The Wheelchair Saga: Part One

I labeled this part one since we're only 4 months into the process ... and still pending insurance approval. *Sigh*

Earlier this spring, we realized that Teddy's Kimba Kruze was well past it's useful existence for him. He's still within the weight range, but he's so lanky that he drags his feet on the ground. The seatbelt also no longer stays snug. The wheels stick a bit, even when well lubricated. We've used it a tremendous amount over the past 7 years, and it served us well. But it was time for a new one.

Because we won the Kruze, this was our first time requesting a chair for Teddy. Naively, I imagined it would be as simple as asking his caseworker because she's been able to assist with every other request we have, even if the ordering process took a bit. However, the response was that we needed to work through our insurance first. If our insurance didn't cover it, then we could explore whether the county could assist us.

So we reached out to Teddy's doctor to ask for whatever was needed to go through insurance. We were informed that Teddy hadn't been seen in more than 6 months, so they needed to physically see him. So we set up his physical, and then just a couple days before the physical we were told his appointment was being cancelled because his physical was scheduled for exactly one year from his last physical. The doctor's office wasn't sure whether insurance would cover it ... so a couple phone calls later to our insurance company and the doctor's office, and we were set to keep his appointment.

That appointment started the referral process formally in April. But, the paperwork to NuMotion, the company that would order the chair, got lost. Without knowing how long the process would take, I waited nearly a month to follow up with the doctor's office, who said everything was sent to NuMotion. I called NuMotion, and that's when I learned that the paperwork was lost. A couple phone calls later, and the paperwork was tracked down. 

That phone call is also where I learned the process entailed:

1. The initial referral from the PCP.
2. An evaluation by NuMotion's staff in conjunction with a PT or OT.
3. Review of the evaluation by the PCP.
4. Submission to both insurance companies, both of whom would need to approve it.

Let's just say that by the time all the paperwork was tracked down to actually set up the evaluation, we were already in June (and guess what, I made several more phone calls to check in and track down missing paperwork). Then it took another couple weeks to get the evaluation scheduled (which was never actually confirmed, so I just crossed my fingers and hoped for the person to show up). Then it took another couple weeks for NuMotion to get all the paperwork they needed (which required more phone calls and e-mails to follow up on paperwork that was submitted but was missing from the file).

And then, I got to make more phone calls to track down more paperwork from the PCP because that got misplaced or lost in transit (again). Finally in the first week of August everything was submitted to insurance. 

So now we wait anywhere from one to three weeks to hear if insurance approved, denied or needs more information. (Spoiler alert, we're already more than a week into that wait.) 

The best part of this whole saga is the fact that we've been told by multiple people at NuMotion that Medicaid is extremely tough to get approval for pediatric strollers, which is what the Kruze was. In fact, during phase 2, we were asked if we had alternate funding sources since it was that likely to be denied.

Oh wait, the other really stellar thing I learned during that assessment was that they had to size up the chair to last Teddy 5 years. That's right. If insurance approves a chair for Teddy, which is apparently a really big if, the same chair must fit him well and meet his needs when he is 8 as when he is 13. Well, at this point, I guess it must fit him the same when he was measured when he was 8, but he'll be 9 or 10 before they every approve it, build it and get it to us ... because kids never grow or have their needs change.

The silver lining in this horrid process is that we were able to pick up a chair in Chicago at the end of July from another PIGN-CDG family as their daughter had outgrown it. So we cleaned it up and pieced together something to work for the meantime for a lap belt. Ted is rocking the purple chair in the stylish way that only Ted can, and we're very grateful for a chair that fits him much better, doesn't allow him to constantly drag his feet and works so much better than the old one we wore to the ground.

He still looks huge in this chair, but it's mostly the angle.