A new state audit paints a troubling picture of the access to important services for children with disabilities. But Black and Hispanic children face even greater barriers.
New York State Comptroller Thomas DiNapoli reviewed records for Early Intervention Programs dated from July 2018 through February 2022 that included 189,000 children state-wide who were suspected or confirmed with a disability.
It found that 27,000 (14 percent) of these kids were never evaluated.
Yet experts say these early intervention programs are critical for children with disabilities.
“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,” DiNapoli said. “The Department of Health needs to address the underlying reasons why children are not receiving the services they are entitled to, why services are often delayed, and how access can be improved.”
“It's tragic. We're failing — we're failing our children,” remarked Laura Chouinard, Niagara Falls parent.
Chouinard tells me Early Intervention Programs for children with disabilities are such a very important window to their future.
But she says she is not “surprised" or “shocked" to learn about state audit findings because she had to fight hard to get services for her five-year-old son, Théo, who has autism spectrum disorder, sensory processing disorder, and visual impairments.
Chouinard says she had to fight for screening to evaluate his lack of speech.
“How hard I had to fight to get services for my son from the day he was diagnosed,” remarked Chouinard. “We brought it up to our pediatrician multiple times and we kept being told 'boys are late talkers — wait it out’ — and something in my mommy instinct said ‘no’, just don't want to wait any longer. I really pushed hard to request for the screening and evaluation."
Chouinard is also an advocate for children with disabilities through her blog "Mothering Through Disabilities: An Unexpected Journey."
“There is tons of research in the field of autism specifically about how critical early intervention is and how intensive early services lay a foundation for progress that will carry that child throughout their lifetime,” responded Stacey Chambers, Early Autism Program Coordinator, The Summit Center in Amherst.
Chambers works at The Summit Center where Chouinard’s son receives services. She blames some of the audit's findings on a lack of providers with long wait lists for services.
“I think it's just really important for everyone to understand that a lot of this is rooted in a lack of providers. It's not even something specific to our area or our state — this is really a nationwide crisis where we don't have providers to provide these early intervention services,” Chambers noted.
Among the 36-page state audit, it recommends the New York State Department of Health (DOH) improve the management of the Early Intervention Program.
DiNapoli’s audit recommends DOH:
- Identify why some children are not receiving services or are facing delays in care and develop and implement strategies to improve participation and timely delivery of services.
- Include specific goals, tasks, and objectives on municipal workplans for improving public awareness and outreach.
- Take steps to understand disparities in accessing EI program services and develop an action plan to better deliver equitable access.
- Regularly verify the provider directory is accurate and up to date to ensure it is useful to families.
- Expedite a new web-based system to manage the EI program, which has been delayed multiple times, and ensure that municipalities are prepared to use it
“What are some of the best advice you could give parents and families and caregivers to be aware of this so they don't get caught up in the process of not having the proper help?” Buckley questioned. “As soon as you can possibly start connecting with other parents who have already done this — they have been my sort of greatest source of support,” replied Chouinard.
