Abstract
Background: In alignment with the United Nations Convention on the Rights of Persons with Disabilities commitments (1), government support and services are important in reducing barriers to social participation through access to services for children and youth with neurodevelopmental disabilities (NDD) and their families (2). Research has demonstrated that children with NDD and their families face several challenges in navigating the fragmented landscape of disability services and support in Canada (3). However, limited information exists on decision-maker and service-provider perspectives on improving service integration.
Approach: To explore the perspectives of service providers and decision-makers about system barriers and facilitators to navigate services for children and youth with support needs (CYSN) and their families in British Columbia and identify solutions to address these. Using a qualitative descriptive methodology, inductive thematic data analysis was conducted in 6 semi-structured interviews with service providers and decision-makers from childhood disability services across ministries in British Columbia. Prospective interviewees were identified by performing an internet search on social media and consulting with our stakeholders' representatives (Research Advisory Council, Kids Brain Health Network). A semi-structured interview guide including relevant topics was developed by the research team and was reviewed, piloted and adjusted by the Project ACCESS Advisory Council to ensure a patient and family-orientated perspective. Inductive thematic analysis was conducted by the research team.
Results: Eight themes were identified. These themes encompass aspects of the system navigation challenges, barriers, facilitators and policy recommendations to improve service integration for children and youth with support needs and their families. The system navigation challenges are related to variability in funding and program implementation and tension between the roles across and within sectors, which undermines the capability of the system to adapt to the needs of children and families. The system-level barriers are related to a fragmented and under-resourced system of services and support, whereas the family-child level includes barriers and facilitators related to their advocacy capacity and experiences of trust and collaboration with the system. Potential policy recommendations to improve the integration of care and facilitate navigation services and support are organized into three themes: integrate system values and a model of care, improve services and support implementation and build relationships and collaborations across the system.
Implications: These results reveal critical recommendations for changes in disability policy and program implementation from the perspectives of decision-makers and service providers to improve the disability system integration and address the challenges in navigating disability services and support through more equitable childhood disability support policies and programs. These recommendations will be prioritized by representatives of families with children with NDD, services providers and decision-makers working in disability services and support, using a Nominal Group Technique methodology. Knowledge translation outputs will disseminate the prioritized recommendations as policy briefs and a policy forum.
References. OHCHR [Internet]. [cited 2024 May 29]. Convention on the Rights of Persons with Disabilities. Available from: https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities2. Dutton DJ, Forest PG, Kneebone RD, Zwicker JD. Effect of provincial spending on social services and health care on health outcomes in Canada: an observational longitudinal study. CMAJ [Internet]. 208 Jan 22 [cited 2024 May 29];90(3):E66-7. Available from: https://www.cmaj.ca/content/90/3/E663. Finlay B, Wittevrongel K, Materula D, Hbert ML, OGrady K, Lach LM, et al. Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study. Res Dev Disabil [Internet]. 2023 Mar [cited 2024 Apr 5];34:04420. Available from: https://www.sciencedirect.com/science/article/pii/S089422222002505