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Invisible, overlooked, forgotten: disability experiences of COVID-19

Introduction by Croakey: The Disability Royal Commission condemned as a “serious failure” the fact that no Australian government agency including the Department of Health made any significant effort to consult with people with a disability or their representative organisations early in the COVID-19 pandemic, in a special report tabled this week.

The report, which presents findings from the fifth public hearing of the Commission in August and was tabled in Parliament on Monday, chronicles a clear failure of official lines of communication from decision-makers as COVID-19 evolved, fueling fear and anxiety and stress for people with a disability.

It says the federal government also failed to consider in any sustained or systematic fashion what measures were required to support and protect the safety, health and well-being of people with disability during the early stages of the pandemic.

“The failure to consult during the critical early period contributed to the Australian Government neglecting to develop policies specifically addressing the needs of people with disability and the challenges confronting them in an emergency unprecedented in modern times”, the report says.

It continues:

The evidence at Public hearing 5 echoed what people with disability were telling the Royal Commission from the very outset of the pandemic: people with disability were extremely anxious, stressed and frightened as they found themselves severely affected by an unprecedented health crisis.

Their already high levels of anxiety, stress and fear were immeasurably heightened by the feeling that they had been forgotten by governments and general community and that the responses to the pandemic had ignored the severe challenges they faced.”

In this piece for Croakey, disability rights advocate and writer El Gibbs presents her lived experience of the pandemic and examines the Royal Commission’s findings.


El Gibbs writes:

The latest report from the Disability Royal Commission (DRC) makes clear what many disabled people already knew: we were invisible during the pandemic; overlooked, forgotten.

The DRC’s recommendations ask for immediate action from governments and agencies, and echo the calls from disabled people and our organisations during COVID.

It’s been an incredibly hard year for many of us, with the pandemic following on straight after the bushfires.

In March, suddenly disability supports that many disabled people use stopped, groceries became hard to get and expensive, and everything changed. At the same time, reports about the pandemic emphasised that disabled and/or sick people were more at risk of both getting COVID and having a bad experience if they did.

My GP told me to isolate a week or two before the lockdown, after the kind of conversation that I never want to have again. I was lucky: I already worked from home, and I had the financial resources to manage the increasingly expensive supplies. I knew that if I got COVID, it wouldn’t be good. My already fragile body would struggle with that extra load. I was so scared.

News from some other countries with the virus about health-care rationing increased the anxiety that many disabled people were feeling. Would we be seen as less valuable if there were decisions about who would get access to scarce resources, such as ventilators? No one knew.

Supermarkets were full of non-disabled people buying everything, and grocery deliveries stopped. Disabled people who live in group homes and boarding houses were locked down, with visitors restricted or banned altogether. Everything moved online, with devices and an internet connection not available for many disabled people.

Each day, there were more changes, with new rules, different in every state and for different people. What did they mean for disabled people? Where could they go for help?

People who matter

In its report, the Commission found that ”no agency of the Australian Government, including the Department of Health and other agencies responsible for disability policy, made any significant effort to consult with people with disability or their representative organisations”. None.

The DRC says this excluded disabled people from planning, and contributed to increased stress, anxiety and distress. They also found that there needs to be a unit inside the Health Department that specifically looks at the health of disabled people.

Almost as though we are actually people who matter.

The National Disability Strategy says that a key goal is for “[a]ll health service providers [to] have the capabilities to meet the needs of people with disability.” This was agreed to by all levels of government nearly a decade ago.

How, then, could the Australian Government health department not even consider the needs of disabled people when planning for a pandemic? This shows how urgent it is for the next version of the National Disability Strategy to have binding outcomes, and the resources to enforce them, as well as to look at emergencies including climate change.

This forgetting of disabled people isn’t something unique to the pandemic. A previous hearing of the Disability Royal Commission had looked at how people with intellectual disability are treated by the health system, and heard stories of neglect and ignorance.

I asked then “how they can see our disabled selves as having value, when they are taught with every lesson only to see us as broken.” The pandemic revealed again how little they value us.

Too little, too late

After several public statements from disabled people’s organisations, there was an Advisory Committee on Health Emergency Response to Coronavirus (COVID-19) for People with Disability set up in April, but the DRC says this should have happened much earlier. The Commission also recognised that disability advocacy organisations also need more resources, for both individual and systemic advocacy.

Disability information and advocacy organisations filled the void in accessible information, providing up to date information about the ever-changing pandemic rules. IDEAS ran the COVID-19 Disability Information Line and advocacy organisations worked together to get communications out.

Individual advocates helped people access online information, got people out of violence situations, and made sure they had support.

Disabled and chronically ill people also came together to create a Facebook information clearinghouse, where people posted updates, shared information and helped each other.

The DRC also says that Aboriginal and Torres Strait Islander people with disability should be included in the Aboriginal and Torres Strait Islander Advisory Group on COVID-19. First Peoples Disability Network raised key issues for their community from March, as well as the essential ethical considerations.

Access and oversight

The next recommendation is about the lack of specific guidelines that take “into account the differences between residential aged care settings and disability accommodation settings”.

This seems obvious, but makes sense given the previous findings of how much we were forgotten. Why would you need guidelines about where many disabled people live when you haven’t even thought of them?

There are recommendations about making sure that testing and screening are more accessible. This was a key piece of information that was incredibly hard to find, or to get action on.

Disabled people were told by service providers that they had to have a negative COVID test to get their services back, yet testing wasn’t accessible, leaving far too many people with no support.

Deaf people were told to call phone numbers, testing venues were in inaccessible places and information was complex and unclear.

The DRC also looked at the oversight mechanisms that are meant to protect us.

They found that the NDIS Quality and Safeguards Commission,“did not take specific steps to intensify active oversight of National Disability Insurance Scheme participants living in closed residential settings in response to the isolation they experienced due to the COVID-19 pandemic.”

People who live in group homes, in boarding houses and in other places that non-disabled people don’t have to live in, are already isolated, already shut away from the community before the pandemic.

The failure of the Quality and Safeguards Commission to proactively look at what is happening left too many disabled people without protection.

The DRC also highlighted how important it is for the disability workforce to have access to personal protective equipment (PPE) and testing.

The last few recommendations look at the fears of the disability community about health-care rationing, and the need to ensure equal access to any vaccine.

The statement on human rights and ethical decision making showed how deep the concern about this was, and is, in the disability community.

This report makes for sobering reading, and I hope health professionals take the time to consider what we are saying.

Include us in planning, listen to what we are saying, and don’t leave us behind.

El Gibbs is a writer about disability and social issues, and winner of the Gavin Mooney Memorial Essay Competition in 2014

This article is written in a personal capacity and not on behalf of People with Disability Australia, where Gibbs is the Director, Media and Communications. Follow her on Twitter at @bluntshovels

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Climate and health
Climate emergency
Heatwaves
Healthcare sustainability
#CoveringClimateNow
#HealthyCOP27
#HealthyCOP26
COVID collection
Long COVID
COVID-19
COVIDwrap