By: By Professor Anne Kavanagh | Chair of Disability and Health, Centre for Health Equity Melbourne School Population and Global Health, University of Melbourne
On March 15 2020, leading health and disability researchers called for urgent action from state and federal governments to develop a targeted response to COVID-19 for people with disability, their families and the disability service sector. We called on governments to rapidly scale up the health care sector’s capacity to respond to the health care needs of children and adults with disability, particularly those with complex support needs. We called on governments to ensure that disability services were able to provide safe and quality care for people with disability. We followed this up on the 24th of March calling for a coordinated response from the health and disability sectors to COVID-19 to protect people with disability in the pandemic recommending that the Commonwealth government establish an expert committee who reported to Australian Health Protection Principal Committee.
Our concerns were driven by a recognition that people with disability were an ‘at risk’ group in the pandemic because of reduced capacity to spatially distance particularly those who lived and worked in congregate settings as well as those who required support workers to come to their home to provide assistance with intimate tasks such as feeding and bathing. There was a lack of resources for people with disability and the people that support them on how to protect themselves from infection and what to do if they did become infected. Disability services were scrambling to develop their own pandemic responses knowing that if they closed or scaled back services that they would lose revenue. We raised concerns that casual disability support workers may continue to attend work when sick because they did not have paid leave. Disability support workers were not able to access Personal Protective Equipment despite well-founded concerns about the close and multiple contacts many have in the course of their jobs. We also recognised that many Australians with disability had health conditions that made put at higher risk of adverse consequences if infected.
Looking back now, a lot has been achieved although there is still a way to go. In early April the government established an Advisory Committee to develop and implement a Management and Operational Plan for people with disability with the first version of the plan released on the 17th of April. State and Territory governments have also released their own plans. Accessible information has been produced including Easy English for people with intellectual disability, resources for health and disability workers are now available, health care professionals with expertise in disability are working together to support their colleagues in providing health care, the disability and health sectors are working together more closely than ever before, PPE is finally available to disability support workers from the national stockpile, and telehealth is facilitating better access to health care going forward. Many other welcome initiatives have been implemented.
Despite these positive steps, many issues remain that continue to place the wellbeing and lives of people with disabilities at risk as public health restrictions are lifted. There is no active way of tracking COVID-19 infections and deaths among people with disability, their support workers and carers, and thus no public reporting of cases. This is a serious accountability issue and contrasts with other countries such as the United Kingdom. In part, this arises because of the lack of collection of disability information in routine administrative datasets. There is still no system to financial compensate support workers who need to take time of work when sick.
The health and disability service systems haven’t really been tested as Australian case numbers are low. I remain concerned about the inconsistences observed between disability services in how they responded to the pandemic with some services closing programs, such as day programs or disability enterprises, and others remaining open. This likely reflects different interpretations of the public health directives and, perhaps more cynically, the real financial risks services faced if they closed.
Avoiding infection among people with disabilities requires greater accountability of the health and disability service sectors. This means active monitoring and oversight of disability and health services. It means reporting on COVID-19 infections and outcomes for people with disabilities. It requires ongoing engagement with people with disability and their families and carers in order to adapt and respond to the emerging issues. The disability and health sectors must work together. This is a public health emergency and siloed sector responses will not work.
We also have the opportunity to build a health and disability service system that leads to better health outcomes for people with disabilities post-pandemic. To do this, we must listen, reflect and learn from what has and hasn’t worked. We need to ensure that the positive steps forward are not lost and that the mistakes that have been made do not become entrenched.
Professor Kavanagh is also Academic Director, Melbourne Disability Institute and Co-Director, NHMRC Centre of Research Excellence in Disability and Health
Jun. 17, 2020
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