After a child receives an autism diagnosis, caregivers begin to look for appropriate services and supports. This journey requires them to navigate a very complicated service system. Caregivers are usually tasked with coordinating their children’s medical, educational, and community-based services across different systems of care. Research looking at this process finds that family quality of life improves when families have their service needs met (Jones et al., 2017). However, caregivers of autistic children report greater unmet service needs than caregivers of children with other developmental concerns (Chiri & Warfield, 2012), and greater difficulties in accessing and dissatisfaction with care (Carbone et al., 2010).
Mind the Gap is an AIR-B project to connect families with support services in their area and to put families with a recent diagnosis in a better position
Families from historically marginalized groups, individuals living in poverty and/or in rural areas, and those for whom English is not their first language have even greater challenges navigating these systems. They often experience lower quality care (Bilaver et al., 2020; Jafarabadi et al., 2021, Stahmer et al., 2019).
The Autism Intervention Network on Behavioral Health
The AIR-B (Autism Intervention Research Network on Behavioral Health) addressed these challenges by developing a family navigation program called Mind the Gap (MTG), intended for families who have been historically underserved or delayed in accessing services (Iadarola et al., 2020). AIR-B uses a community-partnered participatory research approach that includes collaborating with community partners, including Federally Qualified Health Centers, schools, and family members, who helped develop MTG (Wallerstein et al., 2017).
Mind the Gap
MTG is a program delivered by peer navigators – caregivers of children on the autism spectrum or with other developmental delays with personal experience navigating the service system. Peer navigators receive training in collaborative coaching strategies designed to empower caregivers by helping them learn to connect with service providers and to grow their service networks for their children on the autism spectrum, post-diagnosis. Caregivers meet with their peer navigators up to 12 times across three months to set goals related to service access and their own self-care strategies. The peer navigators support families in accessing MTG resources that include videos, activities and information related to understanding autism, navigating the service system, advocacy strategies, talking with one’s family about autism, caregiver self-care strategies, and other online resources to assist caregiver understanding of child development. These resources are freely available in English and Spanish (https://www.airbnetwork.org/downloads/#mindthegap).
MTG’s family-driven programming allows for one-on-one direct support, setting this program apart from many typical community practices. Sue Mustard, a peer navigator from Starbridge, noted, “[The] ‘peer to peer’ or ‘parent to parent’ connection [is] so important. That is something that often is not present when working with many providers… I wish that I’d had access to a navigator and the MTG resources when my child was young, and I’m so happy to be able to provide that to others.”
A pilot study of the program matched nine caregivers across the US with MTG trained peer navigators (Iadarola et al., 2020). After the MTG program, caregivers demonstrated increased knowledge of autism and identified their relationship with their peer navigators as the most beneficial feature of the program. Pat Schreiber, currently a peer navigator from Warmline Family Resource Center shared, “One mother I worked with stated that it was such a relief to connect with a parent who ‘gets it,’ who has walked some of the same pathways and endured some of the same challenges. This shared experience seemed to give her hope that a pathway to progress and better outcomes might exist and that she wasn’t alone in trying to follow it.”
Results from a larger randomized-control trial with 112 caregivers comparing outcomes between one group given access to MTG materials, and another given access to these materials and working with a peer navigator are forthcoming.
Mind the Gap in the Community
The Health Resources and Services Administration has funded the AIR-B team to scale up MTG in family resource centers and other family-based organizations. As a result of the success of the program for autistic children and their families, MTG has been broadened to include resources that assist families of children with intellectual and developmental disabilities, and the program has been translated into additional languages based on community agency needs.
Peer navigators share that they appreciate the structure and organization of MTG. Faustina Salvador, a peer navigator from Special Kids Connect, explained, “Now when I work with families I have a structured plan, and discipline to do follow-ups.” Some agency leaders shared that, following training, they use MTG as part of their intake process with all families. Meeting regularly allows peer navigators and families to create long and short-term goals to meet families’ needs and proactively engage in services, rather than waiting for a crisis to arise. Peer navigators share that this helps families feel valued, helps them stay motivated, and encourages them to celebrate small accomplishments along the way. Families have shared with Kari Cayton, a peer navigator from Starbridge, that MTG has allowed them to feel “heard, understood, and supported while going through an unsure time in their lives.”
Having accessible and reliable resources available on-line allows peer navigators to direct their efforts towards building stronger rapport with caregivers. The activities and videos are practical and easy for families to use outside of session. These materials are available in several languages and are parent friendly.
Individualizing for Families
The pandemic resulted in substantial changes to service delivery, and agencies and peer navigators worked hard to adjust MTG to fit new demands. Joyce Steel, a MTG agency lead at Starbridge, said, “While we value [MTG] and it aligns with our advocacy approach of teaching and empowering families, we are short staffed and staff are stressed. Family/caregiver needs have increased, advocacy requests that are more urgent and many families call in crisis.” Structural barriers around funding and staffing may require adaptations to the intensity of MTG. As Hannah Michaelsen, an agency leader from Care Parent Network, reported, “I also envision components of MTG being used with other families who may not need the full navigation model, and with some of our support groups for families of young children.”
