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Infants and toddlers with disabilities need more support from NY state, advocates say

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Provided by Stephanie Townsend
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The Children's Agenda
Kim Dooher and Britt Jencick, co-founders of Parents Helping Parents of Monroe County, at a community event at Genesee Valley Park to raise awareness about early intervention services, spring 2021.

Parents and advocates say the recently adopted New York state budget does not deliver on early intervention services for infants and toddlers with disabilities.

Brigit Hurley, chief programs officer with the Children's Agenda, said despite a federal requirement through the Individuals with Disabilities Education Act to provide early intervention services within a timely manner, that’s not the case locally, nor across the state.

“Monroe County has over 200 children right now that are waiting for early intervention services beyond those federal deadlines,” Hurley said. “Children are waiting, families are waiting."

There’s still time for early childhood education to be addressed by the state, she said, through the administrative rate-setting process that takes place in the spring.

The state budget designates $31.5 billion to educational resources across New York. Gov. Kathy Hochul’s office heralds it as the highest spending in state education aid yet.

However, while the budget includes an increase in educational spending, including for universal prekindergarten, some children need extra support earlier in life, Hurley said.

“When children are very young, their brains are still forming, they're very malleable,” she said. “They can catch up a lot quicker and make developmental progress, sometimes resolving developmental issues before they even reach age 3.”

Hurley is part of a movement of early intervention activists pushing for the state to increase the reimbursement rate by 11% for specialists who help newborns to toddlers.

It’s something close to Tiffany Howard’s heart. She’s a preschool teacher and a parent. For her own family, she’s experienced the urgency of early intervention needs for her child. A few years ago, her son Jah’Vier needed speech therapy and other support when he was about 2 years old.

“His speaking regressed. So, he would say ‘mama,’ ‘dada’ and all that stuff, then all of a sudden, he just stopped. And he was just, like, pointing,” Howard said. "They were teaching him a lot of sign language. So with them instilling that in him, that helped me out a lot.”

Jah’Vier was later diagnosed with autism. From her experience, Howard considers these services crucial for kids with special needs. Her son now attends kindergarten.

“He has excelled so well,” she said. “He's speaking very well. He can actually let us know in complete sentences, what he wants, his feelings.”

Kim Dooher, vice president of the Parents Helping Parents Coalition of Monroe County, went through a similar journey with her child. Her daughter Vivian needed early intervention ever since she was an infant. Accessing those services quickly, by the time Vivian was about 5 months old, was “life-changing,” Dooher said.

"When we first found out, we weren't even sure that she'd be able to sit, stand, walk,” Dooher said. “We weren't sure if she would ever be able to communicate with us, that's how significantly delayed her speech was, and now she's a thriving kindergartner.”

Dooher now works with other families to help connect them to specialist services. However, she said there appears to be a shortage of providers.

Hurley said if children end up missing out on these services, it can have long-term effects on their ability to excel in school and reach their full potential.

This story is reported from WXXI’s Inclusion Desk.