Government still doesn’t know how many Australians with disability contracted Covid

The Australian government still doesn’t know how many people with disabilities have contracted Covid-19, despite a royal commission saying eight months ago that its failure to collect national data on cases was inconsistent with UN obligations.

As Sydney reels from Australia’s worst Covid outbreak since Victoria’s second wave, a second outbreak at a disability group home in Sydney’s south-west has put the focus on the risk the virus poses to the disability community, particularly given lagging vaccination rates in group homes.

Officials confirmed at hearings in August that eight National Disability Insurance Scheme participants had died from Covid, but they were unable to say how many people with disabilities had caught the virus, or died from it, prompting scathing criticism from the royal commission.

Related: NDIS overhaul: a solution to a $60bn cost blowout or an attack on the scheme’s soul?

While the government collects data on how many of the 450,000 NDIS participants have been affected by Covid, this covers only a portion of the 4.4 million Australians who report having a disability.

Prof Anne Kavanagh, a University of Melbourne academic, said 18 months into the pandemic “we still don’t know how many people with disability have had Covid-19 nor how many have died”.

“Last year the commonwealth government did report cases among NDIS participants but that data didn’t include the 4 million disabled Australians who are not NDIS participants,” she said.

“It is time this data was collected at the time of testing and contact tracing. Without that information government cannot be held accountable for how people with disability are faring in the Covid-19 pandemic.”

It has been estimated nearly six out of every 10 people who died with coronavirus in England last year had a disability. Another study found people with learning disabilities in England were eight times more likely to die from Covid than the general population.

The Morrison government argued during Victoria’s second wave that an NDIS participant was four times less likely to contract the virus than the Victorian general public.

But in a report handed down in November, the royal commission said in Australia “the deficiencies in the collection and dissemination of data” meant it was “not possible to obtain a complete or accurate picture of the infection and mortality rates from Covid-19 for people with disability”.

“The failure to collect and disseminate national data on the rates of infection and death from Covid-19 for people with disability is inconsistent with Australia’s obligations under article 31 of the United Nations Convention on the Rights of Persons with Disabilities,” it said.

Noting the commission’s finding, Guardian Australia asked the Department of Health if it was now collecting data on Covid cases among all people with disability, not just those within the NDIS.

A Department of Health spokesperson did not respond directly. “The Australian government continues to work with the states and territories to improve data collection and reporting on people with disability in Covid-19 outbreaks,” the spokesperson said.

“A national outbreak registry has been established on all Covid-19 clusters (two or more cases exposed in the same setting), with disability services as one of the settings of exposure.

“Some states are providing data disaggregated on this basis. As with the NDIS data, when the number of disability-related Covid-19 cases reported is low, public reporting is not consistent with the protection of privacy.”

Related: ‘Hit and miss’: fewer than one in five Australians in disability care vaccinated against Covid-19

Disability advocate El Gibbs said that current data collection was not good enough.

“So many of us have spent 18 months isolated and trying incredibly hard not to get Covid because we know that the risk for disabled and sick people is enormous,” Gibbs said.

“Now, we see that those of us who have got sick aren’t even being recorded, and aren’t seen as a priority. Is this why the vaccine rollout for our community is so behind?”

Overall, less than one in three disability residents have been fully vaccinated, despite being prioritised under the national rollout.

Catherine McAlpine, the chief executive of intellectual disability peak body Inclusion Australia, said people with intellectual disability had been overlooked at the start of the pandemic.

“It’s inexcusable that hasn’t changed,” she said.

“The disability royal commission made it clear that [better data collection] should happen and it’s incredibly disappointing it hasn’t,” McAlpine added.

Last week, three residents and two staff members at a disability group home in Sydney’s north-west tested positive, the second such facility to be impacted in recent weeks.

Guardian Australia also asked the government how many cases had been recorded among NDIS participants and workers during the current Sydney outbreak.

A Department of Social Services spokesperson said: “The number of Covid-19 cases among NDIS participants has remained low, however we are aware of a small number of recent cases.

“In order to protect people’s privacy we will not report on numbers less than five. We will report cases as per the commitment in the government response to the disability royal commission hearing on the pandemic.”