Down the Rabbit Hole: Documenting My Adventures in the Strange World of Disability Services

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.