Power Chair Frustration

[old dog]

At my most recent ALS Clinic appointment, my neuro and PT recommended a power chair. I explained that I would prefer a scooter that would break down to be transported in the trunk of a small car and learned that scooters are not covered by insurance--a convenience rather than medically necessary. I agreed to let a wheelchair rep come to my home, measure me, and demonstrate a power chair. Much to my dismay, she was unable to tell me what one cost. I explained that if a person is going to be obligated for 20% of the cost, he/she needs to know what that amount will be. I learned that one must order the chair before it is possible to quote the cost. Has anyone had this experience?

I've looked through past threads on wheelchairs and didn't find an answer. Maybe I missed something.

In the meantime I've done some research and have concluded that I would like to have a chair with the full stand-up option, as inability to stand is my greatest limitation--not because I can't get up or because my legs won't support me--but because I have to hang onto something with one hand or lean against something to keep from falling over. My PT tells me that he has never known of insurance to pay for the standing feature. The only company that I have been able to find that is open about pricing lists this option at $11,000+. Comments or suggestions, anyone?

Common sense tells me to buy a used chair and reserve the option of getting a custom-fit chair when and if I need to be in one full time.

 

[Jim Mulligan]

I'd recommend just buying what you want out-of-pocket on ebay. That's what I did, and I am very happy with my electric wheelchair. The cost of new wheelchairs are crazy expensive because they know some kind of insurer is usually picking up part of the tab. The other advantage of just buying one on ebay is you don't need anyone elses approval, permission, or red tape.

Jim

 

[dalvin]

The problem with buying used is that their not fitted to you, height, leg length, etc. but if your happy, ok.
Old Dog, call the dealership, after they've done all their calculations and contacted the insurance company for approval, they can tell you what your share of the cost will be before they actually place the order. If your doctor will write up an explanation for the need for the stand up option they might pay for it. The rep that comes to your house most likely would not have access to pricing info. He simply gets the info and turns it in to somebody at the dealership who then does all the calculations.

 

[sadiemae]

Medicare won't even cover the elevator feature on chairs, which is an absolute necessity for PALS. A Permobile 300, which most PALS get, run upwards of $30,000.Without the the elavator feature, which costs a couple thousand extra out of pocket.

 

[old dog]

Thanks for the replies. The person who came to my house handled Permobil. It was a very nice unit, but didn't suit my present needs. I can't guarantee I will never progress from PLS to ALS but wouldn't use such a fancy chair enough to justify the cost at the present time. I have no way to transport a big chair so wouldn't be able to use it away from home anyway.

I will keep exploring other options.

 

[Barbie]

We originally bought a scooter on line--maybe $300 . was a great little helper for a couple of years. then my husband bought a redman on ebay because he also wanted the standing feature. he paid about $4000 had really enjoyed it for about 4 years. yes, it was not custom sized, but it was not too bad. The redman has a great standing feature, but I think there are a lot of draw backs to the chair overall and would not get another. he just got a permobil and loves it. no standing but the elevator is very useful and he can not stand anymore anyway. very well made.


If you can still walk a bit but need safety and assistance a scooter is a great idea for many reasons

 

[lgelb]

Old dog, when that day comes, if you use an in-network DME firm or your plan doesn't discriminate, your cost will be whatever copay your plan entails for DME, which likely will take you up to your annual maximum out of pocket if you aren't there already. As others have said, "retail" for something like the M300 is around 40K.

If your letter documents seat elevation enables an ADL like toileting, much better chance for coverage. Standing feature coverage is more problematic.

 

[billbell52]

