Sources of Equity and Disparity in Access to School-Based ASD Services Among Preschoolers with ASD: Who "Drops Off" from ASD Services after Early Intervention?

Background: Timely diagnosis of ASD is associated with optimal long-term outcomes for children with ASD, enabling earlier access to ASD-related intervention. Unfortunately, research has shown that health disparities emerge in children’s access to post-diagnostic services, even in the context of a timely diagnosis. Demographics, especially race and immigration status, may be driving factors in predicting receipt of EI-based ASD services at <36 months (Portillo, Buitrago, Thammathorn, Eisenhower, & Carter, 2018). During the transition from early intervention, which provides services at <36 months via Part C of IDEA, into school-based services at age 3, some children “drop off” and, at least temporarily, cease receiving ASD services.

Objectives: We examined receipt of ASD-related school-based services among children with ASD. To understand which children experience a post-transition drop-off in ASD services at age 3, we assessed demographic predictors of service receipt. We used a latent class analysis--which identified 6 demographic clusters of families within our larger sample of 381 children--to predict ASD service receipt. Qualitative analyses of open-ended parent responses are underway to identify reasons behind children’s lack of service receipt.

Methods: Children (ages 16-38 months) were diagnosed with ASD as part of an EI-based, multi-stage screening and assessment protocol designed to reduce diagnostic disparities. Children who received an ASD diagnosis included 87% boys, 40% English learners, 66% first-generation immigrants, 17% White non-Hispanic children; 57% were living below poverty level. ASD service receipt after children transitioned out of EI was determined through 39-, 42-, and 45-month interviews with parents (80% female). Demographics include household poverty, parental US-born status, race, education, employment, and English proficiency.

Results: Quarterly service utilization interviews were conducted with parents of 120 children with ASD. The majority were attending public preschool (77.1%), 73.3% had an Individualized Education Program (IEP), most were receiving school-based ASD special education services after exiting EI (82.5%); however, 17.5% of children were not receiving any ASD services, in or out of school.

We examined demographic factors predicting service receipt; children receiving no services did not differ from those receiving ASD services by poverty, parental US-born status, education, or English proficiency; more Black or African-American children (36% vs. 15%) and marginally fewer Asian-American children were receiving no ASD services (0% vs. 19%). White children were more likely than non-White children to be attending public school (84% vs. 77%); unexpectedly, children whose mothers were not employed were more likely to be receiving ASD services (91% vs. 77%) and be attending school (86% vs. 71% in public school) than children of working parents. Logistic regressions showed that demographic clusters, based on our 6-class LCA, did not predict ASD service receipt.

Conclusions: Even in the presence of equitable access to early detection, disparities emerged in subsequent receipt of post- EI ASD services. Race and employment predicted children’s risk of experiencing a gap in ASD services after exiting EI at age 3. These findings may help identify groups in need of particular support around service attainment and inform training for EI staff and health care providers around effective advocacy.