‘Caught between two systems’: NYC family sues over missed Early Intervention services

A close up of a small child playing with blocks

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After a Brooklyn toddler with autism failed to receive many of the therapies she was entitled to, two city agencies refused to provide makeup services to help her catch up, according to a federal lawsuit filed on Tuesday against the city’s health and education departments.

The case concerns a child, identified by her initials R.A., who has limited speech skills and cognitive delays and was eligible for a range of therapies through Early Intervention, a program that provides services to children with various delays from birth to age 3.

The child, who was 2-years-old at the time, was entitled to occupational, speech, and behavioral therapies, but she only received limited sessions of behavioral therapy during her seven months in the Early Intervention program and none of the occupational and speech therapies, the suit claims. 

When the toddler turned 3 last year, the Department of Health and Mental Hygiene, which operates Early Intervention for city residents, refused to provide makeup services for the therapies since she had “aged out” of the program.

The girl now attends a special education preschool. But the Education Department, which is responsible for overseeing special education plans for school-age children, has also declined to provide additional therapies to make up for what she missed during Early Intervention.

The family is “caught between two systems,” said Betty Baez Melo, the director of the early childhood education project at Advocates for Children, which brought the lawsuit along with Morrison & Foerster LLP. “Neither agency is taking accountability in order to provide the child with the services that she didn’t receive.”

The lawsuit contends that R.A. has a right to what are known as “compensatory services” under federal law to make up for lost therapy sessions. The family unsuccessfully attempted to secure compensatory services from the Health Department from an administrative law judge. (Advocates for Children is also involved in a separate federal lawsuit against the Education Department to expedite makeup services for school-age children.)

Receiving therapies early on is crucial for young children with disabilities or delays, according to experts, because their brains are still rapidly developing. Securing services early in a child’s life can also help head off the need for more extensive — and costly — special education services later on.

Though the lawsuit centers on a single child, Baez Melo said the case has implications for other families. About 58% of children who were eligible for Early Intervention didn’t receive all of the services they were entitled to between July 2018 and February 2022, according to an audit released by the state comptroller earlier this year. That period includes the onset of the pandemic, when the number of children receiving services dropped and providers scrambled to provide therapies remotely. 

Spokespeople for the city’s health, education, and law departments did not immediately respond to a request for comment.

R.A.’s mother, a 29-year-old who lives in East New York and is identified in the lawsuit as B.A., said the process of securing services has been a distressing experience.

B.A. suspected her daughter might have a disability early on, as R.A. struggled to make eye contact, often repeated questions instead of answering them, had difficulty sitting still, and did not like touching or eating soft food.

The family hoped Early Intervention services could help with some of those challenges. The city initially offered teletherapy, a setup that would be difficult for the family to access since R.A. has trouble sitting still, and her mother does not speak English fluently, making it more challenging to follow a therapist’s instructions to deliver services to her daughter. 

Although R.A. received some behavioral therapy, known as Applied Behavioral Analysis, it never amounted to the 20 hours a week she was supposed to receive, according to court papers. She also didn’t receive any of her required speech and occupational sessions.

Many families across the city struggle to secure providers, a challenge that is more acute in certain neighborhoods. B.A., an immigrant from Bangladesh, also wondered whether language barriers made the service coordinator take her less seriously.

“I didn’t do anything wrong — we started everything on time, but I couldn’t help my daughter,” B.A. said in Bengali during an interview that was interpreted by her sister. “She needs a lot of help besides what the [Education Department] provides.”

Alex Zimmerman is a reporter for Chalkbeat New York, covering NYC public schools. Contact Alex at azimmerman@chalkbeat.org.

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