Make no mistake, those of us with disabilities face a greater urgency today than ever in history
to self-advocate for access to life-sustaining mobility technology. Across the spectrum of complex rehab
technology, we've been on a slippery slope with funding cuts leaving us with little more than half of
what funding was for many in 2005 (with Group 4 power chairs, for example, now no longer funded). And,
we must be honest with ourselves, that as each funding cut has occurred, trickling down from Medicare
to virtually all insurers, we, as constituents with severe disabilities, have done little to advocate
for ourselves. As the only ones who can truly make a difference - and as the stakeholders - we've both
refrained from getting involved, as well as expected others to somehow resolve our community's issues
of ever-reduced access to mobility technology. And, this grim trend will continue unless we get involved
And, we must get involved now - to avoid further cuts in funding and services, to protect
our access to life-sustaining mobility technology. Yet, for a lot of consumers with disabilities, the
logical question is, how do I get involved and advocate effectively?
The Politics of Mobility
The Centers for Medicare and Medicaid Services (CMS), administers mobility funding, but
is ultimately governed by the Legislative Branch (the Senate and House of Representatives). Still, CMS
has a lot of day-to-day leeway to administer mobility funding policies as it wishes, without approval
by the Legislative Branch. For example, if CMS wishes to change funding codes, it can (and does) with
no governance by the Legislative Branch. Essentially, the Legislative Branch says to CMS, "You have the
authority to administer mobility funding as you wish, unless we pass a bill instructing you otherwise."
Where the Legislative Branch comes in is two-fold. Firstly, CMS has to follow the laws within the
Social Security Act. An example is that the "in-home-use-only" funding rule for power chairs isn't
just CMS policy, but law written in the Social Security Act. Therefore, the Legislative Branch must
pass a bill in order to change that policy and law - that is, CMS can't change it on its own.
the Legislative Branch can place political pressure on CMS, trying to direct CMS' actions without going
through legislation. As July 1, 2013, approached, for example, representatives of the Legislative Branch
co-signed a letter asking Marilyn Tavenner, head of CMS, to delay the July1, start of Round 2 competitive
bidding. Tavenner, with a single signature had the authority to delay competitive bidding for six months,
but had no requirement to do so - it was her sole discretion. As a result, co-signers from the Legislative
branch strove to put political pressure on Tavenner. In this case, Tavenner rejected the Legislative
Branch's request, and went forth with the program. However, the Legislative Branch can often prove successful
in addressing CMS policy by voicing its concerns via formal letter instead of passing legislation for
issues that constituents wish changed.
Therefore, your elected officials have two ways of addressing
mobility funding policy: by passing bills or placing political pressure on CMS.
Our Need for
Advocates, not Lobbyists
Although mobility industry government affairs specialists have been all
but a lone voice on Capitol Hill due a lack of disability advocates regarding mobility funding, industry
professionals can only have limited success (which is why we've seen multiple funding cuts since 2005).
The fact is, our elected officials truly only care about stakeholder constituents, so when one with a
disability shares his or her personal struggle of trying to get the right mobility technology, it carries
exponentially more weight with policy makers than when an industry professional delivers the message.
My own congressman told me once, "I've known about the issue, but hearing your story and literally seeing
how your power chair serves you truly makes me understand the importance of this issue."
way, if we're going to preserve mobility funding, we must be an army of advocates, those with disabilities
telling elected officials in the first person what we need and showing why we need it.
the Rubber to the Road
Now that we know how the political process of mobility funding works, let's
understand how we, as advocates with disabilities, can be most effective in inspiring change and protecting
access to life-sustaining mobility technology.
There are three ways to convey your needs to your
congressman and senators: phone, correspondence (Email), and in-person. So, which is the most effective
means? All three in conjunction, of course.
Ideally, a face-to-face meeting should be arranged
with either your official or his or her staff. Constituents often think that meeting with a staff member
isn't as good as meeting with the official directly. However, the opposite can be true - meeting with
a staff member can be as beneficial, sometimes more so, than meeting with the actual official. Officials
are extremely busy, and have a big-picture view. Staffers, on the other hand, are delegated specific
areas of expertise, such as health care, and know the hot-button issues in-depth, responsible for briefing
and advising the official on what positions to take. It's great to meet directly with your elected official,
but a staffer can likewise be an extremely powerful ally for advocating your needs.
to a face-to-face meeting (or in lieu of, if you're unable to meet with your official in-person), a phone
call and email should be used to express or reiterate the topic. You don't, however, want to overdo it.
If you contact your official, and get a meaningful reply, you can be assured you're on record as being
heard - and that counts as a successful advocacy effort.
