When Ana Argueta took her 1-year-old son to the pediatrician, she was surprised to learn he was behind: The pediatrician wanted him to be able to say more words and improve his communication skills.

The doctor told her to call a number for in-home visits with a professional who knew how to help babies and toddlers develop language skills. It was a game-changer.

Babies and toddlers who are developmentally delayed or who show signs of a disability need professional support as quickly and early as possible, numerous studies show.

“The effects are really remarkable,” said Dr. Mariana Glusman, medical director of the Schreiber Family Center for Early Childhood Health and Wellness at Lurie Children’s Hospital.

Yet more children than ever in Illinois are falling through the cracks. The situation is so alarming that pediatricians, advocates and parents have rallied across the state over the past year to bring attention to the lack of early intervention services.

The crux of the problem is supply and demand.

Post-pandemic, more children are being identified as needing therapies, whether it is speech therapy or physical or occupational therapy. Meanwhile, the number of early intervention therapists has decreased, according to a report recently presented to state lawmakers.

During the COVID-19 pandemic, many longtime therapists dropped out when services were halted, and they have not returned.

State law calls for services to start within 30 days. In 2018, there was virtually no delay in securing an evaluation needed for those services.

Now, 7% of children wait more than a month and a half, according to the report. And the rate of children who are not getting the prescribed therapies or not getting them as often as they should has doubled to about 9%.

“We’re at historically high service delays right now for families,” said Zareen Kamal, policy specialist at Start Early Illinois, which advocates for improvements in early childhood services. ”So, we have, right now, thousands of families [who] are currently waiting.”

The impact of these delays is uneven.

Compared to their population in the state, Black children and children living in rural areas are being underserved, according to the report.

Years ago, one parent advocacy group called out what it termed “redlining” in early intervention. Because the children are so young, the therapy is supposed to take place in their homes. But parents in some neighborhoods report trouble finding therapists willing to travel to their homes. Those parents suspect they are being discriminated against because they live in places considered dangerous.

The recent state report identified a related issue: Children living in poor areas are more likely to get virtual therapy, even as many question whether it is as effective as in-person services.

The service delay data also likely under- states the problem, because it doesn’t account for children who were referred but never end up getting therapy — either because they are put on a waitlist and never get an appointment or other reasons.

As time goes by, the children approach 3 years old, at which point they are no longer eligible for early intervention. Dr. Gina Lowell, director for Community Health for Pediatrics at Rush University Medical Center who runs clinics on the South and West sides, said the time lost can be devastating.

“We see them at 12 months, 18 months, 24 months, and that kiddo hasn’t had a drop of therapy,” she said.

‘It is a lot to juggle’

Occupational therapist Meg Gruber works in suburban Cook County, the area of the state where early intervention has historically seen the best results, according to the report. Still, it is easy for her to see the problems.

At a home in Buffalo Grove, a mom has concerns about her 2½-year old boy’s “attention to task and language acquisition.” He is not yet talking, though he does communicate a little with sign language.

Gruber gets him to sit in a chair with a tray and to focus on a wooden farm animal puzzle. When he grabs a pig, she sings, “And an ‘oink, oink’ here and an ‘oink, oink’ there.”

He has done the puzzle before and knows where the piece goes, but he has trouble fitting it in place. Gruber tells the mom to let him struggle a bit, to let him think about it.

When he gets it, Gruber cheers enthusiastically.

The little boy’s dark brown eyes light up.

When children are young, there’s so much potential because the brain is forming, Gruber says. Seeing the child in their home makes them comfortable and gives her a true picture of where they are.

But the setup of the Illinois early intervention system makes it difficult for therapists like Gruber. As independent contractors, they get paid less than if they worked for a school or a hospital and even less than what therapists make in other states.

“So, if they are hospitalized or they are sick, we’re just not getting paid ...” Gruber said. “I wouldn’t trade it for the world, but it is a lot to juggle.”

Gov. JB Pritzker provided a 10% rate increase for therapists and service coordinators in 2024. But before that, therapists had only had three small cost-of-living increases over 20 years.

Advocates hope to see an increase next year; state officials say they are considering the findings from the report to help develop a budget recommendation for the fiscal year that begins July 1.

Another issue with the program’s setup — that therapists are not paid for travel time— can disincentivize visiting homes far from where they live.

There are some areas therapists do not seem to visit as often. Children in the state ZIP codes with the highest poverty levels are twice as likely to receive therapy virtually than kids in the lowest poverty areas, according to the report. The highest-poverty ZIP codes are all in predominantly Black areas of Chicago: Auburn Gresham, West Garfield Park, South Austin and South Deering on the South and West sides.

Virtual therapy can work, Kamal said, but in focus groups, parents said they didn’t like it, according to the report.

“I don’t even know how you can do anything virtually with a 15-month-old,” said Dr. Tamasyn Nelson Aksoy, a Rush pediatrician.

Taking matters into their own hands

Argueta has had three sons receive early intervention services. She is grateful that therapy kicked in for her children, but only one of the therapists could speak Spanish.

An interpreter came for her two younger children, but Argueta felt like the interpreting cut into her children’s time.

“So, the baby got very confused,” she said.

Argueta is a parent leader with Community Organizing and Family Issues, which is campaigning for changes in early intervention.

Proposals include shifting away from a system of contracted therapists to a state-run centralized system.

Pediatricians are also working to help parents get better access. Rush received a grant to hire a team to support parents.

Glusman is taking it one step further. After talking to parents, she started Speak Up, a group to connect parents whose children might need early intervention services, so they could help each other advocates — not just for early intervention but as their kids go through the formal education system.

“There isn’t necessarily a clear understanding that the squeaky wheel gets the oil,” Glusman said.