Avoidable deaths an NDIS red flag amid transition fears

New figures reveal that dozens of people with disabilities are dying potentially avoidable deaths each year.

The extreme vulnerability of people transitioning to the National Disability Insur­ance Scheme is laid bare in new figures revealing that already in Australia — in a system meant to be heavily ­regulated — dozens of people with disabilities are dying potentially avoidable deaths each year.

An investigation by The Australian, using what limited data is available in the National Coronial Information System, highlights the potential ramifications of moving people into a new system without sufficient protections and safeguards. The NDIS, launched under a federal Labor government and progressed under the Coa­lition, from Friday will be rolled out in all states and territories over a three-year period.

It will cover most ­aspects of the ongoing care and support given to about half a million Australians.

However, days before this milestone, key stakeholders remain unclear as to how the NDIS will be pulled together, with concern those with the most intensive needs will fall through the cracks.

The most recent data from the coronial system shows that, in the six years to the end of 2013, there were 107 deaths in residential care facilities due to external causes not related to a disability or underlying health issues.

The deaths were only those brought to the ­attention of coroners, and where a report was finalised, but of those 84.1 per cent were unintentional.

Analysis shows that, for 39 people, or 36.4 per cent overall, the cause of death was asphyxiation by choking, often on food. For 13 people, or 12.1 per cent overall, the death was a result of falling, stumbling, jumping or being pushed.

The Office of the Public Advocate in Queensland did its own analysis of deaths in that state and found that 53 per cent were potentially avoidable.

At the time, the public advocate, Jodie Griffiths-Cook, warned that “as we learned from the pink batts program, good intentions are no protection against tragic outcomes if you don’t get the framework right”.

That analysis examined the cases of five people who died due to choking on food or food ­asphyxia and found three had a swallowing assessment and mealtime management plan and yet they still died during mealtime at the disability residential service.

In one case, a man in his 40s with intellectual disability needed food cut up into very small pieces and given to him gradually, but died after being given a piece of cake.

Another with similar feeding requirements, and needing fluids to keep washing down the food, was left unattended and tried to eat a sausage that ended up killing him.

Perhaps the most stunning case examined by Queensland’s Public Advocate was that of a man in his 60s with an acquired brain injury who had a soft-food diet and needed to be positioned in such a way as to help him eat and digest the food.

Despite multiple assessments, and similar directions reinforced to staff at his disability residential service, there were several choking incidents and emergency calls for an ambulance. He died after being given a burger and chips for lunch.

The Queensland Public Advocate is calling for annual reporting on deaths in care to shine a spotlight on such incidents and also, during the transition to the NDIS, to help raise the alarm should there be sudden increases in any categories.

A spokesman for the Queensland government said the state was working on a response to the Public Advocate’s report and also helping other jurisdictions develop a much-needed national quality and safeguarding framework for the NDIS. That framework, which key stakeholders hope will include a strict reporting regime, is not due to be discussed by the COAG Disability Reform Council until later this year.

The Australian asked the Nat­ional Disability Insurance Agency whether annual reporting of deaths was likely to feature in the framework and was referred to the federal Department of Social Services, which declined to comment.