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where do I start? Ready to apply for disability


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sandy3 Find out more about sandy3
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  • where do I start? Ready to apply for disability


  • #2
    RE: Disability


    I'll try to speak from my very limited experience. First of all, www.ssa.gov/disability is a good place to start.

    As far as your individual case goes, its hard to say. Generally, disability is denied if you're able to work at all, regardless of the type of work you're currently doing. So if you work on an assembly line on your feet all day, but you could feasibly do some sort of an office job then they would probably deny your claim. I don't know your individual case so its hard to say. Also I remember the process going something like this -

    1: You have to have stopped working, you won't be considered disabled if you're still working.
    2: You have to have used all your available sick leave
    3: For Disability Insurance Benefits, the benefits cannot begin until five months have passed after the person becomes disabled. Also, benefits cannot be paid more than one year prior to the date of the claim.
    4: Only about 40% of disablilty claims are approved on the first try. The appeals process can be quite long, but worth it if your case is good.
    5: You should generally try do do it on your own at first, especially if you feel your case is good. You can always bring in a lawyer for your appeals if you're denied.

    Don't be discouraged. If you need disability, then you should try to get it regardless of the red tape the government will try to put you through. Good Luck!



    • #3
      Hi Sandy. Welcome to the HCMA. I'm sure you have a lot of questions. You might want to call Lisa Salberg, 973-983-7429, and speak with her. She's got a wealth of info on ablations, myectomies, and disability. Best of luck!


      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.


      • #4
        I would suggest first dealing with the obstruction - seeing a specialist, getting your treatment maximized - THEN see how you feel and plan your future.
        Call if you have any questions.

        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)


        • #5
          I do not think the process varies from state to state as it is Federal Disability. Beverly has given you very key points.

          If you get denied 3 times you are able to appeal with a lawyer as I did. The lawyer needs to be a disability approved lawyer and is not allowed to take more then a percentage of payment agreed upon by the federal government or if he refuses, he is not allowed to file your case. This is to prevent unsavory types from taking advantage of citizens. The lawyer does not get paid once he agrees to take on your case unless he wins the disability case. This is understood from the beginning. His money is taken from the settlement and then you recieve your allotment. If you have children under 18 they also recieve benefits, usually one half of what you get. The government is very strict and require you to keep accurate records as to how the money is spent to care for the child. In the end when the child turns 18 , if money has been saved in an account for the child they will take that money back and you must turn it over. I have always found their process to be very intimidating and very stressfull. This is however needed to help prevent fraud.

          Do what you must do and prepare yourself with the facts. If you decide to go forward, it can be a roller coaster ride and not too comforting when you already do not feel well medically.

          Have as much help and support as you can . Your doctors need to be the first line of support and I suggest you also call your congressman if you get denied and tell them your story. They will help guide you in the process of what you need to have your medical experts say for accurate support. Documentation is very important. Sometimes the congressman will file a petition of interest with the courts . This does not influence the judges decision if you go to court and have a hearing, just offers that the congressman is sympathetic and aware of your plight. Also it gives you the sense from an objective party that you are not losing your mind and not asking for something you do not need.

          If you do end up in court , the federal government will have an expert witness there. ( not necassarily an HCM specialist , but a cardiologist .) You will be informed in advance so that the court can be sure that you have no knowledge of his experience. ( he is impartial) This doctor will have reviewed your case thoroughly and probably be much more knowledgeable then the doctors on the disability board who may have denied you .If a hearing takes place he will ask you questions.

          Many times the case is reversed at the very first meeting if the expert doctor has done a thorough job and the judge may declare no hearing necessary .

          I was relieved but also quite upset that my case went this far , no hearing was done and it was terminated. I was given full disabilty retroactive to the date of diagnosis. The judge actually asked why the case made it to the court and the courts time was wasted and that my case according to the governments witness, met all criteria for permanent disability. The governments expert witness shrugged and said I do not know your honor because the case is clear to me.

          It was extremely emotional for me as the stress was uncalled for and to boot the lawyer still got paid because he had prepared the case for a hearing. Then the expert cardiologist asked to speak off the record to me. The judge allowed it. You can not imagine what he said. He asked me if I was aware of how serious my case was and when I said yes, he said , do you also know that you could die ? I gestured to my defibrilator and barely got the words out. He said die even with your defibrilator? I nodded yes.

