Care Coordination Among Healthcare Providers of Autistic Children and Adolescents during COVID-19

Purpose: Autism spectrum disorder (ASD) is characterized by persistent deficits in social communication and the presence of repetitive or restrictive behavior patterns that lead to significant impairments in daily functioning. The most recent estimates indicate that one in 36 American children meet case criteria for ASD. It is important to monitor the degree of communication across healthcare professionals given the high support needs found among children with autism. This study uses recent data from the 2021 National Survey of Children’s Health to examine the degree and quality of care coordination among healthcare providers of children and adolescents with autism.

Methods: We limited our study to children and adolescents, ages 3 to 17 years, with diagnosed ASD. Comparison groups included children with and without other special healthcare needs (SHCN). We first used descriptive analysis to generate national point estimates across several covariates including child disability, family demographics, and health insurance coverage. Outcomes included: 1) whether the parent needed and received help coordinating care across healthcare providers and 2) satisfaction with level of communication among doctors. We employed tests of significance to examine differences across disability categories and by health insurance. Multivariate analyses explored determinants of quality care coordination among children with autism.

Results: Just under a quarter (23%) of caregivers of children with autism had difficulty coordinating their child’s medical care, a proportion nearly four times higher than that of children with no SHCN (6%, p<.001). Most children with autism (82%) received care from two or more doctors in the past year (compared to 76% of children with other SHCN and 53% of children with no SHCN). Among them, 37% of ASD caregivers received help coordinating their child’s healthcare, compared to just 17% of caregivers in the no SHCN group (p<.001), and a little over a half (56%) were satisfied with the care coordination they received. Caregivers of children with no SHCN were nearly twice as likely than ASD caregivers to be satisfied with their care coordination (OR=1.99, p<.001). Among the subgroup of children with autism, public health insurance coverage was associated with the receipt of care coordination but was not significantly linked to satisfaction with services. White, non-Hispanic children from higher-income households were more likely to report high levels of satisfaction with care coordination.

Conclusion and Implications: The growing population of children with autism and their level of risk for poor care coordination underscores the need for policies and practices that facilitate communication across healthcare providers.