Families, providers of early intervention services seek $60 million in new state funding

Early childhood intervention advocates are calling on the state to increase funding by $60 million to better support children with developmental delays and disabilities who are on long waiting lists for the critical services and care.

“Babies can’t wait” is the rallying cry for Raising Illinois, the coalition championing the request for new funding in the upcoming fiscal year budget. They held rallies from Oct. 22 through Nov. 1 in nine cities, including Aurora and Chicago, calling attention to staffing shortages and long wait times to access early intervention services. The coalition called attention to 3,500 babies and toddlers left on waiting lists every day to receive services.

Early intervention is a state-funded program that offers families with children up to age 3 access to speech therapy, physical therapy, occupational therapy and more support if the child has a developmental delay or disability. The goal is to help children and families get the necessary resources to address development, speaking and mobility, as well as physical, cognitive and emotional abilities.

The extra funding would help attract more therapists and providers in early intervention. According to a report published by Raising Illinois, around 500 early intervention providers have left the profession every year since 2019 in the state.

Gov. JB Pritzker and lawmakers approved a measure creating a Department of Early Childhood earlier this year. His press secretary, Alex Gough, declined on Monday to comment further on the request for a $60 million increase in early intervention programs. The current fiscal year 2025 budget includes a $162 million General Revenue Fund appropriation for early intervention services, which marked a $6 million increase from the previous year.

The shortage of staff has increased wait times for families hoping to get services before their children age out of the program. With an 8% delay in service, according to the Early Intervention Statistical Report released in September, some Illinois parents are unable to receive the full scope of services they could have access to, while providers are balancing an average caseload of 49 per worker.

Some parents also don’t know about the services.

Karen Heath, 41, of Joliet, had triplets born almost three months premature. While her newborns automatically qualified for early intervention, she said, the doctors did not tell her about the services. All they offered was training an hour before the triplets were discharged, connected to machines the infants would need at home, she said.

She added that the nurse who put in a referral for Heath and her children to access early intervention services never informed her or explained what early intervention services were. While they were able to get physical therapy, consistency with other therapies like speech and occupational has been a challenge. A little over a year ago, her now 6-year-old triplets were diagnosed with cerebral palsy.

“From what the specialist said, all of them had bleeds on the brain from being born so early. So, why they waited till they were 4 to give them a diagnosis, that I don’t know,” she added.

Pediatric physical therapist Darcy Armbruster echoed Heath’s sentiment that current wait times are frustrating, amid an undercount in children who qualify.

“We know that we’re already having capacity issues for meeting the kids’ needs for those who are getting identified and referred to the system. We also know that we are under-identifying children,” Armbruster said.

Children with developmental delays or disabilities that remain unaddressed as they enter preschool are often met with under-resourced teachers and school therapists who aren’t able to offer one-on-one support.

Erin Stout, program director at Peoria Bright Futures preschools, said teachers are seeing “a huge delay in speech” and having a hard time helping a larger group of students whose needs have not been met by or identified for early intervention services. She said that when toddler students can’t communicate their needs, they become frustrated with a “snowball effect” in the classroom.

For Stephany Valencia, 28, of Aurora, her son was able to receive speech therapy after her child care provider informed her about early intervention services when her son was a little older than 2. He received six months of speech therapy before he aged out of the program. Valencia said that while the therapy was helpful, her son, now 7 years old, is having trouble with speech in school.

“It’s so frustrating for my child to struggle with communication — I was so relieved when I was taught about the program. It gave me hope,” Valencia said. “My child, he got six months of early intervention, then another year of early childhood special education — a year-and-a-half total. He’s still struggling, sometimes his bilingualism is blamed for it.”