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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic contains 15 replies, has 6 voices, and was last updated by  DeAnn R 1 month, 2 weeks ago.

    • Author
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    • #20342
       Lupa F 
      Participant

      Hi everyone,

      I’m going this afternoon for a wheelchair seating evaluation to start the process of getting a wheelchair–my first one, I’ve always used a scooter until now–again. I say again because I did an evaluation last year around this time too. But because of all kinds of weird paperwork stuff, my insurance denied me twice. They never even looked at the medical necessity. They made up some rules (I have medicare, not medicaid) that aren’t actual medicare rules, but when we tried to appeal, they kept making up other excuses why they couldn’t consider it. They even lost some paperwork I sent them and said I never sent it in, but when I proved I did, the person said they found it, but then that person magically disappeared and there was no record that they found it in their computers. So now I’m starting all over.

      I know one mistake I made last year was assuming everything was going normally. I knew the process was going to take a while, so I never checked up on things until it was too late. For some reason, the wheelchair provider (DME supplier) didn’t do anything for 3 months after my evaluation and I’ve never been told why. I did my eval in July and nothing was submitted to insurance until late October. So I know at least now to keep on their case to move things along and not just assume they’re doing stuff.

      Is there anything else that I should look out for? I never even got to fighting about the medical necessity part of it, is there anything there I need to be aware of?

      Thanks!

    • #20343
       Lupa F 
      Participant

      I guess I should clarify about my Medicare experience. I have a Medicare Advantage plan, so we’re dealing with a regular insurance company, not Medicare directly, that’s where the problems are happening.

    • #20344
       Kevin Schaefer 
      Keymaster

      The last time I got a new chair, my insurance denied me multiple times. I ended up getting my neurologist on board to help fight our case. It was a pain, but unfortunately insurance companies have gotten worse about approving chairs. I would recommend seeking help from your medical team, especially if you have a specialist or a primary doctor you see regularly.

    • #20345
       DeAnn R 
      Keymaster

      Fortunately I have a great team, so haven’t had much issue…yet. I’ll be starting the process sometime next year so we’ll see. I’d like a few more features, so that can be a pain to get approval. Do you see a physical therapist or occupational therapist? They’re evaluation can go a long way in advocating for medical necessity along with your pcp and/or neurologist as Kevin mentioned. If you can come up with safety reasons for features you need that helps too. Like you said verify every step. If necessary take notes of who and when you talk to people. Don’t be afraid to be a squeaky wheel (although a polite squeaky wheel.) Maybe ask to be notified when it’s been submitted so you at least know it’s gotten that far.

      Good luck! What chair are you going for?

    • #20352
       Lupa F 
      Participant

      Thanks.

      I’m trying to get a permobil M3. I’ve been using regular mobility scooters from Pride up until now (I’ve used like 4 different types), but now that I haven’t walked at all in years the scooter seat has been causing me some problems with more contractures in my knees and some pressure soreness on my butt. I’m always sitting in the same position in the scooter so I can’t really adjust myself much to alleviate those issues which supposedly the wheelchair can help with. So I think I have at least a decent medical reason to switch. My new doctor I saw last year yelled at me for still using a scooter :).

      I’ve got good doctors and therapists that I think can help, but I haven’t gotten to the part where medical necessity has even been considered. I’ve been blocked by paperwork and made up rules.

    • #20353
       Ryan Berhar 
      Member

      My current chair, which I’ve had about two years, was denied a few times. It actually scared me pretty good, as my old chair was breaking down. It did get covered eventually, so my advice to people is to start the process early. That way all the insurance bs should be over with by the time you actually need a new chair. In terms of what you should do now, I don’t really have advice unfortunately. It seems to be just a painfully slow process these days.

    • #20357
       Halsey Blocher 
      Participant

      You should definitely get as many letters of medical necessity as you can. Definitely get one from a physical therapist if you have one. Like DeAnn said, site safety as often as you can in the letters. Both your safety and that of your caregivers. For example, mine has an elevation feature. Part of  the letter said that this feature was needed so that my caregivers didn’t injure their backs when bending down to transfer me. Also include things like how the chair will show progression of the disease/improve your health. (Prevent pressure sores/contracture etc.) One other thing you can include is details about how the chair allows you freedom and independence both inside and out of the house. If you work or take classes talk about that as well as social activities, doctors appointments, and anything else you leave the house for. Aside from closely monitoring the whole process, these letters are probably your best bet for getting it approved.

