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 let his preschool teachers know when he’s hurt or scared.

When his mother, Hilda Garcia, had him tested, the youngster qualified for five therapies through a U.S. program dedicated to treating developmental delays in babies and toddlers — treatment designed to help Alexander develop the tools he needs to thrive.

The relief she felt in identifying what he needed was short-lived.

The federally mandated Early Intervention program is plagued by chronic staffing shortages nationwide, leaving thousands of desperate parents frustrated: They know their children need support, they’re aware of proven therapies that could make a difference, but they have to wait for months to get the help they need.

After 14 months of phone calls, hours of research and pushing herself to the limit with work and childcare, Garcia finally landed an in-person early intervention appointment, but even then she couldn’t get Alexander all the therapies he needed. She tears up as she recounts how overwhelming the fight to secure access has been.

“I didn’t have any support,” she said.

‘The earlier, the better’

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 to provide services to kids who qualify under the Individuals with Disabilities Education Act.

But providers are scarce in almost all states. Some children wait months or years for the care they need, and many age out of the program before they access any services at all.

The COVID-19 pandemic worsened chronic staffing shortages, in part because many providers didn’t want to risk infection by entering families’ homes, even when restrictions on in-person visits were lifted, according to Maureen Greer, the executive director of the Infant and Toddler Coordinators Association, which supports the Early Intervention system nationwide.

For similar reasons, families were also less likely to request in-person help during the pandemic. But now the number of children seeking services has rebounded, and states are struggling to find the staff to meet the needs of families with young children with disabilities, according to Katy Neas of the U.S. Department of Education.

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, the responsibility for providing special education services shifts from Early Intervention to school districts. But those systems are understaffed and booked up, too, according to speech-language pathologist Sarah Ziemba, an Early Intervention provider in Peoria, Illinois.

Waiting means skipping precious months of development, while acting early saves money on special education and other services later in life.

“Research really supports that the earlier, the better. And so when we miss those opportunities to help them at those younger ages, sometimes we are limiting their potential into adulthood,” said Ziemba.

Families with private insurance can opt to pay for therapy appointments outside the Early Intervention program, but those without the means can be left behind, according to Ziemba.

“In a way, Early Intervention is contributing to some social inequity,” she explained.

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 there is no way to attract more providers without better wages, Ziemba explained. Early Intervention providers in Illinois are government contractors, meaning they get no health benefits or paid time off, and they can effectively double their salaries by working in other settings such as hospitals, schools or nursing homes.

“People are just done with it, and it has gotten worse even in the last two months,” Ziemba said in late July. “I really feel like we’re kind of seeing the implosion of the whole program.”

As families lose access to the free or reduced-cost therapies, pressure builds on schools to pick up the slack, but they’re short on special education teachers, too.

“In the long term, we’re seeing kids fall farther and farther behind,” said Ziemba, who has done this work for nearly 25 years.

Illinois Gov. J.B. Pritzker signed a budget in June giving Early Intervention providers a 10% raise. That helps, Ziemba said, but likely won’t make up for the impact of inflation and may not be enough to slow the steady exodus of workers. She and another provider say wages were stagnant for years.

In July, the administration 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.

“We remain committed to giving our service providers the support and resources they deserve for caring for our state’s children,” said Alex Gough, a spokesperson for the governor’s office.

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 of working with therapist Megan Sanders.

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

Early on in their sessions, Aria zoomed around the room. Now, Aria can sit and engage with Sanders for most of the session. She looks Sanders in the eye more often, responds to her gentle guidance and is starting to use sign language.

“We’ve come a long way,” Sanders said. “My goal throughout is just to make her more able to express herself.”

When Aria was about a year old, Faulkner noticed that words the toddler had been using started to disappear. “She began screeching for everything that she wanted rather than asking us for help or gesturing.”

Aria qualified for speech, developmental and occupational therapy, and was diagnosed with autism when Faulkner was finally able to secure an appointment with a developmental pediatrician, two and a half hours away in St. Louis. Although Aria started 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.”

Early Intervention providers and service coordinators, who connect families with therapists, are woefully underpaid, according to Darcy Armbruster, a physical therapist who serves DuPage County near Chicago and has worked in the Early Intervention program for 11 years.

Armbruster said it would make more financial sense for her to quit Early Intervention, but she stays because she loves the relationships she builds with families. Still, she has a child of her own to care for, and a mortgage to pay. 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.

For parents, getting help can feel ‘like another job’

Hilda Garcia’s son, Alexander, qualified for five Early Intervention therapies in 2021 — physical, occupational, developmental, behavioral and speech. But the family waited more than a year before he received any of those services in-person.

While they waited, Garcia signed Alexander up for virtual therapy, which didn’t start for more than six months. But virtual appointments weren’t effective, especially for physical therapy.

Garcia tried to do the exercises with her toddler herself, but it never seemed to work. Finally, they were able to secure an in-person appointment through a private provider. They never made it off the Early Intervention waitlist.

The therapist could tell much more by interacting with her son in their home.

“His lips were not able to move the way they should so that speech can come out,” Garcia said.

Garcia, meanwhile, was juggling childcare, work and the almost full-time advocacy needed to get Alexander what he needed. “It feels like another job,” she said.

Garcia, who speaks English, is part of a primarily Spanish-speaking community in West Chicago, and she knows many parents can’t advocate for their kids in a second language.

“I can’t imagine somebody else going through what I went through without speaking English,” she said.

Translators are available, but that adds another layer of complexity to an already onerous process. Communication cuts into hourlong therapy sessions, leaving less time for actual therapy, she explained.

Garcia worries about Alexander. She knows he’s missing vital tools. She is concerned about his safety because he struggles to communicate and has issues with balance.

