For parents of infants and toddlers, encountering developmental delays early on can be both heartbreaking and confusing, especially when challenges seem to come out of nowhere. In these moments, it’s easy to feel hopeless and overwhelmed about what steps to take.
A recent report by New America found that at least half the babies in the NICU who are referred to early intervention services for developmental delays or disabilities never enroll or receive the recommended treatment. This gap highlights a missed opportunity for families to get support during a vulnerable time.
“Even though we know all the good things that can happen when babies and families receive early intervention, we also know that far too few are receiving it,” Carrie Gillispie, project director for Early Development and Disability at New America, told The Atlanta Journal-Constitution. “It’s the key to setting so many children and families on a course, a solid course for a great long-term outcome.”
Early intervention services, or EI, are part of federal law in the Individual’s Disabilities Education Act, and include screenings, therapy and family support for children with developmental delays.
Although the standards vary state to state, preterm birth or low birth weight automatically qualifies infants for EI in most states. Babies with developmental delays that do not qualify in the hospital will likely encounter a public intervention program again when they enter preschool.
The main problem, however, is the program is deeply underfunded, which causes many infants and children to miss out on life-changing early intervention — support that could make all the difference for their future.
“Every state has an obligation under the federal law to find every single infant that may have developmental delay or disability, and may qualify for early intervention,” Gillispie explained. “The burden is on the state. It’s called the Child Find law, and it’s a big job, and it’s very underfunded.”
According to Gillispie, there are typically only a handful of people doing this job. Georgia, for example, serves only .64% of infants under 1 in early intervention, as of 2023 and 4.4% of children between 2 and 3 years old.
Although referrals to EI services are often made by pediatricians, child care providers and community health clinics, many people don’t realize that families themselves can also initiate a referral.
“A lot of times, families just aren’t aware that they (EI programs) exist, and so it’s a big challenge to raise that awareness,” Gillispie said. “A big part of that is talking to doctors and child care providers to make sure families are aware and understand that it’s low cost or free.”
Each state has flexibility to define its own eligibility criteria for EI, and access to quality health care within a state often influences which children are more likely to be referred.
“Kids could be born 15 miles away from each other and have completely different access to a program that would likely help them all,” said Sarah Gilliland, senior policy analyst at New America.
And the effects of missing out on EI at the right time can be devastating, not just for the child but also the whole family.
“What we do know is that early intervention has such profound impacts for the kids who do get it, that we found reducing parental stress or at least increasing their confidence,” Gilliland said, “which is so hard for everybody, much less if you have a child that is having challenges.”
Unlike IEPs in schools, EI uses an “individualized family service plan,” because “the unit of care is the family,” Gilliland explained. Outside of the expected services, EI also assists with mental health counseling, nutrition services and transportation.
There are also cost-saving benefits to EI at the state level, as providing services to children and early intervention has been known to reduce the amount of spending in special education down the line, Gilliland said.
New America’s report comes at a time when there is ample misinformation and confusion about the causes of specific developmental delays, especially in infants and toddlers. Gillispie and Gilliland hope that although this may not set the record completely straight, it will set it on a straighter path.
“We can only learn truly about child development over time,” Gillispie said.
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