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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
How often will insurance pay for a wheelchair- is it one per every certain amount of years? And how hard is it to get approved? I can still walk but fatigue utterly after short distances. I'm worried if we request a wheelchair eval insurance will decide that my ambulation is not impaired "enough." What do you think?

We are using a cheap manual chair right now but it sucks on grass/gravel. We are avid, avid hikers and I don't want to give that up. I know I will probably never be able to traverse steep, rocky, narrow trails again..but I'd at least like to be able to go on accessible trails with an appropriate all terrain wheelchair. The ones we have found that look promising are all $2500 or $3000 or more.

Not to mention that entering PWC territory means needing a wheelchair van and complicates air travel.

I feel totally lost!
 
Once every five years, last I knew.

Start the process now. First, you'll need an Rx from your doctor (my local neuro gave me one.) Then contact a provider and they will send a PT or OT to your home for an evaluation (you can do all this through a clinic but I got faster and better service locally.) They will observe you and ask you questions. Push hard for all the whistles and bells. Sometimes certain companies will offer incentives to providers to push certain chairs. They did that with me but I wanted a different chair. I ended up calling Permobil direct and told them the vendor was steering me away from Permobil. It ended with my getting the chair I wanted and Permobil paid for the elevator function.

I've had mine a year now and only use it for practice. It's pretty flat in Daytona and the beach is hard sand. It works in my house, on the grass and on the hard sand. I can still walk good and don't like to travel so it'll be here when I need it.

Meanwhile, ask your local ALSA if they have a loaner.

Also, if you are close to a dealer, go and try different chairs. It took me over an hour to settle on the type of Roho cushion I wanted. I got extra padding on the arms and it was justified because I'm also dx with fibromyalgia.

I actually wrote the letter of necessity myself and my doctor signed it. The letter should say that each feature you require is medically necessary and explain why.
 
It is not that insurance decides whose ambulation is impaired, Kristina, it is that the form they require will have to include an account of why you need a wheelchair. The supplier will not submit it, will not even start it, if you don't meet the criteria, which begin with a doc (usually via a PT or OT associated with your clinic) writing an order. They all know how to document. I am confident that you will not be dinged for being too mobile.

As Kim says, you should start now. It all takes a while and you want to take the time to identify what you need and have all the paperwork fly around, then wait for the chair and all parts to come in, take delivery, etc.

Be up front with your DME (and yes, interview them if you have more than one option in your network, which I would think you would in your area; they do vary) about the kind of trail you want to go on (e.g. slope, traction needed, how long you are out) and be clear on the type of batter(ies) that are options in the chassis you select as you will want the higher capacity one if applicable.

We have several members who are frequently on the trail in power chairs and I know many more outside the forums. Most are in Permobils but some are in Frontier, Amysystems, Quantum, Invacare and others. You can find order forms for each type of chair with all the options at the Permobil and other sites. They also have specs showing the max slope and climbing max forward/background, as well as videos showing the different features.

There is more and more transit to trailheads, so you might want to explore those options as well, if only to avoid needing to rush on a van if you need one. As for flying, for shorter hops, it's true that you may be better off on trains, ferries and ships than planes due to the airlines' often shabby treatment of power chairs, but again advance planning and comparison shopping are key.
 
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I am not sure the same chair that is good for trails would be comfortable for every day. Our member who uses trails a lot has multiple chairsmaybe he will chime in.

somewhere on here he has several inform informative threads about picking chairs. Maybe you could search for them or someone not using eyes could link to them.
 
You may find that the approved wheelchairs are not the best all terrain wheelchairs where four wheel drive and high clearance are needed. One PWC involves making compromises. My wife's center drive Quantum weighs 450 lbs and will get stuck on wet grass so it is a home chair (all the bells and whistles are a weight penalty). The Whill model C weighs 115 lbs and works much better outside (but not a trail PWC). So, you may need to get insurance to pay for a 'home' chair and fund the other chair thru other means like family, friends or crowdsharing.
 
Generally, insurance will pay for a new chair before 5 years if it can't be modified to meet your basic mobility and positioning needs, but getting the right chair the first time should make that unnecessary. I strongly recommend getting help from an MDA ALS or ALSA Clinic in selecting and getting through the paperwork to get a wheelchair. They know what an ALS patient will need and how to write the evaluation and get the paperwork correct for approval. The right chair can easily last more than five years. (Replacement can be needed simply because parts are no longer available for your chair, and this seems to be happening earlier these days as manufacturers come out with new models faster. and drop older ones.)

With ALS, there is rarely a problem in getting approval when walking first becomes difficult. And you wrote, "The ones we have found that look promising are all $2500 or $3000 or more." I hope you meant to type "$25,000 or $30,000" or you are in for mega sticker shock!
 
