After about a year and a half of wrangling with the system, Jon has a new wheelchair.
His old wheelchair was never appropriate for his needs, and only really fit him in the last six months, although it was prescribed five years ago, with a rebuild three years ago. Given the cost of the rebuild, it should have just been replaced–in retrospect was a poor decision, but not ours to make. Though we authorized it. Let me elaborate.
To obtain a wheelchair that is funded (in whole or in part) by the public system, you enter a bureaucratic machine that is still a little overly complicated, to put it gently. I think that every individual involved is doing their best within the system, but I have a few bones to pick with the system itself.
To begin, you talk to a physiotherapist, or in our case (this time), the seating clinic of Bloorview MacMillan, the local hospital for disabled kids, who assigns you a PT. The first question our of their mouths is “Who will be the vendor?”, meaning the private company who will supply and service the wheelchair. The PTs are not allowed to recommend a vendor, which is understandable. Problem is, how are the parents supposed to know of a good one? We don’t even know how many suppliers there might be – wheelchair vendors aren’t exactly likely to be in the local mall! The only people who have a sense of the options out there – who work with all of the suppliers on a daily basis and who are most likely to have an idea of an appropriate vendor – are the physiotherapists, and they are not allowed to have an opinion.
Frustrating. At least in our case we have hooked onto some nice folks at HME Mobility , so off we go.
But as of last year Jon hadn’t grown out of his chair. And since we were asking for some government funding for the chair, the physiotherapists were extremely reluctant to authorize a new chair until he grew too big for the old, bad chair. (Without a compelling reason for a new chair there’s a chance that the government wouldn’t authorize the money. Of course, in my view the fact that Jon couldn’t wheel the old chair without slouching over is a damn good reason, but I guess that’s harder to put on a form than “grew too big”.)
Remember, these chairs are what the physiotherapists worry about in terms of
long-term posture–the kids are sitting in them for eight hours at school, and some of them at home as well. They are very touchy about how an incorrectly-prescribed chair could lead to permanent issues down the road.
But from what I see, if the chair is inappropriate but not too small, you are stuck. I’m sure this disconnect comes from the need to balance the expenditure of government cash with the needs of the child, but it does seem like everything is serving the system, and not the people in need.
As well, parents co-sign for the equipment along with the physioterapist who recommends it, but of course, we are going entirely on the recommendations of the PT. So in the long term it’s deemed as the parents’ fault if the equipment is inappropriate. We were led down the garden path by Jon’s first PT and vendor, and now we’re the ones that gets blamed for it by the current PTs. Grrrr.
As we delayed for growth, we dealt with some other bureaucratic issue on another front, so initial funding concerns for us were resolved and the hospital was told of this in late April, so were given an immediate appointment in… mid August.
This was the most productive meeting: We had a room of experts. The vendor, the therapist and the seating technicians, all taking measurements and discussing which bits and pieces will be the most beneficial for the wheelchairee. Sometimes we had a chance to offer an opinion, but more often it was a flurry of jargon. Occasionally we would interrupt to make sure we got a sense of things. Fair enough. HME was to provide the chair, the hospital would provide the seating. It would happen within 2-3 weeks of provincial approval.
Provincial approval took just over a month, and HME worked quickly, but it was early December before we were asked to come for the final touches. And that’s when we found out that though the vendor had supplied the parts correctly, all of the seat parts that the Bloorview Seating Clinic ordered were too small. They tried to brush it off by claiming that Jon had grown several inches since August. But since 1) they got other simple basics of the order wrong (like the type of seat belt latch we had all agreed on) and 2) WE’RE HIS PARENTS AND JUST NOT THAT STUPID (he had grown maybe one inch, if that) we just stared at them. They asked for another week, which turned into three. Just before Christmas, the new seat parts came in and we’re away to the races.
A chair that fits. Easy to push. Better for him to practise wheeling himself.
So onto the next challenge. In his new perfectly-fitting chair, Jon automatically slumps forward. What the ???
Well, we’ll see as the New Year progresses.
This week, two Ohio State University researchers published an enormous study that refutes the commonly-held belief that terminally-ill people can will themselves to live until significant dates (eg birthdays, Christmas, etc) have passed. This is known as the Passover effect (due to one study involving observant Jews over the high religious holidays) and has been noted – anecdotally – for years.