Equipment for Kids

[elarson]

I guess I am wondering if the power-assist is taking more priority than the chair. If she is going to be using a chair all day, the chair should be the first focus, and the power-assist should be secondary to that (just my 2 cents). Yes, they need to work together, but if she is uncomfortable in the chair, no amount of power-assist is going to fix that.

I knew nothing about Ullrich congenital muscular dystrophy (UCMD) but I just read a bit. One thing I saw mentioned was proper sitting posture to prevent curvature of the spine (scoliosis). There are quite a few on the forums with experience with this, and a good supportive backrest is probably really important if this is a risk for her. Have the OT's/PT's given any other advice, other than the joystick? I really think they should be and you should push for it as much as possible.

Have you also looked into a chair like Icon? Gordon can tell you more about it, but I hear it is good for a growing kid with a lot of adjustability and many options for specific needs like supportive backrests like an ADI. Another to look at is the TiLite Twist.

Other than the rep not being so responsive for SmartDrive, I still think you might want to demo it if her upper body control is good. It has many of the requirements you have mentioned, and won't add a lot of weight or width to the chair.

I hope I did not overstep with these concerns/idea's.

[elarson]

I don't know much about Manual Assists, but wanted to mention them in case they might help.

The RioMobility Pivot has a lever drive for kids, and there is also the NuDrive and Wijit. MagicWheels are wheels with a geared hub.

[Fast Joey]

Overstep? Not at all! I welcome each and every opinion thrown my way, as this is all new to me and I am just petrified of making the wrong decision here. I will take a look at those links you posted there, and try to make some sense of all of this...

As far as the comfort goes, I'll have to get into that with the sales rep, I'm hoping there's some options there, and that they ARE actually taking comfort and support into consideration. Would love to hear some Tailwind users opinions on that subject...

And good eye Gordon on the width measurements. I never would have caught that...lol

ON EDIT: Just spoke to the Tailwind rep once again, and he assured me that the seating options are endless, and that we can have whatever support is needed on it once she is measured...he also spoke of an affordable "frame upgrade" program that makes it reasonable as she grows to switch into a larger frame a few years down the road. I'm sure I'll get the whole sales pitch on Monday when I see him. *sigh*

None of this can be simple huh? lmao

[Fast Joey]

My daughter got to test out the Tailwind the other day, and she just LOVED it. So did I. Pretty sure this is gonna be the one.

[elarson]

Great to hear. I hope it all works out. Keep us posted.

[Fast Joey]

Just wanted to update this a bit. The manufacturer was really excited about the prospect of getting my daughter into this chair because she was going to some places where a lot of people that should see it, WOULD see it, and it would be getting the word out for them. When they heard I was taking her to NIH in DC for testing at CMD COM for the third straight year with all the other kids with her condition or similar, and also to MDA camp at the end of this month, they were more than happy to put her in a loaner for now. So she has been using the Tailwind for about a month now! They have been really accommodating to put it mildly.

If ANYONE is interested in this thing...go for it...give it a try. It has been absolute heaven for her, she absolutely LOVES it. I don't have a bad thing to say about as of yet...it has been a godsend for us, and it is exactly as advertised. I can't even keep up with her now! So far , so good...just amazing.

BUT...and there is always a but, huh? The provider is telling me we will get denied through insurance and they need a guarantor before they will even consider this in any way. Quote: "His policy is direct bill: no pre-auths but I know they will deny it; we will need guarantee to process this claim"

Any advice on this? Why is it so difficult to get my daughter into this chair? Why would they deny her...she can't walk! Surely they will pay SOMETHING...no? And I have an organization willing to pay $2,500 towards it! Then I can come up with the rest SOMEHOW...I'm sure of it.

Any advice or experience on the insurance end of things, I could really use right now!

[Gordy1]

That's great to hear that you've had the opportunity to give the Tailwind a good trial, and thanks for updating us with that info.

But not so good on the insurance news, and I'm afraid I have no advice as I don't know anything about US insurances. If it were me, I'd be tempted to contact your local newspaper, explain how your daughter has been loaned this chair, but now has no means of keeping it due to insurance not covering it...I'd bet you could raise the additional money very quickly that way....

And you've obviously managed to identify one organization willing to come up with a significant amount...are there any others you can approach?

Good luck.

[elarson]

Good to hear that the Tailwind is working for her.

I think it is definitely worth being in contact with your insurance company to ask about what they will cover. I've done some research for friends about power chairs and power add-ons and what Medicare covers, and I think that often insurance companies follow their lead. Perhaps that is different with kids, I really don't know.

I know for Medicare, a power assist for a manual wheelchair for adults, it is often very difficult to get covered unless it is needed for mobility-related activities of daily living (MRADLs) within the home. Rarely do they cover for what is needed outside of the home. For national coverage, see National Coverage Determination (NCD) for Mobility Assistive Equipment (MAE) (280.3).

The Frank Mobility website has some good information about funding for a power assist based on E-motion wheels, which I think would be similar for something like the Tailwind. On their sales sheet they list the HCPCS Code K0005 & E0986 which is the same as for E-motion wheels.

Best of luck to you.

[Fast Joey]

Got some more info on this...the reason the supplier doesn't want to touch it is because he doesn't think I can handle it financially, and is afraid he won't make a profit. And he's right. The max insurance will pay (and yup, those were the two codes I needed), is $5,200 if I squeeze every dime out of them. Add the $2,500 that is being donated and I STILL come up about 4K short of what I'll need to get her into this chair. Damn, they make it tough, don't they? Friends have suggested it's time to start thinking of a fund-raiser or something, because there's just no way I can handle it in my position. Ugh!

[Gordy1]

So the Tailwind costs around $12,000? Ouch. I didn't realise it was so expensive...but had I thought about it a bit harder, I should have known...(nothing in the equipment world is cheap!).

If you aren't able to find the remaining $4k, I'd be looking around at some alternate options. Perhaps the combination that my son has (Icon + Firefly) may not be quite as suitable for your daughter, but from a cost perspective it comes out at under $7k....