Throughout the pandemic, families and children living with disabilities have faced extra challenges. Many have lost essential services such as respite, and others have had difficulty accessing COVID-related information, all of which have caused great distress and potentially caused or exacerbated mental health challenges in this population.
A project led by Kids Brain Health Network (KBHN) Deputy Scientific Officer Dr. Jennifer Zwicker, and KBHN researcher Dr. Keiko Shikako-Thomas, is looking at the perspectives of families and how policies during the COVID-19 pandemic have addressed mental health issues for children with disabilities and their families. Funded by the Canadian Institutes of Health Research (CIHR) under “COVID-19 Mental Health and Substance Use Service Needs and Delivery” Operating Grant, the project’s Advisory Council is co-led by KBHN’s Research Engagement Strategist Rachel Martens and Steve Estey, a disability advocate.
“What we’re focused on is identifying some of the pandemic-specific responses that are not disability-inclusive,” says Dr. Zwicker, Deputy Scientific Officer of KBHN. “Our aim is to both understand the experiences of youth and their families—particularly their experience with policy and services—but also to do a scan of pandemic-specific provincial and federal policy in Canada to determine whether or not they’re inclusive.”
The researchers are interviewing individuals under 25 years old and their families and caregivers from across urban and rural Canada. The purpose is to understand how COVID-related policies have impacted their mental health and discover ways of creating new policies or adjusting existing policies to improve mental health. The team is looking at whether broad public health measures implemented throughout the past year are disability-inclusive, such as exemptions around mask-wearing and access to different services during the pandemic. They are also looking at potential implications of disability-specific policies, such as family caregivers and respite workers not being deemed “essential services.” The end goal is to ensure that the needs of children with disabilities and their families are reflected in policies during this crisis period and beyond the pandemic.
“A lot of the policies we’ve been trying to focus on are pandemic-specific responses but applying a disability-inclusive perspective to policy development more broadly is something we need to be doing after the pandemic,” says Dr. Zwicker. “ My hope is that this project shines some light on the need for representation of these views both federally and provincially because a lot of policies that have an impact on mental health don’t necessarily take people living with disabilities into consideration.”
The year-long research project is past the halfway mark, with preliminary results and analysis underway. Both Drs. Zwicker and Shikako-Thomas are planning a research-to-policy knowledge translation forum in the future, where they will share the team’s findings.
“This past year has been nothing short of challenging, but we’re hoping we can learn from this experience to inform and improve the way we make public policy using a human rights perspective,” says Dr. Shikako-Thomas. “This will guarantee that children living with disabilities and their families have equal access to their rights and can enjoy good mental health and quality of life through crisis and after it.”
If you are interested in engaging in the study, the research to policy forum or learning more about findings from this study as they emerge, please contact the team at youthstudiesinfo@gmail.com to join the mailing list.
By: Vanessa Hrvatin (Freelance Writer)
