Project Description
Challenge
The prevalence of childhood neurodisability in Canada was previously unknown. Since prevalence is typically reported by specific diagnoses, such as CP or FASD, it was difficult to appreciate what proportion of children in Canada are impacted by brain-based developmental disorders and to estimate the need for supports and services for them and their families. Determining prevalence rates was one of the goals of the Social Determinants of Health (SDOH) Program.
Project Summary
Researchers used data from a population-based survey known as the National Longitudinal Survey of Children and Youth (NLSCY) in Canada and an administrative health database in British Columbia, to identify the prevalence rate of children who have a neurodisability in those jurisdictions.
Based on these findings, one in 11 between the ages of 4 and 11 have a neurodisability. They represented 9.15% of children in Canada and 8.3% of children between the ages of 6 and 10 in British Columbia.
The impact of determining prevalence has been significant. Children with varying degrees of impairment in how they move, what they understand, how they communicate, hear, see or in their emotional or behavioural function represent a critical mass of the child population.
Results
Prevalence rates have been communicated to local and international organizations and audiences. They are now being taken up by researchers, advocates, and decision-makers. Researchers interested in developing and evaluating programs for children with brain-based developmental disorders can now better appreciate and estimate their potential reach. Dr. Keiko Shikako-Thomas has presented these findings to the United Nations as part of a delegation addressing Canada’s Report on adherence to the UN Convention on the Rights of the Disabled. As decision-makers plan for services and supports in local to provincial and federal jurisdictions, they can estimate budgets needed both now and in the future to address the needs of these children in the health, social service, education and even housing sectors. EmpoweredKidsOntario has used these findings to make a case for less fragmented services for children in that province. Finally, this research has identified data gaps to identify and study children with brain-based developmental disorders in Canada and has highlighted the importance of developing ways to combine existing survey and administrative data sources. In order to continue to tell a story about Canadian children and, more specifically, whether the lives of Canadian children with brain-based developmental disorders are improving, researchers need to continue to identify and track how many there are and what their lives and the lives of their families look like.
Funding
This project was part of the larger “Social Determinates of Health Program.” The program was funded a total of $800,000 by the Kids Brain Health Network and $640,431 by participating partners.
Team
Dafna Kohen, Statistics Canada
Rubab Arim, Statistics Canada
Anne Guevremont, Statistics Canada
Rochelle Garner, Statistics Canada
David Nicholas, University of Calgary
Lucyna Lach, McGill University
Anton Miller, University of British Columbia
Jamie Brehaut, University of Ottawa
Michael Mackenzie, McGill University
Peter Rosenbaum, McMaster University
