NEW YORK — Tatyana noticed last summer that her son was developing later than his peers. Months from his second birthday, he knew only eight words — so the Brooklyn mom sought early intervention services to get him back on track.

But help came slowly.

It took three months for the Bedford-Stuyvesant family to receive special instruction, and close to five months for speech therapy. Federal law requires that infants and toddlers referred for services get evaluated within 45 days, receive an individualized plan, and start therapy within 30 days.

“The questions they asked made you feel like you could’ve done more or done something wrong,” said Tatyana, whose last name is being withheld to respect her toddler’s privacy. “But that’s not the big issue. The big issue is getting the ball rolling and the services started.”

Tatyana’s son was one of tens of thousands of infants and toddlers with developmental delays or disabilities in New York State who has gone without early intervention services in recent years, a longstanding problem only exacerbated by the pandemic.

More than 1 in 5 young children referred for support did not receive an evaluation from 2018 to 2022, or results were still pending, according to a new audit from the state comptroller. Referral rates and evaluations also decreased by at least 20% the first year of the pandemic.

On top of that, a large share had to wait longer than legally mandated timelines, and more than half of the age group who navigated the evaluation process did not receive all the services to which they were entitled, such as speech or physical therapy, the figures showed.

“Failure to provide babies and toddlers with early intervention services misses a critical window of opportunity and increases the risk of significant developmental and learning delays, and the need for more special education services in the future,” state Comptroller Thomas DiNapoli said in a statement.

Lynn Su Mordenga, a parent in the suburbs of upstate Rochester, waited six months for physical therapy after the family’s first evaluation in February 2022 revealed her 2-year-old son needed the support.

She suspected he could benefit from speech therapy, too — but she says their service coordinator told her “there was no point for me to try” given backlogs in delivery. The family is still waiting for speech services, though they have sought out local programs in the meantime.

“It’s very unacceptable. That 0-to-3 age is such a crucial age, their brains are developing so quickly,” she said. “If they don’t have the right support at the beginning, it’s going to be a snowball effect after. They’re going to get to preschool age, and they’re going to feel developmentally behind.”

Barriers to service

The reasons for the delays and failures to deliver services are complex, but the audit pointed to a shortage of providers as a key issue.

Roughly 2,000 professionals have left the state program since 2019 for settings with higher wages, while low salaries make it extremely difficult to recruit new talent, according to testimony delivered to lawmakers at a state budget hearing last week. And some who stayed are reimbursed at rates lower today than they were two decades ago.

“There simply are not enough agencies or services to serve all the needs,” said Steven Sanders, executive director of Agencies for Children’s Therapy Services, a statewide association of providers. “It’s really not a complicated issue: The early intervention program does not reimburse at a level that is adequate to sustain salaries or programs.”

The audit also found that some eligible children did not receive support when parents did not officially consent to the program.

The state Health Department reported that approximately 68,000 young children statewide receive early intervention services each year, and the majority of families receive services in a timely manner.

“It’s important to emphasize that the early intervention is a voluntary program,” said Jeffrey Hammond, a spokesman for the agency. “Parents have a right to accept or reject some or all of early intervention services recommended for their child at any time, for any reason.”

But parents may face barriers to formally consenting to services, especially during the pandemic when much of the program shifted online.

Danielle Herring, who helps connect families and service providers through the nonprofit United for Brownsville, is trying to make the parental consent process easier for Brooklyn families. She provides a printer and Wi-Fi in a neighborhood with many family shelters, and helps parents work through potential stigmas, navigate systems and know their rights.

“Some of the families did not know what the services were,” she said. “Information about it wasn’t as normalized in the community that I work in.”

The impact is deeply felt in New York City, where across the five boroughs only half of infants and toddlers receive all mandated therapy in a timely manner, according to data compiled by advocates. A disproportionately large share of those infants and toddlers are Black and Hispanic, or live in the Bronx.

Pressing for cash

Families and providers are demanding more funding in the state budget to bolster early intervention and its workforce. A coalition of nonprofits is calling for at least an 11% increase in reimbursement rates.

“It is devastating when parents are told their child has a disability or a delay, and there are interventions that could help their child make progress, but they can’t get them,” said Brigit Hurley, chief program officer of advocacy organization The Children’s Agenda.

Betty Baez Melo, who leads early-childhood work at Advocates for Children, called for a higher figure for in-person services because teletherapy, while critical during the pandemic, can cause a “two-tiered” system where some kids work with providers at home or in programs, while others receive help only online.

“Getting physical therapy through telehealth can be more challenging,” she said, “and it requires really having an active parent so they’re learning through the provider remotely.”

Hammond, the Health Department spokesman, acknowledged the pandemic’s impact but said the agency has since increased parent outreach through task forces, sharing data with county programs, and a family awareness campaign.

But parents and advocates hope change comes quickly, not only to support young children today but also to intervene before they need more intensive services down the road.

Since starting services in November, Tatyana told the Daily News, her son is rapidly progressing, and knows his animals, colors and other words. On a recent afternoon, he grabbed a puzzle and asked for his mom’s help to open it.

“That was the first time he said ‘open,’ and he just started to put the puzzle together on his own,” she said. “At first, we had to prompt him. Now he was doing the puzzle all by himself — I was amazed.”

© 2023 New York Daily News
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.