COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

Abstract

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers 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. Families reported reducing or ceasing 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. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff. Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting 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.

The early impact of COVID-19 on the intellectual and developmental disabilities community in California

“…Furthermore, caregivers of children with IDD may face even more mental health concerns than caregivers of children with other disabilities (Singer, 2006;Hayes and Watson, 2013) and those without disabilities (Scherer et al, 2019). In the context of the pandemic, studies found that caregivers of children with IDD experienced mental health issues, such as higher amounts of anxiety (Friesen et al, 2021), strain on caregiver well-being (Ersoy et al, 2020;Lee et al, 2021), elevated levels of stress and depression (Linehan et al, 2022). Some explanations for the rise in mental health issues during the pandemic pertain to financial hardships and loss of services (Friesen et al, 2021), as well as to disruptions in routines (Ameis et al, 2020).…”

Parents with intellectual disability reporting on factors affecting their caregiving in the wake of the COVID‐19 pandemic: A qualitative study

“…Persons with intellectual disability often belong to COVID‐19 risk‐groups, and highly elevated infection and mortality rates have been reported (Gleason et al, 2021 ). Individuals with a history of mental illness have also been at an elevated risk for psychological problems (e.g., McCracken et al, 2020 ), and persons with intellectual disability have been prone to mental health problems during the pandemic (Linehan et al, 2022 ; Lunsky et al, 2022 ). The pandemic and its restrictions have also had adverse effects on occupation and income (Kawohl & Nordt, 2020 ), social support (Grey et al, 2020 ), and professional support and health care (e.g., Negrini et al, 2020 ).…”

Long‐COVID in people with intellectual disabilities: A call for research of a neglected area

“…Sadly, these fears have been realised (Courtenay & Cooper, 2021 ; Epstein et al, 2021 ; Linehan et al, 2022 ) with reports showing COVID‐19 mortality rates tend to be higher for this group (Williamson et al, 2021 ). For example, in England (United Kingdom), rates were 2.3 times higher than that seen in the general population (Public Health England, 2020 ).…”

“…It is likely that services at the primary and community level will act as gatekeepers to refer people to long‐COVID specialists. Therefore, it is essential that all professionals are aware of the signs of long‐COVID in people with an intellectual disability and provide routine screens—particularly as professionals may be more likely to recognise COVID‐19‐related symptoms than family members (Linehan et al, 2022 ). People with an intellectual disability following acute COVID‐19, may benefit from a follow‐up to help identify symptoms of long‐COVID and any additional care needs and—as recommended by treatment guidelines—should help individuals manage the fear and uncertainty that can be common in those recovering from the virus (Macpherson et al, 2022 ).…”