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Wheelchair Denied

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    Wheelchair Denied

    I've come to a point where my condition (spina bifida with recurrent tethered cord) combined with a recent diagnosis of Rheumatoid Arthritis where I am no longer able to walk for exercise or enjoy shopping trips, going to the zoo, or even waiting in long lines. I can still walk some and can usually manage the grocery store without too much pain but everything from going to church to working, to going on a date with my husband is very limited by my mobility and pain. I spent the better part of last year trying to find a doctor to prescribe a wheelchair for me. I found a great and supportive doctor, but my insurance denied my chair. My doctor called to make an appeal and the insurance company said only the patient can make the appeal. I typed a detailed letter about my loss of independence, inability to work, loss of quality of life and how many days I'm unable to walk at all. I included lab work proving my RA and a letter from my doctor but the denial was upheld.

    What do I do now? I'm only working part time and it's a client based job so some weeks I work 30 hours and some weeks I work none. It's a hard, physical job but they allow me accommodations without trouble. I can't get another job without the chair or extensive accommodations and I can no longer work in my previous career field (teaching infants and toddlers). I've tried to go through a local agency that helps people with disabilities find work, housing, etc. But even though I qualified I can never get ahold of my caseworker, so I have yet to actually receive any services. I have been searching ebay, but as this is my first chair I'm not sure on the measurements that I need and am wary of spending so much money on a chair I've never tested. I'm afraid I'll get one with broken parts that aren't replaceable. There is a local secondhand medical equipment agency here but they don't have any ultralight wheelchairs. With my arthritis (which is primarily affecting my back and knees right now) I can't lift (in/out of my car) or self propel a light or standard chair.

    Any suggestions of what else I could do? I feel so cooped up. I'm used to being outdoors and I miss exercising. I play wheelchair sports with a loaner chair (that stays at the facility between practices) and it's such an incredible feeling to be mobile without pain. I just wish I had such access everyday.

    What kind of insurance do you have? Is it through your work?

    Why was the chair denied? Did they give a reason?

    Appeal again, to the next level. Many things are rejected initially, and approved on appeals, so keep trying. Review very carefully the requirements for covering wheelchairs from your insurance company, and make sure every requirement is satisfied and argued in an appeal letter.

    if insurance is through work, call your benefits office and explain the situation. If it is employer funded insurance, they can sometimes push things through.

    Also from the way you are describing your issues, you may actually need a power chair.


      Good advice above.

      What state are you in? When you say "case worker" is that an insurance case manager (who works for the insurance company) or a state program case worker of some type (Medicaid, etc.). Have you had any contact with and an established case with your state Dept. of Vocational Rehab?

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


        From what you've described, your insurance may have interpreted the wheelchair need was for community-based activities. Read your policy and appeal based on your household, not community, needs.

        Most workplace insurance follows basic Medicare guidelines for manual wheelchairs in that:
        • Wheelchairs are considered medically necessary when used by the member for mobility in the performance of activities of daily living in his/her residence.


          My insurance at that time was through my job. I live in TX, and by caseworker I meant someone with a vocational rehab. I was denied because I can walk 50ft and that I'm able to complete self care independently. But I explained in my letter that walking 50ft can often be very painful and there are days when I can't walk at all. And are there plenty of people who can complete self care independently even while being in a chair? And what about cooking and cleaning? I don't know if those count as self care but there are many days when i can't do either of those because of my pain levels.

          There was not an option that I know of to appeal again and I have a new insurance plan (unfortunately with the same company) through my Husbands work. Right now the arthritis is primarily affecting my back and legs. As long as I tape my wrists during wheelchair soccer I'm fine. I want so badly to be independent and pain free. I want to be mobile again. I think right now a power chair would be too confining. I may need it in the future but I want to stay active for as long as possible.

          So basically if I can walk inside my home I don't qualify for a chair but what quality of life is that? I grew up in the country. I spent all my time hiking, climbing trees and building forts even into my high school years. I can't exercise, I can't go for a walk with my husband, I can't go shopping to more than one store and even at that it has to be a quick trip. Being trapped inside every day is torture for me. And since I don't have a chair I can't get a job with more hours so I can't save up for a chair. I'm sorry, but this is just so frustrating. I shouldn't be forced into being stuck at home when I am capable of so much more.


            Unfortunately, Medicare does not take 'quality of life' or community reintegration into consideration, and many private insurances follow Medicare guidelines. So you need to be able to have your provider document that you cannot get around your home, and do your self care without a wheelchair. Can you get a in-home evaluation done by a PT or OT do help document this? I am not suggesting lying, but you need to base this on what you cannot do on your worst day, and consider that your functional level. The system is not set up for variability in this.

            Call back the VR office and ask to speak to your caseworker's supervisor. Complain about not being able to reach them, and them not helping your remain in an employed situation. Ask to be switched to a different VR counselor. Keep doing this until you find one who does their job. They may be able to help you with this.

            You also need to look at options for power assist to bridge you over until a power chair becomes necessary.

            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


              +1 on above comments. Be careful not to give too much information. Don't say what you can do on your best day (walk 50 ft). Say what you can't do on your worst day (walk at all). Because that determines your needs. Knowing your policy is key. Read it and build your case based on each and every requirement, nothing more, nothing less.


