Buying New Wheels

Aidan got his new wheels last week. His first power chair lasted all five years that it really needed to. Insurance doesn’t like to replace them more often than that. His was being held together by duct tape and had developed a suspicious grinding noise. Aidan’s new chair is similar to his old one but offers seating choices. It reclines, tilts and most importantly raises up to the height of his peers. We absolutely love this feature as it gives him more dignity and allows for better inclusion.

The process of getting a wheelchair is complicated. Like so many other parts of Disability World, it requires a team. I listen to and respect their area of expertise. My responsibility is to ask questions and make final decisions.

My physical therapist has worked with Aidan since birth and knows exactly what kind of support his chair will need. She lets me know the how and why of which pieces will be beneficial to him. We also work together on what I consider to be functional and what additions to his chair I will or will not use. She did not get everything she wanted because I have no problem with my veto power and I am so comfortable with and honest about my limits.

Then there is my DME guy, durable medical equipment. He is familiar with the different product options on the market. One of the key deciding factors in Aidan getting a powerchair five years ago was having time to trial one, giving him a chance to learn. Our DME guy is the one that made that happen by getting us a loaner chair for several weeks. I can’t stress how important this is for this kind of decision. And finally there is the product representative. He’s the one who also knows what specific options the chair offers and can program it. We make nice with him because I’m pretty sure in some scenario of robots vs. zombies vs aliens, we’d need him to get Aidan’s chair to defend us.

This entire process took seven months and that was with no problems. None. First there are appointments to talk through options and make decisions. Then there are appointments to measure specifics. Then the PT writes a magical letter of medical necessity that has to have all of the right words for insurance to approve. This is where it could take an extra couple of months to answer follow up (usually ridiculous) questions from insurance. Then there is the approval process, the ordering process, and the putting it all together process. And the day we finally got Aidan’s chair was a three hour appointment (maybe I ask a lot of questions). There were pieces that had to be adjusted specifically to Aidan and still more decisions for me to make and a bit of a learning curve for me to know what all of the buttons do. So. many. buttons.

We all know the squeaky wheel gets the grease, right? I was not a squeaky wheel when Aidan was little and I can tell you that a piece of paper sat on someone’s desk for too dang long and held up the process of getting a piece of equipment. When I finally called to find out what was going on, their response was that they meant to call me to ask a clarifying question. I never used that vendor again and I learned to ask better questions.

Here are my questions at each step:

What happens next? Who is responsible? When can I expect that? This is how I know who to call and when and I do call at every step. My wonderful DME guy went on vacation when Aidan’s chair was expected to come in and we’ve worked together for awhile. He’s a keeper. I’m 82% sure he was looking over his shoulders waiting for me to jump out and move the process along.

So definitely not an easy peasy process but, oh, so worth it. Independence is life changing and Aidan deserves it.