Study shows that more than a third of deaths in NSW of people with intellectual disability are preventable. The landmark study found that 38% of people with intellectual disability are being poorly serviced by the health system. During the study period some 17 per cent of the general population died of potentially avoidable causes, compared to 31 per cent of people with intellectual disability.

“Results of the study, carried out by the University of NSW, are confirmation of the kind of thing we have been aware of for some time.” NSW Council for Intellectual Disability, senior advocate Jim Simpson told F2L. “It involved not just hospital cases but also people living in the community.

“We are pursuing this human rights issue vigorously at both state and federal levels.  The NSW Health Minister Brad Hazzard has said he would be speaking to NSW CID about the study and what needed to be done.  We are also keen to speak with Federal Health Minister Greg Hunt.

“Time and again, people with intellectual disability and their families report to us that health professionals do not understand their needs and, in some cases, are flagrantly discriminatory.” The Council is calling for an end to the cost of intellectual disability discrimination following the release of the study, Simpson said.

“For a relatively modest investment the State Government could undertake the changes needed to end preventable deaths for people with intellectual disability. We are looking at approximately $50 million per year over 10 years to enable the implementation of the study’s recommendations in accordance with NSW Health’s own Framework to Improve the Health Care of People with Intellectual Disability.”

He said this included training for doctors and nurses, regular reporting of deaths with a strategy to address the shortfalls in services and access, KPI’s for Local Health Districts and funding of specialised intellectual disability health services to back up the mainstream.

Professor Brad Frankum, AMA NSW president acknowledged there were barriers when it came to assessing people with disability that can potentially influence outcomes. “In terms of providing for people in that situation it should not be any different (to others in the community) so is disappointing that it does sometimes,” he told F2L.

He admitted to being surprised at the results of the study. “However, when I stop and reflect, it is probably less of a surprise than it should be.  Possibly a similar situation can exist within aged care, for example where appropriate care for the elderly is not always the same as it can be for someone who is younger.  In the disability sector the person’s underlying illness or disability may affect the decisions being made but these should be well thought through in consultation with the patient and family.”

He said the AMA has no official policy on dealing with people with disability in these situations because it had only been highlighted following the release of the study.

Frankum did question that ‘38% of deaths of people with intellectual disability are preventable’ because in his opinion such data can be difficult to define. “When we look at other studies where figures for hospital admissions are preventable the definitions are often exaggerated.  In an ideal world where everything is perfect it would be preventable but it is not a perfect world.  We work in a resource-constrained system and people providing care, are human beings who are not infallible. “While we aim for perfect care we don’t always achieve it and that is human nature but that does not mean we should not be doing better.  When it comes to people with disability we absolutely should be.”

As for the government’s role in all of this he said rolling out the NDIS as quickly as possible will hopefully publicise, highlight and improve any inequalities for people with disability. “Also supporting advocates of people with disabilities who are constantly trying to get better services and encourage them to speak up and draw attention to any deficiencies where these exist.”

A report from the Public Advocate (QLD) released in 2016 showed similar results to the NSW study: that Queenslanders with intellectual disability are dying unnecessarily.

However, there has been no response to the report from the State Government after a year despite repeated requests from various health departments, Nick Lennox, Professor of Intellectual & Developmental Disability Medicine, and an advisor to the report, told F2L.

He said the challenge is dealing with the negative attitudes towards people with intellectual disability from everyone involved – from politicians to the person in the street. “What people with intellectual disability have to deal with in Australia is at least as poor as what is happening in the indigenous population. There is a deeply rooted negative attitude about people with intellectual disability. This profound devaluing is embedded in society whether it is a doctor or support worker and it colours everything in the lives of people with intellectual disability,” he said.

“The other issue is the quintessential problem of communication that is fundamental to our existence. If you cannot communicate it is a barrier to good health and wellbeing. It is hard to make a medical assessment when you are dealing with someone who cannot communicate and in some cases have no-one in their life who can help them.  Combine this with therapeutic nihilism and receipt of good healthcare is at best problematic.

“Something needs to be done to assist these people who have such poor health outcomes and the Public Advocate’s Deaths in Care Report identifies specific strategies that could be put in place to improve health and healthcare of this population,” Lennox said.

The report found the median age at death for males was 53 years (approximately 25 years less than the general population), and 49 years for females (approximately 36 years less than the general population). At the time of death, (89%) were living in either disability supported accommodation operated by a non-government organisation (53%), or in government-operated Accommodation Support and Respite Services (36%). Only (11%) were living in a level three accredited residential service.

People with disability in the sample were slightly more likely to die while in hospital, with 58% of people dying in hospital and 42% dying in their usual place of residence. More than half of all deaths in care reviewed (59%) were determined to be unexpected and over half of all deaths (53%) were considered to be potentially avoidable. Of those deaths deemed to be unexpected, 67% were also considered to be potentially avoidable.

According to acting NSW Ombudsmen, Professor John McMillan, people with intellectual disability in Australia die at least 25 years earlier than the general population. These people often have substantial and chronic health issues, but rarely get access to the preventative and community-based health programs that others with their conditions access, he said.