Illinois families of young children with disabilities face challenges accessing early interventions

A few years ago, Roma Garner and her baby moved to DeKalb, Illinois all the way from Ghana, in West Africa.

As she was settling in, Roma began to notice some delays with her son, Luke, who was a year old. But she couldn’t quite put her finger on it. He had met all of the developmental milestones to that point, so maybe he was fine.

One day, at the library, a woman from 4C: Community Coordinated Child Care, handed Garner a pamphlet. When she called, they told her about their free developmental screenings.

“They came in with their therapist, they screened him," she said. "They realized he had a speech delay. He had some occupational therapy needs and a fine motor delay."

Her son needed three early intervention services: developmental, speech and occupational therapy. She had no idea. She didn’t know these programs existed. At her income level, it was free. And it happened completely by chance.

“When we started, he wasn’t even saying up to two words,” said Garner. “Now he's saying so many words, his colors, counting to 20, the alphabets, speaking without prompts; he's signing simple sign language words that are really powerful and important. He's more regulated.”

Luke just turned 3. Early intervention is for children 0-3, so they’ve spent the last months coordinating with his school district to continue meeting his therapeutic needs.

Early childhood professionals call that a success. A child needs help, and therapy is coordinated in a timely, convenient, and affordable fashion. But that’s not always the story in Illinois. It’s a reason why the new Illinois state budget includes $250 million for early childhood programs, including money for early intervention services for Illinois’ youngest children with disabilities.

“There has been, for quite some time, not enough providers to take care of all the services that are required for families throughout the state,” said Angela Hodges. She’s the program manager of Child & Family Connections #3 in northern Illinois. She supervises early intervention case managers and, because of staffing shortages, has a full caseload herself.

In six counties, all early intervention referrals run through her office. So, a parent or pediatrician notices a development delay, sends it to Hodges, who helps the family connect with a therapist. Hodges’ agency serves just over 500 northern Illinois families, mostly in DeKalb County.

She says there are 16 early intervention services they can provide, speech therapy being the most common.

The law states that within 30 days of writing a family plan deciding which services they need children should begin receiving services.

“Maybe 10% are waiting more than 45 days," she said, "up to, I think in some areas, probably higher."

There are tens of thousands of kids statewide receiving services. Sometimes it can even take months to assess whether they need early intervention at all.

Hodges says they serve more children than pre-pandemic, but with less staff. It’s why wait lists have returned over the past nine months.

Even if they can line up a therapist for a family, it might not be convenient. A lot of early interventions happen in the child’s home, but sometimes it’s not possible. Hodges says she knows in Bureau County there are families who have to drive an hour to Peoria twice a week to receive services for their kids.

Otherwise, since the pandemic, they can offer families a virtual therapy option. Service providers are split on how useful video-based early intervention can be, especially since the kids are younger than 3. Samantha McDavid is the regional council manager for Birth to Five Illinois’ DeKalb County region.

“There are some therapies, like speech especially," said McDavid, "that over a screen are just never going to be as effective as if you're in-person and some of the other behavioral therapies where you really need to be in front of that child."

Many families aren’t interested in virtual therapy. Dan Coffey is the president & CEO of Service, INC. It’s a non-profit that runs another Child & Family Connections in northern Illinois. He says they have a lot of families who refuse video therapies. But, because technically they’re turning down services, they’re no longer on a wait list.

Some kids get early intervention services at a daycare too. Agnieszka Moroni is a pediatric occupational therapist.

“Playing is the major occupation for kids,” said Moroni.

She’s been going into homes providing early intervention for the past eight years in the Chicago suburbs.

“The nice thing about being in the homes versus other settings," she said, "is I see the setup of their crib, I see their setup of their highchair at the table; if we're talking about sleeping, I'm there, I can see it, I can problem solve with the bed. If we’re talking about feeding concerns, we can sit down and have a meal together, we can do snack time together."

Finding daycare is really hard, especially for families of kids with disabilities. Some daycare centers don’t allow therapists, so the kid just doesn’t get therapy at all. Some let her in, but with limited space.

“I'll come into a daycare trying to do an obstacle course, for example, but the only place I can work on that is a coat closet, because they're doing something else in the classroom,” she said. “And I'm like, ‘I have a very specific thing I want to work on with this child today!’”

Moroni says kids with disabilities essentially get kicked out of some daycares because the centers realize they don’t have the staff to support them.

After years of hearing those stories, Moroni decided to start her own daycare for kids with disabilities called TOTS therapeutic childcare center. She’s currently in the fundraising process to open the center and hopes they can open next year.

“We want to send parents back to work," said Moroni. "But if there's no childcare, I mean, that's a huge percentage of the population -- any family who has a child under the age of five. I feel like it's kind of a forgotten population.”

Early intervention services aren’t always free either, like they were for Roma Garner and her son. Hodges says family fees were paused during the pandemic but are likely to be return this summer. Depending on family income, it could cost up to $200 a month plus the cost of daycare.

That’s not counting the cost of a daycare center, which can be around $400 a week.

Service providers stress that early intervention can make a difference for families like Roma’s. But the system is complicated, and advocates say issues like staffing can’t be addressed without paying service providers a fair wage.

Despite the complexities, program manager Angela Hodges says parents and caregivers are the experts on their kids. If they feel like something in a child isn’t developing appropriately -- trust their gut.

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