Getting A Wheelchair

Our daughter Lily is 18 months old.  We recently took her to Shriners for a Wheelchair consult and ordered her first wheelchair (pink of course).  We had such a great time watching her try out their test chair.  Take a look at a little video clip we took of her.  She caught on to the motion really quick.  :)

We learned a few things about getting a wheelchair that I thought might be helpful to share with other families who are thinking about getting one.

1.  It takes a long time to get a wheelchair.  If you want your child in a chair by age two for example, start at least 6 months in advance.

To get an appointment at Shriners first your doctor has to give approval for the wheelchair consult.  Easy enough. . . but when we tried to get approval over the phone, our doctor hadn’t seen her in eight months and thought she was too little to need one.  We took her in to see him about a month later and laid out our case for why we thought she was big enough.  Once they approve an appointment it takes 3 months to get in (just to get the appointment to assess and order).  We put our name on a cancellation list and were able to get in sooner.   Then at the appointment the wheelchair specialist measures your child, discusses specific needs and then helps you decide what parts to order (the kind of tires, straps, seat cushions etc.).  From there it takes another three months to actually get your child into a chair.  The time is so long because of paperwork, insurance approvals, ordering of parts and then putting together of parts.    I do not know how the process works at Primary Children’s.  My guess is that it is slightly faster (mostly because of the doctor approval).

2.  Insurance will only pay for one wheelchair every five years (in general).  Remember that your child will grow in that time.  So you will need to plan for that growth.

The frame of most wheelchairs can grow with a child which is helpful as time goes on.  Lily is getting a wheelchair at a very young age.  So getting a wheelchair that will last five years is a challenge.  It might be a little too big at first, but the wheelchair specialists can do things like tilting the wheels in so that she can reach them easier.  If Lily grows out of her chair before the five year limit is up, there are ways that the wheelchair specialists can work with insurance and try to get another one sooner.  Shriners is a great place to go.  They really work with you and your specific situation.  I understand that Shriners can lend chairs to families in need.  The wheelchair specialists also offer a great deal of expertise and experience.

3.  Most insurance plans cover about 80 percent of the cost of a wheelchair.

Before your wheelchair consult appointment it may be helpful to check with your insurance to see what the exact policy and coverage entails.

4.  If you feel your child is ready for a wheelchair (power or manual) go for it!

You know your child and his or her needs best.  If you feel he/she is ready or close to being ready, don’t wait.  We are new at this, but in talking to other parents and from our own experience so far, we can only see positive benefits in getting children independently mobile as early as possible.

Okay. . . here’s something just for fun.  We have been joking about a few ideas for sayings to put on bumper stickers on Lily’s wheelchair. What do you think?

“Shunt Happens”

“Live Well, Love Much, Cath Often”

“Got Spina Bifida?”

Any other ideas??  Come on, I know you readers are out there.  Please share other wheelchair ordering tips!


One Response to “Getting A Wheelchair”
  1. Katrina Navarro says:

    I love all of the bumper stickers. Just use all 3, they are awesome! They made me smile. Yeah for Lily and her wheelchair. I love Shriner’s too.

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