Wheelchair Woes and Insurance Blows

The wheels on the wheelchair go squeak, squawk, squeal. As I am walking Emily, the sound of her tires gets louder. They are completely bald. There isn’t any tread left. Huge gashes and complete chunks are missing. As we continue our walk, I begin to wonder if something bad could happen from pushing her on these tires. Could she get hurt? Will the wheels spontaneously combust? I have no experience with this.

I curse the insurance company, vendor, and wheelchair supplier under my breath as I walk Emily. My husband and I have been fighting for a new chair since this chair was only a year old. It was a lemon from the beginning. The seating ripped within the first six months, and Emily weighed about 80 pounds. (It has a weight limit of 150 pounds.). Then the break fell off. Literally fell off. The frame was never straight, which caused the wheels to wear unevenly. Every time we took it in for service, we were without a chair for 4-6 weeks. The first couple of times, the vendor gave us a loaner chair. In the third incident, they did not have one available. We needed one with a transit option since Emily was taking both the school and city bus. After leaving the vendor on a Friday without a wheelchair, I panicked. I reached out to one of Emily’s classmate’s parents, and they loaned us their son’s old chair until we could figure something out.

My hunt on eBay and other online selling platforms began. I finally found a used chair with transit tie-downs. It was smaller than her current chair, but beggars can’t be choosers as Mom used to say. I threw my credit card at the problem and expressed gratitude that we had $300+ to shell out on a temporary solution and a chair in the mail. The purple chair arrived, and it seemed tiny next to her current chair. Emily fit in it okay, but her hips were a little tight. It was hardly ideal.

Every year, the wheelchair required brake, wheel, or seating repairs. Each time, Emily would be compressed into an uncomfortable chair. This was the only way she could keep her independence and have access to anything beyond our home. She can only transition walk with maximum assistance for short periods.

In January, after a decade with this crummy lemon wheelchair, the doctor finally submitted an authorization for a new chair. Todd and I have always picked a medical insurance plan with the plushest durable medical equipment coverage available. The wheelchair would be covered in full with our insurance, BUT because she has Medi-Cal as secondary insurance, they had to approve the authorization too to move forward. What the actual….? I was livid and knew this would add months to the approval process. (Emily is still waiting for Medi-Cal to cover her first wheelchair from when she was 3. We ended up side-stepping this by getting better insurance!)

Four months into the authorization process, all the insurance powers that be approved a new chair. I may have seen a unicorn jumping over a rainbow that day, or I may have just been in shock. I was thrilled that a chair was coming soon. The vendor confirmed the supplier estimated they would receive it on May 4th. (May the fourth be with us.) Well, May came and went. No chair. The delivery would happen in June. I mentioned the wheels are falling apart on her chair, and we need the new chair ASAP or repairs on this chair because it is unsafe. (I don’t know if ripped, bald tires are unsafe, but I threw out the safety card.) The insurance will NOT cover repairs on the current chair because they approved a new chair.

Well, we are now in July, and the chair is still back-ordered, backlogged, or backed in a corner. It is back somewhere and not here. Now a new problem is here. The authorization is about to expire. Are you freakin’ kidding me? I called the vendor on June 30th to remind them the authorization is expiring and needed to be extended. I called back on July 5th, and it has not been extended, nor is the chair here. They updated delivery to July 14th. Well, I am writing this on July 16th, and guess what? No chair!

All of this is wrong on every level. First, insurance is supposed to cover things. I have said to agents (more than once), “I thought you are supposed to be an insurance provider, not an insurance preventer.” Second, Emily’s wheelchair is basically her legs. When our legs need service, they don’t take them away for 4-6 weeks with a good luck and peace out attitude. She relies on the chair to do anything and everything. Finally, my daughter and others with disabilities deserve better. I am experiencing this in many areas, and as she gets older, I feel more defeated and disappointed by what we are providing (or rather, not providing) to our disabled adult population.

I am looking for the good and positives in this situation, as I always do. Here you go. First, I am grateful that Todd and I were cleaning the garage yesterday and found an old set of tires I requested to keep the last time Emily’s wheels were replaced. Second, I am grateful that Richard, the tech, let us keep them. Third, I am so thankful my husband is handy and changed out the tires in less than five minutes, and Emily is wheeling a little better today than yesterday. Fourth, I am grateful that our family has excellent insurance to complain about. (I know if this is excellent, we are all screwed.) Finally, I am thankful that I can share the good, bad, and ugly in caring for a person with severe disabilities. Hopefully, as we create more awareness, things will change. The world will one day be better for the disabled population.