Nothing without us:

What the project is about:

This project looks at how the COVID pandemic affects youth with disabilities and their families. It also aims to find out how policies and public health measures can be designed to better meet the needs of persons with disabilities during the pandemic and in the recovery process.

Study Background:

• Youth with disabilities often face higher risk of adverse outcomes from COVID-19.

• Many persons with disabilities find it difficult to follow public health guidance like mask-wearing or physical distancing. Thus, they experience increased anxiety and isolation.

• Disturbance in services and support that occurred during the COVID-19 pandemic can result in various mental health symptoms such as increased stress, sleep issues, and behavior issues.

• Policies that do not consider the unique needs and situations faced by youth with disabilities and their families increase these mental health challenges.

Project Objectives:

To address the challenges that youth with disabilities and their families have faced during the COVID-19 pandemic, we:

• Search for COVID-19 related policies across Canada to understand how COVID-19 policies impact the mental health of youth with disabilities and their families.

• Conducted interviews with parents of youth with disabilities and youth with disabilities across all provinces and territories about their experiences during the COVID-19 pandemic.

• Asked participants how COVID-19 policies can be better designed to meet the needs of persons with disabilities.

• Will identify and recommend inclusive COVID-19 policy priorities for recovery.

• Take project advice from our advisory council and exploring ways to distribute research findings.   

What results can you expect from this research project?

Our research findings will support governments (Federal, Provincial and Territorial) to make policies that include the unique needs of youth with disabilities and their families during the pandemic and in recovery. If you are interested to engage in and know more about our research, please contact us.

Results:

Digital Stories on the pandemic’s impact on youth with NDD and their families

One-page overview of study results

Presentations:

See presentations of this work at the 2022 DOHaD World Congress, Luke’s Legacy Family Research Rounds, and for Health Nexus, an organization that provides training for caregivers and providers.

This work has also been presented at the Kids Brain Health Network Annual Conferences in November 2021 and October 2023, and during a CIHR-hosted webinar titled “Recovery from Inequities Exacerbated by the Pandemic for Children and Adolescents with Developmental Disabilities in Canada and the U.S” in October 2023.

Publications:

See our paper in the International Journal of Qualitative Studies on Health and Well-being

See our paper in the Journal of Pediatric Health Care

See our paper in Children

Submissions and Policy Briefs:

Results from this project have contributed to submissions to the Government of Alberta and the Federal Government, and to a policy brief submitted to the Honourable Carolyn Bennett (former Minister of Mental Health and Addictions and Associate Minister of Health).

Phase Two:

We are currently working on the second phase of this study, which will use focus groups across Canada to generate disability-inclusive policies for COVID-19 recovery and future emergency planning. Learn more about this study by clicking here.