Living with Disability Research Centre Seminar

International perspectives on the impact of COVID 19 on people with intellectual disabilities and family carers

As the largest public health crisis within a century, the COVID‐19 pandemic has led to a dramatic loss of human life worldwide and presented an unprecedented challenge to public health. Research evidence from around the globe shows that due to both individual and social structural factors adults with intellectual and developmental disabilities living in supported accommodation are especially vulnerable to the adverse effects of the pandemic.

Our first presentation concerns family members’ experiences supporting adults with intellectual disabilities in supported accommodation in Israel during the early stages of the pandemic. Our second presentation is based on a study that surveyed (in August-September 2020) the experiences of carers of people with developmental disabilities during the pandemic across 12 different countries.

"I kept telling him that we did not abandon him": family members’ experiences supporting adults in supported accommodation during the COVID‐19 pandemic

Dr Tal Araten-Bergman, Social Work and Social Policy, School of Allied Health, Human Services and Sport, and Living with Disability Research Centre, La Trobe University, Melbourne, Australia
Dr Carmit-Noa Shpigelman, Department of Community Mental Health, University of Haifa, Israel

The impacts of the pandemic have highlighted the importance of family engagement and informal support and their impact on the health well-being and safety of adults with intellectual disabilities residing in supported accommodation services. Major adverse impacts experienced by supported accommodation residents have been disruptions daily routines and restricted access to healthcare and social supports.

The presentation reports on the findings of a mixed-method study (online survey and qualitative interviews) conducted in Israel during the first wave of the pandemic, and in particular the lockdown. The research explored family members` perceptions of how COVID-19 influenced them and their relatives with intellectual disabilities. Family members also shared their subjective experiences of engaging with their relatives and staff in supported accommodation services during the lockdown. They also shared their perception about the impact of the national policy and guidelines on service provision -- its quality, and outcomes.

Findings provide insight into the reality faced by people with intellectual disabilities residing in supported accommodation and their families during the first lockdown. The issues identified may provide direction for future development of policy and service guidelines to better meet the support and health needs of people with disabilities and their families during a global health crisis.

Caregivers’ perceptions of the global impact of COVID-19

Associate Professor Christine Linehan, University College Dublin

This presentation concerns a study on caregivers’ perceptions of how COVID-19 impacted them and the people they support. During August-September 2020, a global online survey was conducted in 12 countries. The survey sought information on demographics, support practices, information and training, experiences of COVID-19 and social distancing and wellbeing, as measured by the DASS12. In total, 3,754 family members, direct support professionals and managers responded to the survey.

Respondents observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare. Family members reported challenges in employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Overall, the wellbeing of both family members and staff revealed high levels of stress, depression, and less so anxiety.

These data indicate that individuals with intellectual and developmental disabilities, their families and support staff were disproportionately affected by COVID-19, a pattern that reflects historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.