Families in the disability sector are calling for improved access to vaccine booking information, after repeated failed attempts to secure appointments.
Perth mother Julie Guilfoile said it has been an emotional rollercoaster attempting to get her son, who lives with a disability, his first COVID-19 shot.
Describing the booking process as a "mess", she said it has been frustrating to be told by the government and disability agencies that her son is a priority for vaccination, but to not have access to practical information on how to secure an appointment.
"There is ongoing anxiety for (my son) Eamon. And for all the people who care about Eamon, including his support team. The agency looking after the support team, they told us that as of Saturday, they had yet to receive the link for booking appointments (for people with a disability and their carers)."
Eamon Guilfoile, 25, lives with advanced cerebral palsy and was able to get his vaccination from 22 March as part of priority group Phase 1B.
It has taken nearly two months for him to finally get his first shot - the Pfizer vaccine - which he received on Friday at a state-run clinic.
"We felt cheated. We felt that the government hasn't been transparent (about the priority groups).
"They're not upfront about saying: okay, we've got limited vaccine supplies. So we're actually prioritising frontline workers over people with significant disability and vulnerability."
"That is what makes us angry. It's the lack of transparency."
Residents and staff in disability accommodation were prioritised in group 1A, eligible to get the vaccine from mid-February, while others living with a disability in the community were eligible to get the vaccine from 22 March as part of Phase 1B.
During the two-month delay, Eamon Guilfoile had spent stints of up to a month - and recently a fortnight - confined to his house, fearful of going outside due to the risk of exposure to the virus.
"Eamon has had cerebral palsy since birth and the impact of the condition on his body has left him with compromised organ function.
"He is very much at risk of aspiration (breathing difficulties) and to get something like the coronavirus is very serious for someone like Eamon."
Over that same period of time, Ms Guilfoile and her husband have both received their first COVID-19 shot, the AstraZeneca vaccine. They received it before their son.
"It's horrific really because he needed the vaccine so desperately, yet the irony was that we [my husband and I] could access it and he couldn't. And his people in his team needed to be able to access it as well to protect him.
"It has just been a mess, an absolute mess. There has been a lack of clear information. Even the email to book using the particular link I had - it is very, very long. And the first time I read it, I missed the 'click on here to book'. And I am not the first person to have missed it. Other parents I have been talking to have also missed it."
Ms Guilfoile said she tried multiple avenues, including ministerial advisors and the coronavirus hotline, since 22 March to get her son a vaccination booking to no avail.
She finally got the specialised booking link - not accessible via public websites - by chance from a parent in a support group.
"It affects people so, so deeply. I just hadn't realised carrying this was impacting me. The very genuine, and not exaggerated, concern and worry that I was carrying. My son who has endured so much in the last couple of years, who loves life, who has such a strong desire to contribute to society...for his life and contributions to be valued.
"Eamon is 25. Throughout his life - he and we, his family, continue to advocate because he continues to fall through the cracks. This isn't something new. It is really wearing.
"And the fact that I felt euphoric [after Eamon's vaccination]. I don't walk around euphoric, but it was such a worry."
Among Eamon's support team of carers, three have been able to get their first vaccine doses.
In response to questions from SBS News, NDIS Minister Linda Reynolds said the vaccine rollout in the disability sector is beginning to ramp up "as we now look to complete the COVID19 vaccination program through aged care facilities".
"Vaccination of people with disability and disability workers remains a high priority. I am continuing to work closely with Minister Hunt and state and territory colleagues to ensure people with disability and workers receive the COVID-19 vaccine as quickly as possible."
She said the main options for people in the disability sector to receive the vaccine now includes access to appointments at local GPs, GP respiratory clinics and state-run Pfizer hubs.
NDIS Minister Linda Reynolds said "vaccination of people with disability and disability workers remains a high priority". Source: AAP
The in-reach program is also being "expanded" where GPs and providers, such as Aspen medical, administer the vaccine in a person's home who is unable to attend a community clinic.
Federal Health Minister Greg Hunt on Monday said 172 in-reach visits to get the vaccine to people with disabilities had been conducted.
WA Health Minister Roger Cook told SBS News that from next week state authorities would be rolling out an online booking system and hotline for eligible people in the disability sector to book a vaccination appointment.
"People with disability, their guardians or decision makers will be able to log in and book a vaccination appointment at a suitable location around the State," he said in a statement provided to SBS News.
"WA Health is also working closely with the Department of Communities to access organisations who deliver services to people with a disability and inviting workers to attend a community clinic for either Pfizer or AstraZeneca clinic."
The that the rate of vaccination in disability accommodation for residents and staff is "extremely low".
Only four per cent of 26,000 residents in disability accommodation facilities had been vaccinated, as of 6 May. For support workers in the same setting, the figure was two per cent.
The associate secretary of the federal Department of Health, Caroline Edwards, told the Royal Commission that she to prioritise those in the aged care sector.
The Disability Royal Commission released a report in November last year, finding that it was a "serious failure" that no federal government agency had made "any significant effort" to consult people with disability or advocates during the early stages of the pandemic.
In its response, the federal government in April said it would adopt 21 recommendations in whole or in part.
It said acute care and triage decisions in settings such as state hospitals would be made by health care experts, but that the "Australian Government considers that disability should never be a criterion for rationing services, prioritising or excluding access to health care in Australia".
The commission's final report is due on on 29 September 2023, after a last week.
