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Popular media coverage as well as many state legislative initiatives demonstrate that the nation has taken note of the important role of early developmental experiences during infancy and early childhood. Among young children, most at risk of developmental problems are those who experience child neglect and abuse. Children younger than three years of age are the most likely of all children to become involved with Child Welfare Services (Wulczyn et al., 2005). Those with medical or developmental conditions experience an even higher level of involvement with Child Welfare, including an increased likelihood of removal from parental care and a prolonged stay in foster care, compared to unaffected peers (Rosenberg & Robinson, 2004). A major opportunity to minimize or avoid developmental problems is missed when maltreated children do not receive services that could ameliorate these negative experiences.
As recognition of maltreated children’s developmental needs grew in scientific and policy circles, this missed opportunity began to be identified and addressed. The National Research Council and Institute of Medicine (2000) recommended that “all children who are referred to a protective services agency for evaluation of suspected abuse or neglect be automatically referred for a developmental behavioral screening under Part C of the Individuals with Disabilities Education Act.” In 2003, the Child Abuse Prevention and Treatment Act (CAPTA) was enacted, requiring that states have a mechanism for the referral of maltreated children under the age of three to early intervention services funded by Part C of the Individuals with Disabilities Education Act (IDEA). Part C of the IDEA, which was reauthorized in 2004, contains a comparable provision supporting the CAPTA requirement. A document that accompanied the CAPTA legislation clarified that a referral and appropriate screening are mandated (House Report 108-779, 2004).
Under Part C of the Individuals With Disabilities Education Act (IDEA) of 1990, children needing services are to be identified, evaluated, and served, especially those children who are typically underrepresented (e.g., minority, low-income, inner city, Indian and rural populations) through an interagency, coordinated, multidisciplinary system of early intervention services. Eligibility for Part C services entitles children to services as deemed necessary in the evaluation and documented in the Individualized Family Service Plan (IFSP) that is developed by Part C service providers and parents at the time the time of enrollment. Physical therapy, occupational therapy, speech and language therapy, and services provided by a developmental specialist, are among the most common Part C services used.
Although many of these maltreated children may be candidates for early intervention services, there is reason to believe that only a small number are typically enrolled (Horwitz, Owens, & Simms, 2000; Robinson & Rosenberg, 2004). Despite legislative requirements, many child welfare agencies have not had an adequate referral mechanism for developmental services (Leslie et al., 2003). Moreover, child welfare workers often do not recognize developmental problems (Rosenberg, Smith, & Levinson, 2005). When children are referred, early interventionists may be unprepared to address the additional challenges inherent in working with maltreated children, their families, and child welfare systems (Vig, Chinitz, & Shulman, 2005). In some states, Child Welfare Services may have had a limited history of collaboration with Part C service providers. Child Welfare Service referrals are likely to challenge early intervention service conventions because this population of children and their families is likely to be different compared to children typically served under Part C (Harbison, Parnes, & Macomber, 2007). They found that the children served by Part C differ most markedly from children served in Child Welfare Services; Early Head Start; and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC). Lower percentages of Part C children are poor, have mothers that did not graduate from high school, or live in single-parent families. Part C does not have an income eligibility requirement, which likely contributes to these distinctions (Harbison et al., 2007).
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This project is funded by the Office of the Assistant Secretary for Planning and Evaluation (ASPE), U.S. Department of Health and Human Services.
Implementing CAPTA requirements poses a variety of challenges. A key challenge is the lack of information on which to begin considering problems and solutions. Therefore, the Office of Assistant Secretary for Planning and Evaluation contracted to conduct a study of data already collected in the National Early Intervention Longitudinal Study (NEILS) and the National Survey of Child and Adolescent Well-Being (NSCAW) in an effort to provide some information about maltreated children and early intervention.
This study answers several key questions:
The report will present information from two large, national studies that allow us to describe children and families who are involved with Child Welfare Services or with Part C early intervention services, respectively. The National Survey of Child and Adolescent Well-Being, the first national study to describe the developmental status of maltreated children, is discussed below. The National Early Intervention Longitudinal Study (also described in more detail below) describes children and families who entered Part C services. These studies overlapped in time longitudinally, although information on infants and toddlers in both studies was collected prior to the new CAPTA and IDEA requirements described previously.
