Pediatric Annals

Special Issue Article 

Advocating for Automatic Eligibility for Early Intervention Services for Children Exposed to Lead

Nicole Hamp, MD; Amy Zimmerman, JD; Jessica Hoffen, BA

Abstract

Lead poisoning remains one of the most prevalent and preventable environmental health hazards affecting children. Low-level lead exposure has been shown to significantly increase the risk of learning disabilities, behavioral problems, and developmental delay. It also has substantial social implications as lead toxicity disproportionately affects children from low-income, ethnic minority households. Early Intervention (EI) is a state-based federal program (Part C of the Federal Individuals with Disabilities Education Act) created to support the development of children from birth to age 3 years who are experiencing or who are at risk for developmental delay. In 2016, an Illinois EI and Lead Workgroup was established to address the best practice of offering EI services to children who have been exposed to lead. This work serves as a template for advocates and health providers in other states to establish automatic eligibility for EI services at low levels of lead exposure, while also demonstrating the capacity to serve these children without overwhelming the state's EI system. [Pediatr Ann. 2018;47(10):e413–e418.]

Abstract

Lead poisoning remains one of the most prevalent and preventable environmental health hazards affecting children. Low-level lead exposure has been shown to significantly increase the risk of learning disabilities, behavioral problems, and developmental delay. It also has substantial social implications as lead toxicity disproportionately affects children from low-income, ethnic minority households. Early Intervention (EI) is a state-based federal program (Part C of the Federal Individuals with Disabilities Education Act) created to support the development of children from birth to age 3 years who are experiencing or who are at risk for developmental delay. In 2016, an Illinois EI and Lead Workgroup was established to address the best practice of offering EI services to children who have been exposed to lead. This work serves as a template for advocates and health providers in other states to establish automatic eligibility for EI services at low levels of lead exposure, while also demonstrating the capacity to serve these children without overwhelming the state's EI system. [Pediatr Ann. 2018;47(10):e413–e418.]

There are approximately 500,000 children in the United States between ages 1 and 5 years who have blood lead levels (BLLs) greater than 5 mcg/dL, which is the reference level at which the Centers for Disease Control and Prevention (CDC) recommends public health actions be initiated.1 Despite legislation passed in the early 1970s to remove lead from paint, lead-based paint remains responsible for the majority of lead exposures. In Illinois, 65% of homes were built before 1978, including 81% of homes in the city of Chicago. Of those homes, lead-based paint remains present in 59% of them.2 Other important sources of lead include dirt and gravel near industrial plants, major roadways, or at the sites of previously demolished homes/buildings; foreign and domestic consumer products; and water from pipes made or soldered with lead.3

The national spotlight on Flint, Michigan's water crisis has brought issues related to lead poisoning to the forefront. However, Flint is far from the only area bearing the burden of lead. For years, Illinois' children have had one of the highest rates of lead poisoning in the nation. In 2015 alone, 10,322 Illinois children age 6 years and younger had BLLs at the current federal reference value of ≥5 mcg/dL, and 1,925 of those children met the then Illinois reference value of ≥10 mcg/dL2 (as of August 2018, the Illinois reference level is 5 mcg/dL).4

The Toxic Effects of Low-Level Lead Poisoning

Lead has long been recognized as a toxin because at high levels, patients with lead poisoning display symptoms ranging from headache, abdominal pain, and constipation to encephalopathy with seizures, altered consciousness, coma, and/or death. However, since the late 1970s, a growing body of research demonstrates that lead causes irreversible, asymptomatic effects at levels far below those previously considered safe. Lower-level childhood lead exposure has been linked to impaired speech and language processing, decreased attention, worse classroom performance, and lower intelligence scores.5 It has been estimated that IQ declines by about 7.5 points for a lifetime average blood lead concentration of up to 10 mcg/dL,6 and it has been shown that test scores decline as BLLs increase, an effect that is clear at levels <10 and even <5 mcg/dL.7 In one study, children with higher levels of lead in their blood were 7 times more likely to be high school dropouts, 6 times more likely to have a reading disability, and more likely to have a lower class standing and higher rates of absenteeism.8

Children with a history of lead exposure have additionally demonstrated an increased need for special education services9 and increased failure rates on reading and math standardized examinations.10 Children with BLLs of >2 mcg/dL have more than a 4 times increased risk of attention-deficit/hyperactivity disorder (ADHD), with approximately 1 in 5 cases of ADHD in the US being attributable to lead exposure.11 People with a history of lead exposure are at 4 times increased risk of delinquent behaviors12 and have an increased risk of being arrested as an adult.13 They have also been found to have decreased brain matter in the prefrontal and anterior cingulate cortex (areas of the brain responsible for executive functioning and mood regulation),14 a finding that is consistent with the known neurobehavioral outcomes of lead exposure. Given the research, it is clear that exposure to lead in childhood can substantially decrease quality of life and contribute profound costs to society (Figure 1).

