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karla r

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South Carolina
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roebuck
Hi, all. Need some advice, if anyone has some to share. Had the power chair evaluation yesterday. She said I qualified. However, she said she knew she could get back recline. She also said she did not want to ask for leg elevation, but a fixed foot, because of the space. I told her I wanted it anyway, and she said it would be better for me just to transfer to a recliner to put my legs up. I insisted, and she said we would see. She also said she was not sure if she could get tilt, or improved back support. But she said if I got worse, they could order a new one. I said I thought it was once every 5 years, and she said they say that, but they would pay for it anyway. She also said perhaps I should just wait for my ALS clinic appointment, and let them order it, but she went ahead and filled it out and said the chair rep would call me. Will they either pay for another chair or upgrade mine? Or would I be better off refusing this one and wait for the clinic appointment to get them to order it properly?
 
Or option c deal with another provider. Recline without leg elevation sounds very uncomfortable and transfer into a recliner every time impractical. Not sure about the able to get another chair but if it could happen guarantee it would take a fight. How long until clinic?
 
Still waiting on a call about the appointments.
 
Medicare will not pay for the chair elevation any more that's out of pocket
 
Absolutely wait for an ALS clinic appointment and eval! This person is apparently unfamiliar with ALS and probably not a Certified Seating Specialist. Transferring to a recliner to put your feet up is going to get more and more difficult and impractical. (Not to mention that elevating your feet in a recliner puts the weight of your legs on your calves which compresses the veins and defeats the purpose of elevating the feet. In a wheelchair, the legs are elevated without weight on the calves.) Not only do you require power leg rests, you require what are called "articulating" leg rests. These lengthen the leg rest as they lift. Without them the leg rests are not long enough when you recline. The lack of articulating leg rests makes the chair worthless for effective, fully reclined, feet as close to the level of the heart as possible, periods of reclining to reduce swelling. Tilt and recline are both required for an ALS patient. The driving electronics must be adaptable down the line to use something other than a joystick. A standard seat must be replaced with a ROHO air cushion. Armrest and footrest height must be adjustable. There must be an easy, compact way to mount a BiPAP when the time comes. Arm rests must be gel foam for comfort when you can no longer move your arms. All that is just off the top of my head! If she doesn't know that power leg lifts are a basic must have, I can't believe she is qualified to order a chair for an ALS patient.
 
According to the ALS chapter here, she wasn't. They called me back this morning, and have arranged for a loaner to be delivery first of next week. The man called back like 5 minutes later to get info from me (weight, height, ect). And they both said there is no rush to get it back, refuse the order for this one, wait for a clinic eval to make sure it will have everything I need. And, they told me the doc in Greenville actually runs a clinic for ALS, and they got their training at the ALS clinic in Charlotte. She said for me to ask my doc for a referral there, since neither of my insurances will be a problem there. Yeah!
 
Oh, the one in Greenville does it all, the breathing evals, pt and OT, pc, with a rep there, all of it, just like the clinic in Charlotte.
 
I am really glad to see you moving toward getting the right chair.

I would not be without the leg elevate capability, or the tilt, or the recline. They are essential for me, and I suspect for others as well.

As you already know, your original evaluator did not know what they were doing!

By the way, insurance paid for all of those along with a standing feature and lights for me. I suspect having insurance pay for those last two items is unusual.

Steve
 
Karla what a nightmare! It so makes me mad that there seems to be so many hurdles for what are necessary items! I'm glad the ALS society are involved now, hopefully all good from here on in.


Steve. ..don't ever ever ever EVER query the insurance company. I think they are all the same. Very willing to say Sorry, that's not covered! You've had an awesome win.
Connor just had his pushbike stolen. Because it wasn't nicked from our locked shed at home, we weren't covered. ..mmmm...

God bless, Janelle x
 
>Connor just had his pushbike stolen

:-(

here is where they go ....


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