What a week. I was all psyched up and ready to hammer down three separate issues for Cody in the span of seven days. As the saying goes: no battle plan survives first contact with the enemy.
In late 2013 or early 2014, Cody started having difficulty walking, so we started the process of getting him a wheelchair. That was a bit of a hard go, but thanks to an amazing specialist at the local DME store and a therapist who did not pull a single punch when it came to her assessment, he was in his chair just over two months after getting the assessment. They pushed through to get him a lightweight TiLite wheelchair that he could push himself. He cannot push the hospital clunkers at all, which is what they wanted to give him at first. His evaluation for the manual chair was in May with an amazing therapist, and by mid-July he was in his chair, which was good timing as he soon lost the ability to walk by winter.
Cody had been talking about getting a powerchair since at least late 2015, but I figured if we went for it then, the lack of medically-substantiated evidence of his condition declining would end up with the insurance company either denying him a powerchair outright or putting him in one that would be wholly inadequate for his needs.
By summer of 2016, evidence had begun to mount, his core strength was deteriorating to the point that we began seriously looking into getting a powerchair. It was complicated by the fact that our doctor had left the area months earlier and we were without a primary-care physician. It took us until September to get a new primary-care physician.
By late autumn, we were ready to begin fighting toward the powerchair. Operating under what I had understood to be policy of the insurance companies, I set out to get Cody’s TiLite retrofitted to be able to suit him for the eventual times that we would not be able to take the powerchair, such as on trips with family or friends using their vehicles. That process led to our first pitfall. In November, I contacted the dealer that had outfitted his chair to get it modified. A few weeks later, when I sent an email to inquire about the status of the wheelchair, I was informed that the company had shut down their service and repair department.
We were then referred to a different company in Appleton, which was an absolute nightmare. We had to restart the entire process and have them submit paperwork as if the chair was a new order. That was The service and repair people had an annoying habit of answering the phone on speaker. Thus, we’ve been waiting since at least February. It took until the last week of March to get the modifications installed, however, the cheap foot straps broke within a few days, and we have been trying to get them to come back out and fix them, to no avail.
While having to fight this company, I called our first dealer to let them know I was not appreciative of the service we had received. After the manager apologized, she mentioned the seating specialist we had worked with for the TiLite, a great guy named Bob, was working with the company again. Hoping we could go with him again, we attempted to contact the Appleton dealer, but they ignored the demand Because the company in Green Bay was short-staffed, they don’t currently outfit powerchairs, so Bob referred us to another guy by the name of Dan at a different company.
Now on our third company, we are working on having them add a chest harness, new cushion, and repairing his foot straps while working simultaneously on getting the ball rolling on the powerchair. I could see the concerned look on Dan’s face that this needed to be a priority.
But wait, there’s more!
In 2015, our doctor at the time left the area to move to the East Coast. It took us some time to find a doctor that was LGBTQ-friendly at locations we could go to independently on the bus. We settled on our current GP, but were informed earlier this month that she too was going to be leaving, in her case to raise her children. Now, I do not fault her for wanting to take time off, had my mother been able to do the same, I would probably be much better off than I am, but my mom wasn’t married to a doctor. So inadvertently, we are left in a lurch. We have been told that we must have the prescription for the powerchair and an order for an evaluation by a therapist signed by a provider and that the same provider must also sign the report generated as a result of the evaluation. However, the powerchair prescription must be done at a face-to-face appointment.
I had called the doctor that I was going to be transferring to, but they said since Cody had never seen this doctor, he would need to come in as a new patient, which were booking out until October. So I contacted another doctor, who was booking out to July for new patients. So, there, we’re pretty much stuck between a rock and a hard place. Finally, though, Tuesday, we went to speak with Dan. That was good news for us, he told us that a physician’s assistant would be able to sign the paperwork that we would need to get the powerchair. When I called our health network back to get an appointment with a PA, we were told that one would be available on April 20th. However, a day later, they called back and said that due to what we were requesting, that we would need to see an MD, so I told them I wanted him seen by one in the next ten days. We now have an appointment on the 27th to get the scripts. By the first week in May, we should finally have the evaluation done and finished, only requiring the signature of the doctor to get through this first labyrinth.
I say first only because the insurance company may prove to be another one. The American health insurance industry is somewhat known for not wanting to cover adequate powerchairs. However, we have been in contact with the team of advocates at our HMO, and they have been surprisingly helpful. They told us that we can do both the manual and powerchair at the same time and also pointed us to a program that can help Cody get additional services and equipment much easier than through the HMO system. Aside from requiring us to start over with a different clinic for Cody’s orthotics after we had gone to UW in Madison, we’ve been somewhat happy with them.