Tomorrow the New Jersey Assembly Women and Children Committee will hold a hearing on the difficulties experienced by parents of children and adults with Intellectual and Developmental Disabilities (I/DD) when trying to access services through the state system. The committee is asking for feedback. As one of those parents, I’m happy to oblige.
My son’s day program closed down in March 2020 due to Covid-19. Sure, it was rough: Jonah has a genetic mutation called Fragile X Syndrome, a spectrum disorder that for him causes developmental disabilities, anxiety, and autistic-like symptoms; he craves routines and predictability, scarce commodities during a pandemic. As the months went by with Jonah simultaneously blaring the TV and iPad, me clicking on my upteenth Zoom call at work, and my husband burying himself in his desktop, we made do. It was a pandemic.
Coronavirus rates began to go down and we all got vaccinated. Schools opened up. The Murphy Administration issued new guidance: no more masks outside! We rode NJ Transit, ate inside a restaurant, went grocery shopping maskless. The world is opening up! Broadway’s back, exults Jimmy Fallon and Lin-Manuel Miranda!
Unless you’re an adult with I/DD.
Three weeks ago Jonah’s day program opened up at half-capacity with shortened days. One week he goes Tuesday and Thursdays, the next week Monday, Wednesday, Friday. The other days he mostly stays in his pajamas.
- Because the Murphy Administration insists that I/DD clients in day programs maintain six feet of social distance, even when being transported on vans and buses, a rule not in place for anyone else.
- Because the Murphy Administration pays support professionals who staff these programs so little that programs that could take in more clients can’t find people willing to work there. (This despite a $10 billion surplus.)
- Because the proud progressive streak the Murphy Administration prides itself on (millionaires tax, minimum-wage hike, legal marijuana) comes to a screeching halt through the inequitable exclusion of adults with I/DD from mainstream life.
Jonah can’t articulate his more abstract needs (although he can give you chapter and verse on the specs of a Ford 150) so I’ll do it for him: He needs a day program with appropriate funding that reflects this Administration’s progressive ideals. He needs state leadership that treats adults with I/DD like full citizens and values them enough to provide fiscal support so day programs can function.
Many other parents feel the same way. Here are quotes (names redacted) from a Facebook group called Advocacy for Adults with Disabilities.
“From what I hear programs not opening either the social distance rules and they have problems hiring. Nobody is applying! No workers, no program, plus how long can a program continue to exist under the rules? The CDC is now 3ft but Murphy is keeping us at 6ft.”
“My son is still home and not back in his day program. They only took a certain amount of people back and he wasn’t in the first group. Lord knows when the next group will happen! Seems everybody’s getting back to normal, I work in a school system and we are able to unmask during hot days. So I DK what’s going on with the DDD and Murphy and these ridiculous decisions!”
“So upset today. Got a message from my sister’s day program. Because of being so short staffed they have to cut my sister down to 2 days a week and ONLY if her group home can transport her and the other person from the home.”
“What needs to change is the pay. Along with a statewide training program! There is no incentive to want to be a DSP [Direct Support Professional]. It’s not easy work & to do all they are supposed to do & earn only $12-$13 hr. This will attract no applicants!”
“My son attends Douglass Adult Program at Rutgers. He is only back for 1 day a week…no transportation.”
“We can fly on a plane and sit in a restaurant right next to other people. I work in a school with children with special needs and we have been in basically all year. This is So ridiculous! Ugh.”
“Son is still sitting in his house. May go back 2 hours next week. He has had Covid and is vaccinated.”
“I manage a day program. We are bone dry on staff. We can’t bring everyone back until we can care for them safely.”
When will the Murphy Administration start treating our children like neuro-typical people? Why are our children tossed to the curb, subject to discriminatory, arbitrary, anti-science guidelines, while everyone else follows less stringent rules? Why don’t we pay support staff as much as cashiers as Walmart? When will New Jersey start valuing this historically-neglected group of citizens?
Jonah is asking or, rather, I’m asking for him. So are thousands of other New Jersey residents. Thank you for your time.