and fell, breaking her right arm. Cleaning, and even cooking, often takes too much effort and she counts on the home health service from Project AIDS Care for help. "Just to do the little things like that, and to help keep my house germ free, is important," she said.
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