The Australian Government response to the Disability Royal Commission: Implementing strategies for improvement for people with disability within Australia’s health care system
Rae West details the Disability Royal Commission’s findings and recommendations on improving healthcare for people with disability, and the Australian Government and joint governments responses - as well as the disability community’s frustration at how few recommendations were accepted in full. An edited version of this blog is to be published in MJA InSight newsletter shortly.
Introduction – the DRC
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (DRC) was established in April 2019. It was established in response to concerns about reports of both past and continuing violence, abuse, neglect and exploitation of people with disability within our communities.
The DRC investigated and reported on experiences and conditions in all settings and contexts such as schools, workplaces, group homes, family homes, and day programs - including hospitals and healthcare settings. The DRC ran for 4.5 years, reviewed 7944 submissions and conducted 32 public hearings with 837 witnesses (of whom 209 were people with disability).
On 29 September 2023, the DRC Commissioners delivered its final report to the Australian Government, consisting of 12 volumes of work. In addition to gathering important testimony of past and current violence, abuse, neglect and exploitation of people with disability, the Commission undertook and presented an extensive body of work of strategies to prevent and better protect people with disability from experiencing violence, abuse, neglect and exploitation, and to develop strategies for improvement of practice and continuing improvement in both service delivery and social inclusion. This included 222 recommendations on how 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 disability.
Healthcare findings – the gap
In specific relation to healthcare, Volume 6 Section 4 Health care and treatment details a raft of strategies, plans and recommendations on removing barriers and improving health care practice and the environments in which healthcare is delivered across Australia. It acknowledged firstly that: ”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 were ‘powerful and consistent’ and that the barriers that currently exist are formidable to the extent that there is a high rate of avoidable deaths for people with intellectual disability [pg333].
The DRC report noted that people with disability aged 15 to 64 are less likely (47 per cent) to have some form of private health insurance than those without disability (59 per cent). This supports evidence of a well-known impact on access to health care.
Specific reforms recommended include implementation of the 10 year National Roadmap for Improving the Health of People with Intellectual Disability (the National Roadmap) that details nine key elements including: improving supports for people with intellectual disability and their families and carers, better use of existing Medicare Benefits Schedule funding items, improved care coordination and increasing levels of support for healthcare professionals [pg330].
The DRC report highlighted that in developing the National Roadmap, it was important to ensure the participation of people with disability in decision-making, in developing accessible public health interventions, information and digital health services, and in building the disability capability of health professionals including developing person-centred and rights-based practice.
Health professionals
The DRC report detailed that some people with disability still face discrimination from healthcare staff, in particular people with severe disability or in remote areas [pg336], and that negative attitudes and assumptions by healthcare staff can also result in healthcare staff failing to recognise and respond when people with disability are experiencing violence, abuse, neglect and exploitation and present at a clinical setting. The DRC report highlights 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].
The DRC report emphasised that ableist attitudes towards disability are deeply connected to cultural beliefs and practices that see disability as a deficit or departure from a ‘norm’. The DRC report noted that ableist attitudes and practices adversely impact the quality of healthcare 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’. Diagnostic overshadowing occurs when a person’s symptoms or behaviours are wrongly attributed to their impairment rather than to an unrelated health problem or condition. This may lead to delayed or mistaken diagnosis of serious medical conditions. Diagnostic overshadowing may be a consequence of insufficient education or training concerning cognitive disability. The DRC report highlighted that health professionals needed education and training to improve communication with people with cognitive disability, their parents, carers and support persons [pg520].
The DRC report noted that education and training are critical to reducing the health inequities faced by people with cognitive disability, and that the evidence showed a lack of systematic training about cognitive disability health for health professionals in all health disciplines throughout their careers [pg354]. This included expansion of the cognitive disability health capability framework as an available and critical strategy to ensure that cognitive disability competencies, curriculum content and resources are developed across health practitioner programs [pg356]. It also identified a need to develop specific competencies on health risks and vulnerabilities associated with particular disabilities, such as Down syndrome and cerebral palsy (suggesting that health professionals need an understanding of common disabilities), as well as knowing how to find out about less common conditions [pg358].
This included increasing exposure of disability within health professionals’ training curricula, amending education accreditation standards to include cognitive disability health, and expanding scope of the health workforce capability development to include all forms of cognitive disability at all stages of education and training.
Person-centred care
A person-centred approach requires health professionals and institutions to be flexible and ready to adjust standard procedures to minimise the distress and trauma that people with cognitive disability often experience when they interact with the health system in Australia [pg378].
The DRC report outlined a range of practice reform considerations based on person-centred care such as:
the use of more medication reviews to monitor for adverse side effects and provide an opportunity to initiate deprescribing of psychotropic medications often used as chemical restraints
considering the impact of the sensory environment on a person with cognitive disability, particularly if presenting to an emergency department, noting it is a ‘stressful, anxiety-provoking situation’ for anyone and can lead to ‘increased challenging behaviours or distress for a person with intellectual disability’
considering that repeated distressing healthcare interactions can cause people with cognitive disability and their families to lose trust in the health system and fear further interactions
a strong support for annual health assessments as a way to ‘support early detection of emerging diseases and improve monitoring and effective treatment of existing conditions’
the importance of open and effective communication in meeting the health needs of people with cognitive disability to reduce distress and anxiety, and then ensuring health professionals are given the needed knowledge, skills and attitudes to enable effective communication
ensuring that materials are provided in plain English or Easy Read, conveying information by visual images and other forms of accessible communication particularly for [Autism] Spectrum as a communication-based disorder in providing effective and respectful communication
increasing the health literacy of people with disability to develop the skills required to make their own voices heard
protocols to ensure they permit people with disability to be accompanied by a support person when accessing health care
The DRC report noted that the failure of health staff to provide adaptations and supports often creates unnecessary trauma for people with disability, particularly children. It also leads to avoidance of health care and abandonment of procedures. Some practical and relatively low-cost adaptations discussed included:
creating additional time
involving support people in care provision
ensuring access to Auslan interpreters
prioritising early morning or late afternoon appointment times for people with disability 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
taking a forward-looking approach to minimise distress associated with certain procedures such as taking extra blood to reduce the need for additional blood draws, and undertaking multiple procedures at once if sedation is required
openness to novel and flexible approaches to pre-medication, including sedation, to reduce distress and anxiety before critical medical procedures
System coordination
Experts and education providers agree that it would be valuable to centralise and share resources to support improved education, training and practice in cognitive disability health. There is also broad support for the establishment of a network of centres of excellence or a national centre of excellence to bring together expertise and lead research in cognitive disability health to support the translation of research findings into practice nationally.
