more_vert
After 4.5 years of investigation, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability delivered their final report to the Australian Government in September 2023. Volume 6, section 4 outlined health care and treatment. On 31 July 2024, the Australian and joint governments released their first response to the DRC final report.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (hereafter, DRC) delivered their final report to the Australian Government in September last year. In addition to gathering important testimony of past and current experiences of violence, abuse, neglect and exploitation, the 12-volume report included 222 recommendations to improve laws, policies, structures and practices to ensure a more just society that supports the safety, human rights, inclusion and independence of people with a disability.
Health care findings – the gap
In Volume 6, section 4 (Health care and treatment), the report noted:
“There is a huge gap between the health outcomes experienced by people with disability and those experienced by the rest of the community, that people with cognitive disability are subject to systemic neglect in the Australian health system, and that there are many barriers preventing people with all types of disability from enjoying the highest attainable standard of health without discrimination”.
Commissioners noted that the testimonies of people with disability and their families were “powerful and consistent” [pg335]. They also noted the high rate of avoidable deaths for people with intellectual disability [pg333].
The recommendations included implementation of the 10-year National Roadmap for Improving the Health of People with Intellectual Disability that includes elements such as better use of existing Medicare Benefits Schedule funding items, improved care coordination and increasing levels of support for health care professionals [pg330]. The commissioners noted that implementing the roadmap should include co-design with people with intellectual disability to ensure reforms were effective.
Health professionals
The DRC report noted that ableist attitudes and practices adversely impact the quality of health care received by people with cognitive disability, and that health professionals often consciously or unconsciously make negative and false assumptions about the quality of life of people with disability [pg333]. It noted that negative attitudes can also lead to “diagnostic overshadowing”, which occurs when a person’s symptoms or behaviours are wrongly attributed to their impairment rather than to an unrelated health problem or condition [pg520].
The DRC report also highlighted that First Nations people with disability experience significant additional challenges in managing their health and accessing health services because of distance, lack of cultural understanding and discrimination [pg337].
Suggested reforms included amending education accreditation standards and all stages of education and training to include cognitive disability components [pg362].
Person-centred care
The DRC report outlined a range of adaptations and supports based on person-centred approaches [pg378] such as:
- creating additional appointment time;
- yearly medication reviews to monitor for adverse side effects and initiate deprescribing of psychotropic medications often used as chemical restraints;
- involving support people in care provision;
- ensuring access to Auslan interpreters;
- ensuring materials are provided in plain English or Easy Read;
- prioritising early morning or late afternoon appointment times to avoid prolonged waiting periods;
- environmental modifications and aids to reduce sensory loads, such as dimmer lighting, reduced background noise and noise-cancelling headphones;
- preparatory actions to familiarise the person with clinical environments, such as hospital tours and animated videos;
- different modes of service delivery, such as home visits;
- openness to novel and flexible approaches to pre-medication, including sedation, to reduce distress and anxiety before critical medical procedures.
Australian and joint governments response to the DRC
On 31 July 2024, the Australian and joint governments released their first response to the DRC final report. The Australian Government accepted in full only one of the health recommendations [data collection and reporting on psychotropic medication] and two subsections: accepting annual reporting processes by health accreditation authorities and broadly, rights to equitable access to health services.
They accepted in principle all other recommendations except for one – the recommendation to expand the scope of the National Centre of Excellence in Intellectual Disability Health to include people with cognitive disability was simply noted. The accompanying discussion suggested broadening the scope of the centre could dilute the intended focus on intellectual disability into very broad health care for people with cognitive disability such as autism [pg96].
A controversial recommendation related to non-therapeutic sterilisation of people with disability, a practice the disability community have long wanted banned. The response noted that they are committed to protecting the human rights of people with disability and will work to strengthen protections in relation to non-therapeutic procedures [pg107].
A further recommendation related to the challenging area of misuse and overuse of psychotropic medicines. They noted “the Australian Commission on Safety and Quality in Health Care is finalising the Psychotropic Medicines in Cognitive Disability or Impairment Clinical Care Standard (Clinical Care Standard) to provide national clinical guidance on the appropriate management, and use of, psychotropic medicines for people with cognitive impairment” [pg103].
The Australian Government has dedicated $3.7 million to continue the Primary Care Enhancement Program in providing training and resources to general practitioners and health professionals to improve quality of care for people with intellectual disability [pg28].
Advocacy organisation DANA was disappointed, frustrated and concerned that so few recommendations were accepted in full and that there was a lack of concrete steps to address issues highlighted by the DRC. Further, Australia’s Disability Discrimination Commissioner Rosemary Kayess has also urged stronger commitment. A statement by National Disability Representative Organisations includes a joint call for all levels of government to urgently act on the 222 recommendations including providing clear timelines within the next six months on all recommendations accepted in principle.
You can read the joint response here.
You can read the Australian Government response here.
Raelene West is a Research Fellow at the Melbourne Disability Institute – University of Melbourne. Her research field is critical disability studies, with a focus on delivery of support services. Dr West has also been involved in disability advocacy, has lived experience of disability and has been on numerous disability committees. She has worked for several years on various disability and aged care research studies, and has co-authored eight published journal articles and five major reports.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
Subscribe to the free InSight+ weekly newsletter here. It is available to all readers, not just registered medical practitioners.
If you would like to submit an article for consideration, send a Word version to mjainsight-editor@ampco.com.au.