Grant: Project Grant

Challenges accessing appropriate services is a reality for the estimated 1 in 11 children in Canada that have a Neurodevelopmental Disability (NDD). As a signatory to the United Nations (UN) Convention on the Rights of Persons with Disabilities, Canada has made meaningful advances in implementing the convention. However, the UN Human Rights secretariat recently highlighted an urgent need for rights monitoring systems and specifically emphasized the lack of available data regarding youth with NDD. Ninety per cent of youth with NDD need access to services and professional supports spanning health, education and social services, and a lack of access to these services was identified as a critical gap across all Canadian provinces. Access to services across the life course is a modifiable barrier to the achievement of UN goals. The objective of this project is to understand disparities in access to existing health, education and social services for youth with NDD and their families in two provinces, and the impact of these disparities on outcomes of youth with NDD across the life course. The findings from this analysis will be used to co-design policy recommendations with stakeholders to enhance the access to services across the life course. In the proposed research we will: 1) use linked administrative data to measure access to provincial services by youth with NDD from childhood to early adulthood, and examine how service use impacts ability to participate in society; 2) describe perspectives on service access for youth with NDD through interviews with the youth with NDD and their caregivers; and 3) co-design policy recommendations to improve service access. Findings will inform policy to improve access to services for persons with disabilities and provide insight into strategies for other populations experiencing similar issues with service access.