Why I advocate

Chapter 3 $14,870.00 say What ?!

Would you believe me if I told you that a mobile power wheelchair can cost up to $14,870.00 without insurance and a bath chair can cost up to $360,000 depending on the brand you want and what works best for you and your needs?

For the longest time, I've always been angry about this side of the medical field because the cost of a wheelchair shouldn't be so expensive and neither should a bath chair because these things are essential for us to survive on a day-to-day basis to live!

The question that crosses my mind when I think about this to this day as a 26- year- old woman who's had cerebral palsy her whole life and has had to deal with the struggles of insurance and the timeline to receive a wheelchair is six months to a year, alongside a bath chair.

The healthcare system doesn't really care about those with cerebral palsy because if they did, they would try harder to push things through faster, especially these insurance companies, and they would make sure the equipment that they're paying for is high quality.

Which nine times out of 10, the equipment they give us is cheaply made and of poor quality. For example, when I turned 20, I put it in for a new bath chair, assuming that I would get the same brand that worked perfectly for me and my needs, was sturdy, and it was adorable and I didn't have to worry about my bathchair breaking down on me.

But when we went to go put in the paperwork for the brand-new bath chair, which we thought would be the same brand, the company that provides the bath chair notified us that they no longer pay for that brand and that I would have to get a starfish bath chair.

I was okay with that since I didn't have much of a choice at the time, so anyway, fast forward, the company comes to my house. They build the chair, which was made out of two plastic pipes and had a purple cover on it.

My mom and I noticed the bottom of the chair started to get mildew and get all brown and the button started to peel off I remember being very agitated and thinking to myself, "Why is insurance not wanting to give us good quality equipment? After all, this is supposed to last us five years."

But that wasn't the straw that broke the camel's back, surprisingly, because I was still able to take a shower and be independent, but it was one day I was getting ready for the day, taking a shower, singing one of Blake Shelton's songs.

Well, I washed with soap. I moved in the seat and I heard a click, and next thing you know, I'm on the ground.

Luckily, my home healthcare assistant was right there and was able to assist me in helping me with getting up and I was able to show my mom how it happened. She immediately got upset and called the insurance company and wrote a report now I no longer use that brand of bath chair and we wound up buying a bath chair out-of-pocket.

As far as the wheelchair goes, I'm still going through insurance to get my wheelchair because I'm due for my six-year upgrade in a sense, but it's taking more than six months and it's been very frustrating trying to contact all these different people about my chair and not getting any answers just as of yet.

But this is a reminder of why I advocate for a better way of navigating through the healthcare system as an adult with a disability because we shouldn't be given the short end of the stick once we reach the age of 21, and also, it should take six months to a year to get the equipment that's needed for us to survive. This is why I advocate it.

1. It shouldn't be difficult for us people with disabilities that have had them since we were born to get the equipment that we need, such as a wheelchair and bath chair.

2. We need to fight to get better quality equipment. Why is it that we have to get things that are cheaply made for us to have a chance in society, and how is that even right that these things are supposed to last for six years?

  I have to ask myself how that is constitutional, how that is right, and we live in America, and the ADA was signed by President George HW Bush almost 32 years ago, and yet we still have to deal with the disconnect from society and the struggle of feeling as if we are being camouflaged by society. It's just not fair and I can't take it anymore. With that being said, I would like to get into the last chapter.