Legislative Victory to Ensure Automatic Early Intervention Eligibility for Illinois’ Lead-Poisoned Children

Lead poisoning is the most pervasive environmental health hazard affecting children. According to the Centers for Disease Control and Prevention (CDC), there are nearly half a million children ages 1-5 in the United States with blood lead levels (BLL) above 5 micrograms per deciliter (µg/dL) — the reference value recommended by the CDC for initiation of public health actions, which typically consists of a nurse home visit and an environmental inspection.

Lead is a known neurotoxin proven to amplify the risk of developmental delays, behavioral problems, and learning disabilities. No safe level of human exposure to lead exists, and the harmful impacts of childhood lead exposure can have significant and enduring consequences through adolescence and into adulthood. Studies have consistently shown that even low levels of lead exposure can lead to decreased cognitive, physical and social emotional capacities (see table 1 below).

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Effectively linking children with elevated BLLs to critical services, such as IDEA Part C Early Intervention (available in all 50 states), early on in their exposure can be essential to reducing the impact lead has on their health and development, as the timing maximizes the efficacy of developmental intervention. With this in mind, Legal Council for Health Justice led the charge in Illinois to secure increased access to essential early childhood supports and services for lead-exposed children.

The amendatory language is simple and straightforward. The law’s benefit has the potential to reach the almost 3,000 birth to three-year-old infants and toddlers who are lead-poisoned in Illinois each year. Highlights of P.A. 101-0010 include:

  1. Addition of “exposure to a toxic substance” to the list of medical conditions that typically result in developmental delay. Lead is considered a toxic substance under this new language.
  2. Clarification of the list of medical conditions resulting in high probability of developmental delay to include lead poisoning confirmed by an venous blood draw resulting in an elevated BLL of  5 µg/dL or above.
  3. Access to Early Intervention (EI) – a program that administers therapies and supportive services to young children and their families – for those children with confirmed elevated BLLs. 
  4. Statewide implementation by July 2020.

Lead exposure is one of the most insidious and preventable health risks in early childhood. Intervention rests heavily upon the early identification process. Numerous states, in conjunction with the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Medicaid rules, follow the Bright Futures and American Academy of Pediatrics (AAP) recommendation to conduct blood lead screening tests at ages 12 months and 24 months. By properly following lead screening guidelines, states are better able to identify children with elevated BLLs, intervene early, and potentially change the trajectory of a child’s development by connecting them to EI services as well as public health services such as nurse home visiting and environmental inspection. Unfortunately, an investigation from Reuters reviewed Medicaid and state testing data and found that millions of children in the United States are not being tested in accordance with early childhood blood lead testing requirements. In a review of roughly a dozen U.S. states, only 41 percent of Medicaid-enrolled one- and two-year-olds had been tested. This sweeping gap in blood lead testing leaves children vulnerable to prolonged lead exposure and consequent adverse developmental, behavioral, and educational outcomes. However, when states support and healthcare providers prioritize compliance with testing recommendations, children with elevated BLLs are identified early and, Early Intervention can take advantage of a critical period in children’s lives when their brains are best able to adapt and overcome the prior insult. 

In August 2018, the Legal Council developed an innovative pilot program that established automatic eligibility for Early Intervention services for children with a BLL of 5 µg/dL or above regardless of whether or not eligible children are already experiencing developmental delays. The pilot’s unique shift from a deficit-driven model to a proactive approach of developmental supports foreshadowed the successful passage of P.A. 101-0010.  In fact, year one of the three-year pilot has already yielded valuable lessons learned that include the following observations:

  1. Public Health Departments are vital partners in identifying and referring lead-exposed children to EI. 
  2. There is a significant learning curve for families to understand the importance of EI when their child is not yet displaying a developmental delay.
  3. It is crucial for physicians to celebrate with families when a child’s blood lead level has decreased, while still promoting the benefit of EI services despite this reduction.
  4. Obtaining confirmatory venous blood lead tests after initial capillary testing has been decidedly challenging for both families and healthcare providers. This can prove to be a critical issue in states, including Illinois, where a confirmatory venous blood lead test is required to trigger public health actions and access to EI. 

With this pilot, Legal Council is not only working to equip children and their families with the skills, education, and opportunity to circumvent the negative effects of lead poisoning, but are also finding a way to restructure systems of public health, healthcare, and social services to aid families in overcoming lead’s negative effects. While 19 states now provide automatic eligibility for EI services to children with elevated BLLs (Ohio and Illinois are the most recent states), Legal Council’s pilot and subsequent policy goals for the state of Illinois are unique in their efforts to issue guidance around service provision and provide preventative intervention to children who may not yet be demonstrating delays. The eventual aim is to achieve and inform statewide rollout  by July 2020 of automatic EI eligibility for all Illinois children under the age of three who have venous blood lead levels at the CDC reference value of 5 µg/dL or greater.

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Furthermore, Legal Council is eager to share our Illinois experience with other states and is working 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 programs to increase their impact in the fight against lead poisoning.

Check out Legal Council’s Lead Exposure and Early Intervention Page for more information about this innovative pilot and other resources for lead-exposed kids. Contact Amy Zimmerman, Director Children and Families Partnerships, Legal Council for Health Justice at azimmerman@legalcouncil.org