The Individuals with Disabilities Education Act (IDEA) presents a framework for eligibility for Part C early intervention services based on the presence of developmental delay or physical or mental conditions associated with developmental delay. Children with a medical diagnosis of a physical or mental condition associated with a high probability of developmental delay are eligible 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. Children with such disorders typically enter Part C services at a younger age by virtue of a medical diagnosis (Scarborough, Hebbeler & Schuster, 2008), rather than waiting until delays in development are measurable on standardized assessments.
IDEA provides guidelines regarding the specific conditions of established risk, but some states have added additional conditions to their eligibility criteria (Shackelford, 2006). States may choose to provide services to children in a third category described as at risk, based on the presence of biomedical (e.g., prematurity and low birthweight) or environmental conditions placing children at risk of having substantial delay. Currently five states provide Part C services to children at risk.
In the context of NSCAW analysis, children reported to have an established risk condition were included in the Measured Delay category. They represent a special group in that they have a condition known to be associated with developmental delay and, hence, are eligible for Part C services regardless of delay status. This group of children is not large enough to analyze separately.
The presence of certain recognized biomedical conditions place children at increased risk for developmental problems. In NSCAW, caregivers reported what, if any, biomedical risks the participating child has. If the child had at least one such condition, it was counted as a risk factor (see page 10 for the risk factors considered). The biomedical risk conditions included in NSCAW are listed at the bottom of page 21.
In all, infants and toddlers entering Part C services nationally are markedly more likely to have an established risk condition reported by caregivers or service providers than maltreated infants and toddlers (38% vs. 3%). A large proportion (22%) of maltreated infants and toddlers are, however, subject to biomedical risks in addition to maltreatment, placing them at high risk for poor developmental outcomes.
Based on caregiver or caseworker report, 3% of infants and toddlers with substantiated cases of maltreatment were indicated to have an established risk condition that would entitle them to Part C services in all states, regardless of the presence of measured delay. The majority of these children also had a measured delay in at least one domain. Of the established risk conditions reported about one quarter were birth defects (26%) and another quarter (23%) were Fetal Alcohol Syndrome (see Exhibit 9).
Note: This exhibit shows the diagnoses of the 3% of infants and toddlers that have an established risk condition at baseline (unweighted N = 50).
There are also biomedical conditions that place infants and toddlers at risk for developmental delay, though these risks do not inevitably result in developmental delay, they are often associated with poorer developmental outcomes, but individually they do not typically convey Part C eligibility. In order to describe the risk status of substantiated infants and toddlers, any biomedical condition associated with poorer developmental outcomes that was reported by caregivers was classified as a biomedical risk factor. Biomedical conditions that were reported include: HIV/AIDS, low birthweight, anemia, arthritis or joint problems, chronic cardiac condition, dental problems, hernia, high blood pressure, lead poisoning, obesity, other respiratory problems, persistent bowel problems, physical deformities, repeated ear infections, severe allergies, orthopedic impairment, and other health problems. Regardless of the number of biomedical conditions a participating child was reported to have, it was only counted as a single risk factor for the purposes of assigning them to the High Risk or Lower Risk DRIG grouping. Of the substantiated cases, 22% were reported to have at least one of the aforementioned biomedical risks, in addition to the risk associated with maltreatment.
The NEILS research team constructed a system for categorizing terms provided by Part C services providers to describe the reasons why children were eligible for Part C early intervention. Terms describing a developmental delay were used as the primary classification. For example if the service provider described a childs eligibility because of global delay and Down syndrome, the child was classified as having a developmental delay. This hierarchical classification resulted in 62% of children eligible for service because of a developmental delay, 22% eligible because of an established risk condition, and 17% at risk for developmental delay, with the at-risk reasons primarily associated with biomedical risk (e.g., prematurity), rather than environmental risk (Scarborough et al., 2006).
The NEILS research team also examined information from Part C service providers on why the child was receiving services coupled with information from interviews with caregivers describing their childs developmental and health problems. Using both sources of information revealed that 38% of the infants and toddlers entering Part C services had an established risk condition, with or without a measured developmental delay (Scarborough et al., 2007).
Comparing findings from two nationally representative studies demonstrates that 38% of infants and toddlers entering Part C are reported to have an established risk condition regardless of reason for eligibility, compared to 3% of infants and toddlers with a substantiated case of maltreatment. Clearly, maltreated infants and toddlers will need to be identified in a manner other than a medical diagnosis in order to receive Part C services. About half of substantiated children do not have a measured delay, implying that they are developing skills in the manner and timing expected. Nevertheless, almost all of the children without measured delay were subject to numerous risk factors associated with poorer academic outcomes as demonstrated in the U.S. Department of Educations Early Childhood Longitudinal Study (Lee & Burkam, 2002). The majority of maltreated infants and toddlers are at high risk for school failure, regardless of their developmental status as indicated on a developmental measure. Those with a measured delay not only are subject to risks associated with school failure, but also have as infants and toddlers, given signs of aberrant development in one or more domains, putting them at additional risk for various types of learning difficulties and cognitive impairments.
For maltreated infants and toddlers, unless they reside in one of the four states that provides Part C early intervention based on environmental risk status or in a location where unique provisions are available for maltreated infants, some will not receive Part C services until they are old enough to demonstrate a significant delay. Typically, documented developmental delay is not measurable until a child is approximately 18 months of age. In states with more rigorous criterion for delay, such as 50% delay, children may never meet eligibility requirements for Part C, despite having a low score on a developmental measure and multiple risk factors. A 50% delay in an 18-month old means that s/he would not have the skills expected in a 9-month old in order to be deemed eligible for Part C services because of a documented developmental delay.
Maltreated infants and toddlers who are subject to multiple risks associated with poor developmental outcomes could benefit from intervention services aimed at both reducing risk factors and in enhancing the caregiving environment. Proactive interventions that begin when children are at younger ages can help prevent or address developmental delay.