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This study used four data sources. Each is described below.
NSCAW is the first national probability sample of children investigated for child maltreatment (Administration for Children and Families, 2006). The NSCAW sample was created to represent the target population as precisely as possible. The sample of 5,501 children (ages 0 to 14) was randomly selected from the families who entered the U.S. child welfare system in any of the 93 designated areas between October 1999 and December 2000. Two full waves of data collection were completed at approximately 18 and 36 months post-baseline.
These families included both open and closed cases (i.e., cases closed without ongoing services), whether or not the maltreatment was shown to have occurred (i.e., substantiated). If opened, some children in NSCAW were served in their homes and some in out-of-home care (e.g., foster care). Children were excluded from the study if a sibling had already agreed to participate in the study, if a child perpetrated the alleged maltreatment, or if the referral to Child Welfare Services was screened out (i.e., the alleged maltreatment did not meet the criteria for child abuse or neglect as defined by the state, or too little information was reported to Child Welfare Services to justify pursuit of the case).
Two major criteria were used in drawing the sub-sample employed in the analyses for this report. First, the child was required to have a finding of substantiated or high risk in their child welfare case. A finding of substantiated means the alleged maltreatment has been judged by the juvenile court to have occurred. A finding of high risk means the family has numerous risk factors for maltreatment to occur although no determination of substantiation has been made. The decision to include this group is based on evidence that case characteristics where maltreatment was substantiated do not vary from those where maltreatment was not substantiated. This phenomenon strongly suggests maltreatment probably has occurred in unsubstantiated cases, but evidentiary standards could not be met (Hussey et al., 2005; Leiter, Myers, & Zingraff, 1994). Second, to be included in the analysis, the child needed to be less than 36 months old at the time of their baseline assessment. This age range was chosen to be compatible with the age range of eligibility for Part C early intervention services.
NEILS is the first nationally representative study of Part C recipients (Hebbeler et al., 2001; Scarborough et al., 2004). Its main goal is to describe the population receiving Part C early intervention. NEILS was designed to provide descriptive and exploratory information about children and families, the services they receive, and their outcomes. A priority addressed by NEILS was to examine the outcomes experienced by children and families in early intervention. By definition, all children in NEILS were eligible for Part C services. Information in NEILS was acquired through caregiver interviews and Part C service providers.
Part C of IDEA was enacted in 1986 to address the critical need:
In 1997, the reauthorization of Part C included in IDEA, required states to facilitate the development of a statewide comprehensive system of early intervention services entitling all children from birth through two years of age, experiencing developmental delays, as defined by the individual states, to Part C Services. IDEA regulations allow states considerable flexibility in the area of defining eligibility for services with specific criteria to determine eligibility left to the discretion of the individual states. Variability in eligibility criteria, along with the application of the definition of eligibility at the local level, the discipline of the professionals determining eligibility, and other community-based differences such as the availability of services and local child find efforts, creates significant variation in the percentage of children served in individual states and in the disability characteristics of those children (Scarborough et al., 2004).
One optional category for eligibility for Part C services is based on the presence of developmental delay or physical or mental conditions associated with developmental delay. Developmental delay is broadly defined as a documented delay in cognitive, communicative, physical, social or emotional, or adaptive development. Individual states determine the criteria for delay, including the severity and how it is documented, and if documented delay in multiple domains affects the severity criterion (Shackelford, 2006).
The second optional category for eligibility for Part C services is based on children with a medical diagnosis of a physical or mental condition associated with a high probability of developmental delay are likewise eligible for Part C services regardless of their developmental status. A chromosomal abnormality such as Down syndrome is an example of an established risk condition associated with a high probability of delay. Though states follow IDEA guidelines regarding the specific conditions of established risk, some have added additional disorders that constitute established risk.
