MDA No Longer Pays for Wheelchair Repair?!?

My motorized headrest on my wheelchair, which has been going through a slow death, finally kicked the bucket three days ago.

Usually, when things like this happen, I have a few resources that helps pay for wheelchair repair. One of these resources has always been the Muscular Dystrophy Association.

MDA has been a huge part of my family’s life, ever since I was first diagnosed when I was two. They pay for my first manual wheelchair when I was five years old, and then my first 2 power chairs starting when I was 10 years old.

Paying for wheelchairs has been the cornerstone of MDA from the beginning. Every year on the telethon, they would roll out manual wheelchairs and talked to Jerry Lewis about how much they cost, and how proud they were to be able to give these chairs to “Jerry’s kids”.

Since my early 20s (early 1990s) MDA has not paid for any of my last four wheelchairs, but they have always helped pay for repairs.

For as long as I can remember, MDA would allow $500 per year for their clients wheelchair repairs. For me, this usually went toward tires and batteries, which have to be replaced every couple of years.

So I called MDA yesterday, and proceeded to tell them about my headrest, and that it would cost about $200 to get a new actuator. To my absolute shock and disappointment, I was told that MDA no longer pays for wheelchair repair. Not even the $500 per year that used to be available for each client.

MDA was founded in 1950 by a group of concerned parents of children with muscular dystrophy. Originally known as the Muscular Dystrophy Associations of America, it was renamed to its present title, Muscular Dystrophy Association, in the 1970s.

In 1966, Jerry Lewis began The MDA Labor Day telethon. By broadcasting for 21 1/2 hours every Labor Day weekend, it would raise $2.45 billion for MDA during its 43 year run with Jerry Lewis.

In 2010, with much controversy, Jerry Lewis was asked to step down. With his departure, the telethon would go through changes every year, with its last broadcast in 2014 eventually becoming a mere two-hour primetime event on ABC.

In their press release regarding the end of the telethon in 2014, MDA had stated that it was costing more money to produce the telethon than what they were receiving in donations. They were very positive that through social media and the modern, fast-paced world of the Internet, that they would continue to be able to help their clients.

I know MDA still pays for children’s summer camp, and they offer free diagnosis and support for parents, all of which are very important. It was certainly a blessing for me and my family when I was younger. However, now at 45 years old, I have to ask, just what does the MDA do for me nowadays?

I know that a lot of money still goes to research, and a lot of progress has been made, but for those of us who have survived this long, researching a cure is not for us. It’s for the next generation. My generation needs other kinds of help. Like assistive technology, caregiver support, and living accommodations. Not to mention the aforementioned wheelchair repair.

If MDA wishes to recover from low donations, and return to the glory days of mega fund-raising, I think they need to prioritize what’s important. Maybe they should start by reducing their CEOs salary.

Outgoing CEO Steve Dirks was reported to be making $550,000 salary from MDA. Was he worth that much money? Maybe. But I for one think it’s ridiculous when they can’t even help purchase a $200 part for my wheelchair.