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starente15

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Oct 27, 2014
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809
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Lost a loved one
Diagnosis
10/2017
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US
State
NJ
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Northern
Hi everyone,

I am desperately trying to stay ahead of things despite the obstacles (my parents). With my father falling twice on Sunday I am worried about the lead t:?ime to get a wheelchair. I understand from going to a support group that the process to get the 'ultimate' custom chair that will accommodate all future needs can be lengthy (up to 3 months).

I know my father will resist the idea. He just picked up the cane for the first time yesterday. My mother won't know what to do or where to begin. Does anyone know the steps to take, especially as they involve Medicare. I'm not sure how I'll navigate that as my mom will most likely need to speak with them but I'll deal with that when I get there.

TIA!
 
You need to go through the clinic as you need an order from the doc to get it paid for. Or is there a doc on the palliative care team? Medicare is still paying for his medical care? I know once you are on hospice hospice essentially replaces medicare and everything is paid for by them. Not sure about palliative care?You are right there is a considerable wait for power chair and medicare only pays for one chair every 5 years so you want them to pay for that one. You could look into loaner from ALSA chapter or MDA in the mean time. Or some of us buy a push wheelchair or used scooter in the meantime
 
>Does anyone know the steps to take,

you might start by contacting your local mda and alsa offices and see what they have in the loaner closet.

>With my father falling twice on Sunday

this is BAD.

the rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
-----

no joke -- falling is serious for any PALS -- ask around

also conserving energy by using a chair is more important than it sounds.



Max - Tuesday, January 06, 2015 8:51:36 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
Thank you both!
 
Get him into the next available ALS Clinic day by calling his local MDA office. Time frame is shortened if the paperwork is prepared by a therapist very familiar with Medicare AND ALS, as are the clinic therapists. The wording has to be right and complete or it will be rejected. The paperwork part takes a couple of months and if a claim is rejected and resubmitted, you start from scratch. Six months isn't unusual. The chair is not ordered until the claim is approved so assembly doesn't start until then. Another factor is the brand of chair. Most take weeks to a month to assemble your chair. More to deliver it. Permobile turns them out and delivers them usually in a week.

Much more here: Wheelchairs
 
Star, at thenext clinic visit, they could help you out. mom will not have to talk to Medicare or call any most likely. the clinic usually works with a durable goods supplier, and they will handle everything. all she and your dad have to do is request it, and do what ever the supplier asks. easy to order--
 
Whatever the clinic's preference, in many areas, you still have a choice of DME. The one our clinic referred us to would have ordered the wrong wheelchair, full stop. DMEs often recommend what they're getting the biggest incentive on that quarter. From what I have heard, I agree with Diane that Permobil tends to deliver faster. But the DME still has to come out [preferably to the home, not clinic, esp. if the home has unique features] and do the final fitting as it were. Sometimes tweaks need to be made a couple of times more in the first few weeks. Thus, proximity can be a consideration and it's preferable to be in the part of town/the county that it's not hard for the DME staff to get to [e.g. "Yeah, we usually get out here once a month" would be a bad sign], unless it is not a problem for you to go to them.

Some clinics are much more involved than others in specifying brands and models, so don't presume one way or the other who is more involved (the DME rep or OT/PT at clinic) until you know. Then negotiate with that person. At our clinic, the PT simply signed the order that was prepared in full by the DME rep. Your dad needs to be accurately measured and the chair specifier needs to know something of the house/yard/setting involved. So it's best to do the measurements at home and be able to point to aspects of the home -- driveway, thresholds, narrower doorways, acreage, old bathroom, garage, whatever, that the wheelchair will need to deal with. If you are going to use transit, you need to take note of the width/weight restrictions for bus and train ramps. If you live in a city and will be wheeling there, the chair must accommodate curb cuts.

You want the DME who's going to be efficient and accurate in submitting the claim and providing service, not the one who takes the clinic staff to lunch most often, so make a list of local DMEs in network before you talk to clinic. Unfortunately, there has been a lot of consolidation, so choices are more limited than they used to be, but you should know what they are if any.

To make sure there are no errors or omissions, you should review the spreadsheet listing all the attributes of the chair before the DME submits it. Some DMEs, for example, will omit the seat elevator because they think the payor will deny it and they're worried about collecting the out of pocket for that. There's more on reimbursement in other threads.

Make sure the order looks forward. If you are going to need additional joystick/switch control options down the road and/or attendant control, order these _now_ with appropriate justification. If your [dad's] head is already slumping or tilting, make sure something other than a minimal horseshoe head rest is ordered. Lateral and thigh supports should be considered even if the pt doesn't need them yet. A good necessity letter points up the progressive nature of the disease, as well as unpredictable time frames, and points out that "the patient has begun to..." ASL, I think it is, does a lifetime progression drive control package for ALS, though I have not used them.

When on hospice, DME like wheelchairs is handled by hospice so long as it is part of the hospice plan of care. I would think it wise to take delivery of the wheelchair before electing hospice, if possible, since hospice is capitated care and complex rehab equipment orders usually not a part of it. Palliative care that is not yet hospice, everything goes through your current network just as it does now, and hospice, if needed at all, is toward the end of life anyway.
 
So much information! I really appreciate all the insight as this is overwhelming. Now if anyone knows how to get someone to be receptive to the idea so that the process can begin, that's a whole other question. My mother sees someone who walks and drives and can't picture a day where that isn't happening so the feeling is there's no need for this.
 
It must be so hard to have both of them in such denial :(
 
Star, getting past denial may be the toughest part of the entire process. I can only try to imagine how much more difficult it is when both the PALS and primary caregiver are both in denial. The only answer I've ever come up with is to make it about me (or you) instead of them. If you expressed how stressed out you are and how much peace of mind it would give you if they would put some things in place in advance so that there are fewer unexpected crises in your future, might that help? Or perhaps ask your dad if he wants to risk having your mom push him around in a wheelchair. In our house, there's a WORLD of difference between scooting around in a very cool chair and being pushed by the wife :) In your mom's case, if she is refusing to accept what the future holds, maybe you can get her to a support group meeting where other CALS can help open her eyes if she won't read here.

Feel free to share some of our stories with them. My husband resisted ordering the chair. He took a fall that ended up requiring back surgery and just couldn't accept that his recovery would be affected by the fact that he has ALS. He should have stood up the evening after surgery--when they sent us home three days later he still couldn't stand, let alone walk, and the PWC was not in place. Had my son not been here I could not have brought him home. Thankfully the ALSA stepped in wth a loaner chair, but it wasn't sized for him and so was not nearly as comfortable as the one that arrived shortly after.
 
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