The ripple effects of lead poisoning, both from the perspective of the individual and from that of society. Reprinted with the permission of Springer from Weinberg.22

Figure 1.

The ripple effects of lead poisoning, both from the perspective of the individual and from that of society. Reprinted with the permission of Springer from Weinberg.22

While the effects of low-level lead-exposure have become more widely documented and understood, the CDC has incrementally lowered the reference BLL at which public health actions are recommended from 60 mcg/dL in 1970 to 5 mcg/dL in 2012. Of note, 5 mcg/dL is a reference value that corresponds to the 97.5th percentile of the National Health and Nutrition Examination Survey's blood lead distribution data in children from 2007–2008 and 2009–2010.15 Additionally, the terms “toxic level” and “blood lead level of concern” are no longer recognized by the CDC because no BLL has been proven safe.16

Treatment and Prevention

At BLLs of 45 mcg/dL and higher, chelation therapy might be recommended to avoid acute encephalopathy that can lead to seizures, coma, and death. Although highly successful in reducing mortality rates due to lead poisoning, chelation therapy does not affect the chronic neurocognitive effects of lead toxicity.17 Once the initial course of chelation is completed, ongoing monitoring of BLLs is required.

Primary prevention is the key component in the war against lead, yet it has proven to be a long-term, uphill battle. Thus, it is important to consider methods for helping children who have already been exposed to lead and who are at risk of suffering the consequences. To that end, in April 2015, the CDC released a report suggesting educational interventions for children affected by lead, specifically highlighting the role of early childhood programs, like EI, that take advantage of a time in a child's life when the brain retains incredible neuroplasticity and thus is most able to overcome or adapt to prior insult.18

Early Intervention

EI is a program established in 1986 pursuant to Part C of the Federal Individuals with Disabilities Education Act (IDEA).19 It was created to enhance the development of infants and toddlers with disabilities between birth and age 3 years and to minimize potential developmental delay by providing direct services and teaching families to incorporate opportunities for learning into daily activities and routines. Ultimately, EI seeks to lower education costs by reducing the need for special education services. According to Federal guidelines (IDEA 34 CFR 303.21) eligible children must:

  1. Have a delay (30% in Illinois) in one or more of the following areas of development: cognitive, physical (including vision and auditory), communication, social/emotional, or adaptive;

  2. Have a medically diagnosed condition that typically results in developmental delay including conditions such as chromosomal abnormalities, sensory impairments, inborn errors of metabolism, disorders reflecting disturbance of nervous system development, severe attachment disorders, and disorders secondary to exposure to toxic substances.

At a State's discretion, eligibility criteria may include children at-risk of experiencing developmental delays because of identified biological or environmental factors as defined in IDEA 34 CFR 303.5.20 Additionally, more than 10 years ago, IDEA Part C regulations were amended to allow states to include “disorders secondary to exposure to toxic substances” as an example of a medical condition that states may adopt for children to automatically qualify for EI services.

Data from the 2007 National EI Longitudinal Study (NEILS) as well as state and national yearly reports have proven EI's success. NEILS evaluated more than 3,000 EI enrollees in 20 states, of whom 64% were enrolled for developmental delay, 20% for a diagnosed condition, and 16% for an at-risk condition.21 The study revealed that infants and toddlers participating in EI experienced improved motor, social, and cognitive functioning, as well as increased acquisition of age-appropriate skills. Overall, 42% of children who received EI services were not enrolled in special education at the time of kindergarten.21

Lead is the number one environmental health hazard faced by children today. Given the proven efficacy of EI, it is both logical and ethically imperative that we offer EI services to children who have been exposed to lead, thereby intervening at a time when services are likely to be the most effective and the least costly.

Advocacy in the State of Illinois

In 2016, a workgroup led by Legal Council for Health Justice was convened to investigate offering automatic EI eligibility to Illinois children who have been poisoned by lead. The EI and Lead Workgroup includes advocates, doctors, EI providers and administrators, and public health agency staff from across the state. The workgroup implemented a step-by-step approach including a literature review on the health and developmental effects of lead poisoning; a national survey of state requirements for EI automatic eligibility; analysis of the distribution of children with elevated BLLs across Illinois; determination of the feasibility of offering automatic eligibility for lead-exposed children at BLLs of 5 mcg/dL and higher given the capacity of Illinois' EI system; and development of service guidelines to support providing EI services to children with a history of lead exposure.

The survey (Table 1) of state requirements found that 18 states have automatic EI eligibility for children exposed to lead as a medical condition with a high probability of developmental delay, although the BLLs at which services are offered vary widely. The survey also found that, as of 2016, none of the states that offer automatic eligibility to children exposed to lead issue guidance about service provision. The states we were able to contact clarified that children who were lead-exposed, although eligible for EI, receive services only once delays manifest.

