Call me Ishmael.

Excuse the melodrama but right now my husband and I feel like we’re about to embark on a dark, god-less, soul-crushing journey. Our son Jonah (whom I’ve written about before) just turned 21 and  will age out of the school system this year. Parents of children with disabilities call this milestone  “falling off a cliff.”

The cliff in question is the cessation of Jonah’s rights, inscribed in federal law, for services that nurture his development, education, and relative independence. For eighteen years he’s been cradled within the sheltering arms of laws and regulations that protect children with disabilities: the right to a free education within the least restrictive environment, the right to therapies that foster his ability to learn, and the right to “transition” services, like the job-training program he attends right now.

But on June 20th, the last day of the school year in my Central New Jersey school district, a gong is rung and Jonah’s rights are sucked into the black undertow of the Division of Developmental Disabilities (DDD). We thought that navigating special education services was arduous. However, after months of trying to decode the hieroglyphics of adult services, we realize that our family’s trip through Jonah’s school years was a day at the beach. The source of the current danger, of course, isn’t a white whale. It’s the lack of federal regulation and accountability that allow states like New Jersey to maintain twelve-year waiting lists for residential placement and that require parents to master the arcana of Comprehensive Assessment Tools, Support Coordinator Agencies, Care Management, Medicaid eligibility, ad nauseum. Truly, ad nauseum.

If you’ll excuse the digression, our family’s circumstances (which we share with all parents of young adults with disabilities unless they happen to be as rich as Midas) reminds me of the Senate’s 50-49 vote earlier this month to eliminate the accountability regulations for the  Obama Administration’s reauthorized federal education law called the Every Student Succeeds Act.  Hence, states are now free to count students’ progress any which way and build meaningless rating systems for schools. Critics, according to PoliticsK12,  charge that this endrun around accountability will “endanger crucial protections for disadvantaged students.”

Senator Patty Murray (D-Washington), who helped craft ESSA, said that the Obama regulations provided “clarity on accountability, on reporting requirements, and on state plan requirements. And it helps ensure that no student, no matter where they live, can fall through those cracks…If the rug’s pulled out from under these states, there could be chaos.”

Ecce chaos.

Denise Marshall, executive director of The Council of Parent Attorneys and Advocates, bemoaned the rescinding of ESSA regulations, telling Disability Scoop that “we cannot imagine how, without regulation, the Department (of Education) will engender compliance with (the) new statute in 50 states plus territories.”

Yet ESSA survives, albeit nursing a few more tooth extractions. Good for local control addicts, Trumpists, and Tea Party-ers. Bad for historically-disenfranchised kids.

But there’s not even a weak ESSA for adults with disabilities. There’s no safe harbor. There’s no assurance of protection or programming or reasonable timelines for placement in group homes. Of course, denial of necessary services happens all the time in K-12 special education, but at least there are rights and due process and recourse for families and their special needs children.

But not for my twenty-one year-old son whom my husband shaves each morning, not for my six-foot manchild who towers over me as we arrange his bed each night and pick out his clothes for the next day, not for my Jonah, who can fix my computer but can’t figure out the correct change if he wants to buy a soda.

Nakeishia Knox, the Newark mother of a son with autism, told NJ Monthly,

.“What happens when, God forbid…” She stops, unable to complete the sentence. Finally, she says, “We won’t live forever.” Unfortunately, living forever seems to the couple to be the only way they can ensure a happy, productive life for their son. As an autistic young adult, Philip faces an uncertain future. After he ages out of the public education system in 2017, there’s no telling what will await him.

And this, from a couple with more resources at their disposal and some “ins” with DDD:

Peter Bell and his wife were given a list of coordinators to choose from. “But we have absolutely no information to go by as to who’s good, what they offer and what a support coordinator really does,” says Bell. He’d like to think that, as insiders, he and his wife are up on these things, “but even we are intimidated by the process,” he says.

As my husband and I sift through the DDD material, we find ourselves (with apologies to Melville) going grim around the mouth. It is a damp, drizzly November in our souls. It is a queer time for us in this strange, mixed affair we call life. As parents of a young adult with disabilities navigating an unaccountable sea, we can’t help but take this whole universe for a vast practical joke, though the wit thereof we but dimly discern.

Maybe we should have named him Ishmael.