Downward Mobility

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Janet Spina has never liked living at the Waterview Nursing Home in Flushing. It’s a “good home,” she admits. But it’s also the place where she spent more than a year largely immobilized.

Spina, a 43-year-old divorced mother of three, has multiple sclerosis. In 1998 she moved into Waterview, depending on Medicaid to pay for her care. But Spina lacked a critical part of the care she needed: Though only able to move her right arm, nobody would pay for her to get a motorized wheelchair. As in a growing number of cases across New York State, Medicaid and the nursing home both insisted that they were not responsible for providing one.

When she first arrived at Waterview, Spina liked being part of nursing home life, participating in activities like group trivia games even when she found the questions too easy. But she grew frustrated, then depressed, by her need to rely on busy nurses to push her wheelchair around. At Waterview, a 200-bed private facility specializing in people with neurological disorders, about four staff members are typically available to assist the approximately 40 residents on Spina’s floor.

So last July, Spina’s doctors asked Medicaid to pay for a $5,000 motorized wheelchair she could operate on her own. The state Department of Health promptly denied the request. It claimed that nursing homes are responsible for buying all necessary equipment, using the funds already provided to them for Medicaid residents.

Meanwhile, Waterview insisted it couldn’t afford to buy the chair itself. According to Executive Director Larry Slatky, paying for expensive devices like motorized wheelchairs would drain the home of its Medicaid funds and make it impossible to provide care for the 80 percent of Waterview’s residents who rely on Medicaid for their insurance.

Spina appealed. But two hearings and a full year later, she still had no chair. By then, her ability to speak had deteriorated so much that she could barely articulate her requests to the caretakers she depended on to move her.

Toby Golick, director of Bet Tzedek Legal Services Clinic at Cardozo School of Law, knew that this was not the first time a Medicaid recipient in a nursing home had trouble getting a special wheelchair. The cases she had seen followed the same pattern: The state was routinely shifting responsibility onto caretakers for the disabled. “The defense that understaffed nursing homes will always have someone to push a manual wheelchair is preposterous,” she says.

In response to what advocates for the disabled say is a recent upswing in the volume of cases like Spina’s, Golick and other lawyers are suing the Department of Health in federal and state courts to get motorized chairs for their clients. Like some of the others, Golick’s suit asserts that the Department of Health’s denial of Medicaid coverage for motorized wheelchairs to people living in nursing homes violates the Medicaid Act and the Americans With Disabilities Act. Those laws require states to furnish the disabled poor with the means to “attain or retain capacity for independence and self-care” in the most “integrated setting” appropriate to their needs.

But right now, there’s no one in New York State who can guarantee that will happen. The state claims it already pays enough to nursing homes to take care of patients who rely on Medicaid. Meanwhile, as they reckon with managed care and compete with upscale assisted living centers, nursing homes are pleading poverty. According to the New York State Partnership for Long Term Care, nursing homes in New York City received an average of $251 per day for each resident in 1999–not enough, homes say, to pay for expensive equipment.

Stuck in the middle are disabled people on Medicaid, who must wait for nurses who are perpetually busy bathing, dressing and medicating other severely disabled patients. Advocates for the disabled are growing increasingly outraged at both sides and say the state and nursing homes are each out to minimize how many Medicaid dollars they have to spend. “It’s a collegial partnership,” complains Anne Emerman, vice-president for legislation of Disabled in Action of Metropolitan New York.

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New York’s reluctance to shell out for expensive special medical equipment is nothing new. According to Marge Gustas of New York State Assistive Technology Advocacy Project, “There is a long history statewide of denying individuals in nursing homes requests for payment for certain special mobility equipment.” The state’s decisions were inconsistent, and the people they affected frequently did not have the resources to challenge them.

But two developments have led to the recent rash of lawsuits. The disabled are having an easier time finding advocates to help them fight, in the wake of a state courts ruling that called for increased access to legal representation for the disabled at hearings held in nursing homes.

Lawyers for the disabled also say the state is now more aggressive about fighting requests. According to Valerie Bogart, a lawyer at Legal Services for the Elderly, “You used to be able to win a request for these special chairs at administrative fair hearings by proving their medical necessity,” she says. “Now, there are a whole bunch of cases pending in different courts.”

Nina Keilin, an attorney who works with Bogart, explains that in the last three or so years, the state has been “trying to narrow the exceptional type of services it will pay for outside the regular rate of reimbursement to nursing homes.” This has affected not just the provision of wheelchairs but also AIDS medications, mental health services and equipment for disabled people living at home. (The Department of Health declined to comment on its handling of these cases.)

As a result, attorneys say, New York is far from where it should be, both legally and ethically, in providing meaningful assistance to people with disabilities who rely on Medicaid for their care. Last year, in a case called Olmstead v. L.C., the U.S. Supreme Court ruled that states cannot unnecessarily segregate disabled people in institutions, and that they must be integrated into the community whenever possible. Golick interprets Olmstead as applying to patients inside nursing homes as well. “The Olmsteadi case is helpful because the Supreme Court read the ADA expansively as a law designed to remove barriers that keep people from participating in community life,” says Golick. For clients like Spina, Golick says, their community is by necessity their nursing home. “Denying someone self-mobility is discriminatory. In a nursing home, the state is not doing all it can to integrate residents.”

At hearings, health department representatives don’t even bother challenging advocates’ assertions that patients have a legal right to their chairs. Instead, the state has consistently exploited a single technicality. In one of Golick’s cases, the department claimed the chair a nursing home resident requested was not a customized device, as required under state law, but rather “an off the shelf motorized model” adjusted to his use but also readjustable for use by others at his nursing home. The chair was therefore the property and financial responsibility of the home.

But many wheelchairs built now can be characterized as being “off-the-shelf.” Medicaid law has not caught up with the wheelchair industry’s increasing use of standardized component parts for custom-built wheelchairs, says Gene Murphy, executive director of Friends and Relatives of the Institutionalized Aged.

There was no question that Spina needed a specialized chair. With help from Waterview, she was able to exploit a loophole and obtain a chair through Medicare. When she finally got the chair in September, she felt a taste of freedom. “Like having legs,” she says.

Yael Schacher is a Brooklyn-based freelance writer.