          Well you can imagine. The tears would not stop , my lawyer gulped , shook my hand and walked me out to my family. My legs were like jello.

          I tell you this to not scare you but to prepare you. This is why the documentation is so important . Get your records and review what is written . The doctors can make addendums to some of the stuff they sometimes write that may not be as clear as it should be. I do not believe if done correctly from the beginning that all this extra stress is needed and the denials would be awarded benefits instead.

          Even though all that happened to me , I expect to get a letter any day from medicare stating that they will do a full review of my records, they have already given me a heads up notification.

          This may all be info for you to store for future use or not. It is real important to consider seeing a specialist and determine if your problem can be corrected to allow you to resume a quality of life that would let you function more normally for you.

          Have you been able to call Lisa Salberg yet?

          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


          • #6
            I have been collecting Disability for 1 year now, so I'd like to comment.
            I agree, that you must FIRST, attempt to alleviate your symptoms, via a Myectomy or Ablation. That needs to be your first concern.
            I agree, you should not discuss this with your employer. You do not mention your age, this does impact on the decision to grant disability, in regards to ability to do any type of work.
            My experience was a pleasant one. I had my Myectomy in July, 2003 & returned to work 10 weeks later (complications). In January, 2004 my Cardio said it was time for me to stop working & to apply for diasability. I made an appointment with Soc Sec, completed the paperwork & went to the appt. The Soc Sec agent told me she had never seen paperwork completed & documented so well (keep this in mind). After my paperwork was submitted, another Soc Sec Agent called with a couple of questions. Paperwork was sent to my Docs for completion & within 5 weks I received a written determination , in the mail, approving me for Full Disability(with review in 7 years). So the 3rd Weds of every month the check is deposited in my account.
            I was 56 when I applied, the 5 month waiver period, was counted back to the time of my Myectomy-so I received $$ immediately.
            So mine was a good story (except I was not emotionally ready to retire).!
            I highly doubt you could receive any $$, until you make the efort to get relief of your symptoms. Who knows-a Myectomy could provide you with an almost symptom free life!
            If you decide to go that route, there are lots of us here who can give you support & advice, based on our experiences.
            BE Well


            • #7

              I'm sorry that you are not doing so well right now, but you have come to the right place for information and support. It's a tough decision you are facing and and it looks like you have received some good advice here. Please give Lisa a call at your earliest opportunity and discuss the issue with her. There are treatment options available to you that should be explored and could get you feeling better much sooner than you think.

              I have obstruction like you, and at this time last year i felt like i was at death's door. My gradient was very high... over 144mmHg even at rest, and a good bit higher than that under stress. I was in congestive heart failure, I could barely get out of bed at times much less go to work or school, and in general felt like life as i knew it was pretty much over. I was referred to Cleveland by my local cardio, had a myectomy in June, and couldn't be happier with how things have turned out. Although a myectomy isn't a cure-all, it has produced wonderful results in the majority of folks on this board who have had one.

              As someone who has been in your shoes quite recently, please let me assure you that you can feel much better than you do right now. Hang around here with us for a while, and you'll find lots of folks willing to help you reach that goal.

              "Some days you're the dog... some days you're the hydrant."


              • #8
                Hi Sandy 3,
                I have to agree with all that’s been said here, but I would like to add a few words. Disability is a very poor substitute for wages. Disability is a great help for those who can not work at all, but does not offer the lifestyle available through the income received from a job. Your first step should be to try all that is available to get you into the shape needed to continue working – whether that be the adjustment of drugs or physical intervention to afford you a better life.

                Once all these other avenues have been tried, and you find you still can not work, I would advise you to research the current federal law regarding the qualifications required for full, permanent disability (Probably available on the internet.) (You might be surprised with what the requirements are.)

                Next, you have to get your specialist/cardiologist write a letter stating that you are completely disabled, and under what statutes this is true. Have the letter included in your file (The records will be requested by the examiners) and get a copy for your own records. Then, with a copy of your letter and records apply for the benefits.

                My wife fought her case for five years before we won before a disability law judge. We had hired a lawyer at $100 an hour and even though he padded the bill it came to a total of eight hundred dollars – we got five years of benefits for my wife and two years for my son. The lawyer said it was the lowest fee and the highest award he ever got. (I guess he later tried it with the wrong person, because the last I heard of him he was disbarred.)