In the United States, children with severe disabilities, especially intellectual disabilities, face an ignominious juncture around age 20. Aging out of school is referred to as “the cliff,” as students go abruptly from the structure and services provided in school into… nothingness as adults. During our son’s last Individual Education Plan (special needs) meeting, we argued for funding for his Covid makeup year (an additional year offered to some special needs students turning 21 in New York). The Department of Education representative refused, then actually laughed when I described what it was like living at home full-time with Jason, diagnosed with autism and intellectual disability. The representative apologized later, saying only that he was surprised it was “that bad.”
“There must be some kind of government help,” he said. He could see from the records that Jason could be violent, functionally can’t communicate, and needs assistance with almost every aspect of his life. We don’t have family members who live nearby, and even if we did, they wouldn’t be equipped to do much to assist us.
“No, we don’t have help,” I told him. We were at a breaking point after two years deprived of the hands-on therapies that make up a substantial portion of his education, and assumed, reasonably, that this meeting was to plan the makeup year. But it was merely a bureaucratic mistake calculating his age. The representative covered it up by calling it our “termination interview,” which he should have had the previous academic year, i.e., a violation of the DOE’s own policy. But we had no one to appeal to. We’d been pushed off the cliff.
Services to help parents care for their disabled children from school age onward do exist. But resources are distributed often not to those who need them most but in reverse. One of the first agencies we were assigned to when we moved to New York was AHRC (which no longer uses the full name of the acronym: Association for the Help of Retarded Children). It provides “home-based respite,” i.e., a worker to sit with Jason and keep him safe to give us a break. We qualified for two hours on Saturdays. Putting that into practice meant interviewing workers, and then spending time training them—only to find that by the next week, they’d “moved on.” We were also surprised by how many of the workers showed up late, secretly used our computers, and behaved indifferently toward Jason.
We came to realize only later that while the agency receives something like 40 dollars an hour to provide the service, only about 10 goes to the worker. Little wonder they are constantly moving on or find Jason too challenging to be worth that pay. After months of searching for workers (one man even deserted us in the middle of his first shift), only one man actually stuck with it. We fell into a nice routine—my spouse and I would make sure Jason was situated and then run across the street to our offices to catch up on work. One day, I forgot the power cord to my laptop, doubled back, and found the man deep in a nap—snoring, glasses neatly laid on a table. He was unfazed when I woke him to fire him, and I reported him to the agency. Months later, trying to get another worker, I was surprised to learn that the agency still employed him. I was so spooked by their low standards, we never used them again.
AHRC also runs a special needs summer camp for children and adults, so we instead arranged a week for him in the Catskills. He loved playing in the pool and the equine therapy. He went year after year. There were occasional calls over his behaviors (urinating in the bed, hitting counselors), but he was able to be physically contained and safe—and his parents could have a pleasant staycation.
As Jason grew bigger—and thus more troublesome—his camp registration was mysteriously switched to a session he couldn’t attend. In his last year in the children’s camp, the camp director objected to an alleged 12-cent budget discrepancy over how much Medicaid would pay. Even after being shown that the discrepancy did not exist, the director just stopped replying to calls and e-mails even from Jason’s Medicaid care managers. I’d registered him and gotten all the medical and behavioral paperwork in on time, but queasily noted that the usual confirmation never came. The director had ominously remarked that there might not be “room” for Jason this year, but checking with a friend whose son also attends the camp, I was surprised to hear that the director had reached out to encourage her to have her (tractable) child attend; the opposite of “not enough room.” Normally, the day before camp starts, the director contacts us to confirm that we are driving Jason—he doesn’t need the bus. No call.
Jason had been ghosted in the most cowardly way—he was not formally released as a client, so “respite camp” remains in his Medicaid budget, so we get the worst of both worlds: a budget for services we never receive, stressing out for months over the uncertainty and fighting over the 12 cents, while this director gets paid to run “a wonderful opportunity for people with intellectual and developmental disabilities to have an enjoyable summer vacation away from the city, and an opportunity for families to take a break from the responsibilities of caregiving.”
Another service we were initially happy about was the New York City paratransit system, Access-A-Ride. The evaluation to determine the obvious, that Jason couldn’t use the subway or bus, took months, and then the very first trip transporting him from his school program, a 20-minute cab ride, took two hours (not including the wait time). I called to report and was told this wasn’t an aberration but deemed within an acceptable range—even for a child whose disability involves not being able to tolerate long rides. Then I had two incidents of van drivers’ making disparaging remarks: “Why is he making that weird noise?” Again, likely the result of low-paid employees never given appropriate training. This service quickly became useless to us.
That publicly funded agencies take our taxpayer money but provide no workable services makes us feel as voiceless and angry and helpless as our son.
Some parents in our situation end up just calling 911. Their children end up in the ER, then languishing in hospitals, often sedated with powerful drugs or restrained because staff are not trained for their needs. The hospital “is the incredibly wrong place for these individuals to go in the beginning,” said Michael Cummings, the associate medical director and a psychiatrist Erie County Medical Center in Buffalo in an investigative report by Kaiser.
Given the abysmal abuse and death associated with even the best-seeming residential homes, particularly with private equity entering the space, we chose early on to keep Jason at home by utilizing the Katie Beckett Medicaid Waiver, designed to keep children with disabilities and medical issues out of institutions and hospitals. It was signed into law by none other than Ronald Reagan, as it saves the government significant money because the parents provide the infrastructure and labor. But what do we (taxpayers) get in return? Take something as simple as adult diapers. I had to get Jason’s physician to prescribe them for enuresis, get it OKed by our Medicaid coordinator, then find an adult diaper firm that took Medicaid, and order them—a six-month task. They turned out to be flimsy, leaky, and made with toxic materials that gave him a rash, with the contractor probably getting rich by cutting corners, and me having no recourse than to just not use this “service.”
The general public does not understand that disability services are not bestowed automatically by a benevolent government exquisitely attuned to a family’s needs. It is up to us parents to search out both the funding and the services. Barriers to access include not speaking English as a first language, having a business-hours job and/or multiple children, not having the social capital to understand how the system works, not having reliable Internet access or a phone. My husband and I are both college professors and I previously worked as an investment banker. Even so, successfully acquiring the Medicaid waiver was a years’-long procedure in which I came close to giving up several times—and when we moved to another state, had to start completely from scratch. At least New York has a moving pipeline; 35 states have waiting lists (which is actually a record low), the average wait time being 45 months; Texas’s waiting list is 232,068 people long, making it functionally as useless as our diaper service.
March is Disability Awareness Month, a bit ironic since the (temporarily) abled community tends not to pay attention to the disabled at all. The government is quite aware, however, that this is a minority constituency devoid of voting power, evinced by how services are often the first place politicians look to make spending cuts, strained budgets meaning little investment is made into the oversight. Many of these agencies then are emboldened to act like the most callow of corporate entities, cutting labor costs to the bone while putting their money into questionable spending like bloated CEO pay, cherry-picking the easiest clients and pushing the others downstream. On a case-by-case basis, it may look like difficult clients like Jason are no longer an agency like AHRC’s problem; however, according to the CDC, 16 percent of children age 3–17 have a developmental disability. This percentage has been increasing every year, meaning more parents are facing the cliff, burning out, and resorting to 911. The Minneapolis Star Tribune just reported a dire lack of hospital beds and that ERs are backlogged with patients with autism and intellectual disability and no intermediate services to help the kids get better and back home. Eventually, there won’t be enough hospital space or government budgets to pay for it all—and then it will be everyone’s problem.