BANISHING THE DISABLED
Conniff, Ruth
Banishing the Disabled BY RUTH CONNIFF On New Year's Day, hundreds of disabled people in Wisconsin suddenly confronted the prospect of entering nursing homes. The state budget, passed last fall,...
...And politicians of both parties—from President Clinton to Wisconsin Governor Tommy Thompson, who is the head of the National Governors' Association—are advocating giving the states more flexibility to try cost-saving experiments...
...Martha, who is sixty-two and has arthritis, and her husband, who is sixty-five and has a bad back, rely on attendants to help Terri bathe and dress and get in and out of bed...
...According to a letter sent to home-care providers by the Department of Health and Social Services, the "small percentage of people having to enter nursing homes" because of the state's home-care cap, will be "free to leave the nursing home for work, education, and social events...
...Eight of them are sitting around the lounge area in wheelchairs, staring off in different directions...
...The Community Options Program has been very successful in terms of keeping people in their homes and saving money...
...According to Angela Dombrowicki, chief of the policy section of the Bureau of Health Care Financing, the cap on home care "puts some kind of rationality in the system and sets some limits...
...Meanwhile, record numbers of people are still uninsured...
...Republicans in Congress have proposed cutting federal Medicaid funds by as much as 30 percent over the next seven years...
...Because of this, some people don't believe the state will save money with the cap...
...It's a whole lot of people...
...Over the long haul, institutional care is also very expensive...
...Even a relatively pleasant place like City View, with a friendly, empathetic staff, is not geared toward helping people lead active lives outside the institution...
...Now, certain people with really high needs will never bt eligible again...
...Today is "hug day," Griffin explains...
...Although up to now Medicaid has been "an open-ended entitlement" by the state's definition, there is not enough home care to go around...
...Thus, people with disabilities in Wisconsin have become the most reluctant of shoppers, making their phone calls to nursing homes, and praying for rejection...
...bill to repeal the cap...
...Like Verridan, the Desjardins phoned ten nursing homes to try to get an exemption from the cap...
...must make the same choices about care setting as private-pay individuals...
...But the program's administrators, wl0 are still dealing with an inadequate poql0| funds, are not thrilled about the trade-off "It's a major change in state policy," gays Francis Genter, who runs the Community Options Program in Dane County...
...Last year there were more than 1,100 people on the waiting list for Community Options just in Dane County...
...The rooms are sunny but institutional, with gray tile floors and an antiseptic smell...
...It's not fair," says Verridan...
...Cost is out front...
...We need to get health costs under control, and we need to look at quality," says Edith Rasell, an economist at the Economic Policy Institute in Washington, D.C...
...The Department of Health and Social Services estimates that, statewide, between 300 and 500 people on the waiting list can be served once Community Options stops serving people who exceed the cap...
...We got no's front ten places...
...Legislators are proposing caps, managed care, and other efforts to deal with the growing expense...
...Many have heard horror stories about nursing homes...
...The elderly and the disabled are often pitted against each other, competing for slots...
...Just walking through, you can see how a young person might not want to live here," she says...
...So, in 1982, the state created the Community Options Program for people at risk of going into nursing homes...
...A lot of them are like Tern...
...With home-care services, there really are no incentives to limit spending on care...
...Community Options pays for some things that Medical Assistance doesn't cover...
...Medicaid recipients Ruth Conniff is the Managing Editor of The Progressive...
...Now the legislature seems intent on pushing people toward institutions...
...He came in wearing a rock T-shirt," Griffin says, smiling...
...One resident hugs me and has me write my name on the heart-shaped card where she's collecting the signatures of her hug buddies...
...The\"re in their own apartments and now lhe'v ha\e to gne that up" Maureen Gnttin takes me on a tour of City View...
...Over the next five years, Medicaid enrollment across the nation is expected to rise by 21 percent...
...savs Martha...
...Taxpayers can no longer afford open-ended Medicaid entitlements," a memo from Wisconsin's Department of Health and Social Services explains...
...But the leeway and flexibility they're used to having wouldn't be there...
...There's no question that there's a health-care crisis...
