My 18 year old son has Asperger's. We have multiple agencies helping us (him, now that he's 18), and I've tried applying for Disability for him as well, but everything seems to be falling through because of lack of effort on HIS part. Yet, each agency tells me that if HE doesn't apply/fill out paperwork/make it to appointments, etc, they can't help. My son pretty much stays in his room all day long on the computer. Forcing him out of his room for anything- job search, meals, chores, bathing, etc- is a long and sometimes verbally violent process (think 3 year old tantrum without the hitting). I can't support him financially and I can't keep holding his hand through every single thing- I have four other children to take care of, I'm job searching, and I'm just plain tired. I can see him in literally the same exact place, in the same exact position, 5-10 years from now. What can I do?
When your special needs child doesn't grow up when they're a grown up...
I'm in MA. My son actually just lost his insurance (Medicaid) because now that he's 18, everything's getting mailed to him now and he wasn't even opening his mail, just throwing it in a pile in his room, and now the places who are supposed to be helping us won't/can't help us anymore until we get his insurance cleared up. I feel like my son is falling through the cracks and my only option is to support him indefinitely (which Section 8 and Food Stamps won't let me do without penalizing me, since he's now an adult).
It seems like you need to be opening his mail and keeping on top of these appointments for him. He might be 18, but it doesn't sound like he has the capacity or maturity to be handling these things for himself yet, so perhaps you will just have to keep assisting for a while longer. I admit I don't know what sort of programs are available for young adults on the spectrum, but I would assume there are organizations that are out there to teach kids how to function in society. If not there should be, given the huge number of kids with autism that will be aging out of the system over the next few year.
I'm so sorry you're facing this, the system is really screwed up and I have no idea what you can do. It's just not fair to demand people with disabilities that prevent them from caring for themselves have to be the ones to meet these requirements. As his caregiver you should be able to fill out these forms and get him what he needs instead of having to fight with him. I'm not saying there is a way to do it, just that there should be. What do they do about people who are so severely disabled that they really can't do any of these things?
So many other people are facing similar things, and I don't know if that helps or not- but you definitely are not alone in facing this. We really need a complete overhaul because the system just is not working.
Can you get your son to sign a "power of attorney" document for you? This will allow you to do what you need to do on his behalf, like when he was a minor. It is a really simple legal document that an attorney can draw up for you.
I don't have any experience for your specific situation, but this kind of thing comes up all of the time when adult children take care of their aging parents and the parents lose the ability to take care of things themselves.
I would like to, but I can't afford an attorney.
He got his GED last March, turned 18 last June. He also suffers from Depression and because he's now 18, I'm told I can't force him to take medication for the Depression.
I have some experience in this arena, but sadly, little concrete advice. Hugs, but no good answers.
First, I would look into your state Department of Developmental Disabilities (may be called something different in your state). In my state, there are specific services available to young adults in your child's position. The programs have names like "Transition Age Youth", and some are through county mental health services, some through community college, as well as state DDD. You may find classes on "Independent Living", skills trainers, or a variety of other supports. Even supported housing and some group living situations may be worth considering.
Next, look into legal guardianship. This goes far beyond Power of Attorney, and will basically recreate the situation of a parent/child relationship. Must be court-ordered. I don't know if this would meet your needs, if your son would agree to it, if a court would order it against his will, or if it will help you at all. But please learn about this. If you have guardianship, there would be no issues with your own benefits, Section 8, etc. Promise!
Does he receive SSI (through Social Security)? If he is eligible for that, he automatically qualifies for insurance, at least in my state. Please apply. Or re-apply.
I hear in your post how exhausted you are. What support do you have for yourself?