Bridging Early Diagnosis and Intervention: Racial Differences in Accessing Early Intervention

Background: It is important to facilitate the transition to treatment after an early diagnosis of ASD. Delays entering Early Intervention (EI) may occur for many reasons, including how parents perceive the diagnosis (Abrams & Goodman, 1998) and coordination of intervention services (Bailey et al., 2004). Minority families may have additional barriers to access ASD-specific EI. Research indicates that racial minorities, lower income families, and parents with less education report more difficulty entering EI services than families that are more affluent, educated, or those that do not identify as a racial minority (Carr et al., 2015; Zwaigenbaum, 2015).

Objectives:  This exploratory study investigated racial differences in accessing EI services following toddler diagnosis of ASD or other developmental delays.

Methods: Parents were recruited as part of a feasibility study of the transitional period following a diagnosis of ASD (n=13), Global Developmental Delay (n=14), or language disorder (n=9). Thirty-six mothers of toddlers (M_age =22.72 months SD=3.70) were contacted approximately 12 weeks following diagnosis (M=87.28 days, Median=78.50 days, SD=27.56). Majority (n=14non-Hispanic Caucasian) and Minority mothers (n=21 African American, 1 Latino) answered open-ended questions about accessing EI services. Responses were coded on a continuous scale (0 = “I have not contacted EI services”, 4 = “My child is currently receiving therapy.” “Child is receiving more than 10 hours of services per week.”). Two coders reliably rated responses (Kappa =.89, p<.001).

Results: Majority mothers (M_EIcode=2.93, SD=.27; e.g., “My child is receiving therapy”) were further along in the EI process than minority mothers (M_EIcode=1.91, SD=1.27; eg., “I have contacted several providers/I am on the waitlist to receive services”), r(35)=-.46, p=.01. Race (β=-..42, p=.01) predicted access to EI above and beyond maternal education, R² =.22, F(2, 35)=4.53 p=.02. Total hours of therapy between majority (M=1.39, SD=.1.42 and minority children did not differ significantly (M=.89 SD=1.44) t(34)=.04, p=.84, d=.35, small effect, range 0-6 hours). There was not a significant main effect of diagnosis on access to EI and there were no significant race x diagnosis interactions.

Conclusions: Parental race significantly predicted access to EI three months after receiving a diagnosis, even after accounting for maternal education. Minority mothers (predominantly African American) were less likely to be as far along in the EI process as majority mothers at follow-up. On average, minority mothers had contacted several EI providers but were not yet receiving therapy, whereas majority mothers already accessed therapy at follow-up. Although the number of therapy hours did not significantly differ between majority and minority toddlers, a similar trend is observed with minority mothers reporting fewer therapeutic hours. Additionally, toddlers within this sample are only receiving approximately one hour of therapy (M=1.08, SD=1.43) per week, far less than what is recommended. Given the low number of total EI hours across both groups, all families may benefit from additional support in accessing necessary EI services. Systemic improvements may be necessary to improve the availability and accessibility of EI services for families, immediately following diagnosis.