By Professor John McMillan and Steve Kinmond
In Australia, people with intellectual disability die at least 25 years earlier than the general population.
They often have substantial and chronic health issues, but rarely get access to the preventive and community-based health programs that other people with their conditions access.
They need support in hospital and other health services, but tend to experience significant adverse outcomes because steps aren’t taken to identify what help they need and how to provide it.
This is the situation that the NSW Ombudsman’s office has identified in its reviews of the deaths of people with disability in residential care, and has publicly reported for the last 15 years.
It has now been highlighted in a landmark study by UNSW, which has found potentially avoidable deaths among adults with intellectual disability at over twice the rate of the general population. This is unacceptable in Australia.
The disparity and disadvantage is stark. Some of the most vulnerable people in our society, with substantial health challenges and risks, do not receive the health services and treatment they require.
To present it in a different way, here are some examples of what we have seen in relation to people with intellectual disability — not in isolated cases, but in multiple cases over many years:
- people experiencing choking incidents and aspirating after being given, or accessing, food and drink in hospital that did not match their mealtime requirements
- people pulling out cannulas, removing oxygen masks, physically resisting examinations and treatment, and experiencing falls without appropriate support in hospital
- people discharged from hospital without guidance for their carers on the support they needed to manage risky health issues, such as asthma management and treatment of pressure sores, and
- people recorded as ‘not for resuscitation’ on admission to hospital despite being young and admitted for a treatable condition.
Human rights not consistently upheld
Our work has also shown very little access of people with intellectual disability to certain important community-based health programs.
Similarly, while many people with disability in residential care have multiple health risks related to lifestyle factors, including obesity, poor diet and insufficient physical activity, very few of those whose deaths we have reviewed had access to preventive health programs.
Every two years, our office reports to Parliament on the deaths of people with disability in residential care in NSW.
Our work has consistently found substantial gaps between what is required — by the UN Convention on the Rights of Persons with Disabilities, the National Disability Strategy, and policy directives — and what is experienced by people with intellectual disability.
As it stands, the rights of people with disability — including the right to be provided with the same range, quality and standard of health care and programs as other people; to be provided with care of the same quality as other people; and to be free of discriminatory health care practice — are not consistently upheld.
Concerns over NDIS rollout
As identified in our most recent report, it is critical that action is taken as a matter of priority to address this situation, and to close the gap and improve health outcomes for people with disability in NSW ahead of the full transition to the National Disability Insurance Scheme (NDIS).
Our work has underscored the considerable risks that exist for people with intellectual disability if mainstream services are not ready at the point of transition to the NDIS and withdrawal of NSW Government-funded specialist disability supports.
Our most recent report includes a range of recommendations that are targeted at addressing this situation and improving health outcomes for people with disability, including:
- implementing mechanisms to coordinate access and care for people with disability in health services
- creating a dataset to identify people with intellectual disability and measure the performance of health services, and
- clarifying the future arrangements for the provision of a range of health related services that are currently funded by the Department of Family and Community Services (FACS).
To date, the progress of agencies in implementing the recommendations has been very slow.
We will continue to monitor progress, and will report again to the NSW Parliament on this work in 2017.
However, we recognise that the experience of people with intellectual disability in NSW is not unique.
We are keen to see a national effort to close the gap in the disparity in health outcomes between people with intellectual disability and the general population.
The National Disability Strategy — and strong governance arrangements for the implementation of the strategy in states and territories — provides a useful mechanism.
It is simply unacceptable that people with intellectual disability in our community are dying from preventable causes at over twice the rate as other Australians. We must close this gap.
The Ombudsman’s biennial reports on the deaths of people with disability in residential care are available on the NSW Ombudsman’s website.
Professor John McMillan is the acting NSW Ombudsman. Steve Kinmond is the Deputy Ombudsman.
9 February 2017 | 5:20 am
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