The Intersection of Race and Place in Treatment Utilization Trajectories Among Children with Autism Spectrum Disorder in Early Intensive Behavioral Intervention

Background and Purpose:

Public funding of early intensive behavioral intervention (EIBI) for the 1 in 68 children who meet criteria for autism spectrum disorder (ASD) is rapidly expanding. Evidence suggests that children with ASD experience racial and geographic disparities in access to health care services, and the Interagency Autism Coordinating Committee cites disparities in access to early intervention among the most pressing yet understudied areas of research.  Disparity research has focused heavily on the age of diagnosis. We know little about whether disparities exist in children's utilization of ASD treatments.

To examine disparities in treatment utilization, we partnered with the South Carolina Department of Disabilities and Special Needs (DDSN) to build a unique, comprehensive dataset of children who received EIBI through DDSN's Medicaid waiver. We examined the relationship between race and treatment utilization trajectories and children's neighborhood racial composition, poverty, affluence, and urbanicity and treatment utilization trajectories. Also, we examined whether the relationship between race and treatment utilization trajectories varies by neighborhood characteristics.

Methods:

Data and samples: We integrated data from DDSN paper case records, spreadsheets, and electronic records and state Medicaid and Census data. The dataset includes children who enrolled in the waiver between its inception (January 2007) and March 31, 2015 (N=2,338). The current sample (N=807) includes children who received at least one therapy session between 26 and 52 weeks during year one.

Measures: Treatment utilization is measured as the percent of provider-recommended hours used per week. To determine a child's treatment utilization trajectory, we divided the number of hours used by recommended hours for weeks 1 through 52. We measured child race as black, Hispanic, other non-Hispanic, and unknown (a DDSN and Medicaid category). We used the census tract ID of children's residential addresses to determine racial composition (percent of white residents), poverty (composite), and affluence (composite). We used USAA Rural-Urban Commuting Areas to determine urban, suburban, and rural tracts. We estimated 10 growth curve models using PROC MIXED in SAS v9.4 (α = .05), we used a quadratic term, and we compared changes in -2LL. Due to the high number of singletons in census tracts, we estimated contextual models.

Results:

Children use an average of 41% of recommended hours per week, 40% of variance in utilization exists between children, children vary in utilization at week 1, and children's trajectories vary. During the first week of therapy, compared to white children, black children use an average of 8.2% less hours, for every 1 percent increase in neighborhood affluence a child uses 2.8% more hours, and compared to children in urban areas, children in suburban areas use 3.4% less hours. There is no evidence for racial or neighborhood differences in trajectories.

Conclusions and Implications:

Findings provide insight into children's average utilization during the first year of treatment, underscore the need for research that examines different measures of utilization (e.g., by month or year) and utilization beyond the first year of treatment, and offer lessons on the collection and use of administrative data in research on EIBI.