Saturday, December 5, 2009

Bearing Witness

The Huffington Post has a series with stories about how the recession is affecting people, entitled Bearing Witness (and Bearing Witness 2.0).

One of the stories is about a youngster with a disability whose car lift has broken. The old lift would cost $1000 to fix, but insurors denied a claim to get him equipment he needs for $1600. This 7th grader's father lost his job three months ago, so his mother has to "put {him} into the car seat, and that turns into a stroller" and she says"he feels like a little baby when we go places."

This story doesn't surprise me. I hear from families with children with disabilities and my nephew also has a disability that requires equipment. Claims are denied and families scramble to keep the child involved in the community, using whatever they can afford. As a child grows into adolescence, he/she may find himself/herself in the same situation as the Orlando youngster- using equipment designed for babies and toddlers even when it's not medically necessary. (There's an important distinction there- I'm not blaming parents for using suitable equipment for safety or medical reasons. ) It can happen to adults too.

This is about insurance denials and the failure of our system to make equipment readily available to children or people with disabilities at affordable prices. What gets lost in the shuffle is this: these children (and adults), because they are being denied access to medical equipment that would maximize their independence, lose a great deal. They can lose self esteem as well as opportunities to do things independently, ranging from a job to getting an education to attending social events with peers.

Placing a monetary value on any of that is difficult. We need to have more of a dialogue about why this equipment has a priceless value, why a six hundred dollar difference denied means a 7th grader has to pushed around in a stroller-like device when it's not necessary.

If it was your child - or your nephew - you'd care. I do. And I can tell you this- you'd cry over it too. Because I have.


Anonymous said...

I had to fight like hell to get my crutches. It took over a month of going back and forth between my insurance and the DME provider to get things straightened out.

The denial of necessary medical equipment is an enormous burden on PWDs. I imagine that the cost of lost productivity because we A) can't do things without the equipment and B) spend so much time fighting for our equipment probably adds up to a higher cost than the equipment itself.

...but then, that would be valuing the contributions of PWDs, which our country is lamentably bad at doing.


Wheelie Catholic said...

Well said.

You might want to check out getting a scholarship to CELA (application at this page)to travel to Wash DC and tell your story: