Year In Review

The Integrated Navigational Support Program

An initiative working with local partners to build better regional systems of navigation, so that families have an easier time finding and accessing the services they need

Principal investigators

Dr. David Nicholas, University of Calgary
Dr. Lucyna Lach, McGill University

Funding Partner

The Azrieli Foundation/La Fondation Azrieli

What It Is

Families raising children with neurodevelopmental disabilities (NDDs) are often forced to navigate a confusing array of siloed, uncoordinated services spanning different sectors. They frequently struggle to determine what supports are available, which ones are appropriate for them at any given time, and how to access them—especially at key life junctures such as diagnosis, school entry or transition to adulthood.

These researchers have collaborated with local service providers in three places—Calgary, Vancouver and Yukon—to improve service navigation, bridge service gaps and reduce barriers to access. They are also sharing learnings, tips and approaches that could help other regions across the country to follow their lead.

This project is funded by a generous donation from The Azrieli Foundation/La Fondation Azrieli to the Kids Brain Health Foundation. “Our work in neurodevelopment spans neurons to networks to neighbourhoods,” says Naomi Azrieli, Chair and CEO. “It is crucial to not only support ground-breaking research and clinical care for neurodivergent people, but also initiatives like the Integrated Navigational Support Program, to ensure individuals, families and communities can access and benefit from these resources.”

Next Steps

Each region is alleviating the burden that navigation places on families in ways that work for the local context. This year, the Yukon team secured ongoing funding and a permanent office for navigation services. Partners in Alberta developed training modules for professional navigators, partners in British Columbia created a navigators’ community of practice and both of these teams evaluated peer-support programs where parents of children with NDDs helped other parents to identify and access resources.

At a country-wide level, the investigators hosted a conference where people shared what they’ve learned about building navigation capacity. They also published and distributed a community guide offering strategies for improving the odds that families of children with NDDs in any given region can get the services they need, when they need them.

Family Engagement in Research

> The FER course helps researchers and families learn to partner together effectively throughout the research process.

Principal investigators

Dr. Andrea Cross
Connie Putterman
Donna Thomson
Dr. Dayle McCauley
Dr. Patty Solomon
Dr. Jan Willem Gorter

117 researchers and 107 family members have completed the FER course, so far.

What it is

Certified by McMaster University and co-sponsored by Kids Brain Health Network and CanChild, a 10-week course called the Family Engagement in Research (FER) Course brings families and researchers together to learn from each other about how to build a productive partnership. By doing so, it aims to shape the future of Canadian neurodevelopmental research, anchoring it in the real-life needs of children and their families.

Highlights of 2021-2022

The course ran twice this year, allowing 61 new people to complete it. What’s more, FER’s founders and instructors introduced a new FER Leadership Academy to extend graduates’ impact in the community. It allows them to deepen their family-engagement skills through an enhanced curriculum and small-group mentoring.

As part of the requirements for the FER course, researchers and family members partner to create resources such as the infographic and the checklist below, both developed this year. They’re known as knowledge-translation tools because they help to spread knowledge and put it into action.