General — TransplantLyfe



KevRTransplant Patient
Updated June 4, 2024 in General

If someone is applying for SSDI, what we’ll be your advice to do? My PCP is about to retire and I have some fear about my health deteriorating because of the Transplant n other health issues. Do you think my transplant team would aid me I asked for some help. Presently I am still working. Hope all is well with you all.

1 - 16 of 16 Replies

  • AliEm14Expert
    Transplant Patient

    @Ldybug97 do you have any insight on this?

    I'm in Canada so my situation is different. I'm not on permanent disability but I do qualify for the disability tax credit under the federal government

    June 4, 2024
  • MelsammTransplant Patient

    Hi KevR, yes your TP team should help, you should have a social worker, coordinator, financial planner to advise you. When I went on disability I applied on line and heard back within 2 weeks. TP patients get approved quickly. You cannot work to get on disability in the states.

    June 4, 2024
  • Ldybug97Transplant Patient

    @KevR I will keep you in my prayers . I was on dialysis when I applied for SSDI. I went back in my old emails and I found the company that filled out all the paperwork for me. It was free. It was six years ago it is called. They did everything for me and did it all over the phone. I took a leave from work a month before I applied. I was still employed but put in my retirement papers a month after ai started my leave I had longterm disability through my employer. I don’t know if that will change anything for you.. The Social Worker from the team is always a resource.

    June 4, 2024
  • KevRTransplant Patient

    Thank you all so much for helping me with this. This group means more and more to me.

    June 5, 2024
  • MelsammTransplant Patient

    I am glad we r here for you my friend. Hang in there. It’s a lot after TP.

    June 5, 2024
  • DebTransplant Patient

    I began my disability journey before my transplant. I tried to work as long as I could but with appointments weekly and declining health I was told I had no choice but to turn in my notice. I filed with the help of my gastroenterologist here and at my transplant center and was approved within 3 months and received back pay as well. It is a lot of paperwork but it’s worth it. I wish you the best of luck.

    June 5, 2024
  • KevRTransplant Patient

    Thank you so much @Deb .

    June 5, 2024
  • JeanmarieTransplant Patient

    Your transplant team will help you. Usually, the surgeon has no idea about all that but there should be a financial coordinator at your transplant center. I would touch base with them and talk to the transplant center's social worker. Be completely honest with them and they should be able to help you coordinate all that. I know my other specialty doctors like my Nephrologist also have social workers that are available.

    June 5, 2024
  • KevRTransplant Patient

    Thank you @Jeanmarie. I am saving this forum discussion and using it as a resource for all this important information if I ever I need to us it.

    June 7, 2024
  • TheMacTransplant Patient

    KevR- I agree with Jeanmarie, your hospital should have social workers to guide you. I have a ton of experience to share. Send me a direct message and I’d be happy to share what I learned. I am still on SDDI, I still can’t work due to brain damage from encephalopathy. I am not great on a computer and only have limited windows of being able to type. Much better on the phone if that is “legal” on the forum. Otherwise, I’ll do my best to type you what I have learned.

    June 21, 2024
  • KevRTransplant Patient

    Thank you so much @TheMac.

    having logged on in a while.

    i will follow up. Thanks again.


    June 26, 2024
  • Jdboogy53Transplant Patient

    Ok, I'm going to copy and paste the disaility post I give to the liver transplant groups twice a year.

    Updated for 2024

    You all qualify to file for transplant disability the moment you are transplanted. For one year, lungs get three years.

    Please take time to look up the SSA Blue Book of Disability Evaluation. There will be a code for each type of transplant.

    This is considered a long term disability. This is Federal - filed by state offices. It’s called SSDI not SSI.

    Because it is a long term disability, it takes the federal government 5 months to determine you are such so you will not receive payment till the 6 month past DETERMINATION date not FILING date so yes it can be backdated.

    Now regarding what you receive if you qualify, this is what is called your reward letter. That is determined by the government however the maximum an individual can received in 2024 is $3,822 a month.

