When an evaluation showed that her son Matthew had developmental delays, Kailey Yeager and her husband tried to get him the early intervention services he needed — specifically, occupational therapy.
But they had to wait 10 months until he could enroll. It shouldn't have been difficult, Yeager said. Her son had a right to the services under federal law, but there was a shortage of providers.
"Unfortunately, it's a problem too many families face," Yeager said. "There are thousands of children on wait lists in New York right now."
State lawmakers from Rochester are backing a study to find out why.
New York's early intervention program, which provides therapeutic services to children 3 years old or younger who have developmental delays or disabilities, has been in crisis for years. Advocates, lawmakers, and providers have repeatedly said that low reimbursement rates are a major part of the problem. The low rates amount to low pay for the highly-educated professionals who deliver the therapeutic services, making it hard to attract them to the program and keep them in it.
But legislators and advocates are also concerned there may be factors they are unaware of that are hampering the program. That's why Rochester's Democratic delegation in the state Assembly is pooling some of their member initiative money to pay for a comprehensive study of the system.
"Too many kids are being left behind, either aging out of the program before they can access services, or receiving services that get interrupted," Assemblymember Jen Lunsford said during a news conference Tuesday. "And we need to figure out what's going on, how much it's going to cost to fix, and then we can put together a plan to address this issue head-on at the state level."
Lunsford is contributing $175,000 toward the study, while Assemblymembers Harry Bronson, Demond Meeks, and Sarah Clark are putting up $25,000 each. That's a total of $250,000 that will be funneled through The Children's Agenda, which will contract with a research firm to conduct the study.
Lawmakers have tried to get the state to act on such a study, but Gov. Kathy Hochul has vetoed legislation for it due to cost. That's what prompted Lunsford and the other members of the Rochester Democratic delegation to put up money for the statewide study.
"We want New York's infants and toddlers with developmental delays and disabilities to get the life-changing services they need and have a right to," said Brigit Hurley, who manages The Children's Agenda's Kids Can't Wait campaign. "What we need now is a roadmap to a better system, and that is what this research is going to provide for us."
The study will examine the challenges facing providers and families in the early intervention system and identify opportunities for improvement. It will also look at early intervention systems in other states that perform better than New York's.
"This is an opportunity to say, ‘What are we doing in the state?’" Clark said. "'What is working? What is not working? And how can we do it better?'"
