Examining Navigational Support for Children with ASD and Their Families

Background: There are urgent calls for integrated services and responsive navigation networks for individuals with ASD and their families. To our knowledge, no other initiative has systematically examined ASD-based navigational support networks across jurisdictions, with a robust research approach.

Objectives: The objective of this study was to (i) describe existing and desired yet absent elements of navigational support for children with ASD and their families and thus unmet needs, (ii) identify evidence-informed navigational practices and frameworks, and (iii) evaluate navigational processes in regional sites, consisting of three diverse Canadian jurisdictions (Edmonton (AB), Vancouver (BC), Whitehorse (YT)). Key questions addressed were: (i) what are evidence-informed navigational approaches relevant to ASD, (ii) what are facilitating and streamlining processes of navigation, and (iii) what is the scope and impact of navigational resources working together to offer timely and more equitable service access to individuals with ASD and their families. Interdisciplinary and cross-sectoral partners in this study include 60 community organizations/representatives.

Methods: This study builds on a collective framework methodology that incorporates mixed methods and participatory action research approaches. Organizational sectors represented comprise a range of stakeholders including self-advocates and advocacy groups, parents and families, government ministries, not-for-profit entities, service providers, and other inter-sectoral representatives. A scoping review and interviews were used to document the full range of navigational processes – from models and outcomes to lived experiences.

Results: In our initial scoping review, 2,044 peer-reviewed studies were retrieved, with 385 studies meeting initial screening criteria and 108 studies ultimately meeting inclusion criteria for full article review and synthesis inclusion. Corroborative primary interviews and focus groups were conducted with multiple stakeholders: self-advocates (n=15), family members (n=19), and service provider/advocate stakeholders (n=52). Jurisdictional models of navigation, as depicted by primary and secondary data analysis, discourage a ‘one-size fits all’ approach to service navigation in ASD. Findings support a systems-relevant and integrated network of navigational supports that are grounded in open channels of communication and iterative, family-oriented, community-directed design features. Such program characteristics are reported to foster proactive and reflective responsivity to the diverse service needs of individuals with ASD across the lifespan. Such guiding parameters reflect inter-agency, cross-ministerial, and cross-sectoral linkages.

Outcomes/Impacts: Navigation is documented to entail: case identification, need determination, identification of barriers to timely care, targeting of barriers for ameliorative change, facilitation of access to care, and systematic evaluation. Various levels and ‘sectors’ of navigational support have been determined to include: prevention; universal supports; specialized services; complex care; and urgent care. Needs of individuals with ASD and their families – requiring navigational support – are demonstrated within multiple 'life trajectory' pathways: transitions across the lifespan, community participation/engagement, family well-being, navigation across the continuum of care, safety in one's neighborhood, housing security, and personal health and mental health.

Conclusions: Family navigation is experienced differentially, with outcomes that reflect and impact individual and family quality of life. Effective navigation services can advance integrated, coordinated, seamless care and timely follow-up.