Wow! So much advice and support - thank you all. My son is already on the Florida med-waiver wait list. The social worker we talked to told me the school system tested him and his IQ is quite low and they have him listed as mentally retarded.
A local lawyer spoke at our school and said she will set up the guardianship for $1,500. Does that sound fair?
yes. Not knowing what the 'going rate' in your area is, but we paid somewhere around there 5 years ago in Minnesota.
About charging him rent? Is there an amount I should name?
You can use part of his SSI (when he gets it) for housing. What is a reasonable amount would depend on local conditions - usual rent in that area, etc. A reasonable amount might be taking your expense for housing and allowing a portion of that for his 'rent'. You may be able to find some resources on line.
In Florida, the kids can stay in school until they are 22 so I'm not too worried about medical care just yet.
That is the same all over the US. You do have to make sure that it is written into his IEP and don't accept a diploma. My DD went thru the actual graduation ceremony with her peers, but did not get a diploma and did not graduate at that point. That was all written into her IEP.
Also, you should be able to continue insuring your child indefinately if the child is disabled. It's easier to just fill out the stuff that says they are a full time student until they are 22, but you can usually continue to have them on your insurance after 22 by getting a doctor to document the disability for you. Find out from your insurance what 'hoops' you need to jump thru.
The hospital and school has told me I must have these documents to show when he turns 18 if I want to continue to have input and make decisions.
Interestingly, DH and I always carry a certified copy of DD's guardianship papers, but have never been asked to show them. We are prepared though!
I was wondering if I should apply online or not, so thanks for letting me know.
I think that is a personal decision and that there is no one best way.
I know people who have applied on line and thought that was the best. I know people who applied in person and thought that was the best.
We applied in person. One of the reasons was that if we applied on line, we still needed to send in the documentation and proof (doctor's letters, etc) and they required you send in the originals of birth certificate, Social Security Card. I don't know if that has changed, but I did not trust that everything would come back.
I also liked the idea of being able to 'present' my documentation and answer questions as they came up rather than send everything out and then wait to see if they understood everything or needed clarifiaction. I had prepared my documents as 'evidence' of the things that were in the questions and had them arranged in the order that they would be needed. The person who did the interview was very nice and said she had never had an application that was so organized. She did tell me that applications seldom have all the documentation needed and that is why a lot of denials occur. Many people are denied the first time or even the second time (which is why one poster wrote not to get an attorney involved until after a 2nd denial). DD was approved after that first interview.
The other hint I would give for applying for SSI is to look at each question as if what you answered was all you knew about your child. People often are so familiar with their child that they forget that they know a lot more than someone just reading the answer would. You want documents to back up what you are saying/writing. You don't need mounds of stuff; look at every piece you are providing to see how pertinent it is to answer the question. More stuff just means more for the reviewer to go thru and if they have to look at a large amount of information to get to the one piece they need, they may miss it.
Also, look at the question and look at your answer. What does the question seem to want? Does the answer get to the point of the question? Sometimes we parents get to a point where we just 'unload' information, but if it doesn't answer the question, it's just more for the person to read and they may miss the important points.
Here are some resources for you from the PACER Center. It is based in Minnesota, but is a reference point for the whole US.
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for luck!
