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I'm losing my Medicare! Please help...

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    I'm losing my Medicare! Please help...

    My accident was 9 years ago and I am a C6/7 incomplete quad with only use of my left arm that allows me to drive a power chair. The spasticity worsens yearly but i still can get around. Now the problem:
    I applied for and received medicare and SSI (disability). I was a surgeon but obviously that occupation is gone so i pursue a consultating job. I consult with hospitals about case management and with an insurance company about medical issues of policy claims. Although I did not and will not ever make the amount of income I had before, I did make more than the maximum that was allowed for disability. At that time, I was receiveing yearly forms where i declared my income from the year previous and always checked the box below that stated,"if you received mre than maximum allowable you minght not be elligible for benefits." I expected to have my benefits yanked immediately, but they weren't. In 2004 I still was uneasy because some people were telling me that my disability was so severe and I could do nothing of my former job that that is why I could still receive benefits.Others were telling me I shouldn't be receiving them. I went straight to the source, and called the government on the phone and spoke to a nice gentleman who coincidentally had gone to the same undergrad college that i went to (Davidson College) I poured out the narrative above and he said "don't worry, you are not inelligible under your circumstances" and this lessoned my anxiety. Four months ago I received a letter stating my benefits were in jeopardy and to send tax returns since 2000 and not to expect benefits to expected to possibly have to pay "overage". I called and asked, "do you mean pay back was i was told i was legitimately receiving all these years?" she said "yes". I got a lawyer, filled out there forms and sent them in. This week they sent a note that said my diability payments have ceased and they are discontinuing my MEDICARE the end of July. They didn't ask me to pay back anything, but I feel like with that attitude its only a matter of time. As all of you know i am totally uninsurable and I would go broke without medicare. I still have 3 of my five girls under my "financial umbrella" and I can see nothing but disaster ahead. I may be in the wrong forum but i know more people read this and might can give me help. I tried so hard to play within the rules but evidentally that means nothing. Please give me any experienced advise you may have.


    You need to go to an SS office. You can appeal their decision.
    It's a crime this happens too often.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.


      It does not hurt to have one of your federal politicians reviewing and overseeing your case. It is well worth the effort of contacting their office. They cannot reverse a legitimate decision by SS, but they can help insure that you are getting fair and appropriate treatment.
      You will find a guide to preserving shoulder function @

      See my personal webpage @


        Unfortunately to receive SSDI (and Medicare) you must have a condition which prevents you from making more than $x. I don’t know what dollar value ‘x’ has today but if you exceed it, by the government’s logic you are no longer disabled.

        Unless you can offset your income with work or health related expenses you will not qualify for SSDI.

        The bad news is when you are drawing a future government benefit they will garnish it and keep any tax refunds to recoup the overpayment.


          David, did you document the call you made in which you were told you were eligible -- date of the call, name and title of the person you spoke with, etc.? Whenever you speak with someone about benefits, it's so important to keep a record. I always ask the person I spoke with to confirm what they told me in writing. (I know this advice is late for you, but it might help someone else reading this.) I'm not sure one phone conversation about eligibility is going to make the SSA change their decision, but it's a start.

          My best advice for right now is to second the advice from Liz and SCIfor55 years. Get to a SSA office right away, and explore every option they offer that allow pw/ds to retain benefits while working (Ticket to Work program, Medicare buy in, Medicaid buy in, etc.) If possible, I'd take your lawyer with you. And document EVERYTHING you're told. Not sure if these programs can be applied retroactively, but it could help you going forward.

          Contact your Congress Member and US Senators about this. If you don't know who they are or need contact info, go to and enter your zip code in the box provided.

          The timing of this notice that you're going to lose Medicare coverage may not be random. I discovered this when I was looking for info that might help you.

          Extended Medicare Coverage for Pw/Ds Who Work

          It may be that the SSA believes you've received the 8 1/2 years of extended Medicare coverage allowed while working. That would explain why they haven't (yet) asked for repayment of any benefits you received.

          Best of luck to you.
          It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

          ~Julius Caesar


            You should contact your congressman. That is the only way I have been able to resolve some of my previous issues.

            You should keep your Medicare even if you work enough to stop your eligibility for benefits:


            Continuation of Medicare Coverage (SSDI eligible)

            What is Continuation of Medicare Coverage? Most individuals with disabilities who work will continue to receive at least 93 consecutive months of Hospital (Part A); Supplemental Medical Insurance (Part B), if enrolled; and Prescription Drug coverage (Part D), if enrolled, after the 9-month Trial Work Period. You do not pay a premium for Part A. Although cash benefits may cease due to work, you have the assurance of continued health insurance. When does this start? The 93 months start the month after the last month of your TWP. How do you qualify? You must already have Medicare and be working at SGA, but not be medically improved.

            Sometimes they send out the wrong letters. Go to your local office and talk to someone in person if that is possible.

            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown


              Originally posted by Cris View Post
              I don’t know what dollar value ‘x’ has today but if you exceed it, by the government’s logic you are no longer disabled.

              This is not true.


              I am still disabled but not eligible for benefits because of income from work. I have a letter from SSA that states that I am still disabled. They send you the letter when you have to go see a doctor for review.

              The amount is $980 a month.
              T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

              My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown


                I used to be a benefits specialist it is true if you have successfully went back to work after 9 years you lose your medicare. I had to quit work to get a reinstatment from Social Security just to get my medicare. Go talk to social security in person but you may have to have no earned income to get back on Social Security disability.


                  David Please Fill Out Your Profile & Sorry About Your Accident

                  I went to check your profile & there wasn't anything listed. Please fill out if you can.

                  I was very sorry to read about your accident & that you were a surgeon & no longer able to do your job. I wish I cold wave a magic wand over you to make you better. Also sorry to hear that your spasticity is getting worse. That's wonderful that you can still use one of your hands to operate your chair. Remember "GOD FORBID" that your no longer able to use your hand to operate your chair you can go to either a sip n puff system,
                  chin control or operate w/head array built in to your head rest. I don't know if you know the above mentioned exist.

                  Are you by chance a fellow Veteran if you are thank you for having served & for your sacrifice.
                  I hope you don't lose your medicare. Go back to the lawyer & tell him/her what is going on & hopefully you will be helped before it's to late.
                  Please keep us posted here on what transpires.

                  Take Care David !

                  CC Member