    - this is based on FICA taxes (Federal Insurance Contributions Act). If you haven’t paid into them than you need to look into low income disability SSI.

    - you earn FICA credits as you work and file FICA taxes. You can earn up to 4 credits a year. The more you have accrued over the years, the higher your reward.

    In general you need 40 credits, 20 of them received in the last 10 years ending with the year you became disabled. However younger workers (24 and under) can qualify with less credits.

    The amount for a credit is 2024 is now $1,730

    - if you really want to understand how your final reward is collected, start here

    - if you are retired and already receiving SSA this is your SSDI - it’s the same thing

    - additionally there is a Back to Work Program (also Google) that can still try to qualify and receive SSDI benefits

    - VERY IMPORTANT in 2024 you can earn up to $1,550 now with taxes a month (not after taxes are taken out) above your SSDI payment and still receive your SSDI payment.

    Additionally if you look through the SSA blue book of Digestive Conditions found online just type that, under codes 5.00 to liver transplant you can see if you qualify for prior conditions that put you out of work or limited work. All can be backdated. A backdated payment will be processed separately than your regular monthly payment.

    Also kidney conditions are found under 6.00. Just Google for the other organs.

    Note that 70% of applications are denied on the first try. Usually lack of documentation from both individual, hospital and SSA. Make sure you are proactive and ask ALL hospitals of treatment, medical records departments for a release form for SSA (it’s just a general release of any medical record and you write SSA - this will help later with redetermination too!)

    File again right away you get 3 tries. But the 3rd attempt you will go before a judge and a lawyer is needed. Because oftentimes the judge won’t hear the case unless you have a lawyer. But by the 3rd attempt 90% of individuals qualify.

    NOW NOTE with a lawyer

    Disability lawyers are allowed to collect by law up $7,200 for their service or 25% of back pay, whichever is less.

    Hope this helps! I can’t speak on individual cases this is just the base of information.

    So now speaking on your case. You won't qualify if you file and are making over the amount I posted above $1,550 a month. However if you are making under or choose to go part time than you can earn your full disability check if you medically qualify of course (they will look at if you are truly limited in the kind of work you can do because of your medical condition) and hopefully you can all the tax credits. The real point in applying is to make yourself look at pathetic as you possibly can. You will have a case manager and a SSDI doctor will call and review your medically records with you. Please, please, please call all hospitals and care services and sign the paperwork to release all records to SSA. Oftentimes people are denied because SSA will NOT chase down your records, it's your job to prove yourself to the Federal government.

    Also anyone who is listed for an organ transplant that isnt kidney or pancreas, known as a life saving transplant to SSDI (this is their opinon) is called a terminal illness case or a TERI case and gets immediate processing in less than 30 days.

    Currently announced by SSA in April 2024 due to a shortage of Federal workers new SSDI cases are a back log of 8 months processing. Please keep that in mind.

    Hope all this helps

    June 27, 2024
  • MelsammTransplant Patient

    Jdboogy, u hit

    it on the nail. Your surgeon,social worker should be able to help get the ball rolling. My TP was during Covid so I was able to get it taken care of via phone/emails. I was approved within 2weeks but I had not been able to work either due to my end stage liver failure. So that probably helped not sure but 6 months later I received my first check. I did speak w/a lawyer and he told me 99% TP patients get approved. I also heard that disability office is back logged. I wish you the best with all this. I to hope your doing well.

    June 27, 2024
  • AliEm14Expert
    Transplant Patient

    @Jdboogy53 thats why we love you! Coming in hot with all the information! thanks for sharing - this is super helpful for those who are looking for info and want a breakdown of the process

    June 27, 2024
  • KevRTransplant Patient

    Thanks so much @Jdboogy53.

    this type of info is really helpful.

    July 7, 2024
  • Jdboogy53Transplant Patient

    Thanks! @KevR

    July 13, 2024
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