WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Monday, December 26, 2011

Wheel Chairs- Where do you find the right one?

In our house we went from Abby saying absolutely no to any type of wheelchair, to her begging me to find her one.

So if you need a chair in a hurry where the heck do you find one?

If your child is getting care in a clinic you may have access to a PT/Wheelchair clinic. From what I have heard they know a lot about chairs and how to buy one in your community. They have even have some lenders for you to try, or to use while you start your journey...

I have also heard that the MDA clinics have wheelchairs to lend and a fitting clinic where they help you figure out which chair you need.

Mitoaction.org has some different resources listed and the general process.

How we found Abby's chair is that a week after we got the prescription from her Dr. we saw that an Abilities Expo was in town. From the advertising this seemed like a good place to start. It was terrific! They had tons of venders with many different styles of chairs for all needs. They also had cars/vans that had been modified for power wheelchairs.

If we could have, we would have gone with a modified manual chair- something that could be slipped into our trunk. But, at 16 Abby doesn't want to be pushed, and she just doesn't have the go-go juice to push herself so we noted the various powerchairs while at the Abilities Expo. We gathered business cards and were pretty forward in stopping folks who were using chairs to ask them what they thought was the best one- in two hours I had more information and a much better understanding of the world of wheelchairs.

We contacted the Permobil representative in our area to ask him who they had worked with as far as dealers goes and he was great and knew a company and a contact in the company that he had worked with and we set an appointment.

We worked with a PT at the wheelchair vendor. The rep from Permobil met us there too. They fitted the chair(they measure every inch and note different special needs for the chairs). Then, the waiting began. For us, the longest wait involved the insurance. From start to finish it was a 3 month process which from talking to other folks seems pretty average. They brought the wheelchair right to the house for the final fit.

Now- we need to buy a car/van to haul it. Not going to be cheap! I am sooooo not a fan of minivans, but it seems that is the best/most affordable choice.

Over this process I would have been really lost if I did not have my support group online friends- their tips ensured a smooth process.

A few I really used-
1) Not only did I take the prescription to the first wheelchair appointment, but Abby's medical records. I was lucky enough that Dr. Kendall had written a terrific summary of Abby's medical history and diagnosis- the wheelchair company was able to use that summary for proper codes and to submit with their billing and the prescription- I suspect that helped the process a lot.
2) We were warned to know about which wheel chairs we were interested in before approaching a wheelchair company- like car dealerships, they tend to favor certain brands and you may to ask to see more then the brands they carry.
5)There seem to be a few different options the insurance won't pay for, don't be surprised if some of the options are denied for the chair. Our insurance won't pay for the lift(chair goes tall enough to get into the kitchen cabinets with ease)for anyone, so we paid out of pocket for that option, Abby isn't getting out of doing dishes that easily!!! LOL A set of handles on the back of the chair were not covered and we opted to not buy them- we might regret it, but we can have them added later if needed.
6) Try to think about how long the model you have picked will serve the needs. Will it work for school? In 2 or 3 years if their physical needs have grown, can this chair be modified to met those needs? Abby chair was hugely expensive, I don't think our insurance is going to approve another for quite a few years without a very good argument. We tried to forecast for the next 5 years- easier since Abby is done growing.
People often wonder, how do you know when you need a chair? I think that is so personal. Had we introduced a chair earlier on(had we known it was an "energy" disorder)I think Abby would have been more accepting of it, and we may have been able to hit the zoo, parks etc more often. However, Abby was quite adamant for many years that no way did she want one. So, even though her life became more limited we tried to respect her wishes. About 2 years ago, she developed an interest in the Mall but struggled to get through the parking lot let alone walk the mall- she asked for a chair at that point. She has had a couple days around the house where her "wobbly" legs have led her to use her chair, but mostly it will be for trips outside the house.

When the wheel chair was delivered, it was a day of celebration here! She was so ready to have a tool that let her do the things she missed doing, that the chair is very near having a name :-) Had we brought the chair in last year, she would have seen it as her nemesis instead of a spare set of legs. You will know when it is time.


Wheel chairs said...

Wheel chairs that helps to make it easier for people to move and is compact, portable and easy to use.

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