Advocates for New Jerseyans with disabilities worry that the state’s support system still hasn’t fully adjusted to the COVID-19 era, even during a relative lull in the pandemic, let alone what would happen if there’s a second surge of infections in the fall or winter.

New Jerseyans with developmental disabilities have been hit particularly hard by the coronavirus – not just a mortality rate approaching 3% in developmental centers, but also the loss of in-home speech, behavior, occupational and physical therapy during a critical time in their development.

Catherine Chin, executive director of the Alliance for the Betterment of Citizens with Disabilities, said day programs and services remain closed and virtual options don’t work for some. She said support coordinators are telling her about an increase in behavioral issues in family homes.

“We should anticipate that the mass trauma that is COVID-19 has and will lead to increased mental health, PTSD and behavioral issues for individuals with developmental disabilities,” Chin said.

Chin said early intervention services are still only being 50% utilized, with referrals having slowed to a halt as daycares closed and pediatricians saw fewer patients.

“We can’t just get these infants and toddlers services later,” she said. “A kid’s development doesn’t stop just because there is a pandemic.”

New Jersey disability ombudsman Paul Aronsohn said the pandemic has been especially difficult, challenging and damaging for children with intellectual and developmental disabilities.

“Parents tell us the most heartbreaking stories about children falling behind in social skills while engaging increasingly in self-injurious and other dangerous behaviors,” he said.

Aronsohn said the loss of routine has been compounded by the loss of in-person education and therapies.

“For many of our folks, virtual learning and virtual therapy just doesn’t work,” Aronsohn said. “And the result is not just a lack of progress. In many cases, it is actual regression.”

Peg Kinsell, director of public policy for the SPAN Parent Advocacy Network, said she’s heard from families that haven’t been able to access any of the services they need. She said virtual services aren’t available or aren’t effective in meeting some people’s needs and that the number of families without technology access is worse than people realize.

“Families of children and youth with developmental disabilities have had their whole safety net pulled out from under them,” Kinsell said.

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Sharon Levine, director of governmental affairs and communications for The Arc of New Jersey, said the main thing she’s hearing from families is that the Department of Children and Families has been denying their requests for respite support.

Levine said there is increased demand on DCF for such services: Most special needs summer camps were not held, and extended family can’t help in some cases if they’re older and COVID-vulnerable.

“You have to think about families who may have had low support needs before the pandemic,” Levine said. “Their child with IDD went to school. That’s where they were getting the bulk of what they needed. But now that child’s home full-time, so now they need more help to get by.”

Michael Symons is State House bureau chief for New Jersey 101.5. Contact him at michael.symons@townsquaremedia.com.