The Evans family of South Barrington waited for 1½ years before Christopher (second from right) started receiving Early Intervention services. Family members are (from left) Victoria, Theodore, Tino, Christopher and Desi. (Provided photo)

First in a series looking at Early Intervention funding in the state

Desi Evans wonders how much further along her 3-year-old son’s development would be if he didn’t have to wait 1½ years for Early Intervention services.

The South Barrington mom was continually told there were no therapists available whenever she would check about getting therapeutic help for her son Christopher.

“Not only did I feel frustration, but my son was diagnosed on the (autism) spectrum, and the majority of doctors say there is a narrow window for development and to not miss out on therapy early on,” Evans said. “It was then that much more frustrating to wait.”

Evans said she and her husband, Tino, knew nothing about the state’s Early Intervention system prior to Christopher being diagnosed as needing speech, occupational and developmental therapies.

“We didn’t know how this all works. They told us the services would be free for us, so we did not want to be too aggressive,” Evans said. “We wanted to be understanding. We were at their mercy. We knew they were doing the best that they can, but best intentions don’t meet the needs sometimes.”

Because of stories like Desi Evans’, early invention proponents are seeking a $40 million increase in the state’s fiscal year 2025 budget to address Early Intervention delays and an EI workforce crisis. Gov. J.B. Pritzker has proposed a $6 million increase for EI services in next year’s budget.

Early Intervention advocates say the governor’s proposal falls short of needed action.

The state allocated $156 million for Early Intervention services in the current budget.

EI advocates contend that immediate action is needed to rectify the denial of crucial Early Intervention services, saying the state is jeopardizing infants, toddlers, and their families, as well as violating their legal rights.

Illinois’ federally mandated EI programs, under the Individuals with Disabilities Act, offer 16 services including therapy and support in homes and natural environments like childcare. However, advocates contend, thousands of children face deprivation and wait lists, disrupting crucial early development. The delays stem from overdue rate increases and inadequate benefits for EI providers, who operate mainly on a fee-for-service basis.

Service delays have more than doubled in Illinois since fiscal year 2022, according to EI advocates. They note that service delays have gone from 4.6 percent of families in FY22 to 9.4 percent of families in fiscal year 2024.

“The first three years are really critical in a child’s development,” said Zareen Kamal, a policy specialist at Start Early, a Chicago-based nonprofit public-private partnership advancing early learning and care. “EI coaching provides models for families. When families are waiting, they don’t receive services and are missing out on a critical period of development for their child.”

Kamal noted that there are more than 27,000 Illinois children in Early Intervention services.

She said that is nowhere near the number of kids who should be getting EI services.

“If we served all the kids who are meeting the program eligibility, it would be double that number,” Kamal said. “There are thousands of families on wait lists for services they are legally entitled to. It’s imperative that we have sufficient funds for them.”

Kamal said half of the proposed $40 million state budget increase for EI would go toward a 10 percent pay hike for service providers, with the other half going toward reducing caseloads statewide.

Karen Berman, senior director of Illinois policy at Start Early, said the EI problem is a statewide issue that needs addressing.

“We have families eligible for services and waiting in all parts of the state,” Berman said. “In very rural area, some of the more specialized therapies are even more scarce. In Chicago, there is a lot of need and there are still shortages. There are demands on services for different reasons, but all over the state we are seeing wait lists.”

Putting more money into Early Intervention now will save the state cash in the future, said Berman, who provides leadership on early childhood systems throughout the state.

“I do think it is important to note that Early Intervention is very cost-efficient,” Berman said. “These are services that are available to all families, and payments come from private insurance, Medicaid, and some federal money.”

Berman said a recent state estimate put the annual cost of EI services at $6,600 per child, with half of that money coming from sources other than the state. She noted that once children turn 3 years old, intervention services are through local school districts, at a cost of $12,000 to $15,000 per student.

Desi Evans spoke with lawmakers for more EI funding at a recent Legislative Breakfast at northwest suburban Harper College. Her son’s story was part of a video shown to legislators in Springfield, advocating for more EI money from the state. Evans said she will keep advocating for EI because she wants to ensure other families don’t go through the struggles her family did.

“Did the system fail my baby? It did, but do we stop there?” Evans asked. “I want for something good to come out of this. All of this is very personal to me.”

Evans said even now, with her son getting needed therapy, there are setbacks.

When their therapist went to a different clinic, “we had to go back to the caseworker and back to square one,” Evans said. “Months later, we found someone.”

Evans and other EI advocates know there are many programs fighting for funding in a limited state budget.

“When you talk about services for young children, there is no better way to invest in the future of our country and community,” Evans said. “Investing in the youngest population has the biggest benefit of making sure there are not too many dollars spent down the line. Focus on the basic level and you can have them functional at a higher level.”

kbeese@chronicleillinois.com