Medicare Policy Keeps Door Shut on Disabled

Personal Health

When someone walks into the wheelchair clinic at Mount Sinai Hospital in New York, Jenny Lieberman begins preparing to say that there is nothing she can do to help. A physical therapist, Lieberman oversees Mt. Sinai's wheelchair clinic and evaluates people with medical equipment needs. The health coverage that many of her clients have is Medicare, the federal health program for seniors and people of all ages with permanent physical disabilities.

But Medicare has strict policies on what durable medical equipment it will or will not cover, including power wheelchairs. Lieberman reads down the standard list of questions, searching for a way to get the equipment that she knows her client needs. Then she gets creative in trying to procure coverage for her patient, from Medicare or another health policy. In the end, though, it boils down to one question: Does the patient need a wheelchair inside the home?

Under Medicare policy, the needs of someone outside the home are negligible. If you can limp 10 feet to the bathroom, or move from the refrigerator to the sink to make dinner, then Medicare will not cover a power wheelchair, even if you can't walk down the block to the grocery store for the food in the first place. So chances are that if you are walking when you come into Lieberman's clinic, Medicare won't pay for your wheelchair. And it's those days that Jenny Lieberman hates her job.

Lieberman recalls a recent client, a young woman with multiple sclerosis who can walk short distances. She lives with her parents, who are in their 60s, and manages to navigate around the house, even on "bad days." But in order to go anywhere outside, including to medical appointments, she depends on her parents to push her manual wheelchair. Lieberman couldn't figure out a way to justify to Medicare the necessity of a wheelchair for "activities of daily living" inside the young woman's home.

This young woman and her family left the clinic resigned. But often people get upset when they find out that Medicare won't pay for medical equipment that they need. "Some people get angry at me," Lieberman says. "I've had people start crying. They feel helpless -- they can't get out of their homes."

Especially for seniors, this predicament can be disheartening and frustrating. "They've worked so hard all these years, but now can't get the equipment they need to keep living their lives," Lieberman says.

Few are in a better position to know the effect of Medicare's policy than the clinicians who see its problems day after day and struggle to find a solution. The Clinician Task Force, a 3-year-old organization, is a collaboration of experienced and respected clinicians, including physical therapists and assistive technology practitioners and suppliers, who are dedicated to changing the policy.

A co-chair of the Clinician Task Force, Barbara Crane has been a physical therapist for over 15 years, primarily in the area of wheelchairs and seating. "I work a lot with people who need wheelchairs and are covered under Medicare," she says. "I have seen people who I would certainly recommend a different device for, [but] we end up having to go with another one because Medicare won't cover it."

It seems like a no-brainer to many: Why only pay for a wheelchair intended for use inside the home? Isn't outside where someone would need a wheelchair the most? And why does nobody know about this?

Because this particular Medicare policy affects a smaller population than other issues such as prescription medications, it is not as much on the political radar of many advocates, legislators and beneficiaries. "In fact," Crane explains, "most people covered by Medicare are unaware of the problem until they get denied coverage for a mobility assistance device such as a power wheelchair."

For many years, Medicare only paid for wheelchairs if someone was nonambulatory, meaning unable to walk at all. While the Center for Medicare and Medicaid Services revised the guidelines to include the inability to complete an "activity of daily living," the qualifier remained: "in the home."

"There is a group of people out there who are not getting what they need," Crane says.

Trapped inside

For many disability advocates, the right to live in one's home, within a community of one's choosing, instead of a large institution, was a heralded victory in disability rights. In the landmark case Olmstead vs. L.C., the Supreme Court ruled that people with disabilities had the right to live outside of institutions, to be supported in their own home, and that being forced to live in an institution was a violation of the Americans with Disabilities Act.

But now home feels like a prison to some. The bars are invisible, but the virtual house arrest stands intact.

If it were not for employer-provided health insurance, Judi Rogers knows that she could easily be trapped inside her home. Rogers was born with hemiplegic cerebral palsy, which limits her mobility on the left side of her body. Even so, she was walking at the typical age of one, and did not have to depend on a wheelchair to get around. That changed when she was diagnosed with breast cancer. "The chemo just wiped me out," Rogers recalls.

Because she was lying down for such an extended period of time, her already challenged muscles knotted, and she could barely walk. Suddenly simple things became difficult. It was chancy going to the grocery store because if they didn't have a motorized cart available, she just had to turn around and go home. "Something like that basically stopped me from going about my life," says Rogers.

As a result of her battle with cancer, she ended up needing a wheelchair. Luckily, she had private health insurance that paid for the wheelchair; otherwise, she may have been in for a struggle. Now this power wheelchair is 10 years old. Rogers doesn't depend on it as much anymore, but she remembers how everyday tasks became long and tiring and now advocates for families who have to work around Medicare's draconian policy.

