Disruptions to support services during the COVID-19 pandemic led Australians with disabilities to report significant declines in life satisfaction and mental health, a new study from Flinders University has found.
The research also found government and community awareness campaigns often failed to account for the unique challenges faced by individuals with disabilities, with unclear guidelines and inaccessible information leading to heightened stress and confusion.
Published in the journal Disability and Society and freely available to read, the study invited Australian adults with disabilities who lived with government supports under the National Disability Insurance Scheme (NDIS) during the pandemic to share their experiences.
"We were already aware that adults with disabilities were among those most heavily impacted by COVID-19 public health measures, but few studies had considered the lived experience of this particular group of people," says senior author Professor Joanne Arciuli from Flinders' Caring Futures Institute.
"It is important we understand these experiences so that in future health crises, resources can be co-designed and tested by people with disabilities and their supporters."
Australian adults with disabilities completed an online survey about their experiences of the pandemic, with a focus on changes in life satisfaction before, during and since COVID-19 lockdowns and the factors underlying these changes.
Dr Darryl Sellwood, who earned his PhD at Flinders University and worked as a postdoctoral researcher on the project, led the design of the survey based on his lived experience.
Around half of the respondents reported being satisfied with their overall well-being before the pandemic, but this figure dropped significantly during lockdowns down to 38 percent. While life satisfaction rates showed improvement after restrictions eased, levels of mental health and happiness were yet to fully recover to pre-pandemic levels at the time of the survey.
Reduced access to paid and informal support networks were seen as one of the main drivers of reduced life satisfaction, with tasks such as housekeeping, shopping, and self-care often disrupted or requiring family members to step in and fill roles usually handled by paid caregivers.
"Our findings highlight the gaps in support services created by the pandemic and the immense toll it took on daily life for those relying on NDIS home supports, underscoring how essential continuous, reliable support is for Australians with disabilities," said Professor Arciuli.
"The reduction in available support services limited access to basic daily activities, contributing to feelings of isolation, insecurity and loss of independence, and sometimes adding stress to familial relationships and friendships, further impacting participants' mental and emotional well-being."
Several participants in the study did report some positive experiences during the pandemic. Participants also expressed frustrations with unclear guidelines and inaccessible information regarding COVID-19 safety measures.
This included difficulties in securing necessary personal protective equipment (PPE) for themselves and particularly their carers during the lockdowns.
"In future, there is a need for streamlined communication strategies that consider the needs of all individuals, particularly those with disabilities who may require additional support or resources that are adapted to their specific needs," says Dr Sellwood.
"Our study serves as an urgent call for action, urging policymakers and healthcare providers to recognise the heightened vulnerability of Australians with disabilities during times of crisis.
"Future policies and public health responses must prioritise inclusivity by ensuring that individuals with disabilities are not only considered, but actively involved in the planning process."
The open access article 'Experiences of Australian adults with disabilities living with government supports in the home during the COVID-19 pandemic' by Darryl Sellwood, Benjamin Bailey, Thomas Shakespeare and Joanne Arciuli is published in the journal Disability and Society. DOI: 10.1080/09687599.2024.2411542. Two of four researchers on this project have lived experience of disability.
