Updated! Royal Commission looks into health for people with intellectual disability

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability resumes this week with a public hearing on health care, investigating access to and treatment of people with a cognitive disability, including people with intellectual disability, autism and acquired brain injury, in the health system.

Update, October 21, 2020 - The Disability Royal Commission has now released a report from the hearing into health held in February 2020.

The report finds that people with cognitive disability have been, and continue to be, subject to systemic neglect in the Australian health system.

Royal Commission Chair, Ronald Sackville AO QC, said that the Commissioners heard harrowing evidence of people with disability being ignored or disregarded by the health system, with some doctors making unfounded assumptions leading to ‘diagnostic overshadowing’, and poor health outcomes.

“Despite the richness and variety of the lives of people with disability, societal attitudes can influence decision-making concerning their health care and treatment, with one witness identifying this as one of the key challenges to ensuring that people with intellectual disability receive high quality health care

The Royal Commission heard that a relationship of trust, confidence and respect between a person with cognitive disability and the medical practitioners who provide them with care and treatment is very important, as it is for all people.

The Royal Commission also heard that there is a need for independent advocacy services for people with cognitive disability, and their families, to support them to navigate the health system.

The Royal Commission will need to undertake further investigations and gather more evidence before making final recommendations on issues explored at Public hearing 4. However this Report identifies issues arising out of the hearing that will be the subject of further inquiry by the Royal Commission and, in due course, recommendations in the Royal Commission’s Final Report. The Final Report

Original Story

Throughout the Hearing into health, the Commission will hear evidence from medical professionals and people with disability, their families and supporters. It will investigate why people with intellectual disabilities are twice as likely to suffer preventable deaths, with communication barriers blamed for poor health outcomes.

The Chair of the Disability Royal Commission, the Hon. Ronald Sackville AO QC said the Royal Commission would hear directly from people with a cognitive disability about their experiences in the health system.

‘We will also hear from parents of people with intellectual disability, including some who have tragically lost loved ones. Medical practitioners, experts and advocacy groups, as well as government departments, will also give evidence,’ said the Chair.

Sackville acknowledged that one of the consequences of the experiences of people with a cognitive disability is such things as delayed diagnosis, misdiagnosis and even significant reductions in life expectancy.

The NSW Council for Intellectual Disability (CID) knows people with intellectual disability do not have equal access when it comes to health. Witnesses from CID gave compelling evidence on what it is like to try to access the health system with an intellectual disability.

“We want R-E-S-P-E-C-T!” said CID member Kylie Scott.

CEO of CID Justine O’Neill says that people with intellectual disability have a lower life expectancy of up to 27 years. Researchers from UNSW’s Department of Developmental Disability Neuropsychiatry (3DN) have found that too often, people with intellectual disability either receive inadequate medical care or treatment that is too late.

"Let’s support people with intellectual disability to make their own decisions. Focus on preferences, not best interests. If doctors don’t listen to people, things go wrong." - Justine O’Neill, CID CEO

Senior Counsel Assisting the Royal Commission, Ms Kate Eastman SC, will be responsible for conducting the hearing. Four Commissioners will attend:

• The Hon. Ronald Sackville AO QC (Chair)
• The Hon. Roslyn Atkinson AO
• Barbara Bennett PSM
• Professor Rhonda Galbally AC

The hearing will be live-streamed on the Royal Commission website and include live captioning and Auslan-English interpreters.

Watch now

Contact details

Disability Royal Commission

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