Democratising Disability Data

Democratising Disability Data: Achieving safe and secure access to disability data and statistics to provide the evidence needed to optimise services and policy to facilitate better lives of Australians with disability, their families and carers

We are writing with an update on the Democratising Disability Data coalition. A few things have happened since our last update and we are pleased to share with you the progress.

The Australian Digital Council (ADC) was established in September 2018 to facilitate and drive better cross-government collaboration on data and digital transformation, and to create better services and policy outcomes for all Australians. Then, in August 2019, the Council of Australian Governments (COAG) elevated the ADC to the COAG level as the Australian Data and Digital Council. The Council is chaired by the Hon Stuart Robert MP, Minister for the National Disability Insurance Scheme and Minister for Government Services, representing the Commonwealth and includes ministerial representation from all Australian states and territories.

In September, last year, the Australian Data and Digital Council announced the establishment of a National Disability Data Asset, which will help bring together data from multiple sources and inform service choices by people with disabilities and their carers. The Commonwealth will provide up to $15m to fund the pilot of the National Disability Data Asset, which will commence with data from the Commonwealth, New South Wales, Victoria, Queensland and South Australia.

This decision paves the way for a national view of the disability sector with significant potential, for example to inform the National Disability Strategy.

We are pleased to see this significant step towards improved access to disability data and statistics, and are grateful to the coalition of researchers, advocates, service providers and other stakeholders who have been working with us to help shape this progress.

You can read more about the National Disability Data Asset and the pilot phase in the message to the Democratising Disability Data Coalition from the Executive Director of NSW Department of Premier and Cabinet, Dr Frances Foster Thorpe, below.

Professor Bruce Bonyhady, AM
Executive Chair & Director
Melbourne Disability Institute

Professor Anne Kavanagh 
Chair in Disability and Health BMBS PhD FAFPHM FASSA
Disability and Health | Centre for Health Equity
Melbourne School Population and Global Health
Academic Director, Melbourne Disability Institute

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Democratising Disability Data Coalition
A message from Dr Frances Foster Thorpe, Executive Director, NSW Department of Premier and Cabinet

In 2019, many of you contributed to discussions about how to realise the value of bringing together Commonwealth and state/territory data in a de-identified national data asset.

I wanted to thank you all for this early contribution, which has shaped how the project has evolved since. I’ve attached a short outline.

I’m pleased to confirm that the Australian Data and Digital Council and the Disability Reform Council endorsed establishing a National Disability Data Asset, and approved commencing a pilot phase. The Commonwealth has provided $15 million in funding to support the pilot, and NSW, Victoria, Queensland, South Australia and the Commonwealth (including the NDIA) have committed to provide data.

The pilot will focus on linking data and analysing the service use and outcomes for several cohorts of people with disability: children up to the point of enrolling in school, school leavers seeking further education/training and employment, those with mental health/psycho-social disabilities, and those people interacting with the justice systems (whether as victims of crime or as offenders). It will also explore options for large-scale service mapping. AIWH is the linkage authority and a key partner in the work.

During the pilot phase, a National Project Team (hosted by NSW) will also coordinate the development of a proposal for an enduring national asset, to be considered by ministers in mid-2021.

This will include a research framework to enable access to the asset by researchers, and to enable researchers to contribute to exploring areas of interest for people with disability, representatives, advocates and service providers, and for policy makers.

I hope that the National Disability Data Asset will continue to benefit from input from networks such as this one as we develop the initiative over the coming 18 months.

Many thanks,

Frances Foster-Thorpe
Executive Director
NSW Department of Premier & Cabinet