“Facing up to Failure”

A fellow special needs mom recently drew my attention to statistics showing that New Jersey fares poorly in adult outcomes for the developmentally disabled.*

Cue deadpan, not at all shocked faces of parents like me, with severely autistic children. I mean, no, really?

The biggest stumbling block is the arrogance in this state. If I never again hear “my district spends so much on special ed to the detriment of sports teams and gifted programs” or “make sure your kid is signed up with Perform Care, and manna will flow,” etc, it will be too soon for me. And that’s still at the school age level of cognitive dissonance between autism families and Mythical Everyone Else. Money is being spent, so manna MUST be flowing, no? Decidedly no.

There are lots of autistic adults who could, technically, be gainfully employed, but because of falling through enough gaping cracks and loopholes, end up jobless. Let us state honestly that it takes wanting to see them succeed to keep them in the workforce, because no one would invest in their presence otherwise. If we do not look upon employing the intellectually disabled as an inherently good thing, we have no frame of reference at all, because it will always be easier for the neurotypical to hire the neurotypical.

Then there is the issue of where our kids will live eventually. While parents like me appreciate the concern of people who want us to have a decent quality of life, and who advise us to look out for good institutional placements for our kids, I hope everyone knows it is not the same thing as sending your neurotypical child off to college. There is no comparison, and I never want to be party to those facile intellectual leaps again. Please step back and consider how terrifying it feels to contemplate such a transition. And there are always endless waiting lists for every placement. We just don’t have enough resources.

And let’s come back to why we are terrified by such a prospect. You know why. The intellectually disabled are extremely vulnerable to exploitation and abuse, and if you throw in the fact of many of our kids being non verbal, you have your answer. Some day, when we have no choice but to trust in a system that has not shown much enthusiasm for accommodating us, we will be forced to join the ranks of elderly parents who sent their child away. I hope that at that time in our lives, we will have around us people who understand what’s at stake.

I was pondering these things the other day, and began to wonder one thing: just as high schools collate data on college acceptance, why not gather similar data on special needs students? First, that would require the high schools to be more goal oriented in their vocational and transition programs (which are available to students like A from ages 18 through 21, at which point they graduate from high school). Then, schools would need to have data on how many students actually got hired for paid employment. Most crucially jobs-wise, there would need to be data on job retention, since we know that the developmentally disabled are often last hired and first fired. I think we would also like to see data on the ratio of job coaches to individuals; and whether the state actually steps in to help advocate if there is an unfair firing, or to provide any further vocational training. This is also really critical: do people end up in larger institutional homes because it is the best placement for them, or are they there because there were no other more creative options, or enough of those options available in state? We all know people who had to place their children out of state too; let us take some data on how they fare when they don’t have family members to check in on them frequently.

It is baffling to me how easily it trips off the tongues of educators—Oh parents, we hope you know that YOU will be your child’s case manager when they graduate! Why, though? Why are you all (general you) so uninvested in adult outcomes? Why is this solely our task when we are getting old and possibly infirm? Why do all these variables seem to depend on socio-economic status and having the right connections? Why is New Jersey such an old boys’ club in that regard, and why are we okay with that? Why do so many people want to be part of the special needs employment industrial complex but when it comes down to it, parents are always told they should “give up their careers” and throw everything they can into their individual child’s outcome? Presumably they mean we should all study to become speech, behavioral or feeding therapists? I am not writing anything that has not been said to me a million times. These assumptions are not fictional. They are what people say to us as they back away from situations that are palpably stark and ridiculously set up to fail. What is there to say except “wow, good luck with that,” and run away gratefully to your own retirement in Arizona or Costa Rica or India. Because you can.

This journey is not supposed to be such a desolate, solo one. New Jersey is not alone in being so awful at this. But we are failing. This is a collective failure. By not trying to know, you are culpable too. By rug sweeping, by telling us to pray, meditate, eliminate gluten, and avoid vaccines, anything except demand systemic change, everyone will continue to fail the developmentally disabled.

Seek to be informed. Listen and observe without judgment. Vote for these issues when they are on your ballot. Don’t turn away. Don’t fail us.

Radha.

*http://caseforinclusion.org/data/state-scorecards