2020 Report: Mortality patterns among people using disability support services in Australia

In 2019 the NDIS Commission engaged the Australian Institute of Health and Welfare (AIHW) to provide a report about the rates of death among people with disability and the causes of those deaths. The best available data was for people who had used disability services in Australia between 2013 and 2018. This was linked to Medicare records and a national register of deaths. The findings from the research are summarised below.

An Easy Read of the AIHW Summary Report is available.

While the previously published Scoping Review focused on a subset of reviewable deaths relating to disability services in particular settings, this AIHW study investigated deaths for people who were using a broad range of disability services. This study establishes the baseline death rates for people using disability services compared to the general population.

The data from this study contains information about demographic and other factors that could be related to deaths, including potentially avoidable deaths, of people with disability.

It is important to stress that the concept of potentially avoidable death is a statistical term; referring to whole classes of health conditions where death may have been delayed or potentially avoided with more appropriate health care intervention (e.g. death from heart disease could potentially be avoided with improved diabetes management). These causes are classified using nationally agreed definitions and do not indicate these deaths have been individually assessed as avoidable.

AIHW report on mortality patterns among people using disability support services

The AIHW provided the NDIS Commission with a Summary Report and a Technical Paper, as well as a set of explanatory tables on the mortality (death) statistics for people who used disability services in Australia between 1 July 2013 and 30 June 2018. It compared deaths of people who had used services under the National Disability Agreement (study group) alongside those in the general Australian population.

Key findings of the AIHW report

The main findings were:

Compared with the general population, people using disability support services had higher rates of mortality

  • Over the five years of the AIHW study, people under age 65 using disability services were 4.7 times as likely to die compared to the general population under age 65 (650 vs 130 deaths per 100,000 people).

Leading causes of death varied across the study group.

  • Leading causes of death for the study population included perinatal and congenital conditions (6.3%), spinal muscular atrophy (5.9%), coronary heart disease (5.7%), suicide (5.2%) and cerebral palsy (4.3%). For the general population, suicide (8.9%) and coronary heart disease (8.7%) were the top two leading causes of death.
  • For people in the study population aged under 20, the 3 most commonly occurring underlying causes of death were perinatal and congenital conditions (21%), cerebral palsy and other paralytic syndromes (14%) and selected metabolic disorders (9.8%).

People with disability had higher rates of potentially avoidable deaths

  • People with disability had a crude rate (not standardised for age or sex) of 240 potentially avoidable deaths (PADs) per 100,000 people, which was 3.6 times as high as the general population after adjusting for age.
  • The leading potentially avoidable cause of death in the study population was coronary heart disease followed by suicide. These are also the two leading causes in the general population.

The rate of death varied by type of disability

  • People with acquired brain injury and neurological primary disabilities had the highest crude rate of death (1,900 per 100,000 people) while people with specific learning/attention disorders and autism had the lowest (76 and 66 per 100,000 people, respectively). This difference in rates is in part due to the difference in the ages among these groups.

The rate of potentially avoidable deaths varied by type of disability

  • People with acquired brain injury had the highest rate of potentially avoidable deaths (820 per 100,000), followed by those with a primary disability related to vision (430 per 100,000) and psychosocial disability (320 per 100,000).

The rate of death varied by type of disability service

  • Crude mortality rates were highest among people with disability receiving residential accommodation support (1,300 deaths per 100,000 people) or other accommodation support (1,500 deaths per 100,000 people). Lower rates of death occurred among those receiving community support (940 deaths per 100,000 people) and community access (790 deaths per 100,000 people) services.

These findings in the AIHW report highlight the opportunity to reduce the rates of potentially avoidable death for people with disability, including through disability and health service providers working together to ensure people with disability receive appropriate and high quality health interventions.

The issues identified in the AIHW report extend beyond the NDIS and the disability sector. The NDIS Commission will promote the research to other relevant government agencies and non-government bodies. It will also inform the work we undertake with other regulatory bodies and sector representatives arising from the Scoping Review to develop appropriate guidance, procedures and tools to assist in preventing avoidable deaths of people with disability.

The NDIS Commission will also continue to work with the AIHW on these issues. The data set which has been developed for this study contains further information which the NDIS Commission and the AIHW will continue to analyse. In addition, the NDIS Commission is working with the AIHW to link data on relevant health and other co-existing conditions (morbidity) to establish the various factors that may influence rates of illness for people using disability services in Australia.

Read about and download the AIHW Reports on the AIHW website.

An Easy Read of the AIHW Summary Report is available.