What does that mean for me as a special needs parent?

United States
June 4, 2016 9:13pm CST
My son is really close to turning 22 and aging out of the school system. There have been so many things that I have been told and told wrong. So, here are a few things just in case. You need to get your child on the PUNS list. What it is: PUNS stands for Prioritization of Urgency of Need for Services It is basically a lottery where names are drawn by the State of Illinois and the child/adult with special needs receives funding. It can be used for home based services, workshops or residential placement. What it is NOT: You do NOT have to place your child in a home if your name is drawn. There are other things it pays for. Don't fall for that like I did. 2. Guardianship vs POA When you special needs child turns 18 they are their own adult. It doesn't matter that they have the mental capacity of a three year old. If they say they don't want medical attention, the doctors have to stop no matter what. Guardianship and POA can only be petitioned for after the child turns 18. What it is: EXPENSIVE! Start saving! Guardianship for what I was quoted was basically $1500 average. POA is less I am told, I can't do POA. You have to do guardianship if your child cannot comprehend the papers they are signing in order to get a POA. Please don't be like me and wait. This is a nightmare. Being Rep Payee or anything else like that gives you no say so on medical and other decisions. 3. Your child can be bused more than an hour if needed. Don't let the district or special needs coop tell you different. If all other options have been exhausted you can do it. Don't tell them they are going to send your child off because they can't meet his/her needs. They tried it on me, it didn't work. Steven went to ICA instead. You do have rights no matter what they try and make you think. 4. Become friends with as many people at the school as possible. They will do more for you if they don't see the mean side of you all the time. I know it is hard at times and there are those I was never really friendly with. Unfortunately there are some that you have to be that way with. Remember yes you know your child, but sometimes they are a different child at school than at home. I know that there were things I could never get Steven to do that he did no problem at school and vice versa. 5. RESOURCES! Get them where you can. internet other parents library magazines school and others Well, that is all I can think of now. Just so you know I am in Illinois, so some of this may not apply in your state. But you get the general idea. FYI, I am happy to talk to whoever may have questions. God bless!
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1 response
@yukimori (9042)
• United States
5 Jun 16
I definitely agree with not waiting to establish guardianship. My husband's family is looking at a nightmare where his disabled brother is concerned because his mother never bothered to establish guardianship when he turned 18. He's in his mid-20's now... it's going to be an expensive and drawn-out thing. POA isn't an option in their case, either.
1 person likes this