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

[November 15, 2024]  By Atmika Iyer and Medill Illinois News Bureau

CHICAGO – 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 Champaign, Peoria, Aurora and Chicago, calling attention to staffing shortages and long wait times for families to access early intervention services. The coalition called attention to 3,500 babies and toddlers being left on waiting lists every day to receive early intervention services.

Early intervention is a state-funded program that offers families with infants, toddlers and 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 they may need support to develop in early childhood.

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.

Therapists and providers in early intervention are designated as independent contractors — which means no health insurance, no pay for missed appointments and no fees for transportation to the families they serve, Peoria speech pathologist and Early Intervention Grassroots Alliance leader Sarah Ziemba said.

“Most of the people in my field are women who are married, who have access to benefits and health insurance through spouses. That is the only way they can remain in the field,” Ziemba said. “If the state can’t make decisive action to keep those providers and build up the early intervention program this fiscal year (2026), then that exodus of providers will be even more stark a year from now.”

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 early intervention 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 who told her that her babies wouldn’t make it overnight originally 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.

“What I saw driving from Joliet to Chicago every day for over 136 days, were three babies that were born early and showing signs to me of normal babies outside of the fact of the setbacks that they had,” Heath said. “In all actuality, they need help, they fall behind, because you have these programs out here, and we don’t know about these programs.”

She added that the nurse who put in a referral for Heath and her children to access early intervention services never informed her of the referral 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 for her family. A little over a year ago, her now 6-year-old triplets were diagnosed with cerebral palsy after they aged out of early intervention.

(Capitol News Illinois file photo)

“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 for early intervention with many parents unaware that this service exists.

“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. “Kids are also often seeing delays there. I know I work with one particular family who had concerns months before their pediatrician gave them a referral.”

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 in the same manner as early intervention.

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.

“It takes time to get those students through the process of getting the speech and language

services that they need, figuring out what tools or devices or supports they’re going to need that will help them,” Stout said.

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.”

The request for more state funding comes at a time when Illinois faces a $3.2 billion projected deficit for the 2026 fiscal year, though forecasts predict a $574 million increase to the Illinois Department of Human Services operating budget. Early intervention programs fall under the department, and it remains unclear in a tight spending year whether there can be an increase for intervention programs.

“If we achieved this $60 million increase, and that translated to like a 15% increase for providers,” Ziemba said. “I do think that there would be an immediate improvement, and there’d be an immediate willingness to try to attract providers and see more families, and we would see that impact quickly. I think it would be a complete cultural renewal.”

Atmika Iyer is a graduate student in journalism with Northwestern University’s Medill School of Journalism, Media, Integrated Marketing Communications, and a Fellow in its Medill Illinois News Bureau working in partnership with Capitol News Illinois.

Capitol News Illinois is a nonprofit, nonpartisan news service that distributes state government coverage to hundreds of news outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation.