Project Description

A Pilot in Alberta, British Columbia and the Yukon

Challenge

Children with neurodevelopmental disabilities (NDDs) often navigate a confusing patchwork of uncoordinated services. These services span several different sectors, organizations and layers of government. Research shows that families frequently struggle to determine what supports are available, appropriate and accessible —especially at crucial life junctures such as diagnosis, school entry or transition to adulthood. Research supported by Kids Brain Health Network (KBHN) is focused on understanding navigational barriers in three unique jurisdictions to improve systems and enhance navigational experiences for children and their families.

Project Summary

KBHN has partners in three regions: Edmonton, Vancouver and the Yukon. Each team surveyed the local services and supports to identify the barriers or gaps in their jurisdictions. This survey included engaging with families and service providers, and reviewing navigational resources such as web directories to determine who supports families in finding their way through the service landscape. Based on each site’s unique context, the teams developed navigational projects to address these barriers. This work has resulted in a shared vision of navigation: What is needed are programs to equip parents to be more knowledgeable about the systems that are in place to support their navigation to services. To that end, this initiative has worked to understand better the extent to which navigators are adequately equipped to support families, and fill gaps in navigational support delivery. Finally, we have worked as a collective team to promote policies and practices that encourage collaboration across sectors, including between government and non-government organizations.

Result

The KBHN Navigation Project is breaking down siloes between organizations. For example, in Vancouver, the partners realized that after receiving an autism diagnosis at the Sunny Hill Health Centre for Children, many families were left wondering what to do next. Now, each family is automatically referred to Autism Information Services BC, an agency that guides them in taking their next steps. Meanwhile, the Yukon team hired a navigator in a remote community who is bridging gaps and connecting families with services and learning new ways of navigating in rural /remote communities.  In Edmonton, the team is co-developing, piloting and evaluating a peer/professional-based navigation program for parents, and contributing to a regional navigational resource. Each of the sites is finding ways to make navigational experiences for families more positive. A guide based on the learnings from the sites is under development. This guide will help other communities across the country that are interested in improving navigational experiences for children with NDD and their families.

Funding

KBHN: $199,992
Partners:$335,781

Team

Principal Investigators

David Nicholas, University of Calgary
Lucyna Lach, McGill University

Co-Investigators

James Reynolds, Queen’s University
Kaitlyn McLachlan, University of Guelph
Anton Miller, University of British Columbia
Gail Andrew, University of Alberta
Jennifer Zwicker, University of Calgary
Lonnie Zwaigenbaum, University of Alberta
Dorothy Badry, University of Calgary
Gina Dimitropoulos, University of Calgary

Partners

Autism Edmonton
The Azrieli Foundation/La Fondation Azrieli
Edmonton Fetal Alcohol Network
Alberta Health Services – Director of Addiction and Children’s Mental Health
Child and Adolescent Services Alberta
Cerebral Palsy Association in Alberta
Community and Social Services – Childhood Disability Services
Glenrose Rehabilitation Hospital
Community and Social Services – Disability Programs and Initiatives
Alberta Education – Regional Collaborative Service Delivery
Fetal Alcohol Syndrome Society Yukon
Watson Lake Interagency Hiring Committee
Natural Helpers
Yukon Government (Department of Health and Social Services, Department of Justice – Corrections Branch)
Autism Yukon
Watson Lake Interagency Committee
Help and Hope for Families
Yukon Inter-agency Network on Disabilities (YIAND)
Yukon FASD Inter-agency Committee
Challenge Disability Resource Group
Yukon College – Watson Lake Campus
Asante Centre
Family Support Institute of BC
BC Association for Child & Adolescent Intervention

Subsequent Cycle III Initiatives

Working Towards a Better System for People Living with Neurodevelopmental Disabilities