Death of people with disability

It's important for both the NDIS Quality and Safeguards Commission and NDIS providers to understand and address the possible causes and contributors to deaths of people with disability. The NDIS Commission has commissioned research into the Australian patterns of mortality in people who used support services and then identified the risks factors for death or serious injury of people with disability. This research helps us make system wide changes to reduce those risks. 

Mortality patterns among people using disability support services in Australia

The NDIS Commission engaged the Australian Institute of Health and Welfare (AIHW) to create a report about mortality patterns of people using disability supports. The report identifies causes and risk factors for deaths in people with disability, particularly where the death was attributed to their disability also known as 'overshadowing'. 

 The main report findings were: 

  • compared with the general population, people using disability support services had higher rates of mortality 
  • the leading causes of death varied across the study group 
  • people with disability had higher rates of potentially avoidable deaths 
  • the rate of death varied by type of disability 
  • the rate of potentially avoidable deaths varied by type of disability 
  • the rate of death varied by type of disability service. 

The complete Mortality patterns among people using disability support services in Australia report is available on the AIHW website. There is an Easy Read version of the summary report available to view. 

Potentially avoidable deaths of people with disability in Australia in 2013-2018

This report summarises the findings of an NDIS Commission led analysis of 9,062 deaths among 526,515 people accessing disability services under the National Disability Agreement (NDA) from 2013 to 2018. The study built on the Australian Institute of Health and Welfare report, and primarily aimed to identify all contributing health risks for potentially avoidable deaths (PADs). 

See the Potentially avoidable deaths of people with disability  in Australia in 2013-2018 report.

Scoping review of causes and contributors to death of people with disability in Australia

This review found that within the report data: 

  • the median age at death was substantially (20-36 years) lower than that of the general Australian population 
  • the overwhelming majority of deaths within the scope of the project involved people with intellectual disability 
  • there were high levels of co-occurring mental health concerns, including depression, self-harming behaviours and anxiety. 
  • the vast majority of people who died experienced multiple health problems in addition to their disability, including dental problems and epilepsy 
  • the majority of deaths were ‘unexpected’ and attributed to ‘natural causes’ like illness and disease 
  • some areas of concern are respiratory issues, deaths related to choking, epilepsy and neoplasms or circulatory disease. 

See the Scoping review of causes and contributors to death of people with disability in Australia.

Independent review into the circumstances relating to the death of Ann-Marie Smith 

In 2020 the Hon. Alan Robertson SC was appointed to conduct an independent review into the NDIS Commission’s regulation of the provider of NDIS supports and services to Ms Ann-Marie Smith, an NDIS participant. Ms Smith died on 6 April 2020 in appalling circumstances. 

Mr Robertson presented a final report to the NDIS Quality and Safeguards Commission and recorded a video summary of the report. 

In response to regulatory recommendation 2 in the review, the NDIS Commission consulted with stakeholders about permanently applying a condition of registration on providers registered to deliver the class of support ‘Assistance with daily personal activities’.  

Stakeholder consultation related to regulatory recommendation 2:

Resources

Easy Read: Mortality patterns among people using disability support services in Australia – documents

Potentially avoidable deaths of people with disability in Australia in 2013-2018

Scoping review of causes and contributors to death of people with disability in Australia – documents

Summary of key findings

Summary of recommendations

Easy Read: Research on the causes and contributors to deaths of people with disability in Australia

Independent review into the circumstances relating to the death of Ann-Marie Smith

Report on stakeholder consultation related to regulatory recommendation 2 - NDIS Commission Cover note

Report on stakeholder consultation related to regulatory recommendation 2 - Final report

Independent review of the adequacy of the regulation of the supports and services provided to Ms Ann-Marie Smith, an NDIS participant, who died on 6 April 2020