Last fall, Medicare made the guidelines even more rigid, categorizing people by types of diagnoses in order to decide what kind of wheelchair to cover.

"You really can't just group people with the same diagnosis," says Lois Tucker, an occupational therapist who works at a Rehabilitative Technology Supplier (RTS) in New York. "Two people with rheumatoid arthritis can be very different cases. One person could be basically paraplegic, but Medicare still would only cover a group two [lower functioning] wheelchair for them."

Worse yet, Medicare will not cover the highest functioning wheelchairs (groups four, five, and six) at all now.

Jenny Lieberman predicts that what seems like an attempt to save money will begin to require more and more funds as the long-term consequences of the stingy policy materialize.

"If someone cannot make it a couple blocks to the grocery store, then a home care worker may have to push a manual wheelchair down the street," she says. "Using improper or inadequate equipment can result in further injury, which then requires more assistive equipment and home care workers."

The shadow of fraud

Though the origin of the "in the home" clause is obscure, some advocates believe that it started out as a way to distinguish between equipment used in a hospital setting and equipment used in a personal home. Now it's being used as a way to save money.

The substantial cost of a power wheelchair (at least $1,200) became a magnet for perpetrators of fraud in the 1990s. The Center for Medicare and Medicaid Services tried to stop the fraudulent claims after they realized the excessive charges for power wheelchairs, but were hard-pressed to sort out what was real from what was false. As a result, requirements became more stringent as to who could receive a power wheelchair and required more paperwork to prove the validity of a claim.

"There's this shadow of fraud and abuse that's difficult to overcome," says Henry Claypool, policy director of Independence Care System, a nonprofit for managed long-term care in New York City. "As a result, people are very guarded about the Medicare program and its expenditures."

Lois Tucker offers an additional reason for the increase in power wheelchair claims in the mid- to late '90s: "Manufacturers were advertising directly to users."

As more people became aware of the possibility of power wheelchairs, they bought them and then tried to get reimbursed through Medicare, resulting in a striking rise in claims. That's not to say that fraud didn't happen, Tucker says, "It's just very unfortunate for everyone else who got stuck with the consequences."

CMS then tightened the qualifications for who could sell a chair and who could get a chair covered by Medicare. This has stabilized the volume of claims but has left power wheelchairs out of reach for many people with disabilities.

Setting the wheels in motion

Advocates see two main courses of action to pursue: legislation and a class-action suit. Because Medicare is a federal program, these would both need to happen on the federal level. This is a daunting task.

A bipartisan bill called the Medicare Independent Living Act of 2006 (Senate 3677 and House of Representatives 5983) got lost in the shuffle last year, never making it past committee. Although one of the co-sponsors of the Senate bill, Sen. Jeff Bingaman, D-N.M., remains and considers this a priority piece of legislation, the Republican co-sponsor Rick Santorum, R-Pa., was not reelected last fall. But there is a plan to reintroduce the bill this year, as soon as new co-sponsors can be found.

In regards to the likelihood of the bill passing this year, well, it is sailing into the wind, Claypool says. It is competing with a number of Medicare priorities, and because the number of people who would be affected is unknown, putting a price tag on the legislation is next to impossible.

"Since the Democratic majority especially is trying to govern with fiscal restraint, they are reluctant to pass anything that doesn't have a price tag or specify where the money is coming from," he says.

The second option, a class-action suit, would need to be filed on the behalf of a plaintiff that was harmed by the Medicare policy. On the surface this seems like it would be the easy part, but advocates have not found it so.

There are plenty of people out there who have been confined within the walls of their home, who struggle unnecessarily to move, whose injuries have been aggravated by inadequate medical equipment. Why no plaintiff?

Lois Tucker offers one possibility: "People with disabilities are often just trying to survive. They hear 'lawsuit,' and they get scared."

"Often I find myself just trying to meet immediate needs, find an immediate solution to the person's problem," Tucker adds. "What we need is a long-term effort."

Judi Rogers has had similar experiences when working on the possibility of a class-action lawsuit. But she has hope that in four years, when she turns 65 and is covered by Medicare, she may be able to be that missing plaintiff. Her power wheelchair would then be almost 15 years old, and under current policy, Medicare would not replace it.

Jenny Lieberman predicts that as the baby boomers enter their senior years, the "in the home" policy will become much more noticeable. "It's not too widespread right now, because the upcoming older population hasn't started to feel the effects. But in five years it will be horrible."

She hopes they don't have to wait that long for people to take notice.

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