From the newsletter:
Sipping the rest of my white wine from dinner, I logged into Zoom for a webinar “The Basics of SSI and Medicaid.” Two experts — the director of an advocacy and support group for disabled people and the county’s social worker — cheerfully walked us through their powerpoint slides on how to apply for government services for our disabled young adults. With a smile on their faces and the upbeat tone of a Kindergarten teacher giving directions for baking a cake, they instructed us how to become mice in the government maze.
Two years ago, around the time that other parents were on college tours with their teens, I began preparing my son with autism for a hostile world. I started attending evening presentations, both in-person and on Zoom, where I learned about the need for a special will, guardianship, and a special needs trust. We doled out about $10,000 to various attorneys to process the legal paperwork, so now Ian is protected in case we get hit by a car tomorrow, or he is hit by car and we need to talk with his doctors. In short, all legal matters related to car crashes are done.
In my highly privileged world, people know how to get their kids on the road to success with AP classes, SAT prep, college applications, the right internships, and a three-year management training program. This knowledge is in the drinking water. But that’s not my path or my kid’s path, so I spend hours every week learning about insane government rules for social supports with the assistance of the bizarre Bureaucracy Shepherds, who point us in the right direction. Or sometimes the wrong direction. That happens, too.
I’m Alice sitting at the dining table with the Mad Hatter, who is pouring tea down his sleeve.
***
Despite the many gifts of autism and my son’s high potential, he may never be independent. He may never have a full time job. He may never get married and have kids. He may never drive a car. He may live with us until I die, when he’ll be left alone with my corpse in our crumbling home. I really have no idea how things will pan out, so I’m planning for both the best case scenario and the worst case.
As part of our best case scenario, I’m helping Ian transition to community college. (I wrote about that process here.) The worst case is no employment, no higher education, no independence, on-going medical issues, isolation. As part of the worst scenario, I am now working to get Ian into the system for Supplemental Security Income, Medicaid, and New Jersey’s Department of Developmental Disabilities.
With dozens of webinars and evening presentations under my belt, I am still highly, highly ignorant. Some of these presentations are so complicated that, in the past, I’ve just let the words flow over my head. But I can’t let the terms float by anymore. It’s time to fill out the paperwork.
So, last week, after attending yet another vague and unhelpful Zoom webinar, and I called the county social worker. Without going into too much detail, because she would not agree to go on the record with a formal interview, she spent an hour telling me how to fill out the many, many forms about Ian’s disability. She said that I should describe him on his worst day and imagine how he would manage without us.
She said that the most that he will receive, as an unemployable, indigent disabled adult, will be $573.65 per month, if he still lives with us. He’ll receive $825 per month, if he lives alone. That money has to be spent every month, because his bank account can never have more than $2,000. That $573.65 can only be spent on housing, food, and clothing, and we must keep precise records, because the government might audit us twice a year. Since Ian does not have an intellectual disability, we might have to hire a lawyer to get him into the system.
Now, all these webinars typically never tell parents how much support that their child will receive. It’s like a state secret. I had to get a person on the phone and ask them a direct question to get answer to that question.
Since no American can survive on less than $7,000 per year, the money is really a payoff to the parents for housing and feeding their disabled children, who are no longer children. In addition, few disabled people can actually fill out all this paperwork on their own; the parents have to do it for them. These programs are really for the caretakers, not the disabled people. Yet, $7,000 is not enough to compensate for the life-time management of another human being, who needs help with everything from entertainment to clean underwear to three meals a day.
Apparently, this process of getting into the system is going to take months. I am going to continue documenting the process and the bizarre people that I meet along the way. I might back-up and tell a few stories, like the lawyer who was assigned to Ian during his guardianship process, who broke down crying as he told me about his son with autism who died twenty years ago.
After getting the full story from the social worker, I was pissed. I’m angry that I’m being tortured for no good reason and that this system was created to keep people from getting benefits. How many needy people never complete this paperwork? I’m angry that there is so little support for kids with greater needs than my son.
I’m angry that I am only just now learning about the extent of our shitty safety net, even though we’ve been in the disability world for 17 years ago. There should be a whole chapter in “What to Expect When You’re Expecting” about this nonsense; if there was greater knowledge about poor safety net, the birth rate would be cut in half.
As so often happens with anything related to disabilities and the system, the abstract facts are infuriating, the big picture is disgusting, and I hate all people. But after a few days to absorb this information, I’m cooler. My kid is pretty awesome and, even if he’s with us forever, that’s fine with me. Our day-to-day reality is actually pretty nice.
Last night, Ian helped me chop up apples to make apple sauce. We talked about the best ratio of cinnamon to white sugar for the topping and reminisced about our trip to pick the apples last month. Later, over bowls of warm apple sweetness, we planned our trip to the Berkshires next weekend.
Yes, this government bureaucracy and the people in the trenches are completely bizarre. I’m going to tell those stories, because I deeply believe that political action can make improvements in the system. But, at the same time, just know that we are so very lucky.
