By ICS Civics League Member Stephanie Wallace.
Do you know that there are people who feel so passionately about a cause that they will show up to a congress member’s or senator’s office to fight for that cause?
Who is fighting for you? That’s a serious question for you to ponder.
As citizens with disabilities, our needs go beyond that of your average person. The equipment and services required to make our lives livable are not always known or understood by those charged with making those things accessible to us. So, how do they know what we need?
Two weeks ago, fellow ICS member Vernita Worrell and I took a trip down to Washington, D.C. to attend the annual conference of NCART, the National Coalition for Assistive and Rehab Technology. Complex rehab technology includes many things that people with disabilities rely on to be healthy and independent, like the apparatus that makes our wheelchairs go up and down, cushions that protect our body’s from pressure sores, or supportive headrests tailored to our condition.
Our trip was funded by a scholarship from the New York State Health Foundation that is designed to help empower health care consumers by making it possible for us to attend educational conferences.
I knew that on the second day of the conference we were going to travel to Capitol Hill to talk to members of Congress about our need for our assistive and rehab technology. The U.S. Centers for Medicare and Medicaid (CMS) is planning funding changes for these items that could prevent people with disabilities from getting access to what we need.
NCART has been working to prevent this from happening and, as a result, for the past few years, Congress passed legislation delaying these funding changes. The problem is that new legislation has to be passed by June 30, or the CMS funding changes will go into effect, which would be a disaster for those of us who need this complex rehab equipment.
To help prevent this, I urge you to call your member of Congress today to tell them to protect your access to complex rehab items. All of the information you need is on this webpage, where you can also email your member of Congress. If you are not sure who represents you in Washington, you can use this tool to find out.
Honestly, at first I felt a bit intimidated by the task of visiting my representatives in Washington. Reading the information packet we were sent ahead of time to prepare for the conference was a little overwhelming. I was just reading words that wouldn’t come together with meaning. Immediately, I felt I was in over my head.
Upon our arrival at the two-day NCART event, we were armed with the information we needed to speak with the members of Congress and the Senators that we would meet. Many people attending this conference were impassioned veterans in the fight for disability rights from all over the country. They offered support and guidance. We were assured that there would be someone with us every step of the way.
Our first appointment was with the office of Representative Tom Suozzi. Although we met him in passing, we met with his aide, Diane Shust, for close to an hour. Shust, who is the congressman’s legislative director and deputy chief of staff, was quite nice. She was engaged in our conversation and she took notes. Vernita and I told our stories. We explained how our equipment is necessary for our daily living. We explained how items referred to as “accessories” are actually customizations that allow us to be as independent as possible, and also prevent injury.
Our job was to give them a human face and story to attach to these bills they are contemplating. We also met with aides in the offices of Senators Kirsten Gillibrand and Chuck Schumer, as well as Representative Yvette Clarke. The reactions to our visits were mixed. In the offices where we had pre-arranged appointments, the aides were very attentive, engaging and took notes. The visits to offices we went to without appointments were a bit rushed and although there was a pen in hand, I did not see any staff members taking notes.
All in all, this trip was an eye opener. It showed me how easy and important it is to make your voice heard. Does that mean things will go in your favor? Not necessarily. But it does let those making decisions about your life know what your life needs.
Let’s let our voices be heard and our needs known. Let’s stand together for us all.
To learn more about what you can do as a consumer to protect complex rehab technology, visit the NCART website here. You can also sign up for their newsletter here, which will help you stay informed. To learn more about the ICS Civics League, come to one of our meetings!