Wheelchair delays-aargh!

[SueG]

Back in Nov my clinic suggested I start the power chair process. They helped find the local providers and we piced the closest one that had good ALS experience. Found we had to be evaluated at local wc clinic, by this time it was late nov, they said they'd call when they had opening. After a month we started bugging them and finally got appt on Jan 16. But the OT hadn't coordinated w the provider we picked, so we only had half the team. No worries, they said, they'd send the eval to provider right away and chair specs/order would follow. Another month went by, Roy calling weekly. Finally the provider had what she needed and Feb 23 we met w her and did chair specs. Thought we'd have in a few weeks. Those passed. Meanwhile my hands are tanking.
Finally at a completely separate communication consult back in Boston Mar 16, the OT asked about the chair on order and pointed out that the joystick ordered would no longer work, and she was right. She was great and contacted everyone here right away, so we had a new prescription from our clinic last week and a new eval at the wc clinic today. THIS time we got the OT, the provider, and the Invacare guy who knew everything .
Chair will be better in several respects. But by the time the paperwork goes to Medicare for Advance Determination it will be early April, and the Medicare process takes 30-60 days! Then we'll see what they approved!
I am so frustrated at not having a chair until June! Don't they understand ALS pts need quick action?

Sue

 

[momap53]

I'm so sorry you're having such a tuff time with getting your chair. Our ALS Clinic had a local PWC vendor on hand on clinic days which made the process so much easier. He worked with the PT to get the specs down and made sure that the chair being ordered would accommodate any adjustments that might be needed as I progressed. I had expected a longer wait but meanwhile had a couple of falls with the walker and someone (my CT Coordinator) got things rolling and I had it in 30 days.
I sure hope everything goes through for you this time.

 

[notgivnup]

Sue, I feel for you, I am so sorry, I know your frustration with all the red tape, paper worK, etc. My first attempt was denied, yes denied after 4 months wait now I have appeal in, who knows how long or if I will get one. Hang in there. Hoping all goes well this time for you.

 

[Toto's Dorothy]

Sue, I think we may have the same chair ordered. Did you have a choice of colors, 1 being grasshopper green (lime) or strawberry bubblegum (fuschia). Are you going to be using the head array or the sip and puff.

If it takes as long as you say it does, I might not bother. I'm private insurance.

Sorry sue, that's all I can say.

 

[SueG]

Toto, I went with head array controls. Your private insurance might be fine- we have private coinsurance from my hubs work, and their approval (original order) was immediate. Good luck to all of us in the pipeline!

 

[notme]

I don't understand why the docs don't write the orders before they are needed. It's just wrong that you're waiting and Di is waiting.

 

[Toto's Dorothy]

Mine is the head array also they are actually using 4 different manufacturers to make my chair I hate to see the cost and I've already had 2 hospital stays so the $2500.00 has been met so I guess mine is free we had to go through 3 doctors before we could get 1 to sign it I chose the fuschia what color did you choose

 

[HelenL]

Good luck Sue on getting that chair soon! Does the ALSA have a loaner closet for you in the meantime? Or do you use a scooter? I'm going to talk to the clinic on Friday about getting minie in the works, as I know there's a delay, and my butt's tired of sitting in the scooter all day long.

 

[LabMom]

I'm sorry you are having such a hard time. I feel so blessed. I received a power wheel chair with all the features I will need on mine from the loaner closet. I didn't even have to ask, the social worker made arrangements for me at our first visit. My first appointment with the ALS clinic isn't for another month and I expect we will start working on my permanent chair at that time. In the mean time I have what I need.