Medicare Policy and Wheelchair Seat Elevators
Medicare is re-evaluating its policy of denying coverage for seat elevating systems for power wheelchairs, and is seeking public comments. If you live in the United States and have an interest in IBM, your input is needed! The comment period is only open through Wednesday, 9/14/2022, so act now.
If you have inclusion body myositis, you may need a power wheelchair in the future. If so, you will undoubtedly want the wheelchair to have a seat elevator, which will allow your seat to go up and down within a 10-12 inch range. Most people with IBM need the seat elevator because they cannot stand up out of the chair if the seat is in the normal low position. The seat elevator also has many other uses, including helping when reaching for high objects.
The typical situation is that Medicare will cover the basic cost of the wheelchair, but the user will have to pay for the seat elevator capability. This can cost up to a few thousand dollars. Seat elevators are also not covered by many private insurance policies, they copy Medicare guidelines, so this can affect everyone. Many people with IBM suffer financial hardship because they struggle to purchase this essential wheelchair feature. Let’s work together to fix this!
Who Can Comment
Anyone can post a comment. You do not need to have IBM, be disabled, or currently use a wheelchair. Caregivers and family members can provide input. Physicians and physical therapists are especially encouraged to write. Contact the professionals who help you, and ask if they will contribute their insights.
What You Should Say in Your Comments
For your comment to be effective, it must address the factors that are important to Medicare. When deciding whether a person is entitled to a wheelchair as a Medicare benefit, the person’s mobility needs outside the home are not considered — only the needs inside the home are relevant. Specifically, Medicare wants to know if the wheelchair will improve the person’s health and increase participation in Mobility-Related Activities of Daily Living (MRADLs), “such as toileting, feeding, dressing, grooming, and bathing in customary locations within the home.” For Medicare to change its policy and provide coverage for wheelchair seat elevators, Medicare needs evidence that seat elevators will improve access to these activities.
Your comment might discuss topics such as how a seat elevating system helps transfers to a bed or toilet, cooking on a stove, reaching faucets, using the bathroom mirror for grooming, or similar activities. If you think a seat elevator positively affects your health, by reducing falls, promoting bone health, or anything else, say so. Use your own words; it does not help if everyone says the same thing. Give specific concrete examples so that the reviewers understand exactly why seat elevators are essential for people with IBM.
Medicare has specifically asked for information about research studies related to how a seat elevator may help transfers to and from a wheelchair. Relevant published studies are rare, so it might be particularly helpful to discuss your personal experiences with wheelchair transfers.
Your comment will be public, and it will be posted online with your name. Personal Health Information [PHI] is not allowed. If you write, “I have inclusion body myositis” it will show up as something like, “I have [PHI Redacted]. If you write, “My husband has inclusion body myositis,” is might show up as, “My [PHI Redacted] has inclusion body myositis.” You will be asked to check a box verifying that you have read the PHI Posting Policy before you can successfully register.
If you have IBM, you can deal with the PHI restriction in one of two ways. First, if you want the diagnosis of IBM to be included in your comment, you can talk about IBM and discuss your knowledge of IBM experiences without specifically saying that you, yourself, have IBM. Second, you can write about your condition and experiences without mentioning the name of the disease.
You might want to read some of the public comments that have already been posted, so you can see how Personal Health Information is redacted, and to give you some ideas. But, remember, write about your own experiences and observations, using your own words.
This is a rare opportunity. The simple act of writing a comment may help improve the lives of many people living with IBM and other medical conditions.
Kevin Dooley, MD
September 8, 2022