This included introducing ‘disability health navigators’ to assist people with cognitive disability and complex health issues to navigate the health system and drive practice improvement [pg399].
You can read Volume 6 of the DRC final report here: https://disability.royalcommission.gov.au/publications/final-report-volume-6-enabling-autonomy-and-access
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 (underlined in the appendix below).
One recommendation on non-therapeutic sterilisation split state responses between Agree in principle and Subject to further consideration. This dividing recommendation was on controversial practices related to non-therapeutic sterilisation of people with disability, a practice the disability community have long wanted banned. The overall Australian Government 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].
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 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” [pg 103].
The Australian Government has dedicated $3.7 million to continue the Primary Care Enhancement Program (PCEP) work 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 were 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 providng clear timelines within the next six months on all recommendations accepted in principle.
You can read the joint response here – and the Australian government response here.
Appendix - Health Recommendations
Recommendations 6.24–6.25: Health system capability regarding cognitive disability
Australian Government Response: Accept in principle
The Intellectual Disability Education and Training Expert Advisory Group is currently providing advice on the existing work to develop supporting resources for the Intellectual Disability Health Capability Framework, which was finalised in December 2023 [however] Immediate expansion of the Framework …would carry significant risks …these include diluting the impact of the current Framework in addressing the specific needs of people with intellectual disability …with other forms of cognitive disability.
Recommendation 6.26: Role of Health Ministers in monitoring progress of the intellectual disability health capability framework
Joint Response: Accept in principle
Recommendation 6.27: Reporting by health accreditation authorities
Australian Government Response to 6.27 (a) and (b): Accept in principle
Australian Government Response to 6.27 (c): Accept
The Australian Government can support annual reporting processes on progress that might be made by those professional bodies through existing governance structures.
Recommendation 6.28: Access to clinical placement in disability health services
Australian Government Response: Accept in principle
Recommendation 6.29: Specialist training in cognitive disability health care
Australian Government Response: Accept in principle
The Government has dedicated $3.7 million to continue the Primary Care Enhancement Program (PCEP) …to enable Primary Health Networks to continue providing training and resources to general practitioners and health professionals and improve access to resources and quality care for people with intellectual disability.
Recommendation 6.30: Expand the National Centre of Excellence in Intellectual Disability Health
Australian Government Response: Noted
The National Centre of Excellence in Intellectual Disability Health (the Centre) is not an appropriate mechanism to achieve this intent. Simple expansion carries significant risks and would dilute the focus of the Centre on the specific needs of people with intellectual disability … with other forms of cognitive disability. The Australian Government supports in principle further development of national leadership in education, training and practice for Autistic people and people with cognitive disability
Recommendation 6.31: Right to equitable access to health services
Joint Response to 6.31 (a): Accept
Joint Response to 6.31 (b): Accept in principle
Enacting this recommendation will enable a more person-centred approach to health care planning and delivery, reduce health disparities, provide guidance to patients, and set clear expectations on health services and clinician
Access to high-quality health care …includes permission to be accompanied by a support person in as many health settings as possible. These instances will be minimised …and state and territory governments will ensure that disability adjustments and supports are fully provided where support workers cannot be present.
Recommendation 6.32: Accessible health care
Joint Response: Accept in principle
Aspects of this recommendation require further consideration in the context of any changes to Australia’s human rights framework
Recommendation 6.34: Health navigators
Joint Response: Accept in principle
Stakeholders, including people with disability would be consulted as part of the scoping of disability health navigation.
Recommendation 6.37: Data collection and reporting on psychotropic medication
Australian Government Response: Accept
The Australian Government accepts this recommendation in full, as there are safety and quality issues arising from the misuse and overuse of psychotropic medicines. To improve health outcomes for people with cognitive disability or impairment, 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 disability or impairment.
Recommendation 6.38–6.40: Restrictive practices
Australian Government Response: Accept in principle
The Australian Government supports in principle the National Disability Research Partnership (NDRP) commissioning a longitudinal study of the impact of positive behaviour support and other strategies to reduce and eliminate restrictive practices and supports its co-design with people with disability and other relevant stakeholders.
Recommendation 6.41: Non-therapeutic sterilisation
ACT and WA: Accept in principle
Commonwealth, NSW, QLD, NT, SA, TAS, VIC: Subject to further consideration
The Australian Government and state and territory governments are committed to protecting the human rights of people with disability and will work to strengthen protections in relation to non-therapeutic procedures resulting in permanent sterilisation of people with disability.
As sterilisation is a surgical procedure, state and territory jurisdictions are better placed to regulate this practice. Very rarely, sterilisation cases may come before the family law courts for decision under the welfare of children power in the Family Law Act 1975.