Any Old Wheelchair Doesn’t Work for Me

Hello fellow rollers and advocates! My name is Jennifer Wolff. I’m an occupational therapist and survivor of an ependymoma (tumor inside the spinal cord from T7-L2). My injury is around T10. After the first surgery in 2003, I had an incomplete injury and with lots of physical therapy/pool exercise/baclofen pump. I could walk short distances with a walker. At this time I was on Blue Cross/Blue Shield and received an Invacare MVP which fit my needs. In the meantime I finished my masters degree and went to work before the tumor reappeared. Next surgery was in 2006 accompanied, by radiation, and I became a full-time wheelchair user. I also went back to work 25-30 hours. At 5-6 years out, I was starting to have rusting and needing to replace parts on my chair and it was decided to get a new one. Needless to say it was a much longer process this time…

I had to go on Medicare while recuperating the first time and it is still my primary insurance, as I work part time. I pay out of pocket for supplementary insurance too. Initially, the physical therapist and wheelchair vendor agreed on an ultralight chair to help prevent shoulder/hand injuries….DENIED. I tried again once some of the issues were cleared up….DENIED. I then tried with another evaluation with an occupational therapist and another vendor who was upfront and stated that ultralights were not covered by Medicare anymore. the vendor explained they used to be able to go to court, but had been denied recently trying to get the exact same (ultralight) wheelchair a person used for over 10 years!!!

I finally received a new chair – a level below my previous chair (from a Kooo5 to a K00004). This was mostly due to the fact that Medicare has the “in home” clause, where they look only at your ability to get around in your own home vs. how you live your life. What do they think…..that all wheelchair users live in a cave? That we can’t have jobs? That we can’t have social lives? That we can’t be out and active in our own communities? This has to change!

I felt I had to get involved in changing policy regarding wheelchair coverage because as an occupational therapist, I want to be able to recommend the chair that best fits the client – to the home, to the community, to the car, to the job, to the family. I’ve traveled to DC with CELA 2010, 2011, 2012 and will be proudly attending United Spinal’s Roll on Capitol Hill in June. In April, I rushed from the House side of the Hill to the Senate side, which worked well because I was able to tell my Senators that “my shoulders should not hurt from wheeling several blocks”. Having an ultralight chair for anyone who is active actually prevents upper extremity injury, pressure sores, depression, and can actually make money by being able to work longer and pay taxes!

I have gotten involved with UsersFirst and have been awed by the work that Ann Eubank has done to get it up and running. It truly is a grassroots group to help wheelchair users share their stories, so policymakers really understand our problems. We have a voice!

Being an advocate for myself and for others, has lead me to participate in the Ms. Wheelchair Iowa and Ms. Wheelchair America programs as well as getting more involved in politics and other organizations. I am now a board member of the Spinal Cord Injury Association of Iowa and hopefully the Iowa Parkinson’s Disease Association board. It is very important for each of us to find at least one policy, if not all disability issues and talk to our legislators–even go to town meetings if possible. They will never see or understand your problems if they don’t hear about them!

Don’t let them take away the wheelchair that works for you! Fight back now.

Jennifer Wolf