On the day of my son’s scheduled graduation on Tuesday, I cried. But I wasn’t feeling joy or happiness; they were tears of rage and sadness.
Most parents look forward to their child’s high school graduation, excited about the next phase. That’s not the case for parents like me who have a child with a disability such as autism, like my son.
Sammy is now 21, the age at which we experience a sudden and dramatic elimination of educational and program options — something parents of disabled children call “falling off the cliff.” Even in the best of years, it’s a rough transition; this year is even tougher. Because of COVID-19, the Class of 2021 missed over 200 days of their transition programs, in which they learn critical life and vocational skills to prepare them to become independent and productive, reducing the need for support as adults. Without these programs, they are not ready to graduate.
I recognize that my son Sammy is disabled. I accept that he may not enjoy milestones like driving a car, going to college, or getting married, but this does not mean he is any less deserving than any one of us to have a life filled with meaning and purpose, work and entertainment, joy and laughter. As his parent, it is my job to ensure that he is completely prepared to reach his full potential.
That is why I have been fighting for SB 3434, a bipartisan New Jersey bill that would give my son, and others like him, the opportunity to recoup the time in school stolen by COVID-19. And it’s why I didn’t let Sammy get his diploma Tuesday, in the hope that he could continue his schooling — and services — next year.
This bill is not a slam dunk: Districts must agree with a parent’s request for this replacement year of school. So even if the bill passes, a district could make the unconscionable decision to let disabled students miss out on this critical year, forcing families like ours to make the financially and emotionally costly decision to file for due process. Still, SB 3434 will at least give our children a fighting chance in the courts. Don’t they deserve that much?
The New Jersey legislature believes my son was deserving of his education. On June 3, it passed SB 3434, extending the eligibility for special education services, including transition programs, by one school year. Since then, the bill has stalled on the desk of Gov. Phil Murphy. Without it, Sammy and other disabled kids will no longer be eligible for services after June 30.
Gov. Murphy has not said why he hasn’t signed the bill, and his office won’t comment on pending legislation, but I believe the reason is money. It’s always about money.
According to the governor’s office, SB 3434 would cost an estimated $500 million over three years (although there are much lower estimates). It’s not cheap, but right now the state has a $10.1 billion surplus and billions in federal aid.
I believe every cent the state spends on disabled children will be well worth the return on investment. Even some research supports this: A study in Nepal found that investing in the education of disabled kids yielded returns up to 26%. A similar bill to SB 3434 is being considered by the Pennsylvania General Assembly (SB 664). Our children work harder than anybody and persevere through their limitations. We can’t give up on them.
Gov. Murphy cites how New Jersey is ranked No. 1 for education while ignoring disabled children and their families, who he calls the “most vulnerable communities that have been crushed by this pandemic.” For us, he offers “enormous sympathy.” We don’t need sympathy; we need support.
When parents receive a diagnosis of autism, our world is rocked. Our original hopes and dreams for our child’s future are snatched away, but we pick ourselves up and fight for new hopes and dreams. Since Sammy’s diagnosis, I have hoped that he would one day find a job that gives his life meaning and purpose. Without an extra year of services, that simple dream for my son may never come true.
I implore Gov. Murphy, on behalf of my son Sammy, to sign SB 3434 today. Don’t choose money over our kids’ future. They don’t deserve that.
Laura Colnes is a teacher based in Marlton.