In New York, Hundreds of 3-Year-Olds With Disabilities Are on the Brink of Losing Services

by Megan Conn, New York Reporter, The Chronicle of Social Change

Hundreds of New York toddlers with developmental delays and disabilities may lose access to in-home speech, behavioral, occupational and other therapies next week – because the coronavirus pandemic has prevented them from getting the services approved by their local school district.

The state Department of Health provides special services for children 2 and younger, but once they turn 3, the responsibility falls to school districts, which require a new evaluation. As a temporary fix, in late March the state allowed children who turned 3 during the pandemic to receive services through June 30 – a window that is rapidly closing.

And while most school districts are now scrambling to evaluate children on video calls, the weeks-long pause in evaluations created a significant backlog. Now, with the cutoff date less than a week away, anxious parents and providers are calling on the state to extend the deadline.

Without an extension, the all-important transition to preschool special education, for many, will be in jeopardy. “We are very concerned that services will end abruptly for children who recently turned 3 but who have not yet had preschool special education evaluations,” wrote a coalition of 80 child-serving organizations in a recent letter to Gov. Andrew Cuomo (D). “Given the uncertainty of this pandemic, this deadline risks cutting children off from services for months and months during one of the most critical periods of their development.”

On June 10, the state’s Early Intervention Coordinating Council passed a motion recommending that the Department of Health delay the transition deadline indefinitely until there is a “seamless” transition into preschool special education. Steve Held, longtime vice chair of the council and executive director of the Just Kids Early Childhood Center on Long Island, said services should be continued until at least Aug. 30.

One in 20 New York kids age 2 and younger received early intervention services, and 1 in 10 children ages 3 to 5 received preschool special education services, according to data from a 2019 report to Congress on the Individuals with Disabilities Education Act, which funds both programs.

Early intervention services for infants and toddlers address a wide range of delays and disabilities, including difficulty learning to eat, swallow, speak, walk, regulate behavior and develop fine motor skills. The two most common types of disabilities among preschool-aged children are speech or language impairments and developmental delays, followed by autism.  Both programs pair hearing-impaired children with interpreters who teach them sign language.

Children enrolled in early intervention typically have an easier time qualifying for these. But if a child has already aged out of early intervention, as hundreds of children are set to do next week, qualifying for preschool services is “like starting from square one again,” said Pete Nabozny, director of policy at the Children’s Agenda in Rochester. Advocates worry the time-intensive process may deter families who, on top of caring for a child with special needs, may now be struggling with illness, job loss, or lack of child care amid the pandemic,

“If the evaluation for the transition to preschool education is delayed, does that potentially never happen? Do families get lost in the mix?” asked Kristen Kerr, executive director of the New York Association for the Education of Young Children, one of the 80 signatories to the recent plea for an extension.

Extending the deadline would be cost-neutral for the state, according to Randi Levine, policy director at Advocates for Children, who drafted the letter to the governor.

But those charged with carrying out the evaluations say they are stretched thin trying to catch up with children whose evaluations were delayed over the past three months, while also keeping up with those whose birthdays are fast approaching.

“There’s a whole bunch of children who just got caught in the middle,” said Linda Silver, who oversees a team of evaluators and is the executive director of Little Meadows Early Childhood Center in Queens. “I’m trying so hard to get these kids who have a June birthday through to beat the end of the month deadline, but it’s a Herculean challenge.”

One of the hundreds of parents worried that their children would lose services was Elizabeth Maxwell of Monroe County, whose daughter receives speech, occupational, and physical therapy. Her daughter had been scheduled for an evaluation with her school district on March 24, just before her third birthday, but it was canceled less than a week before, when Gov. Cuomo closed schools across the state to prevent the spread of the coronavirus.

Worried that the clock would run out on her daughter’s eligibility, she scrambled to call anyone she thought might be able to help, from the acting head of the county early intervention program to her state senator and prepared to coach her daughter in case they had to do a last-minute phone evaluation.

Finally, Maxwell was able to schedule an evaluation over a video call, but her daughter only tolerated it for about 15 minutes.

“She didn’t want to participate at all,” Maxwell said. “She got frustrated and actually told them to shut up.”

Ultimately, she thinks her daughter’s struggle to engage over video may have underscored her needs; the school district approved her to continue all of her services through its preschool special education program. But plenty of stress preceded the approval.

Both parents and providers say that kids with disabilities and delays need their services now as much as ever — if not more.

“Kids’ development is not stopping just because there’s a pandemic. In fact, based on emergencies like Hurricane Sandy and Hurricane Katrina, we can predict that kids’ social-emotional needs are going to increase,” said Stephanie David, who advises children’s health policy at Healthi Kids, a Rochester-based coalition. Her daughter, too, received early intervention and special education services, and is now “doing amazing” at age 10.

“It doesn’t help to wait,” David said. “We can’t just get the kids services later.”