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.
Apt. 11d 
Yes, the general principal that decreasing access to resources even to those who qualify seems to be one of the effects (and, yes goals) of the complex rules put in place around the services. And yes, these rules allow better access to those with the social, skills and money capitol to access those resources. The Legal Services Corporation and non-profits like them fight a constant battle when Republicans are in power because they limit the ability of the poor to acces the skills required to get access to the government programs that are supposed to help them.
I was struck by Ron Lieber’s column on managing finances around his father’s death: https://www.nytimes.com/2021/02/26/your-money/financial-planner-end-of-life.html
What struck me was his glowing endorcement of hiring a profesisonal financial planner for the process, without ever detailing what the planner did (except for hosting his dad during a hurricane, which, I presume, is not a service offered by financial planners generally). I suspect it was to help with the complicated access to government resources while preserving inheritances, a form of planning that always makes me uncomfortable. Most people don’t have parents that leave them an inheritance, but, it’s also true that if the end of life care costs 100s of thousands of dollars, I see why even people like Lieber see it as necessary.
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An ABLE account is one of the ways Ian will get around SSI’s $2,000 (not zero) limit on assets, and how you will launder the portion of SSI you and your husband will collect “in rent” from Ian. It is also a good place to park any money gifts from relatives; contributions up to the current tax limit on gifts are permitted (last I looked, $15,000 a year).
I checked briefly, and the NJ ABLE site is very easy to read and navigate (I’d guess it is written on a middle-school level). The diciest part is choosing among investment options, which should be easy-peasy for someone who works on Wall Street.
On another note, I have always found our local SSI staff very helpful, if overworked. After Ian qualifies, he will have a SSI caseworker assigned to him, and they can answer ongoing questions.
SSI encourages recipients to work and earn money. When that day comes, Ian’s monthly SSI payment will be reduced slightly in proportion to how much he earns. I’m getting a bit ahead here but it will be useful for you to know that there is a handy-dandy phone app for reporting the previous month’s wages during the first five days of the month.
Also, too late now but Power of Attorney for medical and financial can be often enough. That is all we have for now for our 23 y.o. Autie. (You might want to consider POAs for your oldest son in case he gets hit by a bus. After he gets married, his spouse can take over.)
Finally, while I don’t know anything about NJ’s I/DD system, it was explained to me that the County Board system here in Ohio was created for adults, and so maybe that is true historically throughout the country? Oh well, this is something your family has aged out of, not your problem any more.
Oh, another “Finally”: residential institutions are being closed because of the Olmstead decision (worth a google to learn more about). The Biden infrastructure proposal includes a nice chunk of change for community living, so perhaps the supervised living options available to our sons will increase.
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Thanks!
About how much assistance do you get from state and federal sources combined? Is there a dollar amount? I’ve been trying to google that info, but can’t find it anywhere.
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Your post had my spouse and me talking about how this would work if it was a check box you could check on your taxes, rather than an entirely different framework to understand and a new set of forms to deal with.
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I love that idea.
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Re: Housing options, try
Moving Out: A Family Guide to Residential Planning for Adults with Disabilities: Dafna Krouk-Gordon, Barbara D. Jackins
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thanks
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Of course it’s hard. It’s part of the horrible US identity that we care more about making sure nobody is scamming the government than about actually serving people who need it. So we spend a larger percentage of the budget on making it difficult to scam (which also makes it difficult to get well-deserved benefits) than on the benefit.
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There are legal organizations in WA state that try to provide support on these citizen legal questions (i.e. interactions with schools, disability rights, renters rights, domestic protection orders . . . .). For example, in WA, https://nwjustice.org/home
The organization provides legal representation for a few, based on income levels cases, and needs. But, they also offer educational sessions for people to advocate for themselves: https://www.washingtonlawhelp.org/
There must be something like that in NJ, too?
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It’s not just the US – any ‘entitlement to state support’ paperwork and requirements is a never-ending nightmare in NZ as well.
I often think that we could fund all of the support we need by just firing the bureaucrats whose mission in life is to say we can’t have it…..
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Ann said, “It’s not just the US – any ‘entitlement to state support’ paperwork and requirements is a never-ending nightmare in NZ as well.”
I’ve always found that English-speaking countries seem to handle these things very similarly. The stories tend to be very recognizable.
And then you have places like France, which are essentially a different planet (and not in a good way).
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