Congress needs to change the antiquated policy that leaves many trapped in their homes.
By Alaine Perry
Phyllis Johnson (not her real name), who is 77 years old and has multiple medical problems including heart disease and chronic leg pain, cares for her granddaughter every day while her daughter, a United Spinal employee, goes to work. Phyllis can walk well enough to get around inside her house, but she tires rapidly when she tries to walk any distance. She really needs a wheelchair to get around outside-a power wheelchair, because she is not strong enough to push a manual wheelchair herself.
Unfortunately, Medicare will not pay for the wheelchair Phyllis needs. Currently Medicare will pay for a wheelchair only if you need it for use in your home. If you can function at home with a manual wheelchair but need a power wheelchair to go to work, the doctor’s office, or the local grocery store, Medicare will pay only for a manual wheelchair.
Not having the right wheelchair became a particularly big problem last year when Phyllis’s granddaughter started kindergarten. The nearest school bus stop was three blocks away; Phyllis couldn’t walk that far without difficulty, and her granddaughter was much too young to go by herself. Luckily, the school district agreed to drop the granddaughter off just one block from the house. But for many, the problems associated with not having the right wheelchair are not solved so easily.
Medicare’s “In the Home” Rule
Medicare’s policy of paying for a wheelchair only if it is needed for use in the home is generally referred to as the “in the home” rule. This restriction runs counter to numerous government initiatives such as the New Freedom Initiative, the Ticket to Work and Work Incentives Improvement Act, and the Americans with Disabilities Act, all of which aim to improve community access for people with disabilities and enable them to participate more fully in employment and other activities.
The “in the home” rule seems so restrictive and illogical that many people find it hard to understand why it has not already been eliminated. There are several reasons. First, for the last few years, disability advocates have been trying to convince the Centers for Medicare and Medicaid Services (CMS)-the federal agency that runs the Medicare program-to eliminate the “in the home” rule through regulatory changes. Last year, as a result of a coordinated national advocacy effort, more than 80 members of Congress sent a letter to Secretary of Health and Human Services Michael Leavitt asking him to eliminate this rule. However, Secretary Leavitt responded that CMS did not have the authority to eliminate the restriction through regulation. According to CMS, a legislative change would be needed.
After receiving a clear “no” from CMS, United Spinal and other disability organizations shifted their focus to developing and passing legislation to eliminate the “in the home” restriction. So far, Senator Rick Santorum (R-PA) and Senator Jeff Bingaman (D-NM) have both expressed interest in introducing legislation on this issue. Both are members of the powerful Senate Finance Committee, which has jurisdiction over the Medicare program.
Challenges of Legislation
Policy makers seem to understand that the “in the home” restriction is unfair and should be changed. There are some practical obstacles, however, to be overcome. The first is concern about the state of Medicare’s finances, which leads to a reluctance to make any policy changes that would increase Medicare spending, no matter how worthy. The second is concern about fraud and abuse. In 2004, there were several reports to Congress about the rapid increase in spending on power wheelchairs and the evidence that some wheelchair suppliers have defrauded the system, charging Medicare for wheelchairs that were not actually provided. As a result, CMS made a number of changes to the program to tighten oversight and make this type of fraud much less likely. Unfortunately, the unethical behavior of a few providers has left a tarnish on this issue, making some lawmakers wary that liberalizing policies for wheelchair coverage could open the door to more fraud and abuse.
But there are also reasons to be optimistic. Members of Congress-both Republicans and Democrats-have shown a strong interest in recent years in reducing barriers to employment for people with disabilities and taking other measures to increase their ability to fully participate in American society. Eliminating the “in the home” rule would be a logical extension of those efforts.
The Road Ahead
To overcome the challenges of passing legislation on this issue, United Spinal and our coalition partners are focusing on two major strategies:
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• Sending a clear message to legislators. They need to hear that their constituents want and need this change. Many people do not realize just how much policy makers are influenced by letters, e-mails, and phone calls from their constituents back home, but it really does make a difference. We are putting together a Right Wheelchair Campaign e-mail list for United Spinal members and others who care about this issue. List members will receive action alerts when e-mails and calls to members of Congress are needed and get up-to-date news about the progress of this legislation.
• Personalizing the issue. Personal stories from people affected by this rule are one of the most powerful tools we have to persuade lawmakers that it needs to be eliminated. We will also be working to get articles and feature stories about this issue in newspapers and magazines throughout the country, and writers of these articles will need people to interview. So if you have had trouble getting Medicare to cover the wheelchair or scooter you need, and are willing to either share your story with us, talk with reporters, or meet personally with Congressional staff, we need to hear from you! Your name will be kept confidential if requested.
With your help, we have a good chance of eliminating this unfair restriction, and taking one more step toward full inclusion of people with disabilities in all areas of life.
To sign up for our Right Wheelchair Campaign e-mail list, send an e-mail with the subject heading “Right Wheelchair Campaign” to danderson@unitedspinal.org. In the body of your e-mail, include your name, full address or zip + four (so that we can identify your Congressional district), and your e-mail address.
If you have a story to share, contact Dan Anderson at 800-404-2898, ext. 294, or danderson@unitedspinal.org.
Alaine Perry is director of Public Policy.