...Even in City View's "Altercare" wing, where residents have private rooms and the atmosphere—a converted farm house—is more homey, it's extremely quiet...
...A brightly colored calendar in the hall lists the day's activities: bingo, coffee hour, and Lawrence Welk...
...People for whom no nursing-home bed is available are also exempt—if they can demonstrate that the ten nursing homes nearest them won't let them in...
...They can make up the difference by "paying for a few hours of care themselves," or by "encouraging neighbors, friends, or volunteers to assist in care...
...People are so averse to the idea of going to nursing homes, they are accepting the cutbacks in care and patching things together with friends and volunteers and family members," says the Coalition for Advocacy's Froemming...
...Still, there is the question of priorities...
...We need a comprehensive health-care solution, and nobody is even talking about that...
...This scares the Desjardins...
...Terri's needs are more skilled than what's available in' nursing home...
...I have some constituents who are making do with less," says Representative Hanson...
...The Department of Health and Social Services points out in a memo that disabled people whose care is capped don't have to go to nursing homes...
...In the near-term, however, setting caps may work as a cost-cutting measure, if only because disabled people are determined to stay out of nursing homes, whatever the personal cost...
...The state has sent out notices saying these reasons aren't good enough," says Ray Froemming of the Wisconsin Coalition for Advocacy, which is filing a lawsuit against the home-care cap...
...We had a guy in here once who liked listening to loud music...
...What's happening in Wisconsin marks a dramatic shift in the way the federal and state governments treat Medicaid, the program that provides health care to millions of poor, elderly, and disabled Americans...
...Ultimately, he went to a veterans' home, she says, where he apparently fit in better...
...But there's an awful lot of young people who are going to be hurt.' ing to a nursing home seems like a real possibility...
...Medicaid rolls are indeed expanding at record rates...
...Residents sleep two to a room, in hospital beds with a curtain between them...
...Some of these institutions don't look that bad...
...So the Desjardins only got a temporary exemption...
...But in Terri Desjardin's case, because of her parents' age and declining health, go*lt just seems cruel____I realize there's not enough money to go around...
...A soap opera is on the TV at the front of the room, but no one seems to be watching...
...Because of a shortage of personal-care workers, the Medicaid personal-care program can't serve everyone who wants help...
...Thev had their full-time home health care restored, for two months...
...But the state worker who handled * Desjardins' exemption told them that some of the reasons the nursing hoB« gave for rejecting Terri were not acceptable...
...We've never had someone here who's going to school and working," says Griffin...
...Some people are terrified because they've been in nursing homes and they have not done well," says Froemming...
...The state budget, passed last fall, placed a cap on funding for community-based services, including personal-attendant care...
...I was in a nursing home once, and believe me, I don't ever want to be in one again," says Steve Verridan, who suffered a spinal-cord injury in a diving accident...
...It just seems cruel...
...He said he didn't like the aged population, even though he was sixty-nine years old himself...
...It's hard to imagine having friends over, hanging out, turning up the radio...
...Several women perk up when Griffin walks by, and she chats with them about getting their hair done, and about their health problems...
...But there's an awful lot of young people who are going to be hurt by it...
...I'm not sure it is a savings at all," says state representative Doris Hanson, who has helped introduce...
...But keep in mind what it's like if you're twenty-two or twenty-five years old, and you're thinking about spending the rest of your life there," Bob Deist, the director of personal-care services at Access to Independence, says about nursing homes...
...It's hard...
...He now works at Access to Independence, a nonprofit agency in Madison, Wisconsin, helping other disabled people find home care...
...According to the state, capping care for the most expensive clients will free up slots for people with less expensive needs...
...Her skill level was too high for them to take care of her...
...Quality of life forrit-izens takes a back seat," says Genter...
...It's time to set priorities...
...Obviously, they needed to think this through more carefully before...
...But disabled people and their advocates are extremely skeptical...
...In a few' weeks, they will have to start making phone calls again...
...Terri can't speak or get around the house without assistance...
...It's a major value judgment to require people to move to institutional settings because their costs are high...
...But you're not going to fix the problems with the health-care system by attacking Medicare and Medicaid...
