Summary

This report used linked data to examine deaths among people with disability who used disability support services funded under the National Disability Agreement (NDA) for the 5 years from 1 July 2013 to 30 June 2018. The study included 526,515 people aged under 65 who accessed disability support services, or about 23% of the 2.4 million Australians under age 65 with disability in 2018.

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

People with disability in the study had a mortality rate 4.7 times as high as the rate for the general population, after adjusting for differences in the age and sex structure of the populations.

The 3 most common underlying causes of death among people with disability in the study were perinatal and congenital conditions (6.3% of deaths), spinal muscular atrophy (5.9%) and coronary heart disease (5.7%). For people 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 using disability support services had higher rates of potentially avoidable deaths

People with disability had a crude rate of 240 potentially avoidable deaths (PADs) per 100,000 people. After adjusting for age, the rate for the study population was 3.6 times as high as the general population. The leading causes of PADs in the study population were coronary heart disease followed by suicide. These were also the 2 leading causes of PADs (and overall leading causes of death) in the general population.

The rate of PADs in Australia is used as an indicator of the health system’s effectiveness, with deaths considered potentially avoidable in the context of the current health system classified using nationally agreed definitions. They do not indicate that these deaths have individually been assessed as avoidable.

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 deficit disorder and autism had the lowest (76 and 66 per 100,000 people, respectively). This difference in rates is in part due to age differences between these groups, with those who had acquired brain injury and neurological disorders being typically older (median ages of 46 and 41 respectively), while those with specific learning/attention deficit disorder and autism were generally younger (median ages of 22 and 16, respectively).

The rate of potentially avoidable deaths varied by type of disability

People with acquired brain injury had the highest rate of PADs (820 per 100,000), followed by those with vision (430 per 100,000) and psychosocial (320 per 100,000) primary disability.

The rate of death varied by type of disability service used

Although the rate of death varied by type of disability service, this is likely due to the differing characteristics of individuals, including age, sex and underlying disability, that are related to an individual using each type of service. However, it is still important to understand mortality patterns across service types in order to consider where interventions and services can be best applied.

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). Lower rates of death occurred among those receiving community support (940) and community access (790) services, followed by respite (680) and employment services (320).

Cause of death patterns varied by disability and service type

Leading causes of death varied across different disability and service type groupings, closely related to the markedly different age and sex characteristics of service users in these groups. Age- and sex-specific rates are presented throughout the report wherever possible to illuminate these differences. Future work will further explore these interrelationships.