                Thank you, I will look into those options. What if my home is not wheelchair accessible? We are moving into a new apartment in a few weeks and have had a nearly impossible time finding any in our price range with anything on the first floor. But most of the apartments do not have accessible units or parking lots. The place we have finally settled on has a step up from the asphalt to the sidewalk, and one step on the sidewalk on the way to the apartment. Will insurance get me for that if I have a home evaluation? I really don't have any other options. I've asked specifically for accessible apartments and the few places that have any don't have any vacancies. We are currently on the second floor so staying in our current apartment isn't an option. I don't have a pt or ot and after spending 5 years looking for a neurosurgeon in my city that treats adults with SB and finally getting an appointment, I can't get through to get help with pain management or mobility. I've called and left countless messages. His nurse practitioner and I emailed back and forth and she kept promising to send me to a pain specialist but never gave me the referral. Now it's too late. I had met my deductible and out of pocket max last year and now that we are moving and everything I'm limited to the number of appointments I can schedule.

                I will be watching and saving up for a used power assist after I get a chair to use for longer distances or hilly areas. I just don't think it's fair for people with disabilities to be confined to their homes because insurance won't help pay for their mobility equipment. I know mobility is the tip of the iceberg when it comes to insurance issues, but when we pay so much into it, it just doesn't make sense that we can't get coverage for the things we need most.

                Thank you again for your help.


                  Have you applied for SSDI?


                    You might try a search on Ebay and Craigslist. This may find you a wheelchair that you can afford for at least temporary use until you get something worked out.


                      I agree with Buzzard, I have bought chairs through EBay and Craiglist. It may take a little time but I've gotten some good deals, got a nice Quickee 2 for $150, an electric for $300. I don't know about your insurance but even if the chair is approved, you will probably have to pay 20% of the cost and you have to go through an approved medical supply company. These companies always seem to charge about twice the price as a private party purchase. I can buy a Quickee GPV myself for around $900. Last time I went through my insurance they charged over $2000.00 for a GPV so I had to pay $400+. The electric chair I bought for $300 would be $5000.00 through my insurance (if they would even approve it) so it would cost me $1000.00.


                        Mimo, your problems are based upon your attempts of being honest, and trying to retain your independence. Without out and out lying you must paint the worst possible scenario you face daily.

                        About 7 years ago I really started to fall down indoors as well as outdoors, I fell quite often. I fell in the night trying to get to the bathroom. I bought my own power chair because my shoulders killed me and I could buy a power chair USED as cheaply, if not more so, than a manual chair. I still do not WANT to access Medicare or other public sources of financing, however, I may have to tuck my pride as well as what I feel is my self respect, and seek assistance.


                          You should also understand the process of getting a chair is difficult for a reason. There are plenty of people out there with chairs that really don't need them, they are just too lazy to walk. If it was a super easy process they would be encouraging some to develop bad habits and many would get a wheelchair and and start using less of what abilities they have, worsening their conditions and health.


                            I haven't applied for ssdi because I don't think I'll qualify. I can't work in my career field or in the areas I'm educated in any longer but I'm still capable of at least part time work with the right mobility aids and accommodations. I think proving my decline into my current state is going to be difficult. It has been such a slow decline over the last 10 years. Other than the recent diagnosis of RA nothing major has changed, just a slow progression. And since I didn't have a neurosurgeon during that time I don't really have a way to prove that I'm declining, I don't think. Once my husband and I get moved into our new place, I'll look into it more. My understanding is that the income of the entire household is factored in and right now we live with his mom which would disqualify me on the income level.

                            All of the insurance and disability stuff can be so confusing. I'm not new to insurance policies or red tape but this is the first time I've had to deal with it concerning my mobility. This part of it is all new to me. How do I find out exactly what their policies are on manual wheelchairs? I know now getting it all worded correctly makes all the difference. Is there a way I can get that info in writing?

                            And yes you all are right about the 20%. Actually, my insurance pays nothing for DME until my deductible is met, so I won't be able to afford the chair even if insurance decides to cover it. My insulin pump supplies (I have type 1 diabetes) cost over $100/month and in a couple months I will have to find somewhere to purchase catheters, my insurance doesn't cover any catheters at all regardless of medical necessity. There is a local Spina Bifida Association with a lending closet, I'm hoping they will have my size.

                            I have kept tabs on ebay and on craigslist listings. I've looked all over the state of TX but haven't found anything on Craigslist that was my size/price range/etc. I'm not sure about ebay as I only know my seat size and nothing else as far as measurements and while I've studied wheelchair options and accessories for over a year, I know very little about how they actually work and would not really know if I'm looking at a chair that is worth it or just good for parts. I guess the best I can do is try to save up for one of the tilite demo chairs since they are returnable unless something else opens up. I'll keep trying. Thank you all so much for all your advice, I really appreciate it!


                              Originally posted by Mimo View Post
                              I haven't applied for ssdi because I don't think I'll qualify. I can't work in my career field or in the areas I'm educated in any longer but I'm still capable of at least part time work with the right mobility aids and accommodations....
                              That is the same mistake I made. As I left the SS office with the form, I thought to myself, well there is something I could do. But in my case I didn't want to work any longer so I just waited for SSI to kick in. But at the time SSDI paid more and of course it would covered a longer period. The clock starts when you apply, not when they approve. So when you get rejected attorneys are willing to help because they can cash in.
                              I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.