Part C Early Intervention for Infants and Toddlers: Percentage Eligible Versus Served

Rosenberg et al. correctly highlight an important barrier to the healthy development of our nation's youngest children: "There is no standard definition of what constitutes a developmental delay." The absence of a consensus-driven, defensible federal definition of what constitutes a developmental delay in infants and toddlers, based on research rather than funding allocations, contributes to the inequitable, inefficient, and ineffective care that many U.S. children with developmental-behavioral problems receive. For example, Massachusetts has a more effective early detection/Child Find system and provides a greater percentage of its children with EI compared to states like Georgia, Arizona or Michigan. As importantly, Massachusetts has an inclusive definition of developmental delay, which means that young children are eligible for EI services as developmental issues emerge, not only when they become severe.

Primary care providers often refer children with positive/concerning screening tests for general developmental, social-emotional, autism- specific or family psychosocial problems to Part C agencies, only to learn that these children were actually never linked to community services, much less the IDEA early interventions that would benefit them the most. Even those who are linked may not qualify for EI because their developmental- behavioral issues were not yet pronounced enough to meet their state's Part C eligibility criteria. So, a child in Massachusetts might qualify for EI while the same child with exactly the same developmental-behavioral issues would not qualify if he lived in Missouri.

This unacceptable, wild variability across states is typically the result of state budget decisions (strict eligibility standards reduce short-term EI costs to states and schools), not the science of child development. This approach is shortsighted for state budgets, children, families and society. Many referred children who "do not qualify" for EI will later be diagnosed as having a developmental-behavioral disorder with at least mild impairment.(1) Importantly, children with milder delays often respond best to EI.(2) It's frustrating for parents and practitioners - and tragically costly for our society - when infants and toddlers with red-flagged screenings do not receive services. For every dollar spent on early childhood development programs, there is a 7-10 percent annual return rate in cost savings to society.(3) A relatively small national investment in Part C and other beneficial community programs (e.g., Early Head Start, evidence-based parenting programs) would dramatically trim future budgets for adolescents and adults.

The substance of the Rosenberg et al. article and our concerns about the geographic variability in early detection/Child Find activities rallied us to recommend the following:

1) In preparation for the next reauthorization of IDEA, we should begin a national conversation to define the baseline eligibility requirements for EI services - that is, develop a national working definition of what constitutes a developmental delay or Part C eligibility.

2) We need to identify the best strategies to promptly identify infants and toddlers with developmental-behavioral challenges and speed them to effective services - and then restructure Part C Child Find requirements to support these approaches. A "systems approach"(4) framework must ensure that all U.S. children/families receive accurate, reliable and parent-centered screening, as recommended by the AAP and supported by a randomized controlled trial(5) but in combination with system-wide referral and care coordination services.(1,4)

3) Just as Early Childhood Special Education for children ages three through five and Special Education services for school-age children (IDEA Part B) are mandated, Part C services, with clear definitions of what constitutes a developmental concern needing EI, should be required by the federal IDEA statute and not treated as discretionary. The timing is right, as IDEA, last revised in 2004, is in the congressional pipeline to be reauthorized.

References 1. Marks KP, Glascoe FP, Macias MM. Enhancing the algorithm for developmental-behavioral surveillance and screening in children 0 to 5 years. Clin Pediatr, 2001;50(9),853-868.

2. Brooks-Gunn, J., Gross, R.T., Kraemer, H.C., Spiker, D. & Shapiro, S. Enhancing the cognitive outcomes of low birth weight, premature infants: For whom is the intervention most effective? Pediatrics. 1992;89, 1209-1215.

3. Heckman JJ. Skill formation and the economics of investing in disadvantaged children. Science. 2006;312(5782):1900-1902.

4. Bricker D, Macy M, Squires J, Marks K. (2013). Developmental Screening: An Integrated Approach for Connecting Children with Services. Baltimore, Maryland. Paul H. Brookes Publishing Co.

5. Guevara JP, Gerdes M, Localio R, Huang YV, Pinto-Martin J, Minkovitz CS, Hsu D, Kyriakou L, Baglivo S, Kavanagh J, Pati S. Effectiveness of developmental screening in an urban setting. Pediatrics. 2013;131(1):30-37.

Conflict of Interest:

Drs. Squires and Bricker are the co-authors of and receive royalties for the Ages & Stages Questionnaire (ASQ) and Ages & Stages Questionnaire: Social-Emotional (ASQ:SE). Dr. Glascoe is the author of and receives royalties for the Parents' Evaluation of Developmental Status (PEDS), PEDS: Developmental Milestones (PEDS:DM) and Brigance Screens II.