ssi

[lisa ann peterson]

i was just curious if anyone else has had a problem gettting social security for their kiddo they say that my daughter is disabled but not enough and that they based their no decision on duration they said that we have to wait for a hearing which can take a year its been a crazy battle, nobody wants to hire me because iam gone alot in the hospital with my kiddo and i cant take her to daycares so what do parents do for income... my husband works but we aquire alot of extra cost travling back and forth to spokane which is 2 hours and 45 mins away..any suggestions or thoughts?

[Svetlana Finley]

We applied last year after second relapse and everything went ok with out any problems. Anna's situation is more different, because she was on special school program i think that helped. Did they told u why is she is not qualifying for it?

[Heather Still]

We had SSI for Ryan early on in his diagnosis. The social workers at the hospital were crucial in helping us get it. Also, you need to discuss the extreme need for it with the doctors because they can word the paperwork so that it makes things sound more disabling. We stopped getting SSI because we needed the Medicaid health insurance more than the money and the SSI was putting us causing them to cancel that. Your travel expenses should be deductible on your taxes at the end of the year as a medical expense. After 6 years of us traveling an hour back and forth for pheresis/infusions, at one point daily, we are now blessed and the local hospital does Ryan's infusions. It's about 8 minutes from my house. He no longer has Medicaid and we have to fight with a regular insurance company alot more. I didn't work for the first 3 years of his diagnosis, but now I am back full time. For a bit I sold Avon to friends and family for some extra cash. It was pretty easy and if you sold enough you got 50% profit. Hang in there and things will get better. It was rough for a while but now it's not as hard and I'm lucky enough to have an understanding employer when we do end up in the hospital.

[Svetlana Finley]

In our SSI us long as Anna qualify for, she will have her medical. I didn't know that SSI can prevent kids from getting their medicals.
We get millage and meals reimbursements every month.

Heather Still said:

We had SSI for Ryan early on in his diagnosis. The social workers at the hospital were crucial in helping us get it. Also, you need to discuss the extreme need for it with the doctors because they can word the paperwork so that it makes things sound more disabling. We stopped getting SSI because we needed the Medicaid health insurance more than the money and the SSI was putting us causing them to cancel that. Your travel expenses should be deductible on your taxes at the end of the year as a medical expense. After 6 years of us traveling an hour back and forth for pheresis/infusions, at one point daily, we are now blessed and the local hospital does Ryan's infusions. It's about 8 minutes from my house. He no longer has Medicaid and we have to fight with a regular insurance company alot more. I didn't work for the first 3 years of his diagnosis, but now I am back full time. For a bit I sold Avon to friends and family for some extra cash. It was pretty easy and if you sold enough you got 50% profit. Hang in there and things will get better. It was rough for a while but now it's not as hard and I'm lucky enough to have an understanding employer when we do end up in the hospital.

[Jessica Olivia Frysz]

Lisa,
I have been confronted with SSI, my parents have been confronted with SSI. In your situation, I can see why you need it, but I was also told that I was eligible for SSI, but my mom refused it for me, because I have a job myself and I'm earning my own income, whatever income I would earn would also go towards SSI. As you said, your daughter is disabled, but not enough to get money right? That's a toughy, I can't really give any suggestions, except for the fact if you talk with your social worker through your dialysis center or transplant center whichever it maybe that you go for healthcare with your daughter. Good luck.

[Colette Ann Frysz]

Ann,

As soon as Jessica got ill we had major decisions to make regarding our lives. She spent nine months in the hospital so for that time we were in limbo. However when she came out of the hospital I began part time work. I had full time work before. So I cut my time in half. I found employment so that I could work during the time she was on dialysis. I found an adult dialysis patient to watch her during off days. So I basically worked four hours a day. With our travel and the expense of the car I felt that working part time would at least take care of those expenses. We pretty much lived on one income - my husband's. I being used to living a frugal life found all kinds of ways to provide for my family.. I worked part time for the next 10-15 years. I am now in my third year of full time employment again. However now we are still facing bigger expenses -college and transplant.

When Jessica was first diagnosed the social worker helped us to obtain medicare, medicaid and state aid for her. The state aid we had to apply for each year which required the filling out of a lot of forms. But then state aid became scarce and we did not after awhile qualify for that. Medicaid kicked in for her hospitalization. Medicare is ongoing. But we also have Jessica covered under our insurance plan while she's in school. So Medicare is her primary and the other is secondary.

For SSI it does take years. I asked about SSI and you can't have assets of more than $6000.00 . Doctors and how they word their reports are crucial but I would also involve an attorney familiar with the process. There may be a time that Jessica will have to on her own apply for SSI. I find though that a lot of the kids in her unit were looking to get SSI and not do anything else productive with their lives. So by being on SSI it does not give them any incentive to do anything.

[KaTrina Slaughter]

Hi,
We ran into to the same problems with SSI. Because my husband does pretty decent being in the military, we were denied SSI. But we still lost a whole income that no ones seems to care. So as you can imagine, I discreetly answer calls. Thought about talking to one of those lawyers on TV that say that help get SSI, but think they might be fraud than help. :) Let me know if you get anywhere with SSI, I've written it off as a lost cause.