The rollout of the coronavirus vaccine to people in disability residential facilities has been an "abject failure", an inquiry has heard.
A senior federal health department official has revealed that the decision to refocus the vaccine rollout to prioritise those in aged care was made in the first week of March.
The associate secretary of the federal Department of Health, Caroline Edwards, appeared before the Disability Royal Commission's public hearing on Monday, which was convened to examine the "extremely low rates of vaccination" in the disability sector.
Ms Edwards said medical advice about the risk to elderly and the death of 685 Australian aged care residents prompted her to make the decision.
"I did not make a decision to de-prioritise disability, I made a decision to save the people most at risk of disease and death," she said.
"I considered the 685 people who died in aged care. I made that decision, I stand by that."
Ms Edwards said she herself did not seek advice on the implications for people with disabilities or inform them even as consultations were ongoing about the vaccine rollout, but she did rely on the advice from the chief medical officers about the risk to those in aged care.
"It is my understanding that age is the single most significant factor of severe disease and death from COVID-19 ... and setting of aged care with more residents - it puts them at the greatest risk of death."
Questioned by senior counsel assisting the Royal Commission Kate Eastman about whether legal advice was sought about the implications of her decision as it might touch on anti-discrimination legislation, Ms Edwards said no legal advice was sought.
She also confirmed in response to questions from Commissioner Ronald Sackville that no inquiries were made to determine the risk of severe disease and death from COVID-19 to people with disabilities.
"No, we haven't made any inquiries in relation to any individual. We have made decisions to address those at greatest risk [aged care residents and staff]."
The inquiry heard four per cent of residents in disability residential facilities - or 999 people out of 26,000 residents - had been vaccinated against coronavirus.
Commissioners Barbara Bennett, chair Ronald Sackville QC, Roslyn Atkinson and Professor Rhonda Galbally. Source: Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
Just two per cent of workers in disability residential facilities have been vaccinated as of 6 May, the inquiry heard.
"The Australian government rollout of vaccines to people with disability in residential care - and these are people who represent some of the most vulnerable people in our population - has been an abject failure," Ms Eastman said.
Ms Edwards acknowledged the low rate, saying it reflected the need to have an "agile program".
"It is really low. I think it reflects us needing to have an agile program; and we have much more work to do in this element."
She said three options are being worked on to improve vaccination access for the disability sector.
"At this point there are three major channels available: firstly, the in-reach program [with disability residential facilities] which is modest, but will ramp up future weeks. Those over 50 who can get AstraZeneca, we have communications that those in the disability sector to use that channel.
"The state vaccination hubs - every state and territory has agreed to prioritise disability and are now working to prioritise those people."
She said a strategy is being developed to reach people with disabilities living outside disability accommodation facilities who may not be able to leave their residence.
'The impact of COVID on our community is massive'
People with disabilities, advocates and academics have told the Royal Commission that the delay in the vaccine rollout in the disability sector is exacerbating concerns about vaccine hesitancy among some people living with disabilities and support workers.
The Senate Committee looking into COVID-19 impacts heard that the rollout in the disability sector is behind schedule; only 6.5 per cent of 25,000 residents in disability accommodation facilities have been vaccinated, as of late April.
Pia Saple, a young single mother with cystic fibrosis, says there is a strong desire amongst cystic fibrosis sufferers to get the COVID-19 vaccine to allow them to engage more in the community.
"The impact of COVID on our community is massive. People have isolated, people have lost work through exposure risk and increased mental health," Ms Saple, who is also founder of the Australian CF Hub website and support group, told the Royal Commission.
"People are totally keen to get the vaccine. The problem is the access."
She said there is a lack of information on how to secure vaccine bookings for people with disabilities and that redirects from vaccine clinics to the government website and local GP have not resulted in any answers.
Those views were echoed by other people with disability who gave evidence to the Royal Commission.
