It is frustrating having to deal with a broken wheelchair — and much of that frustration comes from trying to find someone to fix it both quickly and correctly.

That frustration boiled over last week when an article published on Pushliving.com by Gina Schuh, “Voices of the Community: My Wheelchair is My Legs, When it Breaks it IS an Emergency!” went viral. In less than a week, her blog post has racked up thousands of shares and likes across social media with its frank take on the all-too-familiar hassle many wheelchair users face.

Here is a very short excerpt:

“Most people think about the mobility side of having a broken wheelchair, but it comes with an emotional side. When you can’t get out of your house because of your wheelchair, you feel as though you live on a deserted island, isolated and alone. It’s terrible that people are forced to wait months for replacement parts and repairs. THERE IS NOTHING on my end that I am doing to delay time. Money? I’ve got it. Prescription and doctor’s letter of necessity? I’ve got it. Insurance? I’ve got it. I would be willing to drive to another state to get my wheelchair! Still, it is out of my control.”

And now with a recent update from Medicare that will require a doctor visit and order BEFORE a wheelchair repair can be completed, things may only get worse. United Spinal Association’s Advocacy Alliance is working to change this new Medicare policy to ensure users can get the right wheelchair and repairs when you need them. But we need your help.

To address this, United Spinal Association’s Advocacy Alliance created this short survey so you can share your experience with wheelchair repair. You can take that survey here.

Your experiences will also be used to convince Congress to support and vote for the Ensuring Access to Quality Complex Rehabilitation Technology Act of 2015. We believe this legislation will decrease some of the hoops we have to go through to get quality and timely repairs completed, since it requires that the company providing the DME to also provide repairs. Right now if a place sells DME, they’re not required to know how to fix it. Also, right now anybody can try to do a repair and sometimes the repairs aren’t done correctly.

You can find the description of the Complex Rehab Technology legislation and here is a link to connect you with your Elected Officials.

Your story is essential to creating change. Join the ADVOCACY ALLIANCE or e-mail me at jwolff@unitedspinal.org.

“You don’t have to stand up to STAND OUT!”