disappointed...ssi

[lacyndarella]

Ug. Everyone keeps telling me to go apply for SSI...everyone...the hospital social worker, the EI case worker, Jimmie's PT, OT, ST, DT...heck, even my sister. I told them all we made too much money for medicare and that we probably made too much. They all insist it is not need based. So today I went to apply for Charlie's SSN and I asked about it. We make too much money. Hard world where that is too much money, but there you go. The Social Security Office person actually said we made too much to apply, which I don't get...anyone should be able to apply. Whatever. It would have been nice to have a little extra cash, especially since Jimmie needs the brand name drug and we have to pay for EI services etc.

[just laurie]

You have to pay for EI? We never had to pay for EI. I thought the state was supposed to cover that. I hope someone can help you find some sort of waiver or program which can help you guys. The expenses can really start to take a toll on a family's budget.

[Nick,Brian,andJon'sMom]

Unfortunately, SSI is all done on income. They are very strict on their requirments and they don't make any exceptions on the income.

There are other programs in your state that you could get a waiver for to help with your expenses. You just need to find someone who is knowledgable in this and point in the right direction of were to start.

I also don't understand why you are paying for EI. They should be provided by the state.

Marcie

[Cardinals#1]

Good luck with the waiver or any of that stuff. I've been trying for years to get help with in home support for Dustin. Now that I'm single and only have Child support coming in, I could really use some help so I can go back to school.

The state has waiver programs, but they all tell you that they do not have the funding for them. The wonderful state of IL has the lovely PUNS waiting list. Been on it for 2 years and there's others that have been on it for alot longer and are still waiting.

Gerlado Riveria was supposed to have done a special on these waiting lists that state's use.

Anyone see that video he did, about a instition in New york? Can't remember the name right off hand, but I rented it off amazon.com and it was horrible how they treated the people.

[lacyndarella]

Yeah, I've applied through U of I Chicago...We make too much money for any support. He does not qualify for Medicaid. There is no waiver we qualify for.

[Carly'sMa]

I just checked a web site and see that Illinois charges for early intervention on a sliding scale. I hope it's reasonable, but the site also says that they are supposed to bill insurance first.

SSI is income based. Carly qualifies in a few months because she will turn 18 and our income or assets won't be held against her. However, I will lose part of the health insurance benefit we get for her now. So, we'll lose about $320 in that benefit but gain the $600+ plus in SSI. But, we have always earned too much for SSI.

[lacyndarella]

Yes, it is a sliding scale, and our amount may actually go down that we have Charlie. It went down after I dropped from full time employment to part-time, but did not go down after I left my job because the difference in salary was so minimal. They do bill our insurance for services. Then EI pays. We pay a regular amount each month to the Department of Human Services. It is certainly significantly less than our Insurance and EI pay. We couldn't afford it without EI, but it's still ridiculous, nothing we can't handle so far, but in this economy...

[Cardinals#1]

Yeah, I've applied through U of I Chicago...We make too much money for any support. He does not qualify for Medicaid. There is no waiver we qualify for.

Have you contacted the Department of Disabilites. I may be wrong, but I was thinking that they do not go by income when they determine needs, especially when it's something that private insurance does not cover.

I know what your going through, we qualify for medicaid, since my divorce and we still can not get any in-home supports for Dustin.

Pretty much was told that Dustin has to be put in a facility before he can even be moved to critical on the states waiting list categories and than you still are not promised that any help will be given.

[andromeda31]

That is a bummer...the SSI people laughed when I called about it and said our income. That was when Caitlin was a baby. She did qualify for title 19, have you checked into that? In our state (WI) it is also referred to as Katie Beckett program. Not income based! We also had to pay a copay for EI...it was 50/month. Not too bad, but when we had started in it, there was no copay, after about a year in to it was when it got changed. Good luck!

Lisa O.

[sarahanne]

We make too much too - but Ethan did qualify under the Katie Beckett program - he
has his 2ndary insurance through Maine Care - what his primary insurance does't pick up - Maine Care does. We never paid a dime for EI.