My dear friend Susan Cohen recently wrote an article for the National Fragile X Foundation on the friendship of our sons, Julian and Jonah. She describes how they met at a sleepaway camp, enjoyed each other’s company (a rarity for our socially-averse boys, particularly mine), and, after a prod from a counselor and sustained parental intervention, have become best friends.
This is a happy story that we hope will have a happy ending. For Julian and Jonah’s parents, this means we find a way for the boys to live together with necessary support. Yes, they are smart about certain things: Julian loves opera, Jonah is an obsessive techie. But their deficits are extensive enough—they have no concept of money, need help with basic hygiene, Jonah would live on potato chips if given his druthers, Julian would never leave the house—that they need much support.
This should be a no-brainer, right? New Jersey has all sorts of state programs for developmentally-disabled adults (the boys are 23 years old). We have a Division of Vocational Rehabilitation (DVR) that is supposed to help people with disabilities find jobs. (“We’re an ‘Employment First’ state!” a staffer told me proudly.) Each boy gets a check every month from federal social security and a budget from the Department for Developmental Disabilities (DDD) for day programs. Jonah has a voucher from DVR for job training.
But if not for our privileged circumstances — time to attend frequent webinars and meetings on housing, savvy researching and budgetary skills, resources to get legal advice — our boys might be lost, sitting at home with nothing to do. Like this young man who, as described in a Seton Hall University study by Jaime M. Jackett, after graduating from a New Jersey high school “confronted a dramatic decrease in supportive services…Four years later, he continued to suffer from the absence of ongoing programming to address his needs.” Another New Jersey resident, reports Jackett, a 33-year-old man with autism, “added his name to a waitlist for adult services more than twelve years ago but is still waiting for a residential placement despite being a ‘priority’ candidate.”
That study was written nine years ago.
I don’t think anything’s changed.
While the boys were in school, their rights were inscribed in federal and state law. Now that they’ve lost the protections embedded in the Individuals with Disabilities Education Act (IDEA), they’re at the mercy of a largely unaccountable system.
Those two young men described in Jackett’s study could be Jonah and Julian. They’re not because they have day programs, despite the perennial metaphor of disabled high school graduates “falling off a cliff.” (I contemplated Jonah’s descent here.)
But their future is unclear. We parents are getting older and won’t be here forever. Julian has no siblings and, while Jonah’s adore him, they’re just launching into adulthood themselves.
And thus we approach the issue of equity for adults with disabilities who, in Jonah and Julian’s case, remain, in some ways, childlike.
But what does equity mean for disabled adults? Is New Jersey (as well as other states — cliff-falling happens throughout the country) really supposed to pony up, along with federal Medicaid money, what will at the end amount to millions of dollars in support once our boys ascend to the top of the (possibly mythical) waitlist? Is it fair to allocate this sort of largesse while so many other pressing needs remain unmet? Should it be the parents’ sole burden to bear? Is there some point at which caretakers of people with disabilities expect too much from state and federal taxpayers? Is there a point when aspirations for equity become foolhardy or unrealistic?
The answer for some is “yes.” Princeton Professor Peter Singer concludes that it would be morally wrong to not kill a baby with spina bifida at birth, says he would never raise a child with Down Syndrome (“For me, the knowledge that my [hypothetical Down Syndrome] child would not be likely to develop into a person whom I could treat as an equal… would greatly reduce my joy in raising my child and watching him or her develop), and argues that,
When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.
Look, I’ll say it right up front: I’m a special pleader. This is my son and Susan’s whom we’re talking about. But there’s no IDEA for adults. There’s no accountability. The DDD and DVR are confounding bureaucracies. Jackett notes that New Jersey’s services for adults with disabilities are plagued by “insufficient funding…inadequate transition planning and a lack of coordination between schools and other state agencies,” and “seemingly perpetual waitlists.”
My day job is writing (and editing other writers) on issues about educational equity and accountability, primarily for historically disenfranchised students. And yet I feel like it’s my early morning/night/weekend job too (as well as my husband’s), once you get past Jonah’s “adulthood.” Jonah and Julian are disenfranchised. Jonah and Julian suffer from segregation (although Medicaid really has to get over the fallacy that intentional housing communities are somehow immoral). Jonah and Julian are looked at askance when they loudly parade into restaurants or have trouble buying sodas at the convenience store or make inappropriate noises in public or throw their arms around each other or won’t get off the elevator because, well, elevators are just super-cool.
Don’t they deserve respect for their humanity as well as their differences?
In an equitable world they would.
And so we wait.