I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on April 22, 2008, 04:47:09 PM
-
Jenna worked last summer, 2 afternoons a week for about 9 weeks. So now we got the notice that her payments will be docked $80 a month for 5 months (beginning in July.) My husband asked "Where is there any incentive to get off SSI after getting the transplant? If you work you're docked, so you can't get ahead and you can't get any work experience." We knew this would happen, and thankfully she can still live with us. But if she was on her own she would have a tough time with getting by (as I know many of you are struggling with.)
-
I think the system is insane. Every time you turn around it gets more complicated. What to do?
-
SSI has some different rules.
Among them is a rule that if on SSI, getting a check or not, one can get free medicaid if its needed to work.
Also there is a program Social Security has called ticket to work, which will pay most if not all costs for schooling. As long as she is in school they usually continue on with SSI payments.
-
Medicaid varys from state to state. Here in Kentucky, it is based on household income. If a son or daughter lives with their parent(s), they consider total income for the household.
-
I managed to get an interview for a really good job, but my social worker told me flat out that I shouldn't work. He said it would jeopardize my benefits. UGH. So I just go to college full time (mostly online classes though) instead. :/ The system is so messed up.
-
I didn't become disabled until I was much older so my disability check is pretty good. I manage to find other ways to supplement my income. Not working isn't all that bad.
-
I get very good long term disability benefits.
It would not be enough if I were single, though.
My doctor says I could work about 12 hours per week in limited settings.
I cannot find a job that pays enough to offset what I would lose in disability benefits should I take a job.
I'm 48 years old and can hardly stand this catch-22 situation. So I volunteer and find hobbies.
Maybe Jenna just needs to consider volunteer work for now, until any paying job she might take makes SSI offsets worthwhile.
As for a resume, volunteer jobs can look very good and will instill the work ethic you are aiming for.
I admire her for attempting something knowing the offsets issue. She is so young, there must be something there for her without
having the catch-22 situation I find myself in.
-
Since her transplant she's no longer considered disabled, and her Medicare ends in 20 months. So not working is not an option. The problem is she's not had much education (and is feeling inadequate in that area after failing classes while on dialysis) so I am not sure what she will choose to do. I will check into the ticket to work program.
-
Okarol, no words of wisdom but from one mother to another, I know you are worried and stressed for Jenna's future. Love you both :grouphug;
-
Since her transplant she's no longer considered disabled, and her Medicare ends in 20 months. So not working is not an option. The problem is she's not had much education (and is feeling inadequate in that area after failing classes while on dialysis) so I am not sure what she will choose to do. I will check into the ticket to work program.
I would try contacting your local Vocational Rehabilitation office and see what they can do to help her find a job. I'm sorry that Jenna had trouble keeping up in school while on dialysis. I know what that feels like. :/ I dropped out of college after my first transplant because I kept getting sick and missing school. I'm back in school now taking online classes, which have so far allowed me to keep up with the work even when I am ill. Perhaps Jenna could take some online courses? :grouphug;