Research: deaths of people with disability

Understanding causes and contributors for deaths among people with disability

Providing NDIS participants with quality supports and services in a safe and competent environment with care and skill is an important obligation for all NDIS providers, and is fundamental to the rights of people with disability.

In this context, it is especially important that both the NDIS Quality and Safeguards Commission (NDIS Commission) in its regulatory role, and NDIS providers delivering supports and services, address the causes of and contributors to deaths of people with disability to prevent avoidable deaths.

Under the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018 all registered NDIS providers are required to notify the NDIS Commission of reportable incidents that occur, or are alleged to have occurred, in connection with the provision of supports or services by registered NDIS providers. Reportable incidents include the death or serious injury of a person with disability, the abuse or neglect of a person with disability, and other types of serious incidents.

As a result of this reportable incident function, the commencement of the NDIS Commission in each state and territory by 1 December 2020 establishes, for the first time, consistent national arrangements for reporting the deaths of people with disability that occur in connection with the provision of NDIS supports or services by registered NDIS providers across Australia.

In 2019 the NDIS Commission commissioned two pieces of research on the deaths of people with disability. We decided to focus on deaths because we knew that existing death reviews had already identified a number of risks to the lives of people with disability but had not necessarily resulted in action being taken to reduce those risks. We wanted to establish a strong evidence base to enable us, as the regulator of quality and safeguards for the NDIS, to take action on a systemic basis to reduce those identified risks of death or serious injury. We are just as concerned to take action to reduce risks of other serious injuries, abuse and neglect to people with disability, and we are working with the data we have and developing our data analysis to help us identify how best to reduce these risks on a systemic basis.

2019 Report: Scoping review of causes and contributors to deaths of people with disability in Australia

As part of the NDIS Commission’s function to monitor and report on deaths of people with disability who received NDIS funded services, the NDIS Commission contracted the UNSW Department of Development Disability, Neuropsychiatry to undertake a Scoping Review on causes and contributors to deaths of people with disability based on available data.

The NDIS Commission committed to undertake a number of actions in response to the Scoping Review. These included publishing provider alerts on a range of topics such as dysphagia and mealtime management and the need for regular comprehensive healthcare plans; building capacity in providers and workers around mealtime management and supporting people with communication impairment; and developing an additional requirement in the Practice Standards and Quality Indicators to explicitly address quality and safety in mealtime supports.

While we have commenced work on many of these actions, progress has been delayed as a result of the COVID-19 pandemic and our need to respond to it. For example, the timing for release of planned provider alerts– with the exception of the practice alert on influenza vaccinations – has been impacted due to the need to release a large number of communications around the COVID-19 pandemic. Notwithstanding these delays, we are continuing with the important work identified in our response to the Scoping Review and will provide updates on progress going forward.

Read about and download the Scoping Review.

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.

While the Scoping Review focused on a subset of reviewable deaths relating to disability services in particular settings, the 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 NDIS Commission, in partnership with the AIHW, is continuing to investigate the mortality data for more detailed patterns that may support the identification of risk indicators and opportunities to provide guidance on better practice. In the next stage of work the AIHW will work toward a further data linkage to high-level morbidity data (illness and co-existing conditions) to establish the relationship between morbidity indicators and potentially avoidable deaths.

We will also draw on the research to inform our data and reporting activities, and make necessary enhancements to our reporting system to better inform our regulatory action.

Read about and download the AIHW Report.

Related resources

This document outlines the NDIS Practice Standards and Quality Indicators as defined in the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018.