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About a year after Desi Evans’ son Christopher was born, she noticed he wasn’t making sounds or babbling like other young children.
After the mother from Barrington, Illinois – a town west of Chicago — raised her concerns to her pediatrician at Christopher’s one-year check-up, the doctor recommended having him evaluated for a state program designed to help students with disabilities or developmental delays.
The program, known as Early Intervention, serves over 20,000 children and toddlers under the age of 3 throughout Illinois.
But, even though Christopher was found to have a speech delay and approved by the state to receive speech, developmental, and occupational therapies, he was not able to receive service until three months before he turned 3, when children are no longer eligible for Early Intervention.
Christopher, now 3, isn’t alone. Since the coronavirus pandemic hit in 2020, it has become harder for children to get evaluated or start services that are vital to ensuring they are prepared socially, emotionally, and academically for school. Early childhood education advocates say staffing shortages are creating barriers to early intervention services and they are urging state lawmakers to invest another $40 million into next year’s budget for the program.
More than 4,000 children are waiting to be evaluated for services, according to a report by the Illinois Department of Human Services in February. Another 23,000 children have been approved for early intervention services.
The report also found that 7.6% of children who were approved for the Early Intervention program are experiencing service delays — when the state cannot find a therapist to provide services. That’s nearly double what it was in 2019, when 4.7% of children approved for services were seeing delays.
When Christopher was able to receive some services for a couple of months, Evans said he started to talk more and his vocabulary grew.
“He was more attentive and his focus expanded,” said Evans. “Before, he would only focus for maybe like 5-10 minutes at a time when we’re doing an activity.”
Staffing shortages across early intervention
Illinois early education advocates say families face hurdles when accessing early intervention services because the state has a low number of service coordinators, who are responsible for evaluating children and connecting them to therapists, and service providers, independent contractors that provide services such as speech, developmental, occupational, and physical therapies.
In 2023, the state reported about 3,964 providers, a decrease of 6.6% from 2019 when there were over 4,246 providers.
A survey by Afton Partners commissioned by the Illinois Department of Human Services found a high turnover rate of service coordinators due to low wages, lack of benefits, high caseloads, and burnout. That makes it difficult for families to get an evaluation done within a timely matter; often, they are waitlisted.
Even when a child has received an evaluation, services could be delayed if the service coordinator cannot find a therapist to work for a family as was the case for Desi Evans’ son.
According to state law, once parents agree to receive therapeutic services under the Individualized Family Service Plan — a legal document that includes the child’s diagnosis, evaluation notes, and services they will need in early intervention — children should receive services within 30 days. Some families often do not receive services within that time frame.
Alison Liddle, a physical therapist contracted with the state to provide early intervention services, says her practice takes on private clients to keep afloat. Liddle mentioned that one of her staff members was thinking about leaving the practice because they are overwhelmed from trying to pay for student loans and child care.
Illinois is not the only state dealing with shortages. The Individuals with Disabilities Education Act Infant and Toddler Coordinators Association, a nonprofit organization that advocates for early intervention nationally, released a report in 2023 that found 44 states and jurisdictions said they were experiencing provider shortages, especially for speech and language pathologists, physical therapists, occupational therapists, special educators/ developmental specialists, and service coordinators.
Early childhood advocates lobby for more funding
On April 16, early childhood education advocacy organizations from across the state bused hundreds of parents and community organizations to Springfield to ask lawmakers for more money for early childhood education — including a $40 million increase for early intervention.
They say the funding boost could be used to increase compensation for providers, bring in new providers, and increase the speed in which families receive services.
In Springfield, small groups of people in purple and yellow shirts that said “For Brighter Futures” walked around the Capitol building searching for state lawmakers. In some cases, advocates weren’t able to chat directly with legislators, as many were voting on bills on the House floor. Some advocates opted to write letters instead.
Zareen Kamal, policy specialist at Start Early, one of the organizations that bused advocates to Springfield, told Chalkbeat that an increase would “allow for a much-needed rate increase for the workforce and prevent providers from leaving [Early Intervention] due to years of inadequate compensation.”
Unlike service coordinators, service providers are independent contractors. The state reimburses them for providing services to families after billing private insurance. However, providers aren’t paid for transportation, missed or canceled appointments, or receive health care or other benefits. Some providers decide to work in hospitals or the private sector to make more money.
Advocacy organizations such as Start Early, a nonprofit organization based in Chicago, is asking the state to allocate an additional $40 million for early intervention. Over the past four years, the program’s budget has largely remained flat or been cut, shifting between a total of $108 million and $115 million since the pandemic hit in 2020.
Last year, Gov. J.B. Pritzker announced his Smart Start Initiative and allocated more funding to early childhood education. In the first year of the plan, statewide programs received an increase of $250 million. The Early Intervention program received a bump of $40 million last year.
This year, the governor proposed an increase of $6 million for Early Intervention— less than advocates had hoped for.
In a statement to Chalkbeat Chicago, a spokesperson for Pritzker said last year’s increase was meant to cover the 2025 fiscal year.
“The program is funded to cover the more than 25,000 families enrolled in EI services, and this year’s additional $6 million investment – representing a proposed $46 million total increased investment in EI since the beginning of the Smart Start Illinois initiative — will cover projected enrollment growth over the next fiscal year,” the spokesperson wrote.
Desi Evans, the Barrington mother, says Christopher is currently receiving private therapy after he aged out of the Early Intervention program earlier this year.
She still feels guilty that she didn’t push harder to get Christopher services sooner.
“I feel like I failed him, like I should have done more,” said Evans. “I wish I knew what I know now, but I didn’t.”
Samantha Smylie is the state education reporter for Chalkbeat Chicago covering school districts across the state, legislation, special education and the state board of education. Contact Samantha at ssmylie@chalkbeat.org.
