Bob’s Wheelchair Blog

Standing (or, at least sitting) up for your rights

Last year, while I was taking part in a panel discussion about disability, one of my fellow panelists caught me off guard by definitively stating that all of the panelists, myself included, "loved our wheelchairs more than anything else". My jaw dropped as I turned to look at her with a look that I can only imagine everyone in the audience saw as somewhere between sheer disbelief and total confusion. Love my wheelchair? Are you kidding, I remember thinking. I politely explained that "love" might be too strong a word for my emotional relationship with my chair. My statement (and the puzzeled look on my face) got a laugh from the crowd, but as they were laughing I began to understand what my co-panelist was getting at. I think that what she meant is that we loved the independence that our wheelchairs provided. Without them we likely wouldn't have been able to even be at the panel, much less to work or enjoy our lives. We weren't talking about chairs in the simple sense of four-wheeled rolling devices, but highly specialized, complex contraptions that had been custom designed and then custom fitted by experts to our unique bodies to provide the most independence that was medically possible. You'll never hear me profess my love for the nuts and bolts I ride around in every day but you'll also never catch me taking it for granted.

I bring this up because as I write, the independence that wheelchair users like myself and others who depend on complex rehabilitation technology enjoy is in jeopardy. I could devote five or six posts to the full nature of the threat, but boiled down to its simplest it is as follows: access to complex rehabilitation technology like power wheelchairs and specialized manual wheelchairs is decreasing. Because of the high cost associated with providing and supporting complex rehab technology and the low rates at which providers are reimbursed by Medicare, fewer and fewer companies are providing the specialized services people who depend on such products need. Fewer providers means less access and less competition which in turn lead to lower quality service. If you live in a rural area, chances are you've already been directly impacted. Maybe the company that used to service your chair went out of business because the margins were too low. Maybe that company stayed in business but had to let go of the tech who trekked out to work with you. Either way, the new reality facing many consumers is longer waits for what is often poorer quality service. Some of the access decline can surely be attributed to the economy. By now everyone is familiar with the devastation it is capable of and the sometimes helpless feeling experienced by those in its wake.

The bright side of the decline in access to complex rehab technology (CRT) is that there is something that we, the people who depend on complex rehab technology, can do right now to help ensure that our independence isn't threatened. This February a coalition of rehab organizations and consumers (wheelchair and CRT-users) are headed to Washington, DC to get Congress to pass legislation that would create a special category under Medicare for complex rehab technology. The legislation would go a long ways towards establishing a funding model that would allow rehab companies to maintain access for those who depend on the types of complex technology that require knowledgeable service people and technicians to properly adjust and maintain. The way things are set up now, when it comes to billing and reimbursing, the more labor-intensive complex rehab technology is lumped in with products like walkers and simple chairs that require little to no configuring or expertise. This means that providers often lose money servicing CRT equipment, thus their hesitance to sometimes fully embrace the field.The people who use CRT don't just use it, they depend on it. These aren't people who you occasionally see on the news defrauding Medicare with fake disabilities. These are people, like me, who would be stuck in bed, not working or paying taxes if they didn't have their complex rehab technology.

To ensure that this doesn't happen the DC-bound coalition will be meeting with legislators and working to educate them about how important our independence is and how a simple piece of legislation could have a huge impact for so many people. Last year I had the privilege of traveling to DC and meeting with numerous representatives to spread that message. This year, many more consumer advocates will. If you're interested in participating, check out http://nrrts.org for more info. If, like me, you won't be able to go but would like to contribute, take a few minutes to read about the legislation at http://ncart.us and then consider writing, calling or trying to meet with your legislators.

I'm pretty confident that anyone who reads all the information will quickly see that this isn't a Democratic - Republican issue or a liberal - conservative issue. Honestly, it's a logical fix for an obvious problem that will cost millions of people their livelihood if it is not rectified. If you're like me, you may never love your wheelchair, but it looks pretty darn good in comparison with the prospect of not having it. Let's make sure that never happens.

Here's a video that does a good job outlining the issues (even if the opening is a little sappy): Jenny Takes on Capital Hill.

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