Early Intervention Eligibility Criteria in the United Statesa

Table 1:

Early Intervention Eligibility Criteria in the United States

Data regarding the prevalence of children younger than age 3 years who were found to have elevated BLLs were collected from the Illinois Department of Public Health, the Cook County Department of Public Health, and the Chicago Department of Public Health. The data were sorted to look at the distribution of children exposed to lead across Illinois' 25 Child and Family Connections (CFCs) sites, which serve as the point of entry to EI. Analysis revealed that in 2014, 6,283 Illinois children younger than age 3 years had a BLL of 5 mcg/dL or higher. This number decreased to 5,063 in 2015 and increased to 5,123 in 2016. When mapping the 2016 data by CFC, the total number of children with elevated BLLs ranged from a low of 28 children in CFC #25 at Illinois' northern border to a high of 422 children in CFC #11 in Chicago.

To predict the effect of serving children who are exposed to lead in Illinois' EI system, and to decide what BLL of eligibility would be feasible given EI's capacity, the workgroup developed a mapped overview of predicted increases in the number of children that would be served at each CFC. Due to its use as the CDC reference value, a BLL of 5 mcg/dL was used as the minimum eligibility cutoff. Based upon the understanding that some families may not desire EI services and a percentage of children may already receive EI through other qualifiers, it was estimated that 50% to 75% of children who would become eligible due to an elevated BLL would enroll in EI. BLL distribution data were then projected for 2017 using an assumed average yearly decline of 10%. This was a conservative estimate based upon a mean average decline of 16.2% and a median average decline of 10.7% over 10 years for children age 6 years and younger with BLLs of 5 mcg/dL and higher. The estimated rates of EI enrollment were then applied to 2015 and 2016 BLL distribution data and 2017 data projections.

Based on this analysis, in 2016, 12 CFCs would have seen a more than 20% increase in the number of children enrolled in services; however, this number would have decreased to seven CFCs in 2017 (Figure 2). After discussion of this data and the availability of services likely to be utilized by children who are exposed to lead (eg, developmental therapy), it was determined that Illinois' EI system has the capacity to serve and therefore extend automatic eligibility to children with BLLs ≥5 mcg/dL.

Maps of the Illinois' Child and Family Connections (CFC). The colors indicate the percent increase in new Early Intervention (EI) recipients per CFC if Illinois established automatic eligibility for EI at blood lead levels of 5 μg/dL and higher. Green, 0%–10%; light green, >10%–15%; yellow, >15%–20%; red, ≥20%; grey, data are not displayed.

Figure 2.

Maps of the Illinois' Child and Family Connections (CFC). The colors indicate the percent increase in new Early Intervention (EI) recipients per CFC if Illinois established automatic eligibility for EI at blood lead levels of 5 μg/dL and higher. Green, 0%–10%; light green, >10%–15%; yellow, >15%–20%; red, ≥20%; grey, data are not displayed.

After establishing the feasibility of extending automatic EI eligibility to children with elevated BLLs, the workgroup began to discuss how to support provision of EI services to this population given that children who have been poisoned by lead typically do not show signs of delay until at least school-age, and historically, EI has operated from a deficit-driven model, serving children only in areas where delays are apparent. The workgroup concluded that effective adoption of automatic EI eligibility would only be possible if detailed guidance was provided. A service guidelines document was developed for EI providers to reference, which details items including the possible neurocognitive effects of low-level lead poisoning and developmental areas of concern for children exposed to lead, tools and suggestions for providing individualized services and building parent capacity, nutritional recommendations, and public health department resources. The service guidelines will be evaluated and improved through a pilot study being conducted in two Illinois CFCs.

Next Steps

In Illinois, next steps include guaranteeing automatic eligibility to EI services for all children with BLLs at 5 mcg/dL and above, as well as ensuring adoption of the service guidelines across the state. The pilot, funded by the Illinois Children's Healthcare Foundation and the Illinois Council on Developmental Disabilities, began late summer 2018 in two Illinois CFCs (#1 and #7). The pilot is working to enroll children with BLLs at or above 5 mcg/dL in EI services. Participating EI providers will serve these children using the service guidelines document. Feedback is being collected on the EI referral process, strengths, and areas for improvement within the service guidelines document, and family receptiveness to EI participation. An additional pilot evaluation, conducted by the Erikson Institute, will use surveys and focus groups to inform further improvements to the service guidelines, EI provider education, and methods of physician and family outreach. Within the evaluation, child and family assessments will be conducted upon entrance, annually, and at EI exit to determine whether children are remaining on track developmentally. Future research is needed to evaluate the impact of EI on mitigating the effects of lead exposure via a longitudinal study comparing the academic performance, IQ, and achievement outcomes of school-aged children who receive EI to those who do not receive EI for this condition.