Uli Kaplan, who has an intellectual disability and lives in a disability residential facility, said while there are concerns about how the vaccine will interact with other medications people are taking, there is a firm desire to have the vaccine.
Pia Saple says she and many other cystic fibrosis sufferers are very willing to get the COVID-19 vaccine, but have been unable to book an appointment. Source: Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
"Throw politics out of the window. Just give us the vaccine. I am sitting here nervous not having it," he said.
"I spent three-and-a-half months locked in my unit for my own safety because I had cases in my facility."
Suzannah MacNamara, who has an intellectual disability and lives in a group home, said despite two other residents in her accommodation facility having had the COVID-19 vaccine with no side effects she still has concerns about the vaccine.
"I am a bit scared. I am concerned that I might die at a young age. I am scared to take it."
The organisation that operates disability residential facilities, the National Disability Services, told the Royal Commission that NDIS Minister Linda Reynolds sent an email on Friday afternoon informing service providers about timelines for vaccinations, including provisions to allow up to a one week notice to obtain consent.
The CEO of National Disability Services, David Moody, said he welcomed the new information, but said the sector has been operating in the dark for the past three months of the rollout.
NDIS Minister Linda Reynolds has sent an email to disability service providers with updated timeframes and logistics for the vaccine rollout in the disability accommodation facilities. Source: AAP
"Our view is that the phase 1a rollout has been unsuccessful to say least. it was supposed to be concluded by March and it wasn't."
“We were delighted to get priority access alongside aged care [in phase 1a]. And by virtue of that we're even more disappointed that it hasn't been delivered in reality at this point.”
He said he still stuck by his earlier call to have a mandatory policy to vaccinate disability support workers to provide protection for those with disabilities, subject to exceptions under public health orders.
A need to improve messaging
University of Melbourne Professor Anne Kavanagh said in her study of 368 people would leave the sector if a mandatory vaccination policy was implemented.
But 11 per cent said they would get vaccinated under such a policy.
Implementation issues aside, there is a real opportunity to improve the messaging for those in the disability sector.
“We have concentrated on the individual risk. It is really important to get across the message of the community benefit to [disability support workers] for the people they support," she said.
“Part of the issue is that there is the poor understanding of the vaccines. We asked participants how you would stop COVID-19, whether they thought it was less likely [54 per cent thought that], there are poor understandings of efficacy and high concerns for safety.”
She said as an epidemiologist, her research finding that vaccine hesitancy is an issue among disability support workers is concerning.
“We know we need 50 per cent of support workers to get vaccinated to provide protection for them and to also provide protection for people they're supporting.
"That level [17 per cent] not willing to get the vaccine is concerning. And a high proportion of that group are what we called in the study COVID-specific vaccine refusers, who otherwise generally support vaccination."
'It was a failure to estimate correctly'
Ms Edwards conceded that there was a "failure" initially to correctly estimate the size of the disability sector - residents and workers - who would need vaccinations as one of the priority groups.
"I accept that 6,000 [disability residential facilities] is a lot of less than the 26,000 facilities that we now understand to live in supported accommodation of two or more people," she told the public hearing.
"The numbers estimated in the [vaccine strategy] document on 7 January were an underestimate and we were always aware that we needed more granularity to ensure the implementation was appropriate.
"I accept there was an underestimate of the numbers in the aged care and disability sectors - and that underestimate was an error by the Department of Health.
"It was a failure to estimate correctly."
Ms Edwards acknowledged the Department of Health needed to improve its communication with those in the disability sector, saying that the challenges of vaccine supply and storage and changing advice on AstraZeneca use for those under 50 were further complicated by the disability residential settings.
"We have identified large number of logistical issues...it has been a continually changing environment because of the changing understanding of the vaccine and storage and logistics; the learnings about vaccine hesitancy. That affects rollout to all groups - including people with disabilities."
The final report of the Disability Royal Commission is set to be handed down on 29 September 2023, after a last week.