Just this summer, she said, another child pushed him off a playground set. A report from the school described his injuries as a scratch, Garcia said, but he continued to cry out “Mama, mama” and point to his back.

She gave him Tylenol and asked about “pain” or “hurt,” but he didn’t understand. She called his pediatrician, who recommended a trip to the emergency room, where they took X-rays and tested Alexander’s urine for blood.

When the results came back, they told her he’d had “a significant fall.”

Garcia gently rocks Alexander’s baby brother in her arms as she tells the story. There’s a heaviness in her voice. If he had undergone speech and physical therapy sooner, would Alexander have been able to tell the other child to stop? Could he have kept his balance, preventing the fall?

“I wonder if we would have had the Early Intervention in-person session earlier, if things would have been better by now,” Garcia said.

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By ChrisAnna Mink

Alex, a happy, smiling, nearly 2-year-old boy, was born in February 2020. By the time he turned 1, his development was noticeably behind.

His older siblings, 5 and 7, tried to play with him, but he couldn’t do much. His muscles were weak, and he wasn’t babbling much. Still their exchanges would make Alex laugh, delighting all three kids.  

The pregnancy and delivery had followed the same pattern as his siblings. The big difference was that Alex was born during the early throes of COVID-19, just two weeks before the WHO declared a global pandemic.

“When COVID started, everyone was staying home, including baby (Alex), said the boy’s father. “He didn’t go to day care like the other kids, who started at 3 months.” (The family asked to not use their full names to protect Alex’s privacy.)

The boy had minimal contact with anyone outside of his nuclear family, and his parents worried that missing the enriched environment of day care and company of other children might set him back.

While it’s impossible to pinpoint the causes of Alex’s developmental delays, the pandemic-era concerns voiced by his parents are shared by a growing number of child health experts.

“When parents are depressed or preoccupied like we’ve seen with COVID, they’re not as emotionally available,” said Carol Berkowitz. “It’s not a criticism; it’s the reality.” 

Berkowitz is a pediatrician with expertise in child growth and development at Harbor-UCLA Medical Center. (Full disclosure: Dr. Berkowitz and I are colleagues.)

With safer-at-home mandates, lockdowns and persistent fears about the coronavirus, everyone’s environment at home changed dramatically over the past two years. 

Parents and their infants lost support systems, including extended family, friends, and health care professionals. Some caregivers were absent due to illness or death due to COVID-19. Others were consumed with stress, anxiety or financial woes with unemployment. Some parents, including Alex’s, had to manage an abrupt switch to work-from-home, with the added duties of caring for a baby and kids who were doing remote school. 

Those long stressful days at home can deplete the emotional energy parents need to fully engage with children.  

That really matters, since parent responsiveness is critical for an infant’s healthy maturation. Stress, physical or mental illness, or anything that hampers a caregiver’s interactions with an infant can hinder a baby’s growth and development. 

The pandemic’s impact upon infant and early childhood development, especially long term, is not yet known. The research is nascent and the early results are conflicting, but there are some signals for concern.

One study found that children born during the pandemic had a 22 point drop in their average cognitive score (similar to IQ). From an average of 100 for children born before COVID-19, the scores dropped to an average of 78 for those babies born during the pandemic. The findings stem from a longer-term study in which researchers at Brown University compared the verbal, motor and overall cognitive skills of infants born in 2020 and 2021 with those born from 2011 to 2019. Males and children with mothers with lower educational attainment, used as a proxy for socioeconomic status (SES), suffered greater losses. The researchers postulated that the environmental changes, especially less parental availability, contributed to the decline.

One big caveat: The study is a preprint and the paper has not completed peer review. 

In another trial from the Babylab at Oxford Brookes University in England, 600 children, ages 6 to 36 months, were followed online to monitor their vocabulary and cognitive development during COVID-19, from spring to the winter of 2020. They found that children who continued to attend high-quality early childhood education centers had enhanced development, compared to those children quarantined at home. The authors said larger benefits were noted for children from lower socioeconomic backgrounds.

Some parents are worried that even among kids who attend preschool, masks will impede their children’s development. But the early data suggest that masking and the obscuring of facial expressions may not be as detrimental to young children’s development as feared. One reason is that children do not rely solely on facial expressions for gauging the emotions of adults.

In addition, infants and young children at home generally have unmasked caregivers, their main models for learning facial expressions. By 5 months, the majority of infants can identify emotional expressions, such as a sad face. By the time they’re 5 years old, children can identify emotions on par with adults.

But, masks do appear to hinder young children’s recognition of some emotions, according to a recent report in JAMA Pediatrics. In that study, Swiss researchers tested the ability of 276 children ages, 3 to 5, to recognize joy, sadness and anger in photos of adult faces with and without masks. More children were able to identify joy and sadness in unmasked compared to masked adults, but there was no difference when it came to recognizing anger.

In another study, University of Wisconsin researchers tested older children’s abilities to read emotions. Eighty children, ages 7 to 13, were shown photos of adults with uncovered faces, wearing surgical masks or wearing sunglasses. The children were better at inferring emotions of uncovered faces but could still recognize emotions in photos of adult faces with masks — more accurately than for those wearing sunglasses.

One reason masks may not be as big a hindrance as feared is that the area around the eyes, including the eyes, eyelids, eyebrow, upper cheeks, and forehead, is essential for conveying emotions, as psychologist Robyn Koslowitz writes in Psychology Today. Even, young children are able to identify fake smiles, explaining that “it doesn’t reach the eyes.”

“I am not despondent about them, but they need more attention, modeling and opportunities for social interactions,” said Berkowitz of kids living through COVID-19.

Alex had those opportunities. He participated in early intervention at Regional Center and quickly caught up on his motor and language skills. His parents think having some return to normalcy, including starting a day care program last August, was also important in his rapid improvement.

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