Tips for Parents When Your Child Needs a New Wheelchair

I recently went to the doctor to get a prescription for a new manual wheelchair, and I realized how much I have learned since I got my first one when I was 5 years old. For ambulatory wheelchair users, the process can be especially confusing, so I wanted to share some tips for parents who are trying to figure out the world of wheelchairs for little kids who are like me.

Think About How Your Child Will Change Over Time

When I was 5, my family and I realized for the first time that I needed a wheelchair. I could walk short distances, but I got tired easily and would fall a lot. The first thing we learned is that wheelchairs for regular use need to be custom made, especially for little kids. Custom chairs can be very expensive though. So, you will probably want to use health insurance to help cover the cost. The problem is, insurance will only pay for a new wheelchair every 5 years, so you need to think about how your child might change over that time. For example, consider the fact they might want to be more independent from you each year and might not want to be pushed as much. Will they be able to handle that in a manual chair for 5 years, or should you think about a power chair?

Ask Questions and Advocate for Your Child

When you use insurance to get a wheelchair, they want you to demonstrate that there is a medical reason for needing it. Once a clinician evaluates your child, they can determine if your child would benefit from a power chair and write a prescription. You also must work with a provider, who acts as the middle person between you and your child, the insurance company and the wheelchair manufacturer. The provider takes your child’s measurements and helps you figure out all the specifications so that the chair is fitted to your child. The provider also determines what components your child needs. One thing you need to know is that as a parent, you need to advocate for your child. Maintain an open dialogue with the provider and ask questions. If there is something that your child needs that isn’t included, or if there is something that is included in the order and you don’t think it’s necessary, speak up!

For example, I do not need assistive devices when walking. For some reason, when I got my second wheelchair when I was 10, it had cane holders! This was just one of many things that I didn’t need that made my second wheelchair too heavy for me and super annoying. So, pay attention to all the details before the provider places an order.

Your Child Might Need Multiple Wheelchairs

orange tennis racket beside green tennis ball
Photo by Ingo Joseph on Pexels.com

It’s not uncommon to have more than one type of wheelchair. I have two wheelchairs that I use on a day-to-day basis: a manual chair and a power chair. I use my manual wheelchair for short distances and shorter periods of time. I use my power wheelchair for long distances or long periods of time, or times when I need seat elevation. I also have a sports wheelchair (mostly for tennis), and a collapsible/folding chair for travel. A lot of the time, I choose which wheelchair I am going to use according to whether it will fit in the particular vehicle that is available. My family has a minivan that my power chair can fit into, but if I want to go out with a friend in a different car, I might try to take my manual chair if I can make it work. Which wheelchair to use for various activities is something I always think about, but it’s worth it.

Consider What Will Help Your Child

Some friends of mine who are wheelchair users have talked about how their parents didn’t want them to use a wheelchair if they could walk, because then their child might “look disabled.” So, my friends had to push themselves way past their physical limits and suffer a lot of pain and discomfort. My advice is that parents who do this are being ableist and are not helping their children. I was so happy to get my first wheelchair and couldn’t have cared less what anyone thought.

Also, some parents are afraid a power wheelchair might make their child look even more disabled than a manual wheelchair, so they don’t get one, even though the child really gets tired from pushing. Don’t be that parent. I didn’t grow up with many other wheelchair users around me, so a lot of my journey was trial and error. I don’t personally recommend this tactic. So, look for other experienced wheelchair users and get their thoughts. Don’t just rely on doctors who are not disabled to tell you what your child needs. In the end, they don’t have the same amount of experience as people who use wheelchairs.

About Maddie Kasten: Maddie is a Q Roll Model for Quantum Rehab. She lives in Phoenix, Arizona, and enjoys participating in adaptive sports, playing video games and watching anime. Click here to learn more about Maddie.


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