The final report of the Royal Commission has laid much of the blame for the neglect and exploitation of people with disability at the feet of systemic or service delivery failures in the Australian health system.
The final report makes 222 recommendations across all sectors, following 32 public hearings, 1785 private sessions, more than 700 engagement activities and almost 8000 submissions.
“Neglect of people with disability occurs in multiple forms and across different stages of their lives,” the commissioners wrote.
“We heard distressing accounts of severe deprivation, including from a very young age, and of people with disability dying as a result of gross neglect.
“The forms of interpersonal neglect we have identified are often connected to or enabled by systemic or service delivery issues and include:
- depriving people of necessities of life;
- failing to assist people with daily activities;
- preventing or limiting the opportunity for people to develop personal relationships or friendships, or to engage in community activities;
- developmental neglect, such as failing to provide an environment for each person to maximise their potential;
- failing to prevent people being exposed to the risk of violence, abuse, neglect or exploitation.”
The commissioners reported that people with disability were routinely denied the access to or participation in the health system that they were entitled to as members of the general population.
“We consider this to be a form of neglect,” they wrote.
“Public hearing evidence, supported by research, submissions and private sessions, illustrated the many ways in which policies, practices, failures and omissions in mainstream settings and services exclude people with disability.
“A failure to provide adjustments, adaptations or supports was a persistent experience.”
Modelling prepared for the Royal Commission estimated that every year 550 people with disability experience a potentially avoidable death as a result of violence, abuse, neglect and exploitation.
“One research report provided to the Royal Commission shows that in a cohort of 19,362 people with intellectual disability registered with disability providers in New South Wales, the average age of death was 27 years lower than for the general population (54 years, compared with 81 years),” said the report.
Other commissioned modelling estimated that people with disability experience 79,000 potentially avoidable hospitalisations per year due to inadequate primary health care.
The report detailed horrific numbers about barriers to access, including the fact that in the previous 12 months 3.5% of people with disability aged 15 to 64 – 59,100 people – reported experiencing unfair treatment or discrimination by health staff (either a GP, a nurse, or hospital staff).
Of those, 83% had a “physical restriction” and 58% had a psychosocial disability.
Other barriers:
- 85% of people with disability aged 18 to 64 and 76% of people with severe disability reported experiencing no barriers to accessing health care when needed in the last 12 months, compared with 97% of people without disability;
- Around 84,000 people with disability aged 15 to 64 had difficulty accessing medical facilities (a GP, dentist or hospital) in the previous 12 months; and,
- almost one in five people with disability aged five to 64 who need help with healthcare activities (18%) have their need for assistance only partly met or not met at all.
Exclusion from healthcare
The commissioners concluded that people with cognitive disability “have been and continue to be subject to systemic neglect in the Australian health system”, and that the devaluing of lives and unconscious bias were endemic in the system.
“Personal accounts shared with the Royal Commission show the lives of people with disability being devalued from birth, across life stages and into death,” the commissioners wrote.
Ms Christine Regan described how, when her 25-year-old daughter Erin had a stroke, she was not offered a nine-month “stroke protocol” for care, with the treating doctor saying words to the effect of “she has Down syndrome, how hard are you going to try?”.
Other personal accounts to the Royal Commission included experiences of people with intellectual disability being referred for palliative care rather than being provided with other available medical treatment because of assumptions about the value and quality of their lives.
Diagnostic overshadowing – when symptoms or behaviours are attributed to a person’s disability rather than considered signs of particular health problems or conditions that are unrelated – was also rife in the healthcare system, the commissioners found.
“This can result in delayed diagnosis or a failure to diagnose a treatable condition for a patient with disability, which can clearly have profound consequences,” they wrote.
Healthcare professionals not listening to families and carers was a common experience, with many accounts of life-sustaining treatments only being accessed after prolonged arguments with clinicians and administrators who were dismissive of concerns.
Many people with disability require supports or adaptations in order to access health care.
Experiences shared with the Royal Commission, which related mainly to people with cognitive disability, described failures to provide those supports and adaptations which resulted in experiences of trauma, use of restrictive practices, missed or incomplete appointments or procedures, and further care not pursued, based on previous experiences.