The third optional category for eligibility is based on the presence of biomedical or environmental conditions placing children at risk of having substantial delay if early intervention services are not provided. There are well-known biological and environmental factors that place infants and toddlers at risk for developmental delay. Some commonly cited factors include low birthweight, respiratory distress as a newborn, lack of oxygen, brain hemorrhage, infection, nutritional deprivation, and a history of abuse or neglect. Risk factors do not inevitably lead to developmental difficulties, but indicate children who are at higher risk of developmental delay than children without these problems (Shonkoff & Meisels, 1991).
Currently five states (CA, HI, MA, NM, & WV) serve children “at risk” for developmental delay though there is considerable variability in the nature and number of risk factors that establish eligibility. California provides services only to children with biomedical risk, whereas Hawaii considers individual risk factors, such as maltreatment alone as potential eligibility for Part C. The remaining three states require 2 to 4 risk factors and recognize maltreatment as one of those factors.
Participants in NEILS were children between birth and 31 months of age entering Part C for the first time in 1997 and 1998. NEILS followed children from entry to Part C services annually during the time that services were received when the child was approximately 36 months of age and again during the child’s kindergarten school year. Ninety-three counties in 20 states participated. These 20 states varied with regard to size, region of the country, and the agency that assumed lead responsibility for administering early intervention services. States also varied in terms of whether they served children identified on the basis of being “at risk” (Javitz, Spiker, Hebbeler, & Wagner, 2002). If a family had more than one child entering Part C services, only one was selected for the study. Programs invited 4,653 families to participate, and 3,338 (71%) agreed (Javitz et al., 2002).
The study project team in collaboration with the Office of the Assistant Secretary for Planning and Evaluation (ASPE), the Department of Education, and the Administration for Children and Families, identified Part C and Child Welfare experts. These experts represented a range of professional perspectives. Individuals were asked to participate in telephone discussions. It is important to note that the views of these experts do not represent the entire field since the sample was based on nomination and then self-selection. The views of experts are intended to enhance our understanding of the issues.
The purpose of the discussions with experts was to ask them questions about the interaction between Part C and Child Welfare based on their own experiences conducting research or managing state programs. The experts were requested to respond to drafts of our products.
A literature review was completed to describe the most common problems that maltreated infants and toddlers experience and to highlight the benefits of early interventions for this population. The review contains two parts:
The purpose of the literature review was to help inform this project and to also serve as a document that could be used by Part C and child welfare workers and managers who are responsible for referring and assessing maltreated children.
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In NSCAW, three developmental domains were assessed:
Also assessed in some children:
In order to describe the developmental characteristics of maltreated infants and toddlers, children were classified into one of three mutually exclusive groups called Developmental and Risk Indicator Groups (DRIGs) for this study. The Measured Delay[1] group consisted of those who had a measured delay on one or more developmental measure. These children were subject to a varying number of risk factors. This category also included a small proportion of children with an established risk condition (e.g. conditions associated with developmental delay such as deafness, blindness, cerebral palsy) which made them eligible for Part C services regardless of measured delay, however almost all of the children with an established risk condition also had a measured delay. A second group, the High Risk group, consisted of children who had at least five risk factors associated with developmental problems (e.g., poverty level, active domestic violence, substance abuse), but no measured delay.[2] All children in NSCAW had at least one risk factor — a maltreatment experience. The final group, the Lower Risk group, had fewer than five risk factors and no measured delay. The groups are mutually exclusive so a child with a measured delay was in that group regardless of the number of risk factors they experienced.
Two kinds of analyses were conducted. Descriptive analyses examined how many children in each child welfare setting would fall into the Measured Delay, High Risk, or Lower Risk groups. A second set of analyses used regression modeling to identify what child, parent, household, or case characteristics were associated with receipt of services or a change in DRIG grouping, for example.
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[1] Italicized words or phrases have a specific meaning in this report and are defined in Appendix A.
[2] The 10 risk factors considered in addition to maltreatment are caregiver mental health problem, non-white racial status, low caregiver education, single caregiver, biomedical risk condition, poverty, teen-aged caregiver, domestic violence, 4 or more children in the home, and caregiver substance abuse. Each was selected based on our review of classic works on the impact of cumulative risk on developmental outcomes (e.g., Sameroff, 1998). Individually any of these factors may not be predictive of poor developmental outcomes, but the exposure to multiple risk factors increases the likelihood.
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