SSI After a Transplant

[pagandialysis]

I had my transplant back in December and it just now hit me that I know that Medicare ends three years after I have a transplant but when does SSI? I've been to afraid to call them. Does anyone know anything about this? Also I am 100% positive that I have Social Security Income and not Disability.

[Simon Dog]

SSI stands for "suplemental security income", not "social security income" (the later would describe age related social security payments).  SSI is for disabled people and is a need based income redistribution program.   In general, SSI ends when you are no longer disabled - so I would not count on having it continue through the three years of post transplant medicare as you are considered "undisabled" once you recover from the transplant.

[jeannea]

The initials and names are a mess. If you were working regularly before your transplant, your SS disability income is usually considered sufficient and you will not qualify for SSI, the supplemental income. SSI is usually given to those who have never worked and haven't paid into the system or if the years they paid into the system their pay was so low they get almost nothing now. I believe for SSI you also must have minimal to no assets. Every one of gets SSD after they apply. That's your disability money. Only some get SSI. I do not.

I was contacted 2 years after my transplant for a disability review because I did not get a job. Personally, I'm a mess and don't expect to ever work again. I don't know when my next review will be but I need to work on making it permanent. I have multiple conditions.

If you go back to work, you must report it to Social Security. You may make up to $900/month I think and still get your regular check. If you make more than that, after a certain number of months they put your check on hold and eventually say you're not disabled and don't get a check. I do not know the details on this.

[Rerun]

I've been told it is 12 months after a successful transplant.

       

[noahvale]

^

[iolaire]

I had my transplant back in December and it just now hit me that I know that Medicare ends three years after I have a transplant but when does SSI?

As part of the transplant consolations we were required to talk to a financial coordinator, are you not receiving financial follow-up from that same coordinator? 

I guess I assumed it would be part of the follow-up after the transplant since at that time the center needs to work with us to make sure we can continue to afford the transplant...

Thanks @noahvale that's very clear:

Social Security disability begins its 12-month countdown. At one year post-transplant, the patient returns to work part-time, earning up to $500/month. Patient increases work hours over next two years so that at 36 months post-transplant when Medicare disability ends, he/she is working full-time and thus receives full benefits from employer.

[jeannea]

My transplant group has a financial coordinator. She has not contacted me since my transplant. I think I called her once. I have not met her in person.

[Simon Dog]

My transplant group has a financial coordinator. She has not contacted me since my transplant.

Probably means they got paid.

[Deanne]

The only contact I had with a financial person was before my transplant when they were making sure I had insurance and planned to go back to work right afterward.

[pagandialysis]

No, I did not have a financial adviser at all.

I'm working very hard right now to find a job as my S.S.I. will end in December.

[kristina]

Hello Pagan,
Please don't start work before you are not really well enough.
I have recently met a transplantee at the doctor's waiting-room and he warned me
that he lost his transplanted kidney because he felt immediately very good after the transplant
and so he started to work much too early because he completely overestimated his own state of health at the time. 
Going to work was much too early for him, because his body was still going through the healing process after the transplant ....
Please take care!
Best wishes from Kristina.