Ms Regan was among a number of parents who told the commission their children had not been provided with the same level of healthcare as other Australians.
Erin, who is now 42, has needed to go to hospital many times for choking, seizures and other health issues. Ms Regan said the care given to her daughter had been variable.
“I believe that it comes down to doctors making social decisions for us rather than medical decisions,” she said.
Tara Elliffe, a 30-year-old woman with Down syndrome, told the commission about her “very scary” admission to hospital in 2018 for stomach pain.
“My head was exploding from all the noise and different people,” she said.
Ms Elliffe, who works at the NSW Ombudsman, said there were many things doctors and hospitals could do better to treat people with disability.
“Listen carefully to people with disabilities, ask simple questions, use pictures to help people understand,” she said. “Talk to me and not my parents.”
Ms Elliffe said doctors and nurses should have more disability training and people with disability should be able to tour hospitals when they were well to understand what to expect if they had to go to emergency.
“Just listen to us,” she said, when asked for a final contribution.
The royal commission was set up in April last year in response to widespread reports of neglect and abuse of people with disability.
On Thursday, it heard about 400 Australians with intellectual disability aged 20 and over die each year from potentially avoidable causes, because the health system is not equipped to meet their complex needs.
“I think that is a huge issue that speaks to the lack of equipping of people with disability with the knowledge they need to access health services, a lack of vision in policy and a lack of vision in health service provision for people with disability that ultimately leads to tragic outcomes like that,” University of NSW professor Julian Trollor said.
Judith Ireland is a political reporter for the Sydney Morning Herald and The Age, based at Parliament House