Tagged: ALS association, ALS Multimedia, ALS Walk to Defeat ALS, Disability accessm ALS, fALS, Flash briefings, Genetic disease, Genetics, medicare and ALS, Wheelchair
- This topic has 1 reply, 2 voices, and was last updated 3 years, 4 months ago by richard fredericks.
September 11, 2019 at 7:06 pm #13167AmandaKeymaster
I just read Rick Jobus’ column, Chairway to Heaven. Rick offers great advice and encourages fellow pALS to look into getting a power chair that will meet their needs now, and giving consideration to future needs. He mentioned that there is assistance through medicare for chairs and it can take between 13-28 weeks to get a custom chair.
My family had some help through the ALS Association when my aunt was first diagnosed. After a few months, my father and uncle purchased a very nice wheel chair for my Aunt Linda. At the time, they did not realize that my Aunt Norma and my father both would have their time with the chair. Indeed, it was a great investment. After my father passed away, we donated the chair to a veteran who was disabled and could not get around without an electronic wheel chair (my father was retired Navy and we knew this would be what he would have wanted).
My questions for our members:
1. How many people have used medicare assistance to obtain a power wheel chair and what was the process like?
2. What other organizations have you utilized to help with assistive technology and devices such as a wheel chair.
3. What advice can you share with newly diagnosed pALS to help eliminate some of the hurdles when seeking out assistive technology and devices?
February 4, 2020 at 1:46 pm #14412richard fredericksParticipant
I got my power chair through Medicare. They collaborated with OT folks at Dartmouth Hitchcock Medical Center. The OT used my current status to predict future degradation. This was very critical to the process. Otherwise, my chair would’ve fallen short of full functionality. I spent $2000 out-of-pocket for the elevate function. It is unfathomable that this wouldn’t have been covered. But these are the vagaries in the system.
In total, it took 20 weeks from sizing to delivery. The approval process took most of that cycle. The ALS foundation of Northern New England lent me a power chair while mine was in process. This was a godsend.
It is important to understand your rate of decline and get assistive devices in process before they are actually needed. The challenge is finding a sympathetic and savvy provider who can maneuver through the approval process. They need to build a compelling case based on future requirements. The system is more interested in the “here and now”.
The chair is a miracle. I wouldn’t want to contemplate life without it.
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