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Harnessing academic, advocacy, policy and industry partnerships to improve outcomes for people with disability Across the world, people with disability were left behind in COVID-19 reflecting the lack of pandemic planning and existing problems in health care for people with disability.
What happened in Australia
In Australia, we witnessed a groundswell advocacy from academics and Disabled People’s and Families’ representative organisations lobbying for a coordinated response from governments including greater collaboration between the health and disability sectors.
Advocates and academics rapidly conducted research to inform policy action. For example, Children and Young People with Disability Australia partnered with the University of New South Wales to conduct surveys on remote learning, finding that learning materials were not adapted for children and young people with disability placing enormous stress on children and their families. Researchers from the University of Melbourne and University of New South Wales conducted a survey of disability support workers showing how ill-prepared they were and the need to rapidly upskill the workforce in infection control and use of personal protective equipment.
How Australians with disability fared
The Royal Commission on Violence, Abuse, Neglect and Exploitation found that the Australian governments were slow to respond placing people with disability at risk of COVID-19 and that some people with disability experienced loss of services, significant distress and threats to their mental health. With Victoria’s second wave we did see outbreaks in disability residential settings. The Commission found that despite the obvious risks to people with disability in residential settings, there was no strategy for preventing and managing outbreaks in these settings. The Royal Commission also found that Disabled People’s Organisations were not sufficiently included in formulating government responses. Nonetheless, the Commission recognised the importance of the Advisory Committee on Health Emergency Response to Coronavirus (COVID-19) for People with Disability and recommended its continuation.
Despite the drawbacks in government responses, Australians with disability fared much better than overseas counterparts, perhaps due to strong advocacy and research partnerships across the sector. For example, our recent comparison of the responses in Australia and England, showed that people with disability have been completely disregarded by English government agencies with dire consequences for their health and wellbeing.
Working together
The COVID-19 crisis brought together academics, advocates, health and disability services, and governments to address urgent challenges.
The crisis showed how policy requires evidence (often imperfect) from across sectors (e.g. disability, health, education) and disciplines (e.g. public health, clinical medicine, social policy).
The crisis demonstrated, yet again, the importance of listening to people with disability, their families and carers who were experiencing the consequences of this unprecedented health and economic emergency, could foresee problems, and had solutions.
The crisis also revealed the enormous potential of partnerships between academics and the sector.
2021 will not be free of COVID-19. People with disability remain at risk if community transmission re-emerges. Vaccination poses another challenge. Many questions remain that are relevant to people with disability. How will decisions about who is prioritised for vaccination be made? How will the vaccine be made available to be people with disability? (e.g. will there be outreach to those who need to have it in their homes?) What happens if the vaccine is efficacious in preventing severe COVID-19 disease but doesn’t protect against transmission? How will Disabled People’s and Families’ Organisations be involved in development of vaccination strategies for people with disability?
As we move into 2021, we need to continue to work together to make sure that people with disability are protected from COVID-19 infection and disease.
The National Disability Research Partnership (NDRP)
COVID-19 demonstrated the potential of partnerships. The National Disability Research Partnership aims to cement this legacy. The Commonwealth government has provided seed funding to establish the NDRP. The aim is to demonstrate the value of working together to deliver policy-relevant research that results in transforming the lives of people with disability for the better. Over two years, NDRP aims to build a sustainable governance model, a research agenda, strategies to build research capacity across partners, and two pilot research projects of policy relevance. By June 2022 we need to demonstrate the benefit of this initial investment so that we can secure ongoing commitment from governments and other funding partners.
In establishing the Analysis and Policy Observatory’s Disability Research Collection, the NDRP aims to share knowledge and resources with people with disability, their families and carers; academics; policy-makers; health and social services; and advocates. When available, accessible resources will be shared. We hope that by setting up this collection we make evidence more easily available and build visibility of research related to the lives of people with disability. We hope the collection stimulates thinking about how the NDRP can deliver on its mission.
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