The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability started its first round of hearings for 2020 in Homebush, Sydney, with a focus on how people with intellectual disability experience the healthcare system.
Over the two week hearing, the Commission will be investigating access and treatment of people with a cognitive disability, including intellectual disability, autism and acquired brain injury, in the health system.
Currently, 1.8 percent of the population has an intellectual disability and more than half a million (60 percent) Australians living with intellectual disability experience profound or severe impairments in core activities of daily living.
These daily living issues can be compounded by difficult access to the healthcare system and the quality of treatment they receive.
Chair of the Commission, the Honourable Ronald Sackville AO QC opened the first day of the hearings on 18 February, saying, "As we shall hear in evidence, the consequences of neglect or abuse by or within the health system for people with cognitive disability are as disturbing as they are profound. They should shock the conscience of all Australians."
Commissioner Sackville also made comments on the rates of life expectancy for those who have a disability.
"Recent research has shown that the median age of death for people with intellectual disability in New South Wales is 27 years less than the general population, 54 years versus 81 years," says Commissioner Sackville.
"That's a gap of 27 years. People with intellectual disability in New South Wales aged between five and 69 years of age have three times the number of deaths that would be expected in the general population."
The Commission heard from Chair of Down Syndrome Tasmania, Dr Rebecca Kelly.
Dr Kelly's son, Ryan, lives with Down syndrome and has had two or three surgeries a year for the first five years of his life. Ryan also has six or seven different specialist clinics that he attends.
Because of her son's complex health needs, Dr Kelly highlighted the need for communication in the health system.
She says, "I think our health system is very fractured. And as soon as you move away from those major centres and the tertiary operation, like the tertiary hospitals, the link between our local hospital and that tertiary centre is not good and the communication is very poor."
Because of the lack of communication in the health system, Dr Kelly says she has become the "conduit" of her son's medical information.
Dr Kelly says, "The only sort of record of most of it is in my head because it's not in all these notes and there's no simple easy place to find all of these things. And it changes all the time too, because obviously things are changing, every appointment we go to things change."
Despite taking measures to ensure Ryan is as comfortable as possible, Dr Kelly says that the number of treatments, visits, investigations and hospital interactions has resulted in trauma.
Dr Kelly explains, "We minimise unnecessary investigations or observations and, where possible, we respect the boundaries he sets and his bodily autonomy.
"Major investigations are left until he is under anaesthetic and after a pre-med to minimise his memories of these procedures.
"All these things have made a huge difference to him. Regardless, trauma has had a significant and ongoing impact on his life, both in terms of his enjoyment in life and his development."
She adds that the attitude of a doctor can indicate whether a visit to a hospital will go well.
"The first thing is that they treat him like a child. And I always have that sense when someone comes in, [and] they start to use the label 'the Down syndrome child', you go, 'okay, we're going to have a problem here' because [they're] seeing the label and not the child," says Dr Kelly.
Issues with communication between various areas of the healthcare system flagged
On day two of the Commission, 19 February, Commissioners heard from several witnesses concerning the Australian healthcare system and intellectual disabilities.
Rachel Browne's son, Finlay, who lived with Down syndrome, died in 2016. He died 71 days after an intestinal obstruction was found.
Ms Browne echoed comments from the first day about the importance of communication, advocacy, and education.
"I think education all round for parents, for families, for carers, for supports, for clinicians. I think to listen to the parents. They're the strongest advocates. They know their children best. Except, I didn't realise how hard I was going to have to advocate for my child," says Ms Browne.
When her son was admitted to the hospital for the last time, Ms Browne felt there was "a distinct lack of urgency" in his care.
She told the Commission, "I felt that Finlay should have been packaged, ready for retrieval, that he would be monitored appropriately...that maybe they would monitor him and that help would come, that [doctors], given the serious nature of what they had discovered, would be actioning better monitoring of Finlay."
Ms Browne is also pushing for intellectual disability and disability not to be included on a death certificate if it wasn't the cause of the person's death.
Witness Toni Mitchell also spoke to the Commission about accessing healthcare for her son, Joshy.
She told the Commission, "[Doctors] just dismissed him with Down syndrome and gave him more and more medicine.
"We would go to emergency and they would go, 'Oh, he has Down syndrome.' Like, we know, but there's more. But because they could see the Down syndrome, that would be the end of their examination. And so they missed so much."
Issues with communication between various areas of the healthcare system were once more flagged when her son had to transition from the child system to the adult system.
"[Doctors] weren't able to access the Children's Hospital [files]. And some of the Children's specialists refused to write me referrals. So he still hasn't seen his [adult] counterpart," says Ms Mitchell.
The current Commission hearings on health will continue until Friday, 28 February.