Toddlers with developmental delays are missing out on help they need. It can hurt them long term

By CLAIRE SAVAGE
Associated Press/Report for America

CHICAGO (AP) — Alexander watches Paw Patrol with fervor, bowls his baby brother over with hugs and does everything with gusto.

What the 3-year-old West Chicago toddler can’t do yet is speak more than a few words. His balance is wobbly and he isn’t able to tell his preschool teachers when he’s hurt or scared.

Alexander qualified for five therapies through Early Intervention, a federal program dedicated to treating developmental delays in babies and toddlers and helping them develop the tools they need to thrive. But his mother, Hilda Garcia, said securing that help felt “like another job.”

Even after repeatedly calling, researching for hours and pushing herself to the limit with work and childcare, Garcia had to wait more than a year for an in-person appointment with an Early Intervention provider.

The federally mandated program is plagued by chronic staffing shortages, leaving thousands of desperate parents frustrated: they know their children need support, they’re aware of proven therapies that can help, and yet some have to wait months or even years for the care they need. Many age out of the program before accessing any services at all.

“When we miss those opportunities to help them at those younger ages, sometimes we are limiting their potential into adulthood,” according to speech-language pathologist Sarah Ziemba, an Early Intervention provider in Peoria, Illinois.

Early Intervention was created in 1986 to address developmental delays in children like Alexander as soon as possible. About one in six children in the U.S. has at least one developmental disability or other developmental delay, according to the U.S. Centers for Disease Control and Prevention.

Since all U.S. states and territories accept federal funding for Early Intervention, they are obligated under the Individuals with Disabilities Education Act to provide services to all who qualify. But almost all states reported Early Intervention provider shortages in 2022, and federal officials say they are still struggling to find staff to meet the needs of children with disabilities.

Service delays in Illinois, where Alexander lives, nearly doubled in 2022, according to Chicago-based early childhood advocacy organization Start Early.

Waitlists — technically not allowed since all eligible kids are entitled to Early Intervention — have increased dramatically and thousands of providers have left the field, according to the Illinois Department of Human Services.

When children turn 3, responsibility for providing special education services shifts from Early Intervention programs to school districts. But those systems are also understaffed and overbooked, Ziemba said.

Families with private insurance can pay for therapy outside the program, but those without the means are often left behind, so “in a way, Early Intervention is contributing to some social inequity,” she said.

Research supports her assessment. A report published this year by the National Institute for Early Education Research found that Asian, Hispanic and Black children are less likely to receive Early Intervention and Early Childhood Special Education services than white non-Hispanic children.

“For Black children, the disparities in access to services are especially large and cannot plausibly be explained by differences in need,” the report says.

Income also plays a role, said lead researcher Allison Friedman-Krauss.

“Poorer states are serving a lower percentage of children, so really suggesting that there is a problem there,” Friedman-Krauss said.

But states need more providers, and there is no way to attract more without better wages, Ziemba said, adding that most Illinois Early Intervention providers get no health benefits or paid time off, and could effectively double their salaries by working in hospitals, schools or nursing homes.

“I really feel like we’re kind of seeing the implosion of the whole program,” she said.

Providers and service coordinators, who connect families with Early Intervention services, are woefully underpaid, according to Darcy Armbruster, a Chicago-area physical therapist who has worked in Early Intervention for 11 years.

Armbruster said she loves the relationships she builds with families, but passion and job fulfillment don’t pay the bills.

“Every month, I have to sit down and reevaluate where I am and if I can keep going and doing this,” she said.

“Providers are just really, really tired of the lack of improving reimbursement, that they don’t see this problem changing,” she said.

Illinois Gov. J.B. Pritzker signed a budget in June giving Early Intervention providers a 10% raise. That will help, Ziemba said, but it won’t make up for the impact of inflation and years of stagnant wages. The state also announced a retention program designed to reward tenured Early Intervention providers, interpreters and service coordinators with payments of up to $1,300 to stay in the field.

The impact therapy can have is palpable. Lindsey Faulkner, a mother of four living in Peoria, got in-person speech therapy sessions for her 2-year-old daughter, Aria, within a month of her referral. She raves about the difference she has seen in her child after a year working with therapist Megan Sanders.

“She was an entirely different kid a year ago,” Faulkner said.

Although Aria was able to start speech therapy promptly, she has been on the waitlist for developmental therapy for more than a year.

Faulkner was “floored” when she learned about the wait times.

“You need to get answers for your child,” she said. “But here, now you have to sit and wait.”

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Savage is a corps member for the Associated Press/Report for America Statehouse News Initiative. Report for America is a nonprofit national service program that places journalists in local newsrooms to report on undercovered issues.

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The Associated Press receives support from the Overdeck Family Foundation for reporting focused on early learning. The AP is solely responsible for all content.