Our Advocacy Efforts Are Powered By You

| January 31, 2013

United Spinal recently distributed a survey on access to wheelchairs and medical equipment. We’re already receiving valuable feedback that will help us advocate in Washington, DC to change policies that affect your mobility and independence.

You can take the survey here.

Every submission is appreciated and provides real-world examples of how some public policies–which are supposed to help wheelchair users–aren’t doing such a good job at it.

Equipped with your feedback, United Spinal’s advocacy efforts on Capitol Hill are moving full steam ahead, and with greater focus.

Our goal is to bring your issues straight to legislators so that they can see and hear firsthand the devastating effects broken public policies have on wheelchair users. Check out our annual Roll on Capitol Hill event for more info on how we achieve this.

The human impact of broken policies can easily get lost in wonky language that legislators breeze through when bills are passed, like the story of Kim Madden, a New York resident who has a 9 year-old son who uses a wheelchair. Kim took our survey and was kind enough to share her situation with us.

Kim has been going through a great deal of frustration in keeping her son’s wheelchair maintained so that he can stay active and do the things that kids do.

“It’s completely impossible to get something repaired easily or inexpensively. We can drive over 90 minutes while taking our son out of school to the supplier, or we can go through a clinic where we have to have at least one if not more appointments with a doctor who we don’t have to see, to see the same repair people. The worst part about all of it to me is how outrageously expensive this equipment is, it’s like ‘disability’ is spelled ‘Di$ability,” says Madden.

Madden and her family have spent years trying to cut through the red tape to qualify for Medicaid.

“We couldn’t wait for it to come through before buying our son’s wheelchair but our insurance barely covers even his orthotics let alone his $5,000 wheelchair. Where are the attorney generals on this price gouging? We got a hand-me down bath shower chair, but a small part of the plastic tube that holds it up is broken. It costs $214 to get a new piece. I once lost a tiny metal anti-tip on his wheelchair (left it in a non-wheelchair accessible taxi trunk). The cost? $80. Why? Because they can get away with it that’s why,” adds Madden.

These situations are common for many families that are trying to adapt to disability. That’s why it’s critical we come together as a community to demand that wheelchair users, caregivers, and moms like Kim are included in the conversation when policies are created for us.

United Spinal will continue working on changing policies for the better and we hope you will continue to supply us with your views and opinions. They are so important to the work we do.

Here are a few ways join in our efforts. You can subscribe to our Advocacy Mailing List to stay up-to-date on policies that affect you and learn how to help fix them; participate in our free “Independence Through Advocacy” webinar series; or share your wheelchair stories and frustrations so that we may spread the word to others.

Thank you!

The United Spinal Advocacy Team

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