I don't know your specific situation so I will explain mine and see what applies. I am an MDA patient. I go to the MDA/ALS clinic in Dallas. I have Bulbar PLS (starts with speech). It took about 5 years to progress to my legs. At year 6 I had a hard time walking far in my walker so I got a loaner GOGO travel scooter from MDA. My right leg got real weak and I was dragging it using a walker. I was very unstable walking. I got a loaner Permobil C300 (front wheel drive) from MDA. I am 6'1" and 180# and the Permobil was a little small so after a year I decided to get my own. I ordered a Permobil M300 (mid wheel drive). It is easier to maneuver around in my house. At the time private insurance was my primary and Medicare was my secondary. I got the elevate feature. It would have been about $4000 out of pocket with Medicare only but my private insurance covered the elevate feature so it was around $1900. So I use both the scooter and PWC. The Permobil is comfortable and I can be in it all day. I tilt back and elevate feet to read, watch TV and nap. I use the scooter to. I find certain transfers from scooter easier (toilet, recliner and bed). I currently don't have wheelchair van so most times I use a scooter when I have to go somewhere. There is DART Paratransit which is service that provides door to door service for handicap people in PWCs. They have handicap buses and vans they use ($3 per trip). You have to schedule this service ahead of time and allow for extra time for drop off and pickup. I also rent a handicap van from time to time for different events. I plan to buy a handicap van next year.

I looked at buying a used chair but didn't see the point. It was going to be about the same price and it wouldn't be customized to my size. Medicare allows you to get a new PWC every 5 years so there are lots of used ones out there. Also, most ALS patients use Permobil so you see a lot of those. You usually need new batteries and that can run over $700. Please note MDA paid for some new batteries for my scooter.

I can't free stand either. I have to hold on to something. I do standing exercises using a rail in my house. I usually do 15 minutes twice a day. I just don't see a lot of use for a standing PWC. I can do most tasks I need to do either sitting down or standing up holding on with one hand.

Hope this helps!

 

[AKmom]

3 years ago, i bought my first pwc. Even though I had a prescription to get one, I did not use the insurance to pay for it because I wanted a chair I could travel with and my insurance said they would not pay for one like that. I bought a $1200 Jimmie by shop rider. It has worked great for what I needed. Now I am needing something bigger and i can use around here for all of my time that is more comfortable. I am glad to see all the great advice here. Not sure if I will order online or have one customized for me. For now, I can stand and walk short distances with assistance, but not anywhere out of the house. Not sure how much more traveling I can do. We are looking into buying a accessible van. I will be test driving one after the 6th of Oct. Maybe I will start driving for vacations.

 

[Drewsmom]

Does everyone here agree that the elevate function is a "must"? We told the permobil vendor today that we did not want to pay out of pocket for that option. Are we gong to regret that decision?

 

[dalvin]

I manage without it but there are times when it would come in handy. For an especially tall person it would be a must as otherwise his legs would never be comfortable

 

[old dog]

Thanks again, everyone, for very valuable advice and insight. I'm going to delay my decision on what kind of chair to get for a little while, as I have been spending way too much time on chair research and need to devote some time to other things. The advice received on this forum answers most of my questions--you are the best!

 

[Bad Balance]

If you go with Permobil, prenegotiate the price for the lift feature and pay It.
When the final invoice was presented, they wanted retail fortis component. Unfortunately for them, I had already paid one half this price in advance"

 

[JimInVA]

Our chair is a Quantum 6 Edge. When talking with the mobility company that would provide this, we discussed the POWER LIFT option. We were informed that it was an additional $1,000+ dollars and that insurance would not pay for it. The thought was that it would allow my PALS to rise to the level of our counter tops and stove top for cutting and cooking... and to even be able to use the microwave which was above the stove. We asked that it be included... even knowing we would have to pay for it out of pocket.

When the chair arrived, there was no balance due... insurance HAD picked up the tab for the entire chair, including the power lift. Unfortunately, by the time the chair arrived, Darcey no longer had the strength in her arms to do anything at the counter or stove... and certainly could not reach the microwave. The lift portion did have one appreciated use. When we were having our bathroom remodeled, shampoos happened in the kitchen sink. She'd rise all the way up in the chair, lean back and then I'd pull the chair up to the sink. It was just the right height to lay her neck on the edge and extend her head over the sink...

Jim

 

[billbell52]

I found the elevate function very useful.

1. Use it at functions when people are standing and talking. I feel part of the conversation.
2. Use it for some transfers. I have a high bed. I could never do a lateral transfer if I didn't have it.
3. Eating at countertops. I have one in my house and have used it restaurants.
4. I have used it to maneuver in tight spaces. I sometimes need to put the footrests back to fit in a tight space. When the footrests are back they get in the way of the wheels when turning. I elevate to make the footrests clear the wheels.