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Disability RC reveals important medical history

  • 02 March 2020
Over and over the last two weeks, the same words echoed. They didn’t listen to me. They didn’t see me. They didn’t think I was worth helping.

Disabled people, and those that love them, have told the latest hearing of the Disability Royal Commission about their experiences in the health system. Neglect, abuse, violence all featured, with medical people and systems often talked about, not as caring health professionals, but as callous and cruel.

The hearing opened with Commissioner Sackville, the Chair of the Disability Royal Commission, talking about the Convention on the Rights of Persons with Disabilities, which Australia signed up to in 2009, and in particular Article 25 which states that ‘persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.’

As the hearing continued, the gulf between our rights in this Article, and the reality for many people with intellectual disability was stark. People with intellectual disability die decades before their non-disabled peers, and over 400 people with intellectual disability die every year in ways that could have been prevented.

People with intellectual disability don’t get access to the same kinds of preventative screenings as non-disabled people, with a major study finding that people with intellectual disability are ‘eight times more likely to die from cancer in a 10-year period.’ People with intellectual disability have high rates of psychosocial disability, but don’t get access to treatment, and are twice as likely to be admitted to hospital.

The people giving evidence this week, opening up about the hardest parts of their lives, had clear ideas about what needs to change to make the health system work for them. The key issues that were raised during this hearing included access to health care, communication, diagnostic overshadowing, restraint, substitute and supported decision making, along with attitudes and discrimination from health practitioners and systems.


'Each story told over the last two weeks is a thread in a wider picture of a medical system that won’t change.'  

Kylie Scott lives in a flat in Sydney, and is often consulted for her expertise about health care needs of people with intellectual disability, giving speeches and sitting on representative committees. She told the Disability Royal Commission how important communication from health practitioners is, such as asking short questions in plain English and being patient. She raised the importance of having ‘more psychologists for people with intellectual disability