Meeting With Your Elected Official's
Whether meeting with your official or a staffer, there are specific protocols that should
be followed, ensuring utmost impact:
If you're seeking to meet with an official
at his or her home (district) office, ideal periods are around recesses on Capitol Hill (such as August),
dates surrounding holidays, and often Mondays and Fridays since the Hill is typically in session Tuesday
through Thursday. If you wish to meet in Washington D.C., typically Tuesday through Thursday are best,
but you may or may not meet directly with your official, as his or her schedule will likely be very busy
(I've occasionally met with my officials in hallways at times because they were in-between sessions and
only had five minutes to spare).
Requesting an appointment is as easy as a phone call or email
(typically schedule three weeks in advance), and some representatives have in-district walk-in times
to meet with constituents. For full contact information, check your official's website.
It sounds obvious, but know your subject inside and out, and be able to explain
it in a clear, concise way, avoiding jargon. Whenever I discuss complex rehab technology, for example,
I explain it as, "Wheelchairs tailored to each person's needs based on the complexity of his or her life-long
disability, just like you see me here using mine. It's especially built and fit to my exact needs much
like a prosthetic limb." The clearer you make the subject, the better.
You'll typically have 15
minutes to make your points, and you should divide it into three parts: the issue, how it directly effects
you, and what action you'd like your official to take. Again, stay on topic and only hit key points of
impact, and allow your official or staffer to ask questions as you go.
The first and third parts
of your talk are pretty straight forward - state the problem and the solution. Competitive bidding is
harming consumers, so we need you to vote for this bill to abolish it. However, it's the second part,
how the issue effects you, that makes all of the difference. I always say that "bills are about people,
not paper," and your job is to put a face to the issue - and that comes from sharing how the issue effects
you and your peers. I had my local provider service my mobility needs for the past nine years. However,
due to competitive bidding, he no longer sells or services power chairs, so when my power chair broke
six weeks ago, I had to somehow get my power chair to a new provider 75 miles away, and I was stuck in
bed for two weeks. These are the real-world issues that those of us with severe disabilities face in
your district due to competitive bidding. Such a compelling first-person anecdote has a lasting impact,
where your story will be on the official and staffers' minds as the legislation comes to fruition. It
won't be an abstract bill to them, but a personal one.
In closing your meeting, hand the official
or staffer an overview sheet that covers all important points relating to the issue. I'm a fan of keeping
it to one page, and as straight forward as possible (no one has the time or inclination to read a folder
full of material).
Pointers to Advocate as a Pro
The best part about advocating to resolve
mobility-related issues with your elected officials and staff is that they're there to listen and respond.
Nevertheless, you can help your cause by coming across as personable but professional as possible. Here
are some quick pointers on presenting yourself in the most effective ways:
-Be extremely courteous
and gracious from first contact. If people like you, they will take you more seriously. Manners go a
long way. And, treat all staffers with utmost respect. Today's intern can be tomorrow's Chief of Staff,
so never discount anyone's influence.
-Stay on message. Follow the "one meeting, one topic" rule.
If you're discussing a mobility-related bill, stick to that (don't go off on tangents about other issues
or frustrations). One meeting, one topic, period.
-Dress for success. Guys wear ties, and ladies
wear business-appropriate attire.
-Clean your wheelchair - it's part of dressing for success,
especially as a mobility advocate.
-Arrive for your meeting exactly 10 minutes early, no more,
-If you have business cards, present one to the receptionist upon arrival, as well as
to those you meet with.
-Talk about the issue, not politics. Stay on topic, stay on topic, stay
-At the close of the meeting, ask how you can best follow-up with the official or staffer
on the issue? This lets them know you're expecting action. If I don't receive a follow-up from the office
within a week, I send a thank-you Email, summarizing the meeting, requesting an update as to the official's
position or action surrounding the issue.
Every Voice Counts
What's inspiring about those
of us with disabilities engaged in the political process is that we get results. However, the challenge
has been that very few of us have engaged in communicating our needs to our elected officials, so our
voices have been unheard and our needs unmet.
As explained above, effectively communicating with
your elected officials - for your own sake and your peers - is a very approachable, empowering, successful
process. If each one of us reading this single article contacts our congressman and senators when mobility-related
issues or legislation is on the table, the political process will turn in our favor. Sharing our voices
and stories one-by-one works, and if every congressman and senator (and their staffs) can recall a single
constituent's story when facing mobility-related legislation, those of us with mobility needs will have
policies work for us, not against us. Truly, every voice counts. Your voice counts.
As a member
of the complex rehab community, keep up on the issues effecting mobility-related funding and services,
become an advocate addressing your elected officials, and together we can not only protect life-sustaining
mobility technology from further cuts, but actually elevate our lives and those of our peers' in the
Published 8/2013, Copyright 2013, WheelchairJunkie.com