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Insurance Hoops to jump through

Hello, I just found this group yesterday. My daughter was born in 1991 in St. Louis with the most severe level of PFFD, so she has, roughly speaking, an above-the-knee prosthetic. We were very very happy Shriners patients until she aged out of the system. We now live central Illinois and cannot find any prosthetist nearby that can help with a new leg. We found someone at the Rehab Institute in Chicago who is wonderful and very experienced. Unfortunately, our insurance denied our request for a new leg because the doctor is not in our area of service. Although the local prosthetic shops were unable to help us they are also not willing to write a letter to that effect - they'd like to use my daughter as a guinea pig to learn about helping a PFFD person.

Anyway, we're trying to appeal the decision and we cannot change insurance plans for another year. If anyone has any experience with an appeal and trying to convince the health insurnace decision makers that PFFD is rare enough that you can't go just anywhere I would really appreciate hearing from you.


We also had to file an appeal for why we should be allowed to go out of area for a certain prostheticist who had experience with PFFD.

We went before our Insurance board with videos and pictures of why the prosthetic was unique, a letter from our doctor supporting that the prostheticist we wanted was only available out of town, a letter from the CPO who left the area stating that there were no others who were local and also a CPO (and why we were looking outside the area for someone not local) and explained why when we went to the local prostheticists they couldn't help us. Questions we faced were things like "Well - did you go to Mr X?" We had and he had messed up the casting. Did you go to Mr Y? Yes he advertises as a CP and CO, but in our state you don't have to actually be licenced as a CO and he isn't actually licensed as a CO and said he'd never worked with this kind of device before.

They sent a date for review and gave us the option of going and doing in person. We did. They approved it.
Eventually a new CPO moved to the area and we've been very happy with that person. My advice is to get as much evidence as to why the local people aren't sufficient for the task, get letters of support, and hopefully get a sympathetic board. But also note that people move in and out of the area and sometimes the situation changes locally.