Roll On, Roll Off
I recently got a chance to go on a trip to Washington, DC to advocate to Congress as a part of the United Spinal Cord Association’s Roll on Capitol Hill.
Here’s the rundown on what we went to advocate for:
First, the Air Carrier Access Amendment Act. This act asks for, or shall I say, requires the Secretary of Transportation to access civil penalties for Air Carrier Access Act violations, refer patterns of discrimination to the Department of Justice and grant individuals with disabilities a private right of action in civil court. It also requires the SOT to formulate standards to address effective boarding and deplaning, visually accessible announcements, seating accommodations, lavatories, and stowage options for assistive devices. Last but not least, it ensures all covered gates, counters, ticketing areas, and customer service desks are accessible to individuals with disabilities.
That first act was a lot, I admit, but it was so much easier to explain and break down in person. The Second Act focused on our everyday lives, and I honestly can’t believe this wasn’t already a law. The Disability Access to Transportation Act wants to establish a paratransit pilot program that allows additional stops. Part of it also requires U.S. Access Board to publish final public rights of way guidelines setting minimum standards to ensure that sidewalks, pedestrian street crossing, signals, and other facilities are readily accessible to and usable by wheelchair users and individuals with mobility disabilities. It requires an active link to the service providers website, a telephone number, and notice that a consumer can file a disability-related complaint with the OCR and FTA
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With both of those acts, we are asking both the Representatives and Senators to co-sponsor (support) H.R 1267, S 545, H.R 3845, and S 1813. To put the icing on the cake we also asked and advocated for the support of removing restrictive “in the home” language from Medicare’s National Coverage Determination for Mobility Assistive Equipment with a regulatory or legislative fix support Medicare coverage for standing systems in power wheelchairs; and conduct a full review of the current mobility devices, benefit coverage, coding, and payment policies to allow access to mobility devices that needs of full-time wheelchair users both in home and/or in the community per the House Dear Colleague Letter.
I had such an amazing experience for it being my first time. I had an extraordinary daughter-father duo that was my contingent during my Capital visit. Allison and I both represented the Greater Kansas City Chapter of the United Spinal Cord Association. With Allison, representing Kansas and I, Missouri. While in DC, I got on a subway for the first time in my life. I believe if I were of able body that experience would have been so much better. As a wheelchair user, it was so hard to find some of the accessible entrances, aka elevators. I also enjoyed how the African American Culture Museum accommodated my disability and made entering and exiting very easy. I also loved having my 14-year-old daughter with me. My daughter and son both were present in the home when I got shot. My daughter had to come into my room and see me covered in blood and her 6 weeks old brother centimeters away from me covered by a pillow and blood. At this point, she had to take her brother and go call for help and protect him while not knowing if I were still alive. For her, to be with me now in DC at that moment made me cry. I pray that I’ve set an example of how to beat adversity and a lesson on no matter what life gives you it is up to you with what you do with it. There is always purpose in the pain and my purpose in this world is just getting started.