Five individuals will give evidence to the disability royal commission on Monday about their experience with national vaccination rollout's lack of inclusion or information for people with disabilities.

Stephanie Gotlib has been questioning federal and state health authorities for months about how her son Adam will receive his COVID-19 vaccination.

As a fully grown adult with high communication and behavioural support needs, Adam will need to be sedated at a hospital to receive the injection.

After realising his treating doctor - a pediatrician - has herself received no information for situations like Adam's, Ms Gotlib then faced the run-around of automated messages, scripted phone support, and generic letter replies that offered no clarity.

"We've gotten nowhere ... I'm not going to be able to jump online [on the Vaccine Eligibility Checker] and book a sedation for my son," Ms Gotlib says.

"I am deeply concerned that there hasn't been due consideration and planning for people with Adam's needs."

The only option she's received so far was from her son's dentist, who could attempt to obtain a vaccine dose and give it to him while also performing routine dental maintenance under general anaesthetic.

This is the option of last resort for Adam, who has no immediate need for dental treatment.

Adam has not been able to participate in the volunteer activities he normally enjoys due to pandemic lockdowns, including harvesting at the local urban farm and working at his former primary school's canteen. Due to his cognitive capability, he does not understand why a cough or not being vaccinated impacts others.

Pia Sappl has cystic fibrosis and runs a network of people with the condition. For some in their CF network, contracting COVID-19 could be a death sentence.

"People have been calling their CF clinics, because usually that's where we get our annual flu vaccination, but they have no information about the government's rollout plans," Ms Sappl says.

Attempts to phone around GPs to get the Pfizer vaccine has been a struggle.

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"They might not be registered to administer the vaccine, or their waitlist for so long, that they've needed to call around other GPs and try to find clinics that are taking on new patients," she said.

"For people who are in the Australian armed forces or are health care workers, they've been vaccinated and had the information brought to them - it's been made easy. For people with cystic fibrosis, that hasn't been our experience."

One member of the CF group said they were worried about the ability of people who are more unwell or less confident in negotiating the system, that it was survival-of-the-fittest in regards to getting the COVID vaccination.

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