Improving Equitable Access to Disability Services and Support for Children With Neurodevelopmental Disabilities: Service Provider and Decision-Maker Perspectives.

BACKGROUND: Disparity in access to services for children with neurodevelopmental disabilities is a modifiable barrier to improving health, functional outcomes and social participation. Unfortunately, children and youth with neurodevelopmental disabilities face many barriers in accessing education and disability services and support. This study aimed to describe the perspectives of service providers and decision-makers about disparities in access to disability services and support for children and youth with neurodevelopmental disabilities and their families. METHODS: Utilizing a qualitative descriptive methodology informed by a pragmatic epistemological approach, we interviewed 16 individual service providers and decision-makers from childhood education and disability services across ministries in British Columbia. Purposeful and maximum variation sampling was used to guide the selection of participants. An advisory council provided patient and family-oriented perspectives and reviewed, piloted and refined the semi-structured interview guide. Data was analysed with inductive thematic analysis. RESULTS: System barriers and facilitators to accessing education and disability services and support were identified both through the navigation journey and across ministries. To address these barriers and leverage facilitators, policy and program design recommendations were identified, including an approach for framing policy as a 'wider door' and developing a holistic system that 'works for everybody'. CONCLUSIONS: Systemic barriers and facilitators intertwine within the system before, during and after engagement with families and children. This creates a complex delivery environment, hindering the equitable provision of disability services and support. The findings provide a systemic and intersectoral overview of the interconnected challenges encountered while navigating the system, relevant to many jurisdictions.