The long tail of COVID-19: implications for disability policy
In today’s post, Georgia Katsikis, Alex Devine and Sue Olney explore the implications of COVID-19 for disability policy in Australia – policy currently affecting one in five Australians living with disability with the potential to affect a growing number who may acquire a disability as a consequence of the pandemic. They argue that the needs and rights of people with disability must be integrated into plans to rebuild the economy now, to avert far-reaching and long-lasting social and economic costs.
ABC’s 7.30 program recently reported on something we’re keeping a close eye on during the COVID-19 pandemic – the potential longer-term impact on health and disability for those who contract the virus and survive. It’s too soon to know if COVID-19 has lasting debilitating effects, but evidence of its impact on vital organs – the lungs, heart, kidneys and the brain - is emerging. Medical and scientific studies suggest those who survive severe cases may continue to experience physical, neurological and psychological effects of the illness and treatment for years. As Professor John Fraser, a Brisbane-based intensive care specialist who is leading a consortium gathering data on COVID-19 patients in 53 countries noted in the 7.30 report, with “20 and 30 million people infected, even if 5 per cent have long-term disability, that's devastating.”
The implications of the pandemic for disability policy in Australia are complex and far-reaching. The UN Secretary General has described it as “a defining moment for modern society”, calling on countries to build “inclusive and sustainable economies that are more resilient in facing pandemics, climate change, and the many other global challenges.” In this environment, how can we, as a country, better support the one in five Australians living with disability now and plan for a growing number of Australians who may acquire a disability as a consequence of the pandemic? Given the pre-existing widespread social and economic marginalisation of Australians with disability, this is a significant challenge for governments under economic and political pressure.
COVID-19 changed the lives of many people with disability immediately. Factors like a compromised immune system or chronic health conditions can increase their risk of contracting the virus and of experiencing significant complications if they do. Some are at further risk because physical distancing from family or shared support workers is difficult or impossible, or because they are unable to maintain strict hygiene measures or wear face masks. To reduce that risk, many have been confined to their places of residence for more than six months, with limited interaction with people outside their support networks. Some have had no face-to-face contact since the pandemic was declared. Even when government restrictions are lifted, some will make the difficult decision to continue self-isolating to protect themselves until there is a vaccine. Parents of children with disability face different but equally significant challenges in managing risks to their children’s health and development. For many people with disability, involuntary withdrawal from the community to avoid infection has had, and will continue to have, flow-on effects on their physical and mental health, their financial wellbeing, and on their families and carers.
Concern about the risk of infection is compounded for people with disability by global discussions on pandemic triage guidance for allocation of critical care, or ‘critical care rationing’. Rosemary Kayess - human rights lawyer, researcher, academic and winner of the Australian Human Rights Medal in 2019 - addressed this eloquently on Q&A on 14 September 2020, saying “it was such a visceral reaction that I had. It was so in my face, that I was dispensable. My life wasn’t valued.” Although the Australian Government has clearly set out the right of people with disability to access health care on an equal basis with others in the Australian Health Sector Emergency Response Plan for Novel Coronavirus: Management and Operational Plan for People with Disability, there is widespread fear that assumptions about disability, quality of life and social utility could undermine this right in pressured health care and community settings.
Improving understanding of disability and community attitudes to people with disability is a critical component of how Australia should respond to COVID-19. So too is ensuring that disability policy and systems are prepared for potential increased demand for services and supports in the wake of the pandemic. Increased demand may stem from people who survive the virus with complications and long-term effects; people whose physical or mental health deteriorates through the crisis; and people whose disability worsens under lockdown to a point where they need additional support, or are unable to work even if work is available.
The view on the employment front is particularly troubling. Despite a raft of targeted initiatives and investment intended to build better pathways to work for people with disability in Australia, their labour force participation rate has hovered around 54 per cent for more than 25 years – well below the rate for people without disability. It is likely their participation rate will fall as the COVID-19 pandemic disrupts and reshapes the labour market. Some will have lost their jobs, while others may have to forego employment to protect their health – not an easy choice, considering the socio-economic disadvantage many already experience. Those who remain in the labour force will face increased competition for available work. History shows that economic recovery does not guarantee a return to previous levels of employment, and that record underpins the clarion warning sounded in the OECD Employment Outlook 2020: Worker Security and the COVID-19 Crisis of the risks ahead (section 1.4.2):
“In particular, governments should prevent paid sick-leave systems from becoming a pathway into disability benefits for the long-term unemployed, as has happened in many OECD countries in the past after a recession…This is particularly important now, as some workers currently on sick leave or quarantine may not be able to return to their job, as companies may fail to remain in business when job retention schemes phase out. Connecting these workers quickly with occupational rehabilitation or employment services, as appropriate, will be critical to prevent long-term labour market exit of those among them unable to find new jobs.”
Widespread marginalisation of Australians with disability in the labour market will present problems on multiple fronts. There is ample and robust evidence of the private benefits of employment for people with disability, and its public benefits in terms of reducing pressure on the welfare, health, disability, housing and justice systems, and those benefits would be lost. It threatens the sustainability of the NDIS, both because the scheme’s financial modelling factored in increased employment for people with disability, their families, and carers, and because there may be unanticipated levels of demand for support from people unable to work in future. It presents challenges for Australia in meeting its obligations to citizens with disability as a signatory to the United Nations Convention on the Rights of Persons with Disabilities. It also poses a risk that we will lose the skills of frontline health and care workers who acquire disability from the virus or its ripple effects. We stand a better chance of successfully navigating and recovering from the fallout of this pandemic if we harness the skills and potential of all of our human capital, with strategic investment where necessary.
When COVID-19 emerged, researchers moved swiftly to begin to capture and examine the health and economic risks it poses. That work continues, but now is the time to focus attention on the implications of COVID-19 for Australia’s disability landscape and to build necessary resources and principles of equity and human rights into plans to rebuild the economy in the wake of the pandemic. Key challenges for those who design and deliver disability policy will be ensuring that people with disability can access the health, rehabilitation and social services and support they need for full inclusion and participation in the community, including employment, and to rebuild their trust in government. Failing to do so will have significant, far-reaching and long-lasting social and economic costs.
Moderator: Simone Casey