Need to find an advocate

Well, my son officially has schizoaffective disorder and is spiraling quite quickly. Going to try going up on his atypical antipsychotic and see if that helps. Also he's been approved for SSDI, first time through, without his regular psychiatrist's report even. how often does THAT happen? :rolleyes: So next step is to fill out paperwork for a state grant that will hopefully help with resources like community based help, and if necessary a therapeutic treatment facility.

In the mean time, he just graduated junior high. Barely but I think they passed him partly to not have to deal with him anymore. The high school is one big chaotic mess. 5 buildings. 2000 students. They once again want to try him in some regular classes. BAD idea. They also want to put him in welding. HELL NO! OMG his therapist about went thought the roof at that. Give that kid fire? *sigh*. He is honestly to the point that he NEEDS a 1-1 aide at all times. NO regular classes without that. no homework. Special Education bus to and from. and absolutely NEVER unsupervised. I can't even leave him alone in his room when he wakes up in the morning without him destroying something.

Problem is that this school district doesn't see him as this much of an issue. They see that he's disrespectful, insubordinate, lazy, troublesome. They've also laid off almost ALL paras. He also has a habit of making everyone (particularly adults, teachers, etc.) despise having to be around him. Pretty sure high school teachers will be even less tolerant than JR high teachers. And a para having to deal with him all day every day...I give it a month before the para gets antagonistic with him because he's just that much of a pain to deal with.

Unfortunately there is no alternative school here. Homeschooling isn't an option either. So I need someone to go to an IEP meeting with me that the school will listen to. Unfortunately it has to be someone free at this point. I never realized sped advocates charged. heh.

Ideas anyone? I'm in west central IL.


Well-Known Member
Hi Loony. I am an IL resident like you. I found the following link to NAMI for a workshop on IEP's.
Here's another link I found:

Local churches or civic/charitable groups may not do advocacy themselves, but someone that belongs may know someone who is willing to help.

Good luck. If you have a problem, contact your local school board. They are required by law to offer your child the services he needs and to spend the money to employ someone who can help provide them.


Well-Known Member
Sorry for your predicament.
I'm in the UK so haven't got a clue, but I hope you get some support and find a way to make your son's high school years bearable and even successful. I'm sure there must be appropriate organisations that can help you and your family and surely the school must have appropriate measures in place to support your son. You son can't be unique in having these issues. In this country it is often better to be 'pushy' and demanding in order to get whatever services and help is legally available, rather than being passive and assuming that things will be arranged properly without you demanding anything, which might not happen as everything these days is driven by how much money it costs :( .
Good luck with everything, let us know how things develop.
Well, I've been doing the IEP routine since my 19 yr old was 5 so I pretty much know the drill on regular supports. The last few years however this school district has been in a force mainstream routine. They flat out disagree with parents on what the kid needs, always teaming up to say what the parent wants is unnecessary. They use the least restrictive environment clause, and insist they don't need a stricter environment. Then if the kid starts failing in that area, they find different reasons to send them to the office and suspend them. Therefore the kid is labeled a problem child, and can even have criminal charges filed. The schools (particularly the high school) are of the mindset that they're almost adults, they need to start acting like it and unless they are in a wheelchair or have some real physical disability then they do NOT need an aide.

So I know already I'll have to fight tooth and nail and I have to have an advocate that will back me up or they ride roughshod over me despite my insistences. Every year they try him in a few mainstream classes and it's ALWAYS bad. But they refuse to listen.


member since 1999
Smurf - try Equip for Equality. They're in Chicago, but.... resources here are few and far between, as you well know. They might also be aware of resources in your area. An even better resource could be the IL Guardianship and Advocacy Commission down in Springfield. I really wish I could remember the name of the guy I talked to down there... it's been several years. Anyway, even though it's a state agency, they *really* are all about folks with disabilities. I've talked to them several times about various issues (including the ICG) and they've been exceptionally helpful. Not sure they specifically can help with sped issues, but on the other hand sped is about the rights of a person with a disability, so maybe. Again, if they can't help, I would expect they would know who to refer you to.

Also, the SD is required to notify you of your rights, in writing, at every IEP mtg and I *think* they are also required to give you a list of resources. Can't remember if advocacy resources are included in that, but I'm thinking yes (sorry - been a lot of years since my last IEP mtg). I'd call and ask for another copy.

I hope you have someone *very* knowledgeable helping you with the ICG app. Approvals/renewals for the grant have declined drastically in the past 6 or so years. Make sure you read the criteria very thoroughly and have boatloads of documentation to back up the app. My son had it from 2000 to 2009. Paid for 9 years of residential. He was denied renewal when he hit 18, which was about the time ICG started denying the majority of renewals along with new apps. Make sure you cross your t's and dot your i's.