Project ACCESS
Assessing the Continuum of Care and Eligibility for Services and Supports for Children with Neurodevelopmental Disabilities and their Families
What the research project is about:
Working closely with our advisory council and project partners, we are focused on understanding disparities in access to existing health, education and social services for youth with Neurodevelopmental Disabilities (NDD) and their families in Alberta and British Columbia, and the impact of these disparities on outcomes of the youth across various stages of life. The findings from this analysis will be used to design policy recommendations with stakeholders to enhance the access to services across ministries. The findings will help to significantly shape policies to improve access to services for youth with NDD and provide insights for other populations facing similar access issues.
Project Objectives:
Objective 1 (Quantitative): Measure realized access (service use) of services across the life course for youth with NDD and its impact on participation in society during three time windows: (a) childhood, (b) transitions from adolescent-to-adult supports and (c) early adulthood.
Objective 2 (Qualitative): Describe the experiences of youth with NDDs and their caregivers when trying to access services across the life course.
Objective 3 (Knowledge Mobilization): To co-design policy recommendations with our advisory council and partners to improve access to services across the life course and mobilize this knowledge to system-level policy impact.
We hope to reach these objectives by:
Using linked administrative data for youth with NDD in Alberta and British Columbia, we will analyze service utilization during three time periods: (a) childhood, (b) the adolescent-to-adult transition and (c) early adulthood;
We will capture and describe the experiences of service providers and youth (18 to the age 32) with NDD and their caregivers accessing services across various stages of life;
Compile results from our research and develop recommendations, in collaboration with outside advisors and stakeholders, aimed at improving access to supportive services
Presentations:
This work has been presented at the Owerko Centre Conference in May 2023, the KBHN Annual Conference in October 2023, the Children’s Healthcare Canada Conference in December 2023, and the ACHRI Retreat in December 2023. See our News and Updates page for more information about these presentations.
Funded by:
Partners:
Government of BC (ministries of education, community and social services and health), Government of Alberta (ministries of education, community and social services and health), Policywise, Kids Brain Health Network, CHILD-BRIGHT, CanChild, Alberta Health Services, Data Innovation BC, Family Support Institute BC, Sinneave Family Foundation
DiPo Team Members:
Ash Seth
Ken Fyie
Angela Senevirathna
Patricia Basualto
Advisory Council Members:
Shantel Sherwood
Robin Friedlander
Francois Proulx
Brenda Lenahan
Greg McMeekin
Deborah Thul
Anamaria Richardson
Gina Dimitropoulos
Erica Cedillo
Nilima Sonpal-Valias
Jason Gordon
Pamela Alcorn (Membership and Public Policy Coordinator, The Federation of Community Social Services of BC)
Zainum Bahadshah
In Cooperation with:
Rachel Martens (knowledge use/co-applicant), Alberta Childrens Hospital Family Advisor, and a member of Canadian Family Advisory Network, IMAGINE Citizens and CanChild.
Angela Clancy (knowledge use/co-applicant), Executive Director of the Family Support Institute BC
Dr. Janet Tapper (co-applicant), early career investigator, physician in Physical Medicine and Rehab and Assistant Professor in Clinical Neurosciences at the UofC
Dr. Lesley Pritchard-Wiart (co-applicant) early career investigator and Assistant Professor at the University of Alberta
Dr. Deb McNeil (co-applicant), Scientific Director for the MNCY Strategic Clinical Network in Alberta Health Services
Dr. Anton Millar (co-applicant) Clinical Associate professor in Pediatrics at the University of British Columbia
Dr. Ben Gibbard (co-applicant), developmental pediatrician and Associate Professor
Dr. Kara Murias (co-applicant), Assistant Professor at the University of Calgary, Pediatric Neurologist and researcher investigating neurodevelopmental disorders.
Dr. Lonnie Zwaigenbaum (co-applicant) Stollery Children’s Hospital Foundation Chair in Autism, Professor in Pediatrics at the University of Alberta and co-Director of the Autism Research Center at the Glenrose Rehabilitation Hospital.
Dr. David Johnson (co-applicant) Professor at the University of Calgary and physician in pediatric emergency medicine.
Dr. Jeff Round (co-applicant) Director of Economics at the Institute for Health Economics.
Dr. Matthew Russell (co-applicant) CIHR Health System Impact postdoctoral fellow
Dr. Kyleigh Schraeder (co-applicant) Canadian Child Health Clinician Scientist postdoctoral fellow (child psychologist)
Dr. Xinjie Cui (co-applicant) Chief Analytics Officer of PolicyWise.
Dr. Dafna E. Kohen (collaborator) Acting Assistant Director in the Health Analysis Division Dr. Rubab G. Arim (collaborator) Senior Research Analyst at Statistics Canada.