...But the state is comparing high-cost care in the conum-nity to average-cost nursing-home care, "The only thing not capped is nursing homes," says Bob Deist...
...Most often I've been saying yes, and then they try to get off the phone in a hurry...
...I'd hate to see anyone go somewhere they don't want to be, and it seems like most of them don't want to be here...
...They've had recurrent respiratory infections, bedsores, or they've been left without bathing for a week...
...When the new law went into effect, Verridan—like many of his clients—had to call ten nursing homes within a fifty-mile radius of his home in order to prove they wouldn't take him...
...But, unlike Medicaid, it is not an entitlement program...
...It would be such a loss for her...
...To bring Terri into compliance with the cap, the state cut back the Desjardins' attendant care to six-and-a-half hours a day "It's just very difficult for us to handle her all by ourselves," Martha says...
...I know how mucji people want to live in the place of their choice...
...These institutions are a long *>J from home...
...Anyone whose home care costs more than the cap was directed to the nearest residential-care facility...
...What worries Francis Genter is that, as the state sets priorities for health care, giving people the most independent and rewarding life possible is no longer the primary concern...
...The caps don't include people under twenty-two years of age or the ventilator-dependent, who are automatically exempt...
...In the past, the average cost of the program had to be lower than the average cost of institutional care...
...Since the creation of the Community Options Program fourteen years ago, when it was hailed as a way of cutting costs and helping people lead independent lives, the state has done an ideological 180...
...They're trying to go without some important health care to stay in the community, and that's a real concern...
...It's cheaper to be out in the community, when you add all the 'high-cost people' and 'low-cost people' together...
...Thev're just getting started, going back to school...
...On January 1, the state began enforcing the cap...
...But certain individuals could have more expensive care...
...Medicaid also doesn't cover services like laundry and grocery shopping that the elderly and disabled need in order to live in the community...
...In some scenarios, we'd be able to meet their needs...
...We've done what we can to comply," says Martha Desjardin of Sun Prairie, Wisconsin, whose thirty-six-year-old daughter, Terri, has a progressive neuromuscular disorder...
...Unfortunately, she says, she can't always tell her nervous callers what they want to hear...
...The price of freedom for some people with disabilities is just too high, the state legislature has decided...
...They're just looking for a 'no' answer...
...It only serves a fraction of the people who apply...
...Unless his phone calls earn him an exemption, he could find himself back in an institution...
...They're learning as they go...
...I wouldn't say it's impossible...
...Disabled people and their advocates have complained that it is unjust to single out people whose home care is expensive...
...She has started going to school several nights a week, and doing well, and she re-alb' fears that's going to come lo an end...
...This has caused a wave of fear and outrage among the disabled...
...In the end, Wisconsin isn't going to save very much money with the home-care cap...
...There's been a couple of people I've been able to say no to because they needed transportation provided, or they had space needs, they had a pet, something like that...
...But there was never any explanation of how people should know if what the nursing homes say is accurate...
...We've gotten several calls . . . I've mostly talked to people in their twenties or thirties who are going to school and have jobs," says Maureen Griffin, the admissions coordinator for City View nursing home in Madison...
...All of these people have home healthcare expenses that exceed $2,325 per month—the average Medicaid portion of nursing-home care...
...That's the institutional bias...
...This is a first step toward a more managed system...
...It's not clear how long that can hold up...
...For each of the next two fiscal years, the Bureau of Health Care Financing projects it will save $5,686,500 out of a total annual Medicaid budget of $2.4 billion, or about 0.2 percent—not much, considering the agony of the people affected...
...As the disabled scramble for exemptions, confusion and hard feelings abound...
...Under the new law, 278 people in Wisconsin are affected by the cap oafhe state's Community Options Progip, which was created to fund commuxfty-based alternatives to nursing-home Another 500 to 600 people are affecteiby the cap on Medicaid reimbursements for home health care, the state estimates...
...For the first time in recent history...
...According to the state, sympathetic nursing-home staff have been handing out excuses too readily...
...City View's residents are quite elderly...
...I realize that there's not enough money to go around...
...And it's not just us...
...Of course you're calling these places hoping like hell to be turned down," he says...
Vol. 60 • March 1996 • No. 3
