National Disability Advocates Hold Briefing on Policy that Makes People with Disabilities Prisoners in Their Own Homes

Spending over 14 months attempting to replace an unreliable wheelchair that no longer fit his needs, Kansas resident Jason Gallagher, a 24-year-old Medicare beneficiary with muscular dystrophy, was able to continue using his chair only through the help of his durable medical equipment (DME) supplier, who replaced tires and performed necessary repairs to the wheelchair free of charge. But Gallagher quickly found that his newfound independence had a steep price when he learned that Medicare’s “in-thehome” policy, which restricts Medicare coverage to power wheelchairs and scooters that are considered medically necessary only for use inside the beneficiary’s home, meant that Gallagher might no longer be eligible for Medicare coverage of his own wheelchair.

The problem with the in-the-home policy, according to Rightwheelchair.org, a Web site hosted by United Spinal Association to raise awareness about this issue, is that “Medicare policy dictates that people with disabilities who depend on Medicare be prisoners in their own homes, rather than active participants in their communities. If you are ‘bed or chair confined’ and need a wheelchair for use only ‘in your home’ between your bedroom, bathroom or kitchen, Medicare may buy you a wheelchair or scooter. But if you want to go to your pharmacy, grocery store, bank, place of worship, or your physician’s office, or travel to work or school, you’re on your own. Under current Medicare policy, living a full life out in the world is only for those who can afford to buy their own wheelchair or scooter.”

At a February 15 Congressional briefing in Washington, DC, hosted by Congressman James Langevin (D-RI) and the Independence Through Enhancement of Medicare and Medicaid (ITEM) Coalition, Gallagher and United Spinal Association, along with other disability advocates, spoke out against the negative impact of the in the home policy. The briefing was held during the National Coalition for Assistive and Rehab Technology (NCART) Fair and Congressional Fly-In in Washington, DC, on February 14 and 15.

The coalition in action included (left to right): Michael L. Boninger, M.D., Center for Assistive Technology, University of Pittsburgh; Jason Gallagher, a 24-year-old Medicare beneficiary with muscular dystrophy; Lee Page, associate advocacy director of the Paralyzed Veterans of America; Dean Kamen, founder and president of DEKA Research and Development Corporation; Peter W. Thomas, ITEM Coalition and CCD Health Task Force; Paul Tobin, deputy executive director of United Spinal Association; and Amy Judge, legislative assistant to Congressman James Langevin.

“We wanted to foster a forum for education and discussion with Congress about the impacts of the in-the-home restriction not only on Medicare beneficiaries, but on clinicians, doctors and researchers,” said Kim Ruff-Wilbert, a policy analyst who works on Medicare issues. “Until CMS or Congress addresses this restriction, beneficiaries who need a wheelchair to function outside of their home will continue to be denied access to the appropriate and necessary power wheelchairs or scooters to achieve full community integration and to live independently.”

The Center for Medicare and Medicaid Services (CMS) is the federal agency that decides which health care costs Medicare will cover and sets the reimbursement rates, rules, and coverage criteria under Medicare for wheelchairs and scooters. Simply put, it is a federal bureaucracy that makes the decision on which people with mobility impairments need a wheelchair or scooter and where they can use it. CMS currently dictates that wheelchairs and scooters are for use only inside of your home. This is where the term “in-the-home” restriction comes from.

“I became a Medicare beneficiary in the beginning of 2004 when my private insurance through my parents expired and I was still in need of a new wheelchair,” said Gallagher. An active member of his community who takes classes at Rockhurst University, Gallagher enjoys shopping and being with his friends and does disability advocacy work. “After months of processing, Medicare informed me that they would not pay for the wheelchair I needed. At one point they told me they agreed that a heavy-duty wheelchair with strong suspension and a powerful motor did fit my needs, but that did not guarantee payment. Medicare’s reasoning was the in-the-home policy.”

During the two-day event, United Spinal met with 10 representatives from different Congressional offices to bring to their attention Medicare’s in-the-home restrictions on mobility devices. Among those who showed their immediate support was Heather R. Mizeur, director of domestic policy for Senator John Kerry. She arranged to add the Senator’s name to the Congressional Sign-On letter, which will be sent to the CMS requesting that the in-thehome policy not act as a barrier to the community for Medicare beneficiaries with disabilities and mobility impairments.

“It is astonishing to see the reactions on people’s faces when they hear and understand the implications of the in-thehome policy,” said Paul J. Tobin, deputy executive director for United Spinal Association. “The absurdity of this policy, in light of other programs designed to foster independence for people with disabilities like the Ticket to Work program and Americans with Disabilities Act, leaves people incredulous. Why should someone who can benefit from the right wheelchair be denied because of a rule that’s hypocritical, financially irresponsible, medically unethical, morally reprehensible and discriminatory?”

Gallagher, who has been able to get Medicare to cover a small percentage of his power wheelchair-the bulk of the cost is covered by the Muscular Dystrophy Association and his vocational rehab- continues to work toward better policy. He has been accepted into the summer internship program on Capitol Hill sponsored by the American Association of People with Disabilities (AAPD), Mitsubishi Electric America Foundation (MEAF), and Independence Technology, a Johnson & Johnson company.

“Working with Jason is wonderful. His story perfectly illustrates how the in-the-home restriction impacts real Americans,” said Ruff-Wilbert. “This outdated and archaic rule prevented Jason from obtaining the appropriate technology he needed to live his life, and he wants to make sure this rule is eliminated.”

Other speakers at the meeting included representatives of the Center for Assistive Technology, DEKA Research and Development Corporation, the Paralyzed Veterans of America, and CMS.

To help change this policy, United Spinal and the ITEM Coalition are asking for stories, good or bad, about how Medicare or Medicaid policies affect the type of wheelchair you buy or how you use it. Please visit www.rightwheelchair.org to submit your story.

Rightwheelchair.org is a joint project of United Spinal Association, ITEM Coalition and the Clinicians Task Force. The Web site is dedicated to removing Medicare’s restrictive in-the-home interpretation that limits beneficiary access to needed wheelchairs and scooters.

Jennifer M. Rodriguez is assistant public affairs officer at United Spinal.