An important part of any family navigator program involves working collaboratively with families to meet their current needs. Families come into navigator programs with different levels of understanding of their children’s diagnoses, varying life demands and levels of support from their families and communities. Schreiber shared this for families considering a family navigator program: “I recommend taking some time to consider what you hope to get out of the program for your family. Peer navigators are there to help you reach your family’s goals; so, consider how best the peer navigator can help you reach your goals. Don’t be afraid to raise concerns with the peer navigator or reconsider activities or goals…this is a collaborative program.”
For more information, please contact sfvejnoska@ucdavis.edu.
Complete Listing of Authors: Sarah Vejnoska, PhD, Postdoctoral Scholar, UC Davis MIND Institute; Samantha Hochheimer, MS, Research Coordinator/Data Scientist, University of Rochester Medical Center; Yue Yu, PhD, Postdoctoral Scholar, UC Davis MIND Institute; Jennifer Diaz Navarro, BA, Research Coordinator, UC Davis MIND Institute; Hala Alkhatib, BS, PhD Student, UC Davis MIND Institute; Joyce Steel, Director of Family Advocacy, Starbridge; Hannah Michaelsen, MPA, Program Director, Care Parent Network; Suzannah Iadarola, PhD, Associate Professor of Pediatrics and Public Health, University of Rochester Medical Center; Melanie Pellecchia, PhD, BCBA, NCSP, Assistant Professor, University of Pennsylvania, Perelman School of Medicine; Amanda Gulsrud, PhD, Associate Clinical Professor, UCLA Department of Psychiatry and Biobehavioral Sciences; Elizabeth Hassrick, PhD, Assistant Professor, AJ Drexel Autism Institute; David Mandell, ScD, Professor, University of Pennsylvania Perelman School of Medicine; Connie Kasari, PhD, Professor, UCLA Graduate School of Education & Information Studies and Department of Psychiatry and Biobehavioral Sciences; Aubyn Stahmer, PhD, Professor, UC Davis MIND Institute
Special thanks to the family navigators and resource centers that contributed to this article and for their participation in Mind the Gap: Care Parent Network, Eastern Los Angeles Family Resource Center, Special Kids Connect, Warmline Family Resource Center, and Starbridge.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under cooperative agreement UT3MC39436, Autism Intervention Research Network on Behavioral Health (AIR-B). The information, content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
References
Bilaver, L. A., Sobotka, S. A., & Mandell, D. S. (2021). Understanding racial and ethnic disparities in autism-related service use among medicaid-enrolled children. Journal of Autism and Developmental Disorders, 51(9), 3341–3355. https://doi.org/10.1007/s10803-020-04797-6
Carbone, P. S., Behl, D. D., Azor, V., & Murphy, N. A. (2010). The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives. Journal of autism and developmental disorders, 40(3), 317-324. https://doi.org/10.1007/s10803-009-0874-5
Chiri, G., & Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Maternal and child health journal, 16(5), 1081-1091. https://doi.org/10.1007/s10995-011-0833-6
Iadarola, S., Pellecchia, M., Stahmer, A., Lee, H. S., Hauptman, L., Hassrick, E. M., Crabbe, S., Vejnoska, S., Morgan, E., Nuske, H., Luelmo, P., Friedman, C., Kasari, C., Gulsrud, A., Mandell, D., & Smith, T. (2020). Mind the gap: An intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable. Pilot and Feasibility Studies, 6(1), 124. https://doi.org/10.1186/s40814-020-00662-6
Jafarabadi, M. A., Gholipour, K., Shahrokhi, H., Malek, A., Ghiasi, A., Pourasghari, H., & Iezadi, S. (2021). Disparities in the quality of and access to services in children with autism spectrum disorders: a structural equation modeling. Arch Public Health, 79(1), 58. https://doi.org/10.1186/s13690-021-00577-5
Jones S, Bremer E, & Lloyd M. (2016). Autism spectrum disorder: Family quality of life while waiting for intervention services. Qual Life Res, 26(2), 331–42. https://doi.org/10.1007/s11136-016-1382-7
Stahmer, A.C., Vejnoska, S., Iadarola, S., Straiton, D., Segovia, F., Luelmo, P., Morgan, E.H., Lee, H.S., Javed, A., Bronstein, B., Hochheimer, S., Cho, E., Aranbarri, A., Mandell, D., McGhee Hassrick, E., Smith, T., & Kasari, C. (2019). Caregiver voices: Cross cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities, 6, 752-773. https://doi.org/10.1007/s40615-019-00575-y
Wallerstein, N., Duran, B., Oetzel, J. G., & Minkler, M. (Eds.). (2017). Community-based participatory research for health: Advancing social and health equity. John Wiley & Sons.
