Illinois child advocates have created a first-of-its-kind early intervention pilot study to provide lead-exposed young children with the support to overcome potential learning disabilities and developmental delays before they manifest in school.
The three-year study, which began in late summer and is currently enrolling children in three Illinois communities, targets infants and toddlers before they begin K-12 schools, the period when educational learning disparities typically emerge as the children begin to learn lessons that require higher cognitive skills.
The pilot’s goal is to show the usefulness of early intervention so that all Illinois children with blood lead levels of 5 micrograms per deciliter or higher would be automatically eligible for early intervention services at the point when a child’s developing brain is best able to overcome the negative neurocognitive effects of lead exposure.
“We know the successes that come from early intervention for children who have not been lead-exposed, and we know the negative impacts on development from lead exposure, that we have a moral imperative to offer [early intervention] as soon as possible,” said Amy Zimmerman, one of the pilot’s creators and the director of children and families partnerships for the Legal Council for Health Justice, a Chicago-based nonprofit that partners with health providers to address the legal needs of patients to ensure positive health outcomes.
Ultimately, the study’s creators hope the pilot, which is funded by the Illinois Children’s Healthcare Foundation and the Illinois Council on Developmental Disabilities, can be replicated across the country as a national learning collaborative. The study also offers service providers with guidelines on how to effectively provide intervention to lead-exposed children.
Nationally, there are no widespread interventions that address the effects of lead on a child’s brain development, a gap the pilot hopes to fill, said Zimmerman. Early intervention is a federal program in every state that targets children with disabilities in the crucial developmental period between birth and 3 years of age, and provides developmental services, such as behavioral therapy. It also provides parents with the tools to support their child’s development.
Early intervention was established under the federal Individuals with Disabilities Education Act to reduce developmental delays among young children.
Currently, only some states ― and not Illinois ― offer automatic eligibility for early intervention to lead-exposed children, despite the recommendation by a group of experts in a 2015 Centers for Disease Control and Prevention report that lead-exposed children should have streamlined access to assessment, intervention and special education services.
And existing early intervention programs operate under a deficit-driven model where children’s delays aren’t addressed until they manifest, said Zimmerman. If a child were to be automatically qualified for early intervention based on lead exposure as the new study recommends, service providers could then work with families to support the child’s development before they enter K-12.
“That’s a real practice shift for early interventionists to go from a deficit-driven mode to a proactive, interventionist mode,” Zimmerman said.
The idea for the pilot study stemmed from a discovery made by a working group, led by Legal Council for Health Justice, that conducted a survey of states that offer automatic early intervention eligibility for lead-exposed children.
Even among the 18 states that do offer automatic eligibility, none offers guidance about how services should be provided to lead-exposed children, and some of those states only offer the support after the child shows signs of delay, the Illinois working group found.
That approach misses a crucial period to help a lead-exposed child, says one of the pilot’s co-creators, Nicole Hamp, a third-year pediatric resident at Comer Children’s Hospital in Chicago.
Hamp points out that children who have been exposed to lead have lower IQ levels, difficulty with attention and language processing, and behavioral and emotional problems — issues that typically emerge only once a child starts school.
During training, the pilot teaches parents that their child may not necessarily exhibit any obvious symptoms, particularly with low levels of exposure. That way parents understand that even if their child is not showing delays at an early age, intervening early can make a difference later in school.
The hope, said Hamp, is that if children receive this early intervention that later they can function at the same level as their school peers, preventing the educational delays and other issues that researchers have found among lead-exposed children.
Some of the long-term impacts for lead-exposed children include an increased need for special education services, a greater likelihood of having reading disabilities, and increased school absenteeism and high school dropout rates, according to a recently published article in the Pediatric Annals journal co-authored by Zimmerman, Hamp and Brown University Warren Alpert Medical School student Jessica Hoffen.
One of Zimmerman’s goals is also to impart hope to parents who might assume that lead exposure equals a life sentence for their child.
Early intervention “really offers that hope to change that child’s developmental trajectory,” Zimmerman said.
To ensure that lead-exposed children are connected with early intervention services, a key component of the pilot is working directly with service providers to emphasize the importance of taking a child’s environmental history during pediatrician visits by the time the child is mobile, and following the American Academy of Pediatrics recommendation to check a child’s blood lead levels at the ages of 1 and 2 years.
Research has shown that, nationally, pediatricians are not following through on these recommendations. And in Illinois in 2015, only about 26 percent of the children under age 5 received a blood lead test, Hamp said. That percentage should be at least twice as high, she said, noting that 50 percent of Illinois children are on Medicaid and must be tested at those ages according to federal requirements.
During the span of the study, the early childhood experts at the Erikson Institute in Chicago will also evaluate the service guidelines by doing surveys and focus groups to make improvements during the pilot, and will be studying the outcomes of the study’s participants.
This is an important component, said health justice scholar Emily Benfer, who pointed out that the 2015 CDC report on educational interventions for lead-exposed children found that researchers had yet to study the effect that early intervention and educational supports have on lead-exposed children.
There are many studies that show how early intervention affects developmental delays, autism and speech delays, for example, so there are positive indications that early intervention will likewise make a difference for lead-exposed children, said Benfer, who is a visiting associate clinical professor of law at Columbia University Law School where she directs the health justice advocacy clinic.
“We know for a fact ... that children who go through early intervention with those diagnoses, they are much better throughout school than children with the same diagnoses that didn’t get that intervention,” Benfer said. “So that’s why early intervention makes a lot of sense for lead poisoning.”
Providing early intervention would likely save money in the long run. In Illinois, early intervention costs an average of $5,000 to $6,000 per child, according to Zimmerman, who said this is significantly less expensive than what it costs to serve a child in special education.
Despite a consensus among child advocates and experts that primary prevention is the best way to protect children from lead exposure, funding remains the primary roadblock for locating and remediating environmental lead contamination.
“To prevent lead poisoning in the United States for future generations will require a 100 percent commitment on the part of federal, state, local governments and individuals across the country. And I don’t think that we have reached that level of commitment yet,” Benfer said.
This makes early intervention services paramount, she said.
For now, Hamp and Zimmerman said they will focus on the children who continue to be exposed to lead so that they don’t start school behind their peers, or fall behind as their lessons become more challenging.
“Early intervention, in my eyes, is one of the best things we can do for a child who is at risk,” Hamp said. “Because it sets them up for success down the road so that they can contribute to society and become the best version of themselves.”