CHAPTER 6

Primary pediatric health care professionals are tasked with assisting the promotion and optimization of child development. Facilitation of optimal development is one of the key roles not only for primary care pediatricians but also for pediatric subspecialists and other primary care professionals who care for children. The American Academy of Pediatrics (AAP) Council on Children With Disabilities provides guidance for primary pediatric health care professionals through the policy statement, “Role of the Medical Home in Family-Centered Early Intervention Services.”1 This policy statement states that various federal and state statutes mandate that community-based, coordinated, multidisciplinary, family-centered early intervention programs (EIPs) be established, and primary pediatric health care professionals, in close collaboration with families and the early intervention (EI) team, should assume a proactive role in ensuring that at-risk children receive appropriate clinical and developmental EI services.¹ Thus, when concerns are elicited through developmental surveillance or screening, primary pediatric health care professionals should refer their patients to local EIPs. (See also Chapter 9, Developmental and Behavioral Surveillance and Screening Within the Medical Home.) EIPs exist to benefit development in children from birth to 36 months of age who have an existing developmental disability or delay, or who are at risk for developmental delay.

What Is Early Intervention?

EIPs strive to improve developmental outcomes for children who exhibit or are at high risk for developmental delays. They are based on evidence that much of early brain development is experience-dependent and that developmental trajectories can potentially be improved by appropriate and EI. Aims of specific programs may include teaching parents about infant development and how to enhance developmental stimulation, helping parents understand their infant’s behavioral cues, acknowledging and addressing sources of parental stress, enhancing the parent-child relationship, or providing developmental therapies (eg, physical therapy, occupational therapy).

EIPs are mandated by federal law and available in every county in all 50 states, as well as the District of Columbia. These programs provide a system of family-centered services to help children who are experiencing developmental delays or who have a medical diagnosis that carries a high risk for developmental delay (eg, genetic disorders such as Down syndrome, very-low-birth-weight preterm infants). EI services were first mandated in 1986 by an amendment to the 1975 Education for All Handicapped Children Act. Over time, the Education for All Handicapped Children Act was reauthorized and renamed the Individuals with Disabilities Education Act (IDEA), and the guidelines for EI services are listed under Part C, the “Grants for Infants and Families Program” of IDEA; thus, EI is often times referred to as Part C. Currently, EI services are mandated to meet the needs of any child from birth through 36 months of age who has delays in one or more of the following areas:

Under the IDEA, a family must be offered, at no cost to the family, a developmental eligibility assessment within 45 days of the request for evaluation. If the child is determined to be eligible for EI services, the intervention services may be offered at no cost to the family, billed to the family’s medical insurance, or supported by family co-pays (participation fees), as determined by each state. By federal statute, available services must include1

■Early identification, screening, and assessment services

■Care coordination services

■Medical services (only for diagnostic or evaluation purposes)

EI has been shown to improve parent-child interactions, help parents modify their behavior in response to their child’s needs, provide support for families, reduce parental stress, and help families learn strategies for effectively advocating for their children.2 In terms of altering the developmental trajectory, EI has been shown to be quantitatively most successful in children with mild versus severe delays, in children at environmental risk (eg, low socioeconomic status, barriers to appropriate developmental stimulation at home or child care, toxic stress) versus neurobiological risk (genetic syndromes, structural brain anomalies) for developmental delay, and in children at risk for developmental disability versus in children with known disability.³ Neurocognitive research has shown that there are optimal periods of brain development in which learning is most efficient.¹ Intervention that is well planned and provided as early as possible can improve the functional outcome and quality of life for all children with developmental delays or those who are at risk for developmental delays and their families.^4–6 Intervention services provided during the preschool years have the potential to provide the greatest benefit to children and their families in minimizing developmental and behavioral problems for children at risk. They also serve to maximize the child’s functional potential and prevent secondary social, emotional, or behavioral problems at later stages of development, and they provide support to families in caring for their children at home.^4–6

Shonkoff and Hauser-Cram conducted a meta-analysis of 31 studies of EI for families of children with disabilities less than 3 years of age.⁷ They found that EI services were effective in the promotion of developmental progress, but children classified as “developmentally delayed” made greater cognitive gains than those who were found to have more severe cognitive disabilities, and children with motor disabilities were found to make the least gains. Well-defined EI curricula were shown to have greater effects on child development, as opposed to programs with less structure. A high level of parental involvement and interventions that pair the child and parent together during service delivery proved to be the most effective characteristics of EI programs.

While EI may serve a variety of types and severity of conditions with different intensity and types of services, studies have shown that there are short- and long-term improvements in cognitive outcomes, social-emotional function, as well as helping parent-child interactions with a supportive environment for the household.2,8–13 Overall, the literature supports that EI programs that focus on the family unit are more effective than those programs that are solely focused on the child. While children with severe developmental disabilities living in very stimulating home environments make the least quantitative gains through EI services, these services still foster a more comfortable and developmentally appropriate interaction between the parent and child with a disability (preventing secondary social, emotional, or behavioral impairments), enhance the ability of parents to care for their child with a severe disability at home, and improve functional outcomes. For families with children with severe disabilities, the provision of EI services can also be a critical component of long-term acceptance, knowing that intervention programming was implemented.¹³

Contemporary research has shown that some of the most profound impacts of EI are not only on the child but also on the parents and family units related to the child. The National Early Intervention Longitudinal Study (NEILS) found that families who participated in EI reported positive family outcomes at completion and felt that they were better off as a result of it.^2,14 Furthermore, they felt competent in their roles as parents, as well as in their collaborative roles with professionals. Most were positive about their child’s future.¹⁴ The NEILS also identified some challenges, such as parents feeling less competent in handling their child’s behavior versus handling other basic needs, and parents reported less chance for participation in community activities (eg, religious, school, and social events) versus the strong support received from their own family and friends.

Environmental risk factors can clearly have a negative impact on child development, and this potential negative impact can be prevented or ameliorated through EI.^15,16 The Abecedarian Project¹⁷ demonstrated the benefits of EI in children from low-income, multirisk families. This study found that on average, those who received EI had higher cognitive test scores, higher achievement scores in reading and math, more years of education, a higher likelihood of attending a 4-year college, and lower likelihood of becoming teenage parents. In 2016, the AAP policy statement, “Poverty and Child Health in the United States,” highlighted the effects of poverty as a contributor to child health disparities and tasked primary pediatric health care professionals with helping to ameliorate the adverse effects of poverty through both community practice and advocacy.¹⁸

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