The University of Calgary’s Alliance for Disability Voices, Advocacy, and National Community Empowerment (ADVANCE) Network has launched a national Caregiver Advisory Council to ensure research questions and policy priorities reflect the real-world needs of families.

“We recognize that community partners are important, and we really wanted to have a council of parents and caregivers to make sure that their opinions were integrated at all levels,” said Brittany Finlay, Senior Research Associate at the Disability Policy Research Program, University of Calgary. “Kids Brain Health Network provided the seed funding that made this initiative possible.”

The Caregiver Advisory Council grounds research and policy priorities in the realities families face every day.

Genevieve Currie, a registered nurse and parent of two children with a neurodevelopmental disability and rare disease, is leading the Caregiver Advisory Council.

“The members are excited to be able to give their input early on in the initial stages of this program,” said Genevieve, who is also an Associate Professor at Mount Royal University. “We have people who will speak up, know the systems where they live with their children, and provide valuable perspectives.”

Council members come from across the country: British Columbia, Alberta, Manitoba, Ontario, and Prince Edward Island, bringing lived experience navigating disability services in Indigenous, urban, and rural communities.

One member, Becky Conia, highlighted the education system as an area for policy change. “Our children spend 30 hours a week in classrooms, but many teachers receive little to no training on how to support autistic or neurodiverse students,” she said, noting the impact on children’s learning and future opportunities.

Earlier conversations with caregivers revealed similar challenges, including long wait times and fragmented support for children and families.

Navigating life with a child who has a neurodevelopmental disability, Becky added, means constantly moving between three disconnected government systems: education, health, and family services. Each operates in its own silo, with little coordination to meet children’s full needs.

“My vision is that this work would be ongoing because things evolve,” said Becky. “Having a Caregiver Council matters because you can do the analysis, but if you’re not living in that world, if you’re not walking those steps, you don’t truly understand and appreciate the challenges.”

The Caregiver Advisory Council is part of the ADVANCE Network, which works to improve access to provincial and territorial disability programs for Canadian children and youth with neurodevelopmental disabilities and their families.

The ADVANCE Network is supported by KBHN and co-led by Dr. Jennifer Zwicker, Dr. Lucy Lach, Dr. Keiko Shikako, and Sharon McCarry.

In the months ahead, the ADVANCE Network will survey the Caregiver Advisory Council, partner organizations, and the Youth Advisory Council to identify their priorities for policy changes. They will review the findings at an October 2025 gathering, where Network members, including advisory council members, will select top priorities for the ADVANCE Network to address.

“Parents need a seat at the table to share what’s working, what’s not, and where the gaps are. Their lived experience should drive disability policy in Canada,” said Genevieve.