The objective of this initiative was to explore the navigational experiences and needs of families and service providers in their quest to ensure service access for Alberta families in which a child has a neurodevelopmental disability (NDD). We recruited families of children with NDD, self-advocates and service providers who support these families across Alberta. Identified organizations and support groups were known to provide supports to families of children with ND. A total of 30 organizations or support networks participated in the study. Interview guides and a survey were developed. Interviews with parents/self-advocates and service providers elicited elements that facilitate as well as conversely hinder service navigation, along with recommendations to improve this process. The survey was administered to service providers. Questions focused on (i) the characteristics of the service delivery structure within the organization (e.g., number of staff, staff time allocated to providing navigation services), (ii) support needs of families of children with ND, and (iii) means to improve the navigation of ND services in Alberta.
In total, 32 focus groups and 28 individual interviews were conducted, with 36 service providers, 97 parents and 17 self-advocates who shared their experiences and perspectives of navigating different service sectors. The findings invited multi-systemic issues in working toward systemic solutions within communities. Based on these findings, the path forward invites recalibrating what we do together with our collective resources, such as parents learning from other parents but also more professional guidance and support along the way. This requires capacity building for all stakeholders.
Some next steps were described as providing both rural and urban ‘go-to’ resources to facilitate access to care across the system of care and providing professional and peer support at key transitions along the life course (e.g., diagnosis, school entry, youth to adulthood). Capacity building in communities was viewed as engaging stakeholders engaged in navigational work, setting short-, mid-, and longer-term goals with clear plans for goal achievement, holding to mutually determined values and principles, and actively sharing information and up to date knowledge across sectors and levels of care as well as with parents.