My wife just informed me that she isn’t officially on disability just for autism…but anxiety combined with it. I didn’t know that. Bad dad.
I hear you. I was trying to keep my example somewhat light-hearted. My daughter has many of the same anxiety issues, and I think a lot of the job would go down as you describe. But she would never get hired in the first place.
I said she might stop and get a slice of pizza on her way there; she wouldn’t actually do this, because she would be terrified of going into the pizza place and going through the process of ordering and paying on her own. She would totally get distracted by ducks and computer games, though. 
I hear you, BD. I am eternally grateful that my son inherited just enough from my ex so that he doesn’t have to go camp out by the river – for sure that’s where he would end up. It tears me up that there doesn’t seem to be any place in society for him.
I think there may be a genetic component to whatever disorder this is. I had an alcoholic uncle who lived out his life in skid row SRO hotels, and one of my brothers has never been able to hold a job. I am so grateful that my kid at least doesn’t drink or use drugs.
I’d also be interested (along with Dinsdale) to hear people’s advice / reactions to the scenario he is trying to solve. Link here
With autism, it isn’t always logical as to what is do-able and what isn’t. There’s not enough information on your guy to know if he can hold a job or not. The fact that he can drive and attend classes doesn’t necessarily mean he can hold any kind of a job. Did you ask why he can’t? It’s possible that he can only do the sorts of things that interest him, and yet impossible for him to perform any functions he isn’t (similar to what other parents here have described).
I worked for a company where the owner’s older brother “worked” there as a means to keep him busy and safe. He looked normal, but had suffered from oxygen deprivation at birth and had many not-obvious mental disabilities. He could drive just fine. But he couldn’t work without the level of supervision that would be possible outside of a sheltered workshop. The fact that he could do some higher-level activities didn’t preclude that he absolutely couldn’t do others.
I knew a man in my old town who had a high-ranking administrative position in the Federal government, until he was in his 50s and had a benign brain tumor removed. The operation saved his life, but left him with severe attention-deficit issues and a seizure disorder, and when his marriage ended (see footnote), he moved to this town so his sister could look after him. He lived with her and her husband until he could find his own place, not far away, and not only did she manage his money, she also cooked for him because he was not allowed to use a stove or oven; he could use a microwave but IDK if he could use a Crock Pot. If you just met him, he seemed totally normal but if it wasn’t for his sister, he wouldn’t have been able to live on his own.
He was definitely very happy to find out that we had a terrific library in this town, and he also got involved in a chess club, because his superior intellect was untouched.
Footnote: By all accounts, this 30-year-plus childless marriage was already in trouble before he got sick, and the divorce was a mutual decision.
I have heard that a major issue for people with borderline intellectual functioning is not so much getting to work on time, eating adequately, etc. but protecting them from financial exploitation, the way we have to do with some senior citizens.
Community college, driving and maintains his schedule. This young man seems to be doing well.
My son wants to drive and maybe someday he will but he is way too distractable and short tempered now.
SSI is paid to those who are blind or disabled without enough credits to qualify for “regular” disability (SSDI) AND who are poor, with little or no income and few assets. They may never have worked at all, or may have worked and paid into SocSec for some period of time but not long enough to qualify (10 years / 40 quarters for older people, shorter time periods for younger). SSI is also paid to elderly people who don’t qualify for regular SocSec and have few assets, regardless of disability status. The amount of SSI is a fixed amount, varying only if you do have other income or if your state supplements the federal amount.
Social Security Disability Income (SSDI) uses basically the same standards as SSI for what constitutes disability: for an adult, inability to do any substantial gainful employment as a result of a physical or mental condition that can be expected to result in death or has lasted or is expected to last at least 12 months. It is not necessary that the condition be permanent. (Different rules apply to children, who can qualify for SSI only, based on “marked and severe functional limitations.”) The amount of SSDI is based primarily on your previous income, and your assets are not considered at all.
For both SSI and SSDI, the money will be paid to a representative payee only if the Social Security Administration determines you are unable to handle the money yourself.
For both programs, your state disability office is responsible for periodic evaluations of the likelihood of your return to work. For some conditions and diagnoses, there is obviously no real hope of that, so you may never be contacted; for other conditions, for both programs you will be required to submit continuing evidence of disability to retain eligibility.
This must be what my nephew qualified for. Significant autism - “verbal” but doesn’t really converse. There’s no question of his ever managing his own affairs. I know all his money goes to the group home right now - and when he was still at home, the money went to his parents. I’ll have to ask my brother what if any accounting they had to do to document that the money was used for D’s benefit. I think he told me that they basically charged “rent”, for one thing.
My daughter can generally manage her own money. She’s panicking right now about the rent, since she only has 3 more months of our subsidizing things. But at least she’s reacting and thinking things out. For example we told her that a laptop (all she has is an iPad now, and she really needs a real computer) was out of our budget = but if she could chip in 200 dollars we could make it happen. So she’s thinking that through VERY carefully.
Realistically, as long as we know she’s got the disability application underway, we’ll make sure she isn’t homeless. Moving back home with us would result in significant legal bills (criminal manslaughter involves a LOT of lawyering), so that’s not an option!
When my daughter turned 18, and the payments started going to her rather than to us, we were told by the Social Security office to take most or all of the money from Daughter each month, calling it her share of expenses, or rent, or whatever. If the money sat in her bank account, and built up month after month, then SS would take note and reduce her benefits. So we take all but $50 from her each month.
That makes sense. I think in addition to “rent”, the parents were also reimbursing themselves for D’s other expenses - clothing, food etc. Now I’m curious as to whether he gets SNAP; if he does, I presume those funds are also turned directly over to the home. When we did my daughter’s SNAP application, there were three supplemental forms that let her allow a third party to:
- Be notified of SNAP decisions
- Represent her in SNAP discussions
- Actually have access to the SNAP funds.
We had her fill out the first two, but not the third. I need to have her do something similar with her Medicaid - I had my son do that right when he applied.
I’m looking into things and I think my daughter JUST meets the criteria for SSDI vs SSI, which is a relief - benefits are better, and there are no means tests, which would give us a lot more flexibility re help with housing (I think), getting a car for her etc. Someone on SSI basically cannot even own a car, from what I can tell, unless you’re in a state that excludes that sort of thing from its means tests.
I endorse this. Have you considered a group home situation for her? Friends of mine moved their son into a group home that offers the men a bit more independence than they get with Mom and Dad around. He is quite happy there and my friends are greatly relieved that he has found a place. They have done their disability homework and point out that it is important to be sure that the individual isn’t in a situation where they can be easily abused (financially, sexually, personal put-downs, etc.) and her son will have a disinterested person checking in on him in addition to the social workers at the home. I expect my friends to be around for at least 10 more years but their son is 30 y.o. now so they can see how their plan is working out now, while there’s still time to adjust if necessary. He’s been there 3 years now.