Healthcare: hearing, finding and recommending

What has the Disability Royal Commission heard?

The Disability Royal Commission has heard about the systemic neglect and mistreatment of Autistic people by Australia’s healthcare and mental healthcare systems.

It has heard about:

  • Negative perceptions and a lack of autism understanding across health systems, creating barriers to person centred care and choice and control, and leading to the use of restrictive practices.
  • Delayed diagnosis and misdiagnosis of many Autistic people, including “diagnostic overshadowing”, such as when physical or mental health symptoms are misattributed to disability.
  • The trauma and distress health procedures and treatment can cause for Autistic people. It has heard that the sensory environment can affect the behaviour and emotional state of Autistic people, which can lead to distress-induced behaviours such as resisting treatment or attempting to remove medical devices.
  • The need for more research into the health of people with cognitive disability, including autism.

The Commission has heard about the importance of professional and staff training in the healthcare of people with cognitive disability. It has also heard about the need for improved communication and information sharing, strong advocacy, data collection and better integration of health and disability services. 

It has heard from:

  • Jana, about her son Dev who is Autistic, has a mild intellectual disability and has been diagnosed with Williams Syndrome. Jana spoke about the neglect Dev experienced in the healthcare system, including misdiagnosis and its initial failure to treat a health condition. Dev experienced significant pain and suffering, and Jana had to engage in strong advocacy before Dev was treated. Jana also spoke about presumptions by healthcare staff that Dev was non-verbal and could not have choice and control over his care.
  • Sam, who is Autistic and has functional neurological disorder and co-occurring mental health conditions. Sam spoke of significant neglect and abuse they had experienced from mental health professionals, including misdiagnosis, diagnostic overshadowing, being talked down to and ignored, and some health care professionals refusing mental health care due their autism. On one occasion they were told to ‘find (and pay for) a private autism specialist’. Sam spoke of the need for healthcare professionals to be trained in disability and how to avoid diagnostic overshadowing. He also spoke of the need for mental health services to be more accessible to Autistic people. “We simply need the same quality of medical care as our non-disabled peers’.

What has the Disability Royal Commission found?

The Disability Royal Commission has found:

  • Systemic neglect: There has been, and continues to be, a systemic neglect of people with cognitive disability, including autism, across Australia’s health system.
  • Poor understanding: Autistic people can experience a range of co-occurring health conditions which are either not known, are misunderstood or are poorly managed. This can result in poor health and, in some cases, potentially avoidable deaths.
  • Inadequate training for health care workforce: Education providers are failing to consistently teach health care students about how to provide safe and quality healthcare for people with cognitive disability, with no specific requirements to teach healthcare students about this topic. Clinical placements do not consistently prepare students with skills to provide care for patients with cognitive disability, such as autism.

What has the Disability Royal Commission recommended?

The Disability Royal Commission has identified a number of requests it is making to the Australian Government to improve health services for Autistic people. These include:

  • Develop a national roadmap to improve health services for Autistic people.
  • Consider a strategy for encouraging annual health assessments for people with cognitive disability.
  • Revise the Medicare Benefits Schedule (MBS) item numbers applicable to comprehensive health assessments for Autistic people and people with intellectual disability, including a strategy to encourage uptake of the revised MBS items.
  • Improve communication between health professionals and people with cognitive disability, including autism.
  • Develop a cognitive health capability framework that informs education and training for health practitioners across all training stages, co-designed by people with cognitive disability and their supporters.
  • Ensure that continuing professional development programs for health care professionals and staff address the health care of people with cognitive disability, including autism.

The Disability Royal Commission has also committed to:

  • Seeking updates from the Australian Government on existing programs, and new initiatives required at a national level, to improve health and mental healthcare for Autistic people.
  • Requesting that primary health networks provide information concerning regional planning, integration and commissioning of mental health services for people with cognitive disability, including autism, at a local level.
  • Investigating how co-ordination can be achieved between health care and disability services to address the complex health needs of Autistic people and people with intellectual disability.

For further information, please see the Commission’s Interim Report,  Report from Public Hearing Report 4 and Report from Public Hearing 10.

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