A hand stamps a red crossed-out circle over top of a document on a table.

Medicare Denials and Wonderful Nonprofits

I recently wrote about my first wheelchair seating clinic experience. Since I wrote that article I was denied by Medicare for the seat elevator.

Illogical Medicare denials

Medicare evidently has a policy in place to deny seat elevators. It sometimes baffles my mind how the government can have policies in place to approve certain things and automatically deny others.

The scooter that I currently use has a seat elevator. I’ve been using the same brand of scooter since 1995 and they have all had seat elevators. Anyone who deals with a disability like spinal muscular atrophy will understand the benefits that a seat elevator can provide. Due to SMA, I have limited reach due to the weakness in my arms. A seat elevator provides me some extra independence. I’m able to raise my seat and reach things on the counter and in the sink.

The disability tax

People with disabilities will often speak about the disability tax. This is the extra financial burden we endure due to our disability. This new wheelchair I’m getting has a price tag north of $30,000.  The price for the seat elevator is about $3600. Permobil reduced the out-of-pocket expense to me since Medicare denied the seat elevator. However, there was still a significant out-of-pocket expense for me.

Help from a nonprofit

Luckily there are some wonderful nonprofits that can help. I wish there was a database for disabled people to go to so that they could find a nonprofit that would suit them. But I digress. I was aware of a wonderful nonprofit called Laughing At My Nightmare. It’s run by Shane Burcaw and his cousin Sarah. Shane also has spinal muscular atrophy. He is a published author. He also co-stars with his wife Hannah in a YouTube channel called Squirmy and Grubs.

The application process was fairly straightforward. After filling out the application and submitting the requested documents I waited about 3 weeks to see if my seat elevator request would be funded. I was lucky that Laughing at My Nightmare provided the funds needed for my seat elevator. Within a few days they paid the Durable Medical Equipment Supplier directly.

Shane posted on his social media accounts that their nonprofit gave out over $54,000 in adaptive and medical equipment grants in February alone. I find it wonderful that nonprofit’s like Laughing at My Nightmare exist. They help reduce the disability tax that people with disabilities face on a regular basis.

Featured Forum

View all responses caret icon

Looking forward to independence

Now that everything is paid for and approved, Permobil has begun building my new wheelchair. It will be custom built to fit me. I am excited to get it because I know it will provide years of independence.

Living with a disability is not always easy. However, remember that you are not alone.  The internet provides numerous resources for us. There are also many groups on social media where you can connect with other people who have disabilities like spinal muscular atrophy.

Don’t be afraid to ask people in these groups for help. I have gained so much knowledge about grants and resources from other people who are going through similar challenges that I am. If you are looking for a wonderful nonprofit to donate to, please consider Laughing at My Nightmare. Shane and Sarah are doing wonderful work!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

Which type of SMA do your symptoms correlate most with?