Close the Gap

The Hon. K.L. VINCENT (15:31): Today, I would like to talk about a Dignity Party campaign to Close the Gap. Not the close the gap you may associate with the closing of the average age of death gap between indigenous and nonindigenous Australians, although that is important, but the gap between Australians with intellectual disability and those without. A public health research article published recently in the BMJ Open journal indicates that there is an urgent need for a national death reporting system for Australians with an intellectual disability.

This recent study was funded, in part, by the New South Wales Department of Family and Community Services, the Department of Ageing, Disability and Home Care and part by the mental health branch of the New South Wales Ministry of Health. The study investigated mortality and its causes in adults over the age of 20 years with an intellectual disability, and included 42,204 people registered for disability services in New South Wales with a primary or secondary diagnosis of an intellectual disability—so a very big sample size. The fact that it excluded people under the age of 20 makes this study very relevant. It means that people with an intellectual disability, who may have died young because of congenital conditions associated with their disability, for example heart conditions in around 50 per  cent of people born with Down Syndrome, are excluded.

The findings bear lessons for South Australia, and indeed the whole nation. Compared to the general population in New South Wales, people with an intellectual disability died on average 27 years earlier. This is a larger gap than we see between indigenous and non-indigenous Australians. The overall comparative mortality figure was 1.3, but was substantially higher for the 20 to 44 and 45 to 64 year age groups. Cause of death in people with intellectual disability was dominated by respiratory, circulatory, neoplasm and nervous system.

After recording deaths previously attributed to the aetiology of the disability, 38 per cent of deaths in people with an intellectual disability were potentially avoidable compared to 17 per cent in the general population. The top causes of potentially avoidable deaths were cardiovascular, infections, cancer, other and respiratory. The publication calls for urgent action, including a national system of reporting the deaths of people with intellectual disability and a broad array of measures to address the health inequalities and close the mortality gap for people with intellectual disabilities. Recommendations are:

Australian governments should develop comprehensive responses that address the inadequacies of health policy, services and access to services for people with intellectual disabilities;

strategies should be paired with regular reporting of health status outcomes for people with intellectual disabilities. This already occurs in other countries, such as the United Kingdom; and

health services currently funded by state government disability services are threatened with defunding in the roll out of the NDIS.

I have previously spoken in this place about the vital work of the Centre for Disability Health in Adelaide but cannot stress the importance of maintaining this model to keep that service going, even after fully transitioning to the National Disability Insurance Scheme. The Centre for Disability Health offers people with complex disability related needs access to the healthcare system which they simply do not have at the moment in the mainstream healthcare system. Without it, they risk being overmedicated to control behaviours, without having the underlying cause of that behaviour addressed. They risk going many years, potentially the rest of their lives, without adequate healthcare.

People with disabilities face many issues when presenting to the health system. We might have staff assume that our health condition is directly related to our disability and therefore not properly addressed. I have had constituents tell me that they have been told that they cannot bring their support staff with them to service them in hospital, meaning they may go days without a shower because the hospital staff are not trained to deliver this assistance. We might present to a hospital with a comprehensive support plan only to be told that it does not count as it is not an official document.

This is why the Dignity Party is pleased to work alongside agencies like the Chief Nurse to ensure that there is more ability to support the autonomy and expertise of people with disabilities and our families in the healthcare system. Working together with the Chief Nurse, we can ensure that hospital staff are able to include and respect the needs of all people, starting by clarifying across the board that a person's usual support plan is to be adhered to. With measures like this, we can make it easier for people with disabilities to access the healthcare system, helping us lead longer and healthier lives. By instilling policies which demand inclusion and respect and that people with disabilities be given as comprehensive health care as any other person, we can save money, time and even lives.