Apt. 11d 
“ With a smile on their faces and the upbeat tone of a Kindergarten teacher giving directions for baking a cake, they instructed us how to become mice in the government maze. ”
What a great description!
LikeLike
Laura wrote, “She said that the most that he will receive, as an unemployable, indigent disabled adult, will be $573.65 per month, if he still lives with us. He’ll receive $825 per month, if he lives alone. That money has to be spent every month, because his bank account can never have more than $2,000. That $573.65 can only be spent on housing, food, and clothing, and we must keep precise records, because the government might audit us twice a year.”
The combo of only being able to spend on those three items, having to spend everything, and being regularly audited is kind of nasty.
LikeLike
Yes, a lot of complicated forms to get access at all and then a bureaucratic burden for the rest of the time (with significant consequences if you mess up). Hence the need to ask the question (which Laura points out doesn’t get answered) of what will you get once you jump through the hoops
Not having to navigate myself, I think it is the Medicaid and what happens when you are not around to take care of your kid that makes it necessary to jump through the hoops now, when the child becomes an adult. For example, proving that a disability was a child hood disability is a lot easier when your mother is around, with her memory & paperwork. Medical expenses can become significant, and, I think, sometimes, the number of people who access some services are so likely to be served by state funds that it can be difficult (or impossible) to pay for them directly. The companies don’t want to deal with the paperwork related to you money.
I not very sympathetic when adult children try to work the rules to preserve their own inheritances (though I’m more sympathetic to protecting spouses). But if there is a person who might have 80+ years of continuing need, planning is necessary (and that’s true even if it only *might*).
LikeLike
Yes, disabled people in the US are treated horribly – made to fill out all kinds of complex paperwork, subject to scrutiny, and rewarded with inadequate funds for living let alone their medical care. The Protestant work ethic has a lot to answer for.
LikeLike
“The Protestant work ethic has a lot to answer for”
Yes, but not just for these reasons. (Sorry, I start off one of my classes with the Protestant work ethic and then proceed to dismantle it bit by bit throughout the semester.)
I think another issue is the way we deal with cheating/exploitation of the system. Yes, of course there are people who cheat the SSI system. But we focus on these cheaters so much and thus we lose the people who aren’t cheaters, who are then deterred from entering the system or kept ignorant of how to enter the system.
LikeLike
Not only in the US.
The paperwork & bureaucratic hurdles that disabled people (or more often, their families) have to jump through is a nightmare here in NZ as well.
There’s actually a group of volunteers who offer to attend meetings with the bureaucracy with families, to ensure that all of the options are covered [newsflash, they’re not – frequently the staff on the ground don’t know what services are actually available].
The government agencies *hate* these people, but you’re allowed to bring an advocate with you – so they can’t do anything about it.
We also have the bizarre situation here, where parents/caregivers of disabled adults can be paid for their work (the payment doesn’t cover all of the services, and the government is subject to frequent legal challenges over this). That’s not the bizarre bit.
Because of the way the government-mandated contracts work, the ’employer’ isn’t the State, it’s the disabled person!
Now, that may work where the disability is physical – but it’s a complete disaster when it’s a mental disability – even a relatively mild one like Down Syndrome. The disabled adult (in these cases) isn’t able to understand employment and contract law (believe me, you need to know both to be an employer here in NZ). Parents are put in the bizarre situation of writing employment contracts and negotiating holiday leave (for example) on behalf of their adult child – with themselves!
Parents/caregivers have been pointing this out to the government since the law change was made. And, suggested the simple compromise that they be paid the same rate as a non-family member caregiver, and be employed by the State or one of the commercial agencies – to whom the State mostly outsources this work. Unsurprisingly, with a bureaucracy, there has been no change.
LikeLike
“Apparently, this process of getting into the system is going to take months. I am going to continue documenting the process and the bizarre people that I meet along the way.” Laura, this is your book. Hell of a market waiting for you.
LikeLike
I hope so. I’ll write up some of these stories for my newsletter and see how it looks.
LikeLike
And the social worker just agreed to the interview. I’m very good at convincing people to talk with me. This week is a short school week in NJ – Ian is only in school Monday and Tuesday – so I’m going into full writing/intervewing mode starting next week.
LikeLike
Love that you have that skill because it means that we get to hear the stories. Still want you to be the one writing those articles for everyone else, too.
LikeLike
Nobody tells me their stories, which is ok with me. But I still want to know the world from other perspectives, so I rely on you and others who tell the stories to everyone.
LikeLike
When Steve retires, Ian can switch to SSDI. Then Ian will get half of whatever Steve’s Social Security Retirement Benefit amount at full retirement age is scheduled to be — it doesn’t matter for Ian if Steve retires early or later. (Of course it will affect the amount Steve gets every month if he retires early or late but we aren’t talking about Steve).
Then, after Steve dies, Ian’s monthly benefit will rise to 75%.
Be happy Steve makes a good living. The child of a ditch digger gets 50%, then 75%’of a much smaller amount.
Also, you can spend SSI on lots of things. I usually use ours to pay the bi-monthly psychologist visits, the tutor (for community college classes) and the SLP running the social skills group.
LikeLike