Power wheelchair Process

[Tomswife]

Kessler foundation dot org

We have been working with the Kessler Foundation, Outpatient Wheelchair Clinic, here in New Jersey to get Tom his PWC.
I am very impressed with their knowledge, compassion and professionalism. The clinic will also help us with the application for financial aid from Team Gleason. Insurance will only cover very basic functions. All else is out of pocket. Try to find a clinic that understands the ALS world and will help with the Team Gleason application.
I attached a pdf from Kessler on this topic.

 

[Diane H]

Self horn blowing comments follow. My website gives a lot more details of the process and is specific to ALS patients. I think PALS and CALS will find it more helpful. Getting the right wheelchair for a person with ALS

 

[lgelb]

Diane's site is always worth a look. The only wheelchair comment I would make is that in the pandemic, some of the face-to-face requirements have been relaxed. Also, it helps to realize that by and large, the physician order is a rubber stamp of some combination of what the ATP, OT and/or PT (sometimes the same person; some therapists have ATP creds) comes up with.

Some of us got seat elevation covered by commercial plans, and I believe anterior tilt is covered by some plans if the prescriber pitches it as ADL safety. Slow progression would help the case for anterior tilt as well.

Any legitimate DME should get basic power tilt and recline, and power footplates covered on the first pass, along with a decent headrest, rehab [usually Roho] seat cushion, and accessories such as lateral/leg/thoracic supports if/as needed. And a hip belt! All they have to do is code the wheelchair correctly and complete the rest of the order form.

When I worked in the mobility industry, often some ATPs were/are getting things covered that others were not even trying for. It is not just the DME. Branch quality varies very widely. Look at all the DMEs in your network. And if a good ATP moves, do all in your power to move with them.

Often the DME discourages you from trying because they don't want any delays (their compensation that month depends on the claim's being adjudicated). Not everyone can get everything from Team Gleason, so I wouldn't count on them as a sole strategy. If you have a Medicare Advantage or a commercial plan, you can ask to be assigned a case manager and talk with that person up front.

 

[Tomswife]

Diane. Do you want me to delete my post? Yours is not subtle.

 

[Tomswife]

I am so very sorry. I did search prior to posting and i did not see anything specific to the process. I found the Kessler doc helpful even though it was not ALS specific.
Things are moving very fast and I often need to grab information quickly because I am his caregiver.
We can ask the moderator to delete my attachment if it is misleading.
The provider we are working with, Kessler, knows what Aetna will and will not pay for, and as we went through each function or gadget they told me what would probably be denied. Kessler has a close relationship with Team Gleason. Perhaps there are other non profits out there that help with the cost of needed but not basic functions.
My PALS was diagnosed in mid August. The clinic did not even suggest a PWC, I did. Then It took 4 weeks for the clinic to submit the PWC order to Kessler. Then we waited a few weeks for the Kessler appointment. We are glad the process is moving forward. Very grateful for Kessler. We have been trying to get a loaner for 2 months. Waiting.

 

[Mary2]

We got PAL's wheelchair during the pandemic. We never saw a PT or OT just the National Seating and Mobility rep. He comes to the house. We never went out anywhere. He also has a technician that is good. They come when we call to adjust the head rest, replace the belt we broke ect. The chair seems very fancy to us....I can't imagine what we are missing. Right now they have a tray on order because PALS has just a little finger mobility and they might be able to arrange for him to be able to tilt himself back. I doubt this will last long but PALs would love to be able to tilt himself back.

 

[KimT]

I got some freebies on my PWC. My neuro dx me with ALS and fibromyalgia so I got some seat and padding upgrades. Also the seller tried to push one brand so I called another and they threw in the elevator function and also sent over a rep to try different models and different seats. I paid zero. Medicare and my Medicare supplement paid the rest. I had just fallen and sprained my ankle so I looked worse than I was. I had another PWC that was gifted to me. When my new one came in I was walking again. I only use it if I’m going long distance. I’m eligible for another one since it’s been five years.

I suspect I’ll need a new battery when I start using it more.

It never hurts to ask for things, especially if you have a doctor willing to go to bat for you.

 

[Tomswife]

Kim. You did fairly well $ wise. But it is of course heart breaking that you need a PWC. We dont have a dr that will go to bat for us. Its a big deal just to get a response on the portal.