A similar model of advocacy to that employed by the EI and Lead Workgroup in Illinois should be considered in all states not currently offering automatic eligibility for EI services to children with a history of low-level lead exposure. For states that offer automatic eligibility but do not guarantee service provision, the service guidelines document can serve as a best practice template. It is the responsibility of pediatricians, policymakers, and child advocates across the country to ensure more is done to support families of children who are at risk of lifelong harm due to lead exposure. Guaranteeing automatic eligibility to EI for children who are exposed to lead in every state is an excellent, and seemingly necessary, place to start.

Conclusion

Despite the large and growing body of research supporting the deleterious effects of low-level lead exposure on the developing brain, services offered to children with elevated BLLs remain remarkably insufficient. Most of the advocacy work has been aimed at reducing and preventing lead exposure. However, these efforts do little for families of children who have already been exposed to lead. Data support that EI works and that intervention is most effective when provided early. Thus, it is imperative that we address the known areas of development in which children with a history of lead exposure are likely to have deficits, before they reach school-age. The efforts of the EI and Lead Workgroup in Illinois highlight the necessity of moving EI from a deficit-driven approach, to a proactive, prevention-driven approach to ensure that young children who are exposed to lead receive developmental supports to mitigate current or to prevent future deficits.

References

  1. Centers for Disease Control and Prevention. Lead. https://www.cdc.gov/nceh/lead/. Accessed September 24, 2018.
  2. Fukum F, Simpson E, McAffee K. Illinois lead program 2015 annual surveillance report. http://www.dph.illinois.gov/sites/default/files/publications/lead-surveillance-report-2015-122116.pdf. Accessed October 2, 2018.
  3. Centers for Disease Control and Prevention. Sources of Lead. https://www.cdc.gov/nceh/lead/tips/sources.htm. Accessed October 2, 2018.
  4. Illinois General Assembly. Public Act 100-0723. http://www.ilga.gov/legislation/publicacts/fulltext.asp?Name=100-0723&GA=100. Accessed October 2, 2018.
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  16. Centers for Disease Control and Prevention. Low level lead exposure harms children: a renewed call of primary prevention. https://www.cdc.gov/nceh/lead/ACCLPP/Final_Document_030712.pdf. Accessed October 2, 2018.
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  18. US. Department of Health and Human ServicesEducational Services for Children Affected by Lead Expert Panel. Educational interventions for children affected by lead. https://www.cdc.gov/nceh/lead/publications/Educational_Interventions_Children_Affected_by_Lead.pdf Accessed October 2, 2018.
  19. Chapter 33--Education of individuals with disabilities. http://uscode.house.gov/view.xhtml?path=/prelim@title20/chapter33&edition=prelim. Accessed October 2, 2018.
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Early Intervention Eligibility Criteria in the United Statesa

Elevated BLL as Medical Criteria for Automatic Eligibility in EI Program Elevated BLL as a “Risk Factor” that Does Not Automatically Trigger Services
Colorado (lead poisoning encephalopathy) Connecticut (≥25 mcg/dL) Delaware (elevated BLL requiring chelation) Florida (lead poisoning) Georgia (>10 mcg/dL) Iowa (≥20 mcg/dL) Kansas (lead intoxication, lead acetate, tetraethyl lead, other lead compounds, unspecified lead compound) Louisiana (elevated BLL requiring chelation, lead intoxication) Maryland (≥20 mcg/dL) Michigan (venous BLL at or above reference value recommended by the CDC; 5 mcg/dL) Minnesota (≥45 mcg/dL) Missouri (≥10 mcg/dL) New Hampshire (lead poisoning) Oregon (>10 mcg/dL) Rhode Island (≥15 mcg/dL) Tennessee (>10 mcg/dL) West Virginia (15 mcg/dL) Wisconsin (>10 mcg/dL) Massachusetts (four or more of the following risk factors are present including BLL measures at 5 mcg/dL) Mississippi (≥15 mcg/dL) New York (≥15 mcg/dL) Ohio (≥5 mcg/dL referred to EI if a potential delay in development has been identified)
Authors

Nicole Hamp, MD, is a Third-Year Pediatric Resident, Comer Children's Hospital, The University of Chicago. Amy Zimmerman, JD, is the Director, Children and Families Partnerships at Legal Council for Health Justice. Jessica Hoffen, BA, is a First-Year Medical Student, Warren Alpert Medical School of Brown University.

Address correspondence to Nicole Hamp, MD, Comer Children's Hospital, The University of Chicago, 5721 S. Maryland Avenue, Chicago, IL 60637; email: nferszt@umich.edu.

Disclosure: The authors have no relevant financial relationships to disclose.

10.3928/19382359-20180924-01

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