People With ALS Need More Support From Medicare and Other Programs

CMS considers whether to cover power seat elevation systems for Medicare beneficiaries

Kristin Neva avatar

by Kristin Neva |

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Power wheelchairs are expensive, and while Medicare covers the base cost, many beneficial features are an additional out-of-pocket expense for those already facing the high cost of living with ALS in the United States. Nine years ago, we began the process of ordering a power wheelchair for my husband, Todd.

A year before that, ALS had already taken Todd’s ability to walk steadily. We first borrowed a manual wheelchair from a loan closet, because Medicare only pays for one wheelchair every five years. After Todd got to the point where he could not safely walk on his own, his physician ordered an evaluation by an occupational therapist (OT).

However, our durable medical equipment (DME) provider refused to provide the chair, suspecting that Medicare would deny their claim because the OT had noted that Todd could still transfer independently.

That was frustrating. Todd was able to take a few steps on his own, but he had fallen multiple times and even smacked and bloodied his face once. The OT resubmitted the documentation, noting that Todd could not safely transfer on his own. With much persuasion, the DME provider finally agreed to provide the chair, although our next surprise was that some basic features were not covered at all by Medicare.

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We had to pay an additional $1,600 for the seat elevation function that allowed Todd to transfer with my assistance. By the time he got the power chair, he couldn’t transfer on his own at all, and I didn’t have the strength to pull him out of a low chair by myself. When we were out somewhere with the manual chair, I had to recruit strangers to help me transfer him back into our passenger van.

Medicare wouldn’t cover the attendant controller, either, even though it was difficult for Todd to navigate bumpy or uneven surfaces with weak arms. The OT at our ALS clinic suggested I could learn to use the joystick at the end of Todd’s arm rest while I walked beside him. I tried that, but the machine weighs over 600 pounds with Todd in it, and I thought I’d likely drive the chair over my foot. We eventually paid $1,000 out of pocket for another joystick behind the backrest.

With all the noncritical things our country spends money on, I’m disheartened that we don’t provide adequate care for people who are paralyzed. Families with ALS need an accessible bathroom, an accessible vehicle, caregiving help, and medical equipment. Medicare doesn’t help with the first two at all, and it’s very difficult to get significant caregiving hours. There are big gaps in what equipment is needed to manage life with ALS and what Medicare considers medically necessary.

But right now, the Centers for Medicare & Medicaid Services (CMS) is considering taking a baby step in the right direction. CMS is currently accepting public comments through Wednesday, Sept. 14 about whether to cover power seat elevation systems for Medicare beneficiaries.

Todd has already submitted the following comment:

“I urge CMS to cover the seat elevation function of power wheelchairs. Medicare covered the base cost of my power wheelchair after I lost my ability to walk and transfer safely due to ALS. However, I had to pay for the elevate function out of pocket. My wife did not have the strength to pull me out of the power chair with the seat low. The elevate function gave me the ability to transfer to my bed and toilet without the added expense of a floor lift. It allowed me to travel for two days away from my rural home to an ALS clinic without a floor lift.

“The elevate function gave me more independence, allowing me to adapt to the world, rather than trying to adapt everything to me. I could elevate to reach buttons on an ATM machine. I could sit at bar-height tables at restaurants and drink with ordinary straws. When I’m hungry and looking for something to eat, I elevate to see what is in the refrigerator and pantry. I elevate to see an egg frying in a pan as I coach my son to make me breakfast. Three times each day, I elevate to sit at a counter-height table to eat and drink. A standard table is too low to pull up under, and a kitchen counter is too high unless I elevate. I elevate at my desk so my monitor is at eye-level.

“Please expand the criteria for the medical necessity of the power wheelchair elevate function.”

I’d like to encourage you to share your experience with Medicare and advocate for the medical necessity of the elevate function, too!

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


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