Because Ian has epilepsy and autism, he’s going to have a rougher road ahead than other folks with typical neurological systems. As a society, we’ve decided that there are some folks who are unable to work and support themselves, so government needs to help them out. But actually getting one’s hands on those services is very, very difficult.
I first became acquainted with the horrific government paperwork for entitlement services twenty years ago. When Jonah was born, we took the year to finish our dissertations and lived on savings, handouts, and WIC checks. We were able to get free milk, formula, and cheese from the government, but it took a crazy amount of time and humiliation. We did that for a year until we finished the PhDs and Steve found a proper job.
We entered the system again a few years later, when Ian was first diagnosed with a disability at age 2-1/2. He couldn’t talk. So, I called the state in to evaluate him. They said he had something called speech apraxia, not autism. They sent a speech therapist to our house twice a week.
After age 3, the state does very little for children with disabilities. In New Jersey, the massively underfunded department for children with disabilities outsources their work to a private agency, which gives families $800 for summer camp and $200 per month for respite care.
It took me two years just to figure out how to get Ian qualified with the state. Then I found out that none of the camps that he attended were approved; so no money for that. It took me another four years to figure out how to fill out the respite care paperwork, so that my mom – who actually does help me quite a bit– can qualify as an independent contractor and get $10 per hour. I have to fill out four forms every month to get her respite money.
But the state does almost nothing else for disabled kids until they turn 21. Between the age of 3 and 21, the public schools and families are expected to do almost everything. At age 18, they qualify for some help from the federal government, but I’m just starting that paperwork and don’t have enough info on that yet.
When the kids turn 18 and are legally adults, it’s necessary to gain guardianship. If that 18-year old enters a hospital — let’s just say for a horrible epilepsy seizure — the hospital cannot consult with the parent. The parent can no longer manage their education or finances without written approval. This is often tricky with kids with severe cognitive or developmental disorders, so guardianship is essential.
The paperwork for guardianship is so complicated that no one even pretends that a parent can do this on their own. You have to hire a lawyer. And you also have to pay the legal fees for the court-appointed lawyer for the adult child. That’s $4,000 easy. Poor folks can’t do that.
To qualify for Medicaid and Social Security, which are the main ways that disabled people are supported by the government, the individual must have zero assets in their name. So, a special needs trust has to be establish to put Grandma’s Christmas money. Again, a lawyer is need for that. There’s also things called ABLE accounts, but I’m not entirely sure how they work yet.
My friend, Susan, hired a lawyer to handle all paperwork for her son, even the Medicaid, DDD qualification, and Social Security. I might have to do that, too, but I want to see how much I can do on my own first.
After a series of exposés of institutions that abused disabled people, the state closed all those places down, but didn’t come up with alternatives. I hear that there are ten to twenty year waiting lists for lonely, dirty apartments.
I do think that Ian will be able to partially support himself, because he’s super good at computers. I’m filling out the paperwork for the more extreme situations, because it’s necessary to prepare for the best and worse case scenarios. The first step for the best case scenario is get him enrolled in an evening computer science program at the community college. Easy, right? Not so much.
The staff at our local community college is working from home, so no one answers the phone. The college hasn’t even committed to opening up even partially in September. I have been trying for a week to sign Ian up for one summer class and get some basic information about support services from their disability office. I have not yet been able to do this. I can’t even get a password to his online account yet.
Of course, when I get frustrated, I tell everyone on social media, and I write public officials. I have a big mouth. I told everyone that it was highly problematic that local public schools that serve upper income, white kids are currently holding in-person AP History classes and football games, but that the community college, which a half mile away and serves mostly nontraditional and/or low-income students, is closed and may not open at all. It’s an equity issue, I explained.
I am pretty sad about the state of our local community college. I’m sure that things aren’t running super well, because of COVID, and that they were never getting enough funding, but some of the folks who finally called me back weren’t exactly well-informed about programs in their own college.
So, this is just a glimpse of the paperwork and administrative hassles that I dealt with last week. At the end of the day, I just think that all these systems, from the community college to the social security system, are purposively awful. Government says that it will help folks, but it really doesn’t want to do it. The barriers to entry are so high that only wealthy people with lawyers can get that help.