This is definitely a long article. It was printed in the Chicago Tribune newspaper and is about how the 97 Balanced Budget Act has made it more difficult for persons with chronic illness to get home care. I send this article to the listserv for your information. The majority of home care agencies are doing the best they can, but the Fed Govt has severely limited us. If anyone is interested he/she could get to Congresspersons and let them know. They handle the key to changes and so far they don't think homecare is worth the trouble. Sorry, I sing the same old refrain. But just read it and see what you think. KdG 53/52/45 VULNERABLE CAST ADRIFT BY REFORMS IN HOME CARE By Judith Graham Randy Walk is approaching the new year with a sense of dread. A week ago, the Medicare home health aides who helped him live independently in an apartment in Cincinnati for the last several years walked out the door for the last time. Now, this 42-year-old quadriplegic--who cannot transfer himself from his bed to his electric wheelchair, nor bathe or dress himself, nor clean and flush his catheter--must find other sources of help. He has called 14 Medicare home health agencies in his area, but none has agreed to provide him with care in the afternoons. Walk has nearly exhausted his small pension paying out of his pocket for aides in the mornings. Asked what he is going to do, Walk replied quietly, "I don't know." Increasingly over the last year, since the government sharply reduced payments for many Medicare home health agencies, reports are surfacing of Medicare beneficiaries who have lost home health services, have seen them cut back significantly, or cannot get care when they are discharged from a hospital. Hit hardest are Medicare beneficiaries who use home health care the most, consumer advocates say: the chronically ill and disabled who are disproportionately poor, very old or living alone and members of minority groups. "There's a growing crisis in access to Medicare-covered home health care, particularly for people with complex and long-term medical conditions" such as congestive heart disease, multiple sclerosis, severe diabetes, spinal injuries, Alzheimer's disease and the aftereffects of a stroke, said Diane Paulson, manager attorney for the Medicare Advocacy Project at Greater Boston Legal Services. The crisis affects one of the most popular benefits under Medicare, the federal government's $224 billion health program for the elderly and disabled. Nationally, 3.6 million people used Medicare home health services in 1996. Many are middle class. They qualify for Medicare home health if they need skilled medical help and are homebound. The need for such services is compelling: Research shows that about one-third of Medicare's 38 million beneficiaries cannot perform basic tasks for themselves, such as dressing, feeding, bathing, taking medications or handling their bathroom needs, because they are too sick or too old. But increasingly, Medicare home health agencies say they cannot afford to care for the most vulnerable group of all, people with complicated medical needs who need lots of services. In the last 15 months, between 850 and 1,200 Medicare-certified home health agencies--or nearly 1 out of every 10 Medicare agencies in the nation--have closed, citing stingy government payments, according to various estimates. In Illinois, 36 Medicare agencies have shut their doors, out of a total of 382 providers. The root of the problem, advocates and industry sources say, is Medicare's new interim payment system for home health, enacted as part of last year's Balanced Budget Act. The rocky transition from the traditional, largely uncontrolled system of payments to next year's system with better controls illustrates just how difficult it is to reform Medicare and rein in spending without causing painful dislocations that hurt people in unanticipated ways. Without reform, Medicare is expected to go broke in about a decade; a national commission is examining Medicare reform options. The interim home health system was designed to save Medicare billions of dollars. It cuts average payments per visit by about 20 percent and for the first time caps what Medicare will pay agencies for treating beneficiaries. Industry officials call these controversial "per beneficiary caps," which range from an average $2,700 a year to $5,500 depending on the age and location of an agency, a form of health-care rationing. People who require far more care than the caps allow are at special risk of losing services, officials warn. Walk would qualify under the beneficiary cap for $2,615. If Walk received services seven days a week for two hours at a time, as he had been getting, his care would exceed that amount in just over a month, making him a money-losing proposition after that. The Health Care Financing Administration, counters that the caps create incentives for agencies to be efficient. Spokesman Chris Peacock says beneficiaries still should get all care that is medically necessary. Agencies should be able to balance high-cost clients with large numbers of low-cost clients, he suggests, making the capped amounts stretch further. Furthermore, Peacock says, better financial controls are necessary to protect Medicare's future, safeguard benefits for all its members and root out fraud. Even as the number of Medicare beneficiaries receiving home care services has more than doubled since the mid-1980s, annual costs for Medicare home health have soared to about $18 billion, up from $2 billion in 1985. This huge pot of money has attracted unscrupulous operations. In a much-cited July 1997 report, federal investigators found that about 40 percent of all Medicare home health bills should not have been paid either because doctors' orders were not in place or because services could not be justified medically or because paperwork was not in order, among other factors. Just last week, the government announced it broke up a major home health fraud ring in South Florida that had bilked the government out of $42 million. Still, the sharp rise in Medicare's home health spending cannot be attributed solely or even largely to fraud, and efforts to constrain spending are running smack into a countervailing trend. New medical technologies have made home care a viable option for people who a few years ago would have received long-term care in nursing homes. Home care is cheaper than nursing home care and far preferred by most elderly and disabled people. And over time, Medicare's home health program has become something of a long-term care safety net for people with chronic illnesses. But now this safety net is being rent. Consider the Gilberto family of Wakefield, Mass. Their 37-year-old