Australia is on track to record 10,000 deaths from COVID-19 tomorrow and it is still unclear how many of these deaths have been people with disability.
Disability advocates worry there are still no future safety plans or strategies in place.
People With Disability Australia (PWDA) President Samantha Connor explains Australia has an “exceptionally poor” data collection system, which means it is difficult to see the whole issue and how to address it.
The Australian Government does not publicly share data on the total number of people with disability who have tested positive to COVID-19.
While data is collected on the number of National Disability Insurance Scheme (NDIS) participants and workers testing positive, this is only reported by registered providers, who make up less than half of disability support services.
As of this week, as the data is not updated daily, almost 25,000 NDIS participants have been reported as cases of COVID-19 and 80 have died. There are currently more than 3,000 active cases of the virus in NDIS participants.
Ms Connor says, “We [PWDA] think the National Disability Insurance Agency are well aware of how many people have died. I’ve been told by [Minister for the NDIS Bill] Shorten’s office that they won’t give them the data, they say they don’t collect it.
“I happen to know that that’s bulls**t, because I’ve spoken to, I think it was in 2021, I spoke to some providers who said that they’d been told by the Agency that over half of people who had contracted COVID had been autistic people.
“Now we’re looking down the barrel of Long COVID and creating a whole new generation of disabled people without any way that you can capture that information as well.”
Although the data is not up to scratch, Ms Connor still believes there are already solutions available that will improve peoples’ lives.
These solutions could help people who have been isolating at home since the beginning of the pandemic to protect themselves, are risking serious illness from COVID-19 so that they can be in the community, or are being exposed to risk by simply having support workers visit.
“We have a very clear roadmap for the way forward from the OzSAGE group about prevention,” Ms Connor says.
“This isn’t about mandates and it’s not about the idea that we can force people to do things.
“This is actually about having an interdependent society [where Australians] care about other people.”
According to Ms Conner, practical actions the Government should take to support this cultural shift include ensuring there is good air quality in public spaces and educating people on the importance of wearing a mask, understanding viral load in enclosed spaces and the risk of COVID-19.
“People are saying it’s unrealistic to achieve COVID-zero, that might be the case, but we should be looking for an absolute COVID reduction and harm minimisation strategy because we have one of the highest infection rates and death rates per capita in the world,” says Ms Connor.
The new Federal Government's Health Minister, Mark Butler, acknowledges the high case numbers and hundreds of Australians dying with COVID-19.
“More than one in 20 hospital beds in Australia right now, almost 3,000 hospital beds, are filled with COVID patients, and it's been the case that way for some weeks already,” says Minister Butler.
“And on average, tragically, more than 300 Australians every single week are losing their life to this illness.
“We're still seeing enormous loss of life, enormous dislocation, and massive pressure on our health and our hospital systems.”
Vaccination work not over yet
Last week, the Minister announced a campaign to get as many people vaccinated against both COVID-19 and influenza as possible.
New sub-variants of the Omicron strain of COVID-19, known as BA.4 and BA.5, could also cause case numbers to climb again, says Minister Butler, and to have the best protection against these sub-variants three doses of the vaccine are required.
Minister Butler says the campaign will also inform people of the oral treatments available for those more at risk of severe symptoms from COVID-19, such as people with immuno-compromising conditions, and encourage them to talk to a health professional about whether they would be eligible.
But Ms Connor says Labor has not done anything since coming into Government that has changed the lives of people with disability impacted by the pandemic.
“I think we’ve got a number of plans which have been ignored, not carried out, and of course there’s been a change of circumstances in terms of policy and mandates,” says Ms Connor.
“Labor really hasn’t had much discussion about the impact of the pandemic on people with disability as yet but I think it’s something that they should be taking up.
“I think Labor can’t lift one hand and say you care about people with disability and you want to get the NDIS right and then completely ignore the fact that so many of us are dying, contracting COVID, or are unsafe.
“I have some hope that Labor will be a lot more sympathetic than the previous Government, but we’re yet to see that evidence.”
Government called on to protect rights and safety of people with disability
The new Government needs to commit to a disability-inclusive response to COVID-19, says Ms Connor, something other countries around the world are doing better than Australia.
“We do have responsibilities under the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) to make sure we uphold people’s rights to be safe in emergency situations, but there’s also a number of other articles that say that people are entitled to participate in the community and we’re able to access education,” says Ms Connor.
“So we’re breaching the CRPD and we’re breaching people’s human rights every day.”
Ms Connor says the impact of the pandemic on the disability support workforce is also important to take into account.
“We’re just as likely to die from lack of support as we are from COVID,” she says.
In an attempt to cover possible workforce shortages due to the higher levels of sickness in the community over winter, Minister Shorten, has announced a Winter Relief Workforce.
Qualified disability support workers, including those recently retired or close to completing their qualifications, can join a register of available workers to cover any gaps in their local area and ensure NDIS participants have continuity of supports.
The relief workforce is a collaboration between the National Disability Insurance Agency (NDIA) and IPA Personnel, a social enterprise recruitment agency.