Testing a family service navigator program for low-resourced families of young children with autism spectrum disorder

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Annually, over 11.5 billion dollars are spent on services for individuals with autism spectrum disorder (ASD). Services for young (aged 3-5) children with ASD are critical as the appropriate mix of services based on evidence-based treatments leads to improved child outcomes. Multiple service delivery systems offer services to children with ASD; there is no unified system of care putting the onus on parents to identify and coordinate services for their offspring with ASD. Parents of young children with ASD struggle to access needed services due to the differing eligibility criteria and norms of service delivery systems. Service disparities are compounded among low-resourced families of children with ASD who face greater barriers in accessing services for their offspring. Family service navigators (FSNs) may support low-resourced families of young children with ASD to identify, access, and use needed services for their children with ASD. The patient navigator model has proven effective in other populations. Also, the Train-the-Trainer model (e.g., training parents of children with ASD to support other parents of children with ASD) has preliminary evidence of feasibility and effectiveness among low-resourced families of children with ASD. Accordingly, using an effectiveness-implementation hybrid design (Type 1), this project has three aims: (1) to iteratively create the Service Navigator for Autism Project (SNAP) and a Technology-Based Treatment Support System (TSS) to develop FSNs (i.e., low-resourced parents of children with ASD who will support low-resourced parents of young children with ASD); (2) to test the SNAP and TSS with respect to intervention target and implementation outcomes; and (3) to determine the impact of FSNs on intervention targets, and implementation, service and clinical outcomes for young children with ASD from English and Spanish-speaking, low-resourced families. The SNAP will reflect both a patient navigator model and TTT framework. To do this, an Advisory Board of professionals, 10 low-resourced parents of children with ASD, and ASD experts will help develop the SNAP and the TSS. A single-arm survey study will be conducted to determine the effect of the SNAP and TSS on intervention targets (i.e., knowledge, advocacy, skills, empowerment, ability to facilitate knowledge, self- efficacy, and capacity) and implementation outcomes (i.e., feasibility, fidelity, acceptability, usability, and barriers to implementation). For the third aim, a developmental pilot RCT will be conducted to determine the impact of the FSNs on intervention targets and implementation, service delivery and clinical outcomes of young children with ASD from low-resourced families. Data generated from this study will help launch a larger, clinical trial potentially with a effectiveness-implementation hybrid design (Type 2) to determine the effect of FSNs on intervention targets, and implementation, service delivery and clinical outcomes leading to reduced service disparities among young children with ASD from low-resourced families. Ultimately, this research will lead to a cadre of FSNs who will improve access and functioning of young children with ASD from marginalized families.