ICS Members Go to DC to Protect their Wheelchairs!

Do you know that there are people who feel so passionately about a cause that they will show up to a congress member 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?

In 2017, 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) was planning funding changes for these items that could prevent people with disabilities from getting access to what we need.

NCART had been working to prevent this from happening and, as a result, for a few years Congress had passed short-term legislation delaying those funding changes. But when we went to DC, the CMS funding changes were scheduled to go into effect a short time later, which would have been be a disaster for those of us who need this complex rehab equipment.

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 was 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 the bills they were 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. To learn more about the Civics League for Disability Rights, follow them on Facebook and Twitter and email civicsleague@gmail.com to ask to be put on their mailing list.