During a dinner at CELA in Washington D.C. the annual complex rehab technology consumer advocacy
effort for sustained mobility funding one of my fellow advocates at my table, who was from the Detroit
area, summed up our mission in a very unique way. Look, he said. If you had one shot or one opportunity
to seize everything you ever wanted in one moment, would you capture it? Or just let it slip?|
of course, was quoting song lyrics from Eminem; yet, the lyrics and point made were especially poignant
to our occasion: We, as the ultimate stakeholders, can't allow mobility funding to fall by the waste
side because once it's gone, it's gone. This is our one shot are we going to capture it, or just
let it slip?
With Group-2 power wheelchairs now a rental item, and funding for complex rehab technology
slashed over and over since 2006, we're at a critical juncture. If we're going to stop an erosion in
the funding of complex rehab technology that is, individualized power and manual wheelchairs for those
with severe disabilities we need them recognized as their own distinct funding class. For example,
both canes and prosthetic legs help those in need walk. However, while a cane is an off-the-shelf, simple
device, a prosthetic leg is a totally individualized, custom-made limb and Medicare, of course, has
prosthetics in their own funding category, certainly not lumped in with canes.
Yet, for all intents,
Medicare barely differentiates complex rehab technology from standard mobility products, so the needs
of those with the most severe disabilities are barely recognized, often requiring a funding battle to
get their needs met. Our goal, then, through CELA advocacy efforts and a forthcoming bill, is to create
complex rehab technology as its own product and funding class, ensuring access for those in need. You
might say that we're striving to ensure that one metaphorically doesn't get stuck with a cane when one
needs a prosthetic leg.
Every year that we attend CELA, it's truly bittersweet. On the one hand,
the fact that we've had to go year after year means that our needs haven't been met, that we're still
fighting to ensure mobility for all. However, every year attendance at CELA grows, as does our reach
and long-term impact. This year, attendees met with 222 congressional offices, where state delegations
of five or so members typically including an end user, clinician, provider, and manufacturer met
for 20 to 30 minutes with elected officials and staff.
I was very pleased that out of my own seven
meetings, I had invaluable face-to-face conversations with my senator and two congressmen from my region
(it's not uncommon to only meet with the legislative aide in charge of health care agendas for the representative,
so meeting with the actual elected official is always a huge plus). I found that my three elected officials
(two of whom are new, and the third I have a bit of a long-term relationship with), really understood
what we're going for. When we explain in simple terms that we're not looking to dramatically increase
Medicare funding of mobility products overall, but to create a distinct entitlement of complex rehab
technology for those with severe disabilities, so that they can pursue education, career, and community
and move from being on the system to being taxpayers it truly seems to resonate with them. It just
makes sense when we explain that our goal is to protect the mobility needs of those with severe disabilities
it's a totally rational message, especially when delivered directly by those of us with severe disabilities.
Put simply, we're in their offices, face-to-face, delivering the overall message of, I am the constituency
that this funding serves, this is the mobility technology that my life depends on, and here's how having
the technology not only benefits my life, but all taxpayers because with it I'm healthier, more active,
Indeed, I believe it's the personal level that's going to serve as the catalyst
to get the ultimate legislation passed. While a bill hasn't yet been introduced (it's in draft form),
once it's making the rounds, we need each representative to put a literal personal story with it during
his or her consideration. I know that when it comes across the desks of my senator and congressman, they're
going to think of me not based solely on our CELA visits, but because we're going to be running into
each other at dinners and charity events throughout the year, where I'll absolutely remind them each
and every time of the importance of the legislation. When they think complex rehab technology legislation,
I want them to immediately think of that articulate guy with severe cerebral palsy, whose story they
know me, that is.
And, you should do the same. Schedule an appointment to meet with your representatives
at their local district offices, and simply explain, There's legislation being introduced to make complex
rehab technology it's own benefit, and here's why it's important....
Again, we're at a point
where our one shot is coming, and as the ultimate stakeholders, we can't let it slip. Prime the pump
by bringing your elected officials up to speed now; be ready to spring into action once the legislation
is introduced; and, make sure that you're one of the literal faces behind the bill when it lands on your
I encourage you to read the complete CELA Complex Rehab Technology
Proposal (PDF file).
Published 3/2011, Copyright 2011, WheelchairJunkie.com