Healthcare

The Disability Royal Commission made a number of findings and recommendations on healthcare in their ‘Enabling autonomy and access’ report. It made two autism specific recommendations to:  

1. improve the education and training of healthcare professionals.
   Recommendation 6.25 and see p.361: Expand the scope of the work on an ‘intellectual disability health capability framework’ for education and training to include autism specific content; or prioritise a separate disability health capability framework relating to autism and other cognitive impairments. The Framework must be co-designed with people with lived experience of cognitive disability. 
2. bring together experts and resources, and drive research on autism health.
   Recommendation 6.30: Expand the remit of the National Centre of Excellence in Intellectual Disability Health to include autism and other forms of cognitive impairment.  

It also made a number of findings to address the systemic neglect of people with cognitive disability (including some Autistic people) across the Australian health system. These findings were informed by evidence from Autistic people and their families and supporters. 

For an Easy Read version of the Commission’s report on healthcare ‘Using accessible services and better decision-making’, visit here.

What the Commission found

• People with cognitive disability face systemic barriers to healthcare and do not enjoy the right to health recognised by the Convention on the Rights of Persons with Disabilities. Barriers arise because of attitudes and structural arrangements in the health workforce, lack of access to person-centred care and other systemic issues.  
• There is a significant gap in health outcomes experienced by people with cognitive disability, relative to the general population and their healthcare needs. 
• The complexity and fragmentation of the health system, and difficulties navigating it, disproportionately impacts people with cognitive disability, particularly as they transition to adult healthcare.  
• Access to information and communication is a critical protective factor from violence, abuse, neglect and exploitation for Autistic people.  
• Ableist attitudes and practices adversely impact the quality of healthcare received by people with cognitive disability, and health professionals often make negative or false assumptions about the quality of life of people with disability.  
• Negative attitudes can lead to diagnostic overshadowing (where symptoms or behaviours are wrongly attributed to a person’s disability rather than an unrelated health condition). This may be a consequence of insufficient education and training concerning cognitive disability, as well as reflect an underlying ableist culture within the health system. Diagnostic overshadowing can result in a delayed diagnosis or a failure to diagnose a treatable condition. 
• People with cognitive disability are more likely to have treatable pain ignored or overlooked and wait longer for a diagnosis than people without disability. 
• People with cognitive disability can experience significant trauma and distress while undergoing health procedures or treatment, including as a result of the sensory environment.  
• Inadequate attention to preventive health strategies and promotion of healthy practices can lead people with cognitive impairment to experience the onset or exacerbation of multiple health conditions. 
• Open and effective communication are essential to meeting the healthcare needs of people with cognitive disability, including reducing distress and anxiety and improving the accessibility of health services. This includes communication between health professionals and patients, and their families or support persons, as well as between different health professionals and health services.  
• People with cognitive disability in regional, rural and remote areas face significant barriers accessing adequate healthcare with specialist services often concentrated in large metropolitan areas. This can also include delayed or lengthy emergency transfers to metro hospitals.  
• There is a scarcity of appropriately funded, targeted and reliable research on the health needs and healthcare of people with cognitive disability. There are also limitations in national data collection. 
• There is a lack of systematic training about cognitive disability health for health professionals, which likely occurs in all health disciplines throughout their careers. 
• Education providers of health practitioner or postgraduate medical programs are not currently required to deliver education or training about specific competencies or capabilities in cognitive disability health. 
• There is also a lack of consistency in the approach taken by education providers of entry-level health practitioner programs to teaching about cognitive disability health. 
• Clinical placements do not consistently provide students with opportunities to develop skills in cognitive disability. 
• Limited education and training is provided by medical colleges on cognitive disability, and it does not systematically cover the core aptitudes of cognitive disability health.  

What the Commission recommended

The Commission made two autism specific findings on healthcare: 

1. Recommendation 6.25 and see p.361 of Volume 6: Expand the scope of the work on an ‘intellectual disability health capability framework’ for education and training to include autism specific content (or prioritise a separate disability health capability framework relating to autism and other cognitive impairments). The Framework must be co-designed with people with lived experience of cognitive disability. 
2. Recommendation 6.30: Expand the remit of the National Centre of Excellence in Intellectual Disability Health to include autism and other forms of cognitive impairment.  

The Commission’s recommendations to reform the healthcare system for people with cognitive impairment will also be of specific relevance to some Autistic people. They were strongly informed by evidence from, and about the needs of, Autistic people. These recommendations include: 

1. Recommendation 6.28: Improve access for healthcare students to placements that build their understanding of cognitive disability health.  
2. Recommendation 6.29: Improve access to specialist training and professional development in cognitive disability health for health and allied healthcare professionals.  
3. Recommendation 6.32: Increase access to healthcare services by co-designing a list of frequently needed adaptations and supports (such as environmental/sensory modifications, social stories, different methods of service delivery and novel approaches to pre-medication and sedation).  
4. Recommendation 6.33: Provide specialised multi-disciplinary health and mental health services for people with cognitive disability, including specialist assessment and clinical services.  
5. Recommendation 6.34: Embed safe, accessible and inclusive practice in everyday health service provision, including through Disability Health Navigators to help people with cognitive disability and complex health navigate the system. 

To read the Commission’s final report in full on ‘Enabling autonomy and access’, visit here.   

Some of the lived experience stories shared by the autism community

• Jana gave evidence about her son Dev who is Autistic, has a mild intellectual disability and has been diagnosed with Williams Syndrome. She 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 co-occurring mental health conditions, 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’. 

Do you need more information or support?

If you would like more information about these findings or recommendations or have any questions about the Commission or its report, we encourage you to contact Your Story Disability Legal Support on 1800 77 1800, online here or by email here.   We appreciate that reading this page and hearing the lived experience stories shared may raise mixed emotions and cause anxiety or distress for many people. If you, or someone you know, needs support, the following services are available.

• National Counselling and Referral Service at Blue Knot – 1800 421 468 or visit the website.
• Beyond Blue 24/7 Support – 1300 224 636 or visit the website.
• Lifeline 24/7 Crisis Support – 13 11 14 or visit the website.
• 1800 Respect – 1800 737 722 or visit the website.
• Disability Gateway – 1800 643 787 or visit the website.
• 13 YARN – 13 92 76 or visit the website.
• If you or someone you know is in immediate danger, contact triple zero (000).