At onset of disability, if you want the best wheelchair that money can buy, make sure that you get run over by a bus.
As ridiculous as that advice sounds, it’s seemingly true. What my extreme example eludes to is that not only does the type of health insurance one has determine the quality of the wheelchair one receives, but so does how one incurs disability in the first place.
As discussed by Dr. Fabrisia Ambrosio of the University of Pittsburgh in a recent article, those who experience disability due to sudden trauma, such as spinal cord injury, receive higher-end wheelchairs from the start than those with non-traumatic injury disabilities, including multiple sclerosis or muscular dystrophy, to name a few. And, in my professional experience, this assertion absolutely proves true, with ramifications not only toward one’s initial wheelchair, but also potentially affecting every subsequent wheelchair one ever receives throughout life.
The fact is, a traumatic injury is a hot-rush, non-stop ticket to the heart of our healthcare system. A spinal cord injury, for example, dictates a linear path from a trauma unit through advanced rehab, where, along the way, most patients go through state-of-the-art rehabilitation programs like those of Kessler, Shepherd, Craig, and Casa Colina rehab centers. And, it’s during rehabilitation that the best-of-the-best clinicians fit patients with cream-of-the-crop wheelchair technology, with newly-injured individuals leaving in among the most advanced manual and power wheelchairs.
However, those with progressive disabilities, such as multiple sclerosis, are far less likely to go through such an intensive rehabilitation program, never receiving such focused, all-encompassed healthcare, such as that geared toward traumatic injury. As a result, wheelchairs for those with progressive disabilities are fitted and prescribe on a more throttled scale, by local therapists and providers who may not have the cumulative resources and experience of advanced rehab centers. Further, toward progressive disabilities, therapists and providers, as required by most insurers, often only assess one’s needs in the immediate, prescribing and funding wheelchairs that aren’t of the most advanced technology, even though one’s condition may become more involved, where in several months or years, a much higher-end wheelchair may be needed.
In this way, during the fitting and funding of first wheelchairs, traumatic injury patients typically have access to higher-end mobility technology over those with progressive disabilities. However, such inequities don’t stop at the issuance of one’s first wheelchair.
Many insurers use the level of one’s current wheelchair as historic precedent for one’s next wheelchair, meaning that what you have is what you get, unless there’s a dramatic change in condition that warrants higher-end technology. The consequence is that if one is initially issued a lower-end wheelchair, one is likely to receive the same type of wheelchair at the time of replacement if there’s no change in condition, keeping one in a funding cycle of low-end mobility products.
Surely, hindsight is 20/20, and there’s nothing that any of us, as wheelchair users, can do to change our own first wheelchairs. However, as members of the disabled community, it’s vital that we look to help others new to disability. If you encounter someone about to get fitted for his or her first wheelchair, take a few minutes to point him or her in the right directions, toward consumer sites on the web, toward an outpatient seating clinic at a rehab center, toward the knowledge that everyone should ideally have when selecting a first wheelchair. In fact, your timely advice could affect the quality of wheelchair that he or she receives for decades to come.
PowerchairDiaries 
This is so true. As a person with CP in her 20’s, my first chair at the age of 5 was an EJ tank. Not unexpected. However, I experienced the phenomenon you describe as a teenager and adult moving into different chairs. Next came a Quickie 2 then a Quickie GPV (at the time when Ti chairs were becoming popular). I remember the seating guy saying to me, “Well, it looks like Quickie’s servied you well! Let’s get you another.” No discussion about new technology, materials, nothing. It wasn’t until I bought a TiLite ZRA out of pocket that the precident for high-end mobility for me was set. 2 years later my insurance company bought me an even better ZRA with Emotions and carbon fiber seating, when my w/c needs changed drastically due to chronic back pain and tendonitis. This happened because another seating specialist knew that there was no way in hell that I’d go back to a crappy chair*.
All this being said, I make it my business to talk to other people that I meet sitting in crappy chairs (or at least ones that look that way to my eye). In the airport, at the market, at conference, at the mall— doesn’t matter where, I chat them all up. Most of the time I don’t even have to approach them; they come up to me asking “I’ve never seen anything like that! Where’d you get that great chair?”
*Not saying that Quickies are crappy chairs for everyone, they’re just crappy for me.
Not just in the provision of wheels, but in all provision, does the way one acquires the impairment, define the level of provision to offset the disabling affects of the impairment.
Here anyway. In my limited experience.
I’ll reiterate what Nicki says above. I’ve lost track of the number of times I’ve had someone come up to me in a Quickie 2, Invacare Tracer, or some other similar heavy chair and ask me about my chair (usually I’m in my Z-frame Kuschall, but I also use my Quickie R-2 sometimes). The most common questions are “How much does it weigh?” and “Why didn’t they tell me about something like this when I was being evaluated?”
Often, I’m in the process of getting into or out of my car when I’m approached and the people are amazed at how easy it is to load and unload whichever chair I’m using at the time (I drive a Toyota Corolla sedan).
I also have an Invacare Tracer that was given to me so I could do yard work without getting my two good chairs funky. It’s adequate for that, but just. It’s so heavy and cumbersome I wouldn’t have anywhere near the independence I have using an ultralight. I hope I’ve made a lot of people aware that they don’t have to settle for some heavy, inadequate piece of junk just because it’s what someone prescribes.
I got injured at work 6/10/1991. I do like I want to. I work in am yard cut my grass . I work on my movers. I go hunting and fishing . I started digging a whole in my back yard .To put my shop in .It took me about two month . In good old Georgia red clay . But I did it.
I agree, I agree, I agree. But this goes beyond the chair but also the training one gets to use the chair. When I got my wheelchair, no one, including the dealer who sold me the chair could tell me how to actually stop the chair with smooth grip rims while going down a hill. I had to call the manufacturer and talk to a wheelchair user to find out things like “How do you get around Seattle in a manual wheelchair (Hills)”
I was told once I had a definative diagnosis (7 months in and counting) THEN I would be sent to a rehab centre.
I didn’t find this true when I got my last wheelchair (Feb. 07). I did my research, went in there knowing what I wanted (knowing what my insurance would cover) and got the chair I wanted!
I’m the proud owner of a Arrow Storm TDX 3!
As someone who grew up with CP, it’s a hierarchy of care and “perks” I’ve always noticed, but of course it’s wrong to say it that way. Thanks for outlining it so well.
As a therapist working in New Zealand, let me tell you that things are not so different here. Causation of disability relates directly to what is fundable through the system.
I have a friend in NZ who told me I should be really happy I wasn’t living there when I got TM. Apparently if you have a traumatic spinal cord injury you get a choice of rigid wheelchairs but if you have TM or MS or anything that is not considered traumatic you are stuck with a Quickie GPV.
It didn’t matter here in Canada. My first wheelchair was a Quickie GT because I am still a c6 complete quad. and in the end I’m still the same no matter how it happened.
I’ve heard people ‘s stories though and I really don’t understand how two people can end up with the exact same level of injury and pretty much the same function but one gets a great wheelchair when the other gets something that will not work for them just because of how it happened.