If you want a trail chair, I'd buy that separately. Used ones, in good shape, can be found for less than $3,000. I was shocked at the resale price of those I looked at on e-Bay and local ads.

I would start the process on your home and primary chair and keep searching for something used and inexpensive to tear up the trails.
 
Thanks.. we were considering something like this for a portable/foldable electric chair that, while not necessarily trail ready, can handle going over grass and gravel. We do a lot of activities like zoos, botanic gardens, our child's baseball games etc that require traversing grass and dirt. I thought $2500 was a lot but sounds like everyone's suggesting that's considered cheap?

Does anyone have recommendations for something more hardcore all terrain that we could check out??
 
We are talking about two different things here. You are talking about a portable folding power chair that, short-term, can help you get out and about. You don't want insurance to reimburse that (not that they would anyway).

FYI, you may want to consider a manual chair instead. True, it would entail someone pushing you instead of your driving, but it's easier to fold and stuff in the back of a vehicle, and so you might get out more in the end. And you don't have to worry about range -- the power portables have small batteries, and someone pushing you in a manual gets a lot more traction than the folding power chairs, over uneven trails and slopes.

You want your once-in-5y reimbursed power chair to be a "rehab chair," [Group 3 chair] that most people want to buy new and customized for them, for which "retail" is >$40k. That is the chair that you likely end up living in when you are not in bed, because it can support you, provide pressure relief, etc. in a way that at a certain point, the $3k chair cannot, because, for example, it does not have the same extent of cushioning, tilt, recline, elevating foot rests, nor the ability to mount lateral supports, thoracic supports, adjustable head support, etc. And that is the power chair that can handle the trail (check the specs as mentioned earlier).
 
I have done some pretty extreme trail riding with my Frontier V6 All Terrain. Now that I'm ventilator dependant and depend upon an attendant to control the wheelchair I have swapped the 6 inch wide off road tires to 3 inch wide regular tires. The two 75 amp hour batteries have never failed to be out all I could handle.

A tip about wheelchair vans, I brought a restored insurance write off from a specialty auto body shop. Paid $25K for a Braun side ramp 7 year old Toyota Sienna with 70K miles. This was 4 years ago and the van runs perfect and looks like a $75K vehicle. :)
 
I have an EZ lite with 12" wheels that I bought a year ago. It does what it is supposed to do, portable, good on hard surfaces, grass, dirt. Just about any wheelchair, power or manual will not do good on loose gravel or sand unless it has oversized tires or 4WD. Thinking of selling it since we have the 450 lb Quantum and my wife's favorite, the Whill model C.

The model C works better for my wife than the EZ lite, but then it just went on sale this year and cost $4k. She uses the Trilogy 24/7 and with the Whill, it sits under the seat rather than hanging off the back. So, it's more manuverable, compact and stylish than just about any other option.

We also have a manual wheelchair. But unlike others here, I recommend against that as an activity chair. We use it for just functional tasks, like going to the doctor. For things like church, shopping mall, etc. the Whill gives my wife the freedom to go where she wants to go and not be dependent on someone pushing her (and having to point where she wants to go).

Do a searh for all terrain or 4WD wheelchair, there are a number of suppliers. Most are pretty expensive brand new, but that will give you a better idea of what is available and what to look for. I had saved a bunch of links but deleted them recently. Even one in the UK where a guy converts used units for a couple of $k.
 
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So it sounds like most people have multiple chairs-- the one insurance pays for being the one they are in most of their day with all the bells and whistles, and if you want a trail ready chair that'd be a separate chair (not your every day one), and if you want an easy portable one for casual trips that'd be yet another separate chair. Am I getting that right??
 
Kristina, I think you are right on that last question.

I’ve been wondering the same and am interested in these discussions. I can still walk, but I’m slow and unsteady and use a rollator when I go out with my dog. At my last clinic visit (May), the PT felt I was still too functional to initiate the order for a pwc, but that they’d likely be ordering one following my August clinic visit. I realize it can sometimes take a few months to get the actual chair.

Someone donated a folding Luggie scooter to me. Unfortunately, it requires constant use of both hands which makes it unsuitable for me or anyone else with hand issues. It also feels a little tippy and I can not use it while walking my dog, which is how I was hoping to use it. So I’m going to donate it back.

The EZ lite looks appealing, but I’m afraid it might also be too light and that my dog could inadvertently pull me over in it.

So I’m thinking hang in there with the rollator until I get my custom pwc, or possibly borrow a pwc from the ALS loaner closet, or ? I would also like the capability to ride on dirt trails at some point as I was also an avid hiker.
 
Here is the link for the guy in the UK. OFF ROAD POWER WHEELCHAIRS

Also check out Viking All Terrain PWC, cost $9k and weighs over 400 lbs, but serious off road PWC. I'm sure there are many others. I would check ebay.

The other advantage of multiple PWCs is not having to bring the dirty outside PWC into the house.
 
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