Cruel fallout for kids with disabilities
Pandemic and bureaucracy leave thousands with no service: report
Thousands of city infants and toddlers with developmental disabilities missed out on crucial support services through the federally mandated Early Intervention program during the pandemic, a new report says.
Between 3,000 and 6,000 fewer city youngsters enrolled last year in supportive services like speech and physical therapy than in previous years after referrals from pediatricians plummeted by more than 80% at the peak of the pandemic, an analysis from Advocates for Children found.
“Infants and toddlers cannot afford to wait for critically important Early Intervention services,” said Kim Sweet, Advocates for Children’s executive director. “The state and city need to take quick action to ensure young children with developmental delays and disabilities get the services they need right away.”
Federal law guarantees free support for youngsters from birth through age 3 with developmental disabilities like autism through the Early Intervention program, which is managed by the state and city Health departments. Diagnosing disabilities early and starting intervention services at a young age can dramatically improve future academic and social outcomes.
But referrals to Early Intervention and initial diagnoses often come from pediatrician visits — and those visits mostly stopped when New York locked down in March.
As a result, the number of referrals over a four-week period from late March to late April 2020 dropped by 82% compared to the same period in 2019 — from an average of nearly 750 youngsters referred each week in spring 2019 to just 135 referrals a week in spring 2020.
“I’ve never seen a dip like this,” said Marianne Giordano, the senior vice president at Adapt Community Services, an organization that provides Early Intervention services.
“I would say it has dramatically impacted us by more than half or three-fourths the number of children typically referred to us,” Giordano added.
While some of the drop in referrals was unavoidable, Giordano said state officials created needless logistical hurdles by forcing families to turn in hard-copy paperwork
rather than allowing them to submit signatures electronically.
“They expected families to print hard copies in their own homes, sign them and send them back,” Giordano said. “I’ve never seen a funding source who has absolutely turned their back on seeing how we can make this work.”
State health officials said their agency has “flexibility” to allow documentation requirements to be met in the pandemic.
Families already enrolled in early intervention services when the coronavirus hit also had difficulty accessing them, advocates, parents and providers said.
Therapy shifted mostly online in March, but scores of city families lacked the tech devices and reliable internet access to participate. And unlike the city Education Department, which purchased more than 400,000 internet-enabled iPads for schoolaged kids, the government agencies overseeing services for youngsters with disabilities offered minimal direct tech support, families said.
“We live in a shelter, we don’t have internet ... my only option was my phone,” said Iliana Bustamante, the mother of a 3-yearold with autism who was receiving support when the pandemic began in March, in an interview with the Daily News.
“It was terrible. I fell into a depression,” Bustamante said of watching her son regress. “It was like he’d never received the services.”
City Health Department officials say they provided resources for families to obtain free and low cost smartphones.