After a spinal cord injury, one of the most difficult adjustments can be striking the right balance between accepting your new reality and hoping for a cure. In the 11 months since a car accident left her paralyzed from the chest down, Hot Springs resident Kesha Pilot has found that balance by devoting herself to advocating on behalf of people with spinal cord injuries and disorders (SCI/D).
In the little downtime between raising her 3-year-old son Parker, helping her husband Clay around the house and working as a receptionist at Magic Springs Water and Theme Park, Pilot, 26, is assiduously working to improve access and create opportunities for the thousands of Arkansas citizens like herself who live with SCI/D and rely on wheelchairs.
She is starting a support group to connect with and provide resources for other local people with spinal cord injuries and recently traveled to Washington, DC, to lobby on their behalves. On June 16th, Pilot will return to the Capitol to reinforce her message as one of over 70 wheelchair-using consumers participating in United Spinal Association’s 2nd Annual Roll on Capitol Hill. Pilot hopes to educate her Arkansas representatives about the obstacles facing people with spinal cord injuries and what legislators can do to help remove them.
“We want to build relationships with legislators and work towards finding solutions that help people in chairs out,” she said. “Having an established group, like [United Spinal], behind me gives me even more credibility.”
At the top of Pilot’s agenda is protecting access to Complex Rehab Technology (CRT). The term encompasses a small portion of specialized medical equipment like custom wheelchairs, seating systems and other mobility devices that are medically necessary and require evaluation and fitting by a trained technician. Cuts to Medicare and Medicaid have reduced the number of suppliers of CRT and the availability of competent technicians. HR 942 would establish a separate category for CRT under Medicare that advocates like Pilot would help protect access.
She is ready to counter legislators’ concerns about increased costs with the story of a friend who was not fitted correctly for her wheelchair and ended up needing an extended $30,000 hospital stay for a pressure sore.
“I stress, the importance of having trained certified suppliers that are doing the fitting. I don’t think (legislators) realize that it takes three months to build a chair and that they are made specifically for each individual,” she said. “I tell them they need to consider prevention and how the money spent now will save much more down the road.”
Pilot can laugh about many of the obstacles she has overcome in her first year in a chair, but she wants to make sure others don’t have to face them again. She cites the confusion over a medically-prescribed standing frame as an example of how lack of education and training is hindering people with spinal cord injuries. Pilot’s doctors at the Texas Institute for Research and Rehabilitation prescribed a standing frame for her when they discharged her back to Arkansas. The frame would allow her to exercise while improving her circulation and maintaining bone density, critical issues for people who are paralyzed. Her insurance quickly approved the frame but months went by and she didn’t get it.
She eventually called her local rehab provider only to find that it had been sitting there for weeks. When it was finally delivered, she asked the technician how many frames he delivered. He told her they didn’t deliver very many because they weren’t covered by insurance.
“I said that’s not true!” she recalled. “We have to change the mindset (that) there’s no point wasting time on (a prescription) because it’s not going to be approved, to, ‘Let’s try it and make it happen!’”
Even though she has only been paralyzed for less than a year, Pilot speaks eloquently and knowledgeably about the myriad issues facing people with spinal cord injuries. With a trove of stories illustrating her points and the personal experience to back them up, she is hoping she can make her legislators just as passionate as she is about spinal cord injury.
Life in Action