    • #20376
       Lupa F 
      Participant

      What were the reasons you all were getting denied? I can’t believe there would be actual medical reasons they’d be denying you.

      And I don’t know how many of you are old enough to remember the commercials for “The Scooter Store”? They’re the ones that caused these things to be so hard to get. They scammed millions of dollars by getting scooters and wheelchairs for anybody that called them.

      Here’s a good article about it: https://www.washingtonpost.com/sf/national/2014/08/16/a-medicare-scam-that-just-kept-rolling/

      • #20382
         Kevin Schaefer 
        Keymaster

        Sadly, insurance companies don’t need much of a reason to deny you once they see the price tag of a new chair. Often, they’ll pay for new parts, but you have to fight to get a new chair. It’s very irritating.

        I’ve never used a scooter, but thanks for sharing this article.

      • #20389
         Ryan Berhar 
        Member

        They said it was a “duplicate”. They’ve said this about other medical equipment as well. Basically, as long as a piece of equipment still exists, regardless of its condition, they don’t want to pay for it.

      • #20390
         Halsey Blocher 
        Participant

        I was originally denied for my current chair because it is motorized (like most people with SMA have). They claimed that because I don’t attend school and didn’t have a job at the time, I didn’t need a power chair. They would pay for a non motorized one that I would need to be pushed everywhere in. They didn’t take into consideration my extensive volunteer work, social activities, or need/right to independent mobility. We appealed the denial and it was approved as soon as they realized we were going to put up a fight. Insurance companies often count on people just giving up when they get a denial.

    • #20400
       Mike B 
      Participant

      Typically Medicare requires a Face to Face evaluation with your doctor to substantiate the need for a power chair as well as an evaluation from a PT/OT that the doctor needs to sign off on also. The F2F evaluation can be quite extensive and doctors grow frustrated by the paperwork, as in the past they used to be able to write a simple letter of medical necessity and it would suffice. Medicare now has a Prior Authorization program where your DME provider can submit all the paperwork beforehand and make sure everything is approved before the chair is ordered. I would recommend going to a DME provider experienced with Complex Rehab Power Chairs and the “newer” Prior Authorization process.

    • #20812
       Lupa F 
      Participant

      Update to my attempts to get a chair: So I did all the evaluations, got all the paperwork signed by my doctors, everything seemed set. The wheelchair rep said she just needed a copy of my home eval (checking door widths and everything, my place is fine) and we were set to submit to insurance. I told the rep we did that eval the other day and she just needed to get it from the person at her company. Should take all of 15 minutes. Today I get a call from the company asking to set up a home eval and I’m like “what…?” and tell them they already did it a month ago. I guess the guy that did it never submitted the form. So 3 weeks after I thought we were done, they’ve still never sent anything to my insurance and it’s just been sitting there. I asked why they never said anything to me: “Well I emailed the other person…” Sigh.

      I knew better than to assume they were doing everything, but I wanted to hope. I guess it’s my fault for not checking every single day till it got done.

      • This reply was modified 1 month, 2 weeks ago by  Lupa F.
      • This reply was modified 1 month, 2 weeks ago by  Lupa F.
      • #20830
         DeAnn R 
        Keymaster

        Having to babysit companies is the worst.

        • #20833
           Lupa F 
          Participant

          Well supposedly it got fixed today and it’s off to insurance now, so we’ll see how that goes. But that was a two and a half week delay for no good reason.

          • This reply was modified 1 month, 2 weeks ago by  Lupa F.
        • #20840
           DeAnn R 
          Keymaster

          Fingers crossed for you! Your post spurred me to check the status of a shower chair/commode I’ve been waiting on. Come to find out they’re waiting for the doctor to sign off on the letter of medical necessity! Apparently they’ve faxed 3 times and have called with no response. First of all the communication with my clinic is terrible as I’ve had issues between them and the pharmacy as well. Don’t you think though they should let us know or at could at least keep us posted when they’ve hit a roadblock? I was going to wait to start the wheelchair process, but by how things are going maybe I better start soon.

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