COVID time capsule: Learning from the experiences of children with disabilities and their parents throughout the COVID pandemic to improve supports and services in healthcare and education

What's the issue? Children with disabilities and their families have been uniquely affected by measures that were put in place to limit the spread of COVID-19. Children's therapies and medical services were often reduced, changed to virtual delivery, or cancelled altogether; when schools closed children lost access to many supports; and many children lost opportunities to interact with others and to participate in physical activities. All of this has taken a great toll on the health and well-being of children and families. As we plan services in the post-Covid period, we need to i) address the challenges that children and families have faced during Covid; and ii) use the resources developed during Covid (e.g., technology) to improve the services and supports for children and families, particularly in healthcare and education. In this study we want to learn about children and parents' experiences at the time of COVID-19, to understand: What services did children and families miss out on because of COVID? What issues were made worse by Covid? What supports and services do children and parents need and want, now and into the future? What needs to be done in order to improve supports in healthcare and education for children and families after Covid? Methods: Our research team is made up of 8 researchers, 4 parents and 4 youth, who will all work together throughout the study. 1)30 youth ages 8-21 will complete a visual Covid time capsule and a follow-up interview. Their parent/guardian will also participate in a separate interview. 2)500 youth and parents will complete a survey regarding their need for services and supports after the pandemic. What are we going to do with this information? We will develop different materials for healthcare providers and educators: infographics; tip sheets; podcasts; video; policy briefs; and #DisabilityAfterCovid campaign on social media. We will also have a special research presentation for families and children/youth.