Erin Kelly, a writer with Cerebral Palsy, talks about the way money impacts her personal freedom.
I was in elementary school the first time I heard, “Kid, if you can learn to balance a checkbook, you can learn to do anything!”
I didn’t know much about money beyond that—or how wise those words would become. All I knew at that point was that money came in the form of paper and coins, and didn’t grew on trees.
As I grew to understand the fact I had Cerebral Palsy, however, my sense of “the green stuff”—and how it would impact my life as well as my needs—started to become clear. When I originally heard the word “disability,” I immediately thought of a hefty price tag.
I found that anyone with a disability, especially those considered lifelong, should first apply for Social Security benefits and state insurance to assist with or to even cover the costs for certain adaptations or equipment that may be needed. My family tried to apply for these benefits twice before receiving approval on the third attempt. In the beginning, things weren’t that costly, my needs were minimal, as I received a new wheelchair every five years according to Pennsylvania law. Granted, I wasn’t old enough to grasp the concept of all this when my parents applied for those benefits, but again, it was a matter of learning.
As I got older and my needs increased, so did the cost. We had a ramp built that runs the length of our back porch in order for me to access the second floor of our house. That was about thirteen years ago, and we were fortunate enough to have a local nonprofit club donate it to us and my Dad and older brother helped them build it.
Ironically, it no longer meets state regulations and is in need of repair —at which point, my caseworker from United Cerebral Palsy suggested we get a bid on a wheelchair lift with a roof over it. We are awaiting approval now.
You often have to prioritize your needs before looking into any equipment. In fact, we went through quite an ordeal when we first started looking for a van years ago—which was the focus of an installment of my monthly column in The Altoona Mirror last summer, as well as an article for The Good Men Project that ran back in May.
To truly grasp the concept of money in the realm of disabilities, I think it’s important to be savvy. And it helps to be comfortable with your disability and your own personal needs.
It’s really a matter of trial and error. This is an aspect of money—and quite frankly, the economy—that the majority of people don’t think about. It’s a part of the bigger picture and every person with a disability has the right and responsibility to make it fit it into their lives.
I think it’s also important to remember that companies that serve the disabled community are inclusive and aren’t necessarily in the business of competition. That’s a big reason why there isn’t a demand for them—and as a result, it’s not conducive to compare companies like The Mobility Resource, Bruno, SureHands, and Total Mobility solely based on one aspect of their company or the products or services they provide.
There’s also an issue of liability because the people who install these products in consumers’ homes are often putting their lives in their hands.
In writing this article my eyes opened. You’re not only paying for quality, but independence and ease in everyday living.
–Photo: Peter Gorges/Flickr