Improving Service Access for Under-resourced Parents of Children on the Autism Spectrum: a Randomized Controlled Trial

Abstract Background Historically marginalized and minoritized families experience disparities in autism identification and access to services. Few interventions are co-designed in partnership with under-resourced families and the service providers who support them to help families successfully navigate the autism services system. Little is known about how to create new network connections between historically marginalized parents and professionals. Methods Using a community partnered participatory research model, we developed Mind the Gap (MTG), a peer navigation intervention that supports historically marginalized and minoritized families in setting goals and engaging in activities to access services for their recently diagnosed child on the autism spectrum. We compared the effects of MTG (n = 53) on randomly assigned participants to a resources-only comparison (n = 59) in a four-site randomized controlled trial. Participants were recruited from lower-resourced communities using partnered participatory research methods, with 92% of families enrolled in the study earned less than USD $50,000 per year. Our primary outcome was caregiver service access over time and our secondary outcomes were caregiver reported family and professional support networks, and family, community, and services empowerment. Results In our intent-to-treat analysis, MTG caregivers did not differ in service access relative to the comparison group; however, MTG caregivers had increased professional networks and improved service empowerment post intervention relative to the comparison group. Conclusion Results suggest this low-cost intervention can improve the support networks and service empowerment for caregivers at high risk of service disconnections and may empower their accessing other services in the future. Clinical Trial Registration NCT03711799; Registration Date: 10/12/2018 https://clinicaltrials.gov/ct2/show/NCT03711799?type=Intr&cond=Autism&intr=Gap&age=0&draw=2&rank=2