Associations Between Family Navigation As a Care Coordination Strategy and the Receipt of Intervention Services for Families of Children with ASD within the Autism Speaks Autism Treatment Network.

Background: Increased rates of ASD diagnoses have led to a greater need for medical services, supports and interventions during early childhood and across the life span. The challenges navigating the complex nature of the service system hinders caregivers’ ability to receive appropriate and timely services and interventions for their child and family. Family navigation is one model recently utilized to coordinate and increase service access. Research on family navigation as a care coordination strategy for parents of children with ASD has received very little empirical attention.

Objectives: To examine the relationship between caregiver knowledge of a care coordinator (CC) or family navigator (FN) and receipt of behavioral and educational interventions. We hypothesized that caregiver knowledge of the CC or FN would be associated with greater receipt of behavioral and educational interventions after controlling for ASD severity.

Methods: Data on a cross-sectional sample of 564 children who participated in a longitudinal study 3 years after initial enrollment was extracted from the Autism Speaks Autism Treatment Network (ATN) registry. Measures included the total number of behavioral and educational interventions currently received (i.e. speech, OT, PT, behavior therapy, etc.), the child’s age at consent, gender, race, ASD severity measured by the Autism Diagnostic Observation Schedule (ADOS), parent education, whether the family maintained any insurance, and caregiver knowledge of a CC or FN (used as a proxy for receiving CC or FN services). Covariates based on both clinical importance and statistical significance were included in the regression model testing the association between number of interventions received and caregiver knowledge of CC or FN.

Results: Results suggest children currently receive 2.88 interventions on average, and only 30% of caregivers reported knowledge of the CC or FN at their ATN site. Results of bivariate tests revealed no significant differences in the number of interventions received based on the child’s age at consent, gender, race, ethnicity, or caregiver education. However, the number of interventions received was associated with insurance, ADOS severity score, and knowledge of a care coordinator or family navigator. Multivariable regression analyses showed that knowledge of the CC or FN (β=0.54, SE 0.20, p < 0.01 was associated with greater intervention receipt after controlling for ASD severity and insurance.

Conclusions:  Intervention receipt among families of children with ASD varies by having knowledge of a care coordinator or family navigator, even after controlling for ASD severity and insurance. These results suggest the importance of having a designated individual to guide families as they determine appropriate services for their child and family. Future research is needed to explore whether specific aspects of family navigation predict intervention receipt in addition to other service outcomes, and whether greater service receipt reflects a positive outcome.