Australia’s healthcare system aims to protect society’s most vulnerable and hidden people, including those with disabilities. But what if the steps taken come at the expense of human rights?
New research peeks ‘behind the curtain’ as this quandary played out in residential care facilities during the COVID-19 pandemic.
“While Victoria was in lockdown over August to October 2020, we spoke directly with disability service providers and independent advocates ,” says Associate Professor Jo Watson from Deakin Advancing Health and Social Justice of the Deakin Institute for Health Transformation.
“These providers and advocates identified challenges related to communication, concerns about violence and abuse, and negative impacts on choice, control and decision-making for people in supported living facilities during the pandemic.”
Disability staff reported challenges in accessing pandemic-related information, and lack of resourcing to communicate it effectively with residents. Advocacy staff were concerned residents could not discuss violence and abuse openly. Both disability and advocacy staff said the autonomy of residents was restricted and unsupported during the pandemic.
One advocate said ‘… it is hard to get a true picture of what is going on.’
Speaking about people who are deaf/blind, a disability worker described some of the people she was supporting as ‘locked in their own world’. Due to the pandemic related restrictions, their usual method of communication through touch was not available.
A support worker reported ‘they’re just not stimulated or engaged or able to do their usual things.’
The research also uncovered some positive implications of lockdown policies, including increased fact-to-face contact between residents and consistent support staff, and opportunities for increased online engagement with friends and family.
“It’s important we do as much as we can to learn about the experiences of people with disabilities living behind closed doors,” A/Prof Watson says.
“We advocate for stronger external oversight and enhanced partnerships between service providers and advocacy organisations to uphold residents’ rights not only during public health emergencies but in their everyday lives as well.”
Supported by a grant from the Deakin Institute for Health Transformation, the research was published with open access in the Journal of Intellectual and Developmental Disability, with co-authors from Deakin University, RMIT University, The University of Sydney and University of New South Wales.
Read the paper titled: A human rights framing of the experiences of supporting people with intellectual disability in congregate care: Post-pandemic reflections
Read more about Associate Professor Jo Watson’s research
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