Addressing unmet and emerging health needs of Canadian adults with intellectual and developmental disabilities and their families during COVID-19

Pre-pandemic, Canadian adults with intellectual and developmental disabilities (IDD) such as Down syndrome or autism had higher rates of mental and physical health problems and were nearly four times more likely to die at a younger age than other adults. COVID-19 has made the challenges already faced by adults with IDD worse, regular activities and contact with family and friends have stopped, there is increased isolation and loss of paid supports, challenges understanding the virus and restrictions, and reduced health care accessibility. Since the onset of COVID-19, our Ontario-based team has been meeting with adults with IDD, families, and service providers to better understand their needs and to find ways to help them. With their input, we developed and trialed six-week virtual groups focused on mental health for adults with IDD, for family caregivers, and for service providers across Canada. This study will build on what we did before by extending the original mental health focus to address emerging pandemic-related health care issues including going to the doctor for a COVID-19 Health Check, vaccination and boosters, managing health problems and medications, diet, sleep and exercise, and returning to regular activities. We will run the three programs twice (Winter 2022, Spring 2022), reaching 440 participants across Canada. Each intervention will include 6 weekly sessions and will teach about health care, with case-based discussions to apply the teaching to their real life situations. Importantly, unlike other programs, our programs will include adults with IDD and family members as educators, alongside health care providers. Participants will complete surveys before, after, and at 3 month follow-up about their health and well-being, what they learned, and their health care (including if they made an appointment for a COVID-19 Health Check), and a smaller group of participants (60) will also talk about their experiences in the program through focus groups.