daughter, Laurie, has multiple sclerosis and has been wheelchair-bound for six years. Medications help control the tremors and muscle spasms that rack her body. Her speech is blurred beyond recognition; she cannot hold a pen. (She qualifies for Medicare because of her disability.) So it was Laurie Gilberto's parents, Pete and Rosemary, who went to bat for her when her home health agency cut her services in half in November 1997 to two hours a day, Monday through Friday, just after the interim payment system was established. Although her doctors, who had authorized Medicare home care services for her for many years, intervened, their appeals did not succeed. After re-evaluating Gilberto in May, the agency decided she didn't need skilled care at all, one of the conditions of receiving Medicare home health benefits. Since then, she has received no services, including the physical therapy she used to get twice a week. "She's deteriorated quite a bit," her mother, Rosemary, said in a telephone interview. "We just don't know how much longer we'll be able to keep her at home." Given these kinds of dislocations, it's no surprise that at least seven lawsuits have been filed against the government, challenging the changes. (Cases brought by home care agencies on constitutional grounds have been dismissed; at least two suits brought by beneficiaries are outstanding.) The General Accounting Office and Medicare's official advisory commission are looking into the impact of program changes on beneficiaries. In September, industry and consumer groups marched on Washington to highlight the issue, bearing a 2-mile-long petition. Several members of Congress have promised to take up the matter after the holiday break if impeachment proceedings against President Clinton allow for action to be taken. (Minor modifications were made in November, but they did not increase payments substantially.) Meanwhile, experts warn that problems will intensify in the coming months as thousands of home care agencies across the country receive letters demanding that they pay back money--often more than $100,000--to Medicare. Many of these overpayment requests are a direct consequence of the interim payment system and could force large numbers of agencies to file for bankruptcy protection, policymakers and lawyers said. Simply put, the government has paid agencies throughout most of the year at old rates, even though new lower rates were in effect. Now, it wants back the amounts it overpaid. Arlene Maxim, who owns a small agency specializing in medically complex cases in Grand Rapids, Mich., received her overpayment letter, asking her to return $97,900 to Medicare, in the second week of December. Several weeks before, she had discharged all but one of her 60 patients and released most of her 20 staffers. "I just can't make it anymore on what Medicare is paying," she said, adding that she expects to file bankruptcy soon. "Year 1 of the interim payment system was bad, but Year 2 will be much, much worse unless some relief is forthcoming," said Gary Bowers, a Baltimore consultant and former Health Care Financing Administration audit director. According to the National Association for Home Care, the number of Medicare beneficiaries using home health services appears to be dropping for the first time in years. It estimates that Medicare's home health care rolls have declined by 800,000 beneficiaries, said William Dombi, vice president of law. While the government disputes those figures, its data show that the average number of visits per beneficiary is declining "significantly" this year, a spokesman said. To the extent that fewer home care operators are pushing unneeded services on seniors who think the visits are free--a relatively common type of fraud-- that's a desirable trend. But to the extent that people with significant medical needs are being affected, problems are arising. Roland Cote, 49, a blind diabetic who had a kidney transplant and a toe amputated last year, has been entirely on his own in dealing with Medicare hassles. Cote, who lives in Norwich, Conn., had been getting visits seven days a week from home health aides who were checking on his circulation. Once a month, a nurse evaluated him and checked his medications. One day this year, Cote remembers, he got a call from his agency telling him skilled services were no longer necessary. His aides were cut to four days a week, then two, then they stopped coming. Cote asked whomever he could, "my friends and neighbors, people from church," to help out, but in his nearly total isolation, things didn't go well. He stopped eating properly, missed medications, and several times had severe insulin reactions. Eventually, with the help of an advocate, he succeeded in regaining services twice a week but only after he signed a paper promising that he would pay whatever Medicare didn't pay. Several experts suggest there is help available to people such as Cote if they would consume their assets and qualify for Medicaid, the joint federal/state health program for the poor. Medicaid is the main payer of long-term care in the U.S., including nursing homes and home health care. But Medicaid officials blanch at the prospect of paying for services that Medicare won't cover now and seeing state health-care budgets swell. Several states have very limited home care benefits available. One way state Medicaid directors have kept budgets in check over the last several years is by aggressively encouraging beneficiaries who also qualify for Medicare home health to get those services first and use Medicaid to supplement whatever Medicare won't pay. That cost-shifting strategy won't help agencies such as Gibson Health Services of East St. Louis, Ill., whose elderly, poor, mostly minority patients are almost all on Medicare. The agency has reduced staff, cut benefits and slashed visits to patients, but it is losing money under the interim payment system. Just before Christmas, Gibson's staff planned to tell clients with complex conditions like diabetes, heart failure and dementia that it no longer has the resources to supply them with services. Although agencies cannot deny Medicare beneficiaries benefits to which they are entitled, they can decline to offer services if they do not have sufficient staff or other resources. "Our patients are poorer than most, sicker than most, and most do not have support systems to back them up. The only alternative for them that I can think of is a nursing home," said Pat Gibson, a nurse and the agency's chief executive. "Which is sad because most of them have been living independently successfully, with help, until now." !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Karen deGraaf e-mail to: [log in to unmask]