Royal commission to hear 'shock' concerns from Australians with cognitive disabilities

The disability royal commission is investigating problems faced by people with cognitive disability trying to access treatment in the health system.

Sydney woman Kylie Scott and the Coucil for Intellectual Disability's Justine O'Neill and Jack Kelly have addressed the Disability Royal Commission.

Sydney woman Kylie Scott and the Coucil for Intellectual Disability's Justine O'Neill and Jack Kelly have addressed the Disability Royal Commission. Source: Twitter/@inclusionoz/@CIDvoice

People with disabilities are viewed by the medical profession as broken and in need of fixing, the disability royal commission in Sydney has been told.

In his opening address to the commission on Tuesday, chair Ronald Sackville QC told the inquiry there was a large difference in life expectancy for people living with intellectual disability in NSW.

Over two weeks the commission will hear directly from several people with cognitive disability as well as parents, medical practitioners, experts, advocacy groups and government representatives.
The inquiry expects to hear about research which shows the median age of death for people in NSW with intellectual disability is 27 years earlier than the general population - 54 years compared to 81 years, Mr Sackville said.

The same group when aged between five and 69 had three times the number of deaths than the general population, he said. People in NSW on the autism spectrum also have a mortality rate over twice that of the general population.

The consequences of neglect or abuse within the health system for those with cognitive disability are "as disturbing as they are profound," Mr Sackville said.

"They should shock the conscience of all Australians."
Rebecca Kelly, whose eight-year-old son Ryan has complex medical needs including Down syndrome, said people with disability were seen as "in some way broken" and needed to be made "as normal as possible".

"Doctors are all about curing stuff and ... if you can't cure it under that model then you eradicate it under that model," Dr Kelly told the hearing.

"If you think that person's life is a tragedy and that they suffer from this condition then you start to believe that it's an act of kindness or that it's a responsible act to do all you can to prevent that birth, and that becomes quite coercive."

The same medical model impacts the care a child receives throughout life, she said.

"If you have a doctor (who) thinks that possibly your life's going to be a little bit better if your child doesn't make it because they're taking that burden away from you, that has horrible implications for the level of care that you don't get," Dr Kelly said.

"That child isn't going to be valued in the same way that another child (would be)."

Dr Kelly said she'd like to see fundamental change in the way doctors are trained to break the idea that age or disability devalues humanity.
Another witness, Ruth Oslington, said the public mental health system needed improvement, particularly for people with severe and complex illnesses.

In video evidence recorded in 2019, Ms Oslington said she often felt like withholding information from her mental health team for fear of being forced to receive unwanted treatment.
Ms Oslington told the commission she was restrained, put in a seclusion room and given injections after becoming distressed and trying to self-harm while in hospital.

Despite withdrawing consent for electro-convulsive therapy, Ms Oslington said she was given about 30 more treatments against her will. She said the therapy did not help alleviate her mental illness.

"Everybody deserves good mental health care - that means care that addresses the practical, physical, social and psychological aspects of illness, rather than focusing only on medication," she said.
"Nobody should need to be scared of mental health services."

The inquiry continues on Wednesday.

Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at


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Published 18 February 2020 12:16pm
Updated 18 February 2020 6:01pm


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