An Innovative Pilot Program to Provide Early Intervention for Illinois’ Lead Poisoned Children

Lead poisoning is the number one environmental health hazard affecting children. According to the CDC, over half a million children ages 1-5 have blood lead levels above 5 micrograms per deciliter, the reference level at which the CDC recommends public health actions be initiated.

Yet, there is no known safe level of human exposure to lead, and the harmful effects of childhood lead exposure can ripple out through adolescence and adulthood, imparting lifelong consequences on the social and learning abilities of a child. Research demonstrates low-level lead exposure can result in decreased IQ, decreased cognitive performance, impaired executive functioning, decreased reading readiness with increased rates of reading disabilities, and increased incidence of ADHD and behavioral and mood disorders. All of these outcomes can have a significant impact on a child’s future, including impaired academic performance, underemployment, lower socioeconomic status, increased arrests, and, ultimately, decreased quality of life. The CDC writes that the consistent link between low-level lead exposure and the reduced ability of children to do well in school suggest that lead exposure is responsible for a significant and modifiable effect on the achievement gap.

Currently, no widespread interventions address the negative neurocognitive effects of lead exposure, yet the promise of early childhood services cannot be ignored. Every state participates in IDEA Part C Early Intervention. EI works to reduce developmental delays, and many, including the CDC, believe that intervening early can help children affected by lead. As a result, Legal Council for Health Justice is leading the charge in Illinois to advocate for the adoption of automatic early intervention eligibility and services for lead-exposed children because they have a diagnosed medical condition that typically results in delay. The goal with automatic eligibility is to take advantage of the critical period in children’s lives when their brains are best able to adapt and overcome prior insult, enabling lead-exposed children to produce positive developmental outcomes.

Beginning in August 2018, Legal Council’s innovative pilot program will roll out automatic eligibility for Early Intervention services for children with a past blood lead level of 5 or above in three Illinois locations with high lead burdens – Cicero, Berwyn, and Rockford, IL – regardless of whether or not eligible children are already experiencing developmental delays.

Legal Council will work with the Erikson Institute, the nation’s premier graduate school in child development, to assess the implementation and outcomes of the pilot project on children, families, Early Interventionists, and physicians. The use of a community-based participatory research (CBPR) approach will elicit stakeholder feedback to build upon stakeholders’ wisdom using a methodologically rigorous research process. Evaluation of the study will be both formative and summative, providing data to improve the program in addition to data measuring child and family outcomes as a result of receiving EI services. The children will be followed for three years.

With this pilot program’s unique proactive approach, Legal Council hopes to give children and their families the skills, education, and opportunity to overcome the negative effects of lead poisoning, but also to find a way to restructure the systems of public health, medicine, and social services to help ensure families overcome its effects. While 15 states provide automatic eligibility for EI services to children with elevated blood lead levels, Legal Council’s pilot program and subsequent policy goals for the state of Illinois are unique in their efforts to issue guidance around service provision and provide proactive, rather than deficit-driven, services to children who may not yet be demonstrating delays. The eventual aim is to achieve and inform state-wide rollout of automatic EI eligibility for all Illinois children under the age of three who have blood lead levels at the CDC reference value of 5mcg/dL or greater. State-wide rollout would benefit thousands of at-risk children each year, most of whom are not currently eligible to receive EI.

Legal Council is eager to share our Illinois experience with other states and is looking to form a national learning collaborative. Lessons learned should help inform and influence expansion of automatic Early Intervention eligibility and services for lead-exposed children across the United States, as well as provide an avenue for Medicaid to increase its impact in the fight against lead poisoning. Currently, as part of Medicaid’s Early Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, all children enrolled in Medicaid are required to receive blood lead screening tests at ages 12 months and 24 months. Additionally, many states mandate tests for all children determined to have lead exposure risks. Yet, even with these requirements, millions of children remain untested, thwarting opportunities for primary prevention and continuing dangerous lead exposure. When prevention fails and children are exposed to lead, the medical and public health systems, with interventions like environmental inspection and chelation therapy at high levels of exposure, focus on eliminating immediate danger and preventing continued exposure but do not address the long-term consequences of lead poisoning on children’s brains, learning, and behavior.

Early Intervention services would bridge this gap to provide a proactive form of intervention for lead-exposed children, and, given the pre-existing relationship in many states between Medicaid funding and EI services, open up a valuable place for Medicaid to expand its impact on a vulnerable population. Indeed, according to the 2014 ITCA Finance Survey, 40 states, including Illinois, use Medicaid to fund Early Intervention services. The expansion of EI services to lead-exposed children provides a real opportunity for Medicaid to concretely build on its pre-existing commitment to lead poisoning prevention.

Read Legal Council and the Erikson Institute’s press release for more information about this innovative pilot opportunity for lead-exposed kids. Contact Amy Zimmerman, Director Children and Families Partnerships, Legal Council for Health Justice at