NDDA Council Proposed Terms of Reference
Subject to disability ministers’ agreement, Australian, state and territory governments will work with the disability community to establish the National Disability Data Asset (NDDA). The NDDA is a key pillar of Australia’s Disability Strategy 2021-2031.
Once established the NDDA will connect de-identified data from different government agencies about people with disability. The NDDA aims to enable improved outcomes for people with disability by improving the scope and quality of insights available and ability to share those insights, including with people with disability. It will also inform decision making about the government programs and services to better support people living with disability, their carers and families.
Once developed, the NDDA will:
- connect data from different government and support agencies about people with disability to better understand their outcomes and experiences of services
- provide people with disability better information to access services
- provide information that will help improve opportunity and inclusion for people with disability
- provide a more complete picture of the supports and services used by people with disability in Australia
- assist users of the NDDA to improve opportunities and outcomes for people with disability
- identify development priorities for the asset over time
- support reporting on and evaluation of the effectiveness of Australia’s Disability Strategy 2020-2031.
Council roles and responsibilities
The NDDA Council is an advisory body to the Disability Reform Ministerial Council (DRMC) and is the co-governance forum involving community and government for the NDDA.
- The NDDA Council’s responsibilities are:
- providing oversight of compliance with NDDA safeguards, safe use of data and requirements for transparency
- providing oversight of the delivery of initial priority uses and analysis, including sub-priorities to the DRMC
- recommending to the DRMC how insights could be used to improve outcomes of people with disability
- recommending emerging national priorities for analysis to the DRMC, including responses to emergencies
- recommending the future development opportunities for the NDDA to the DRMC, including data improvement initiatives
- overseeing strategic capability and capacity building initiatives on data use in the community through a phased approach
- overseeing strategic trust building initiatives with the disability community on data linkage to sustain the social licence of the asset
- helping build social acceptance of the NDDA by reporting to the public on what the disability data asset is being used for and how it will assist the disability community
- producing an annual report to provide transparency on the uses, achievements of the asset, incidents and how these were dealt with.
The NDDA Council will provide recommendations for how the NDDA is used and developed to disability ministers and will provide strategic oversight of NDDA operations.
This oversight includes the implementation of safeguards and transparency mechanisms, such as operation of disability-informed ethical oversight and time limited specialist advisory panels to improve NDDA data and use in specific areas, and strategic recommendations to disability ministers on the future of the NDDA.
The Council’s decision making process will require a consensus of opinion by a quorum of Council members:
- a quorum will be achieved with a minimum of 8 Council members in attendance
- a quorum will be required for decision making at meetings unless a proxy vote has been pre-approved by one of the co-Chairs.
- recommendations being put forward to disability ministers will require a consensus among members. If a minority of members have a different view on a proposed recommendation, the co Chairs can determine whether to put forward the recommendation. If put forward, the recommendation will be supported by reasoning and explanation of alternate views.
The NDDA Council will have two co-Chairs chosen from the 12 Council members. One disability community member will be a co-Chair and one government member will be a co-Chair.
During the build stage of the NDDA, the government Chair will be the Australian Government, with rotation to occur beyond 2025.
The NDDA Council will comprise 12 members with half representing government, and half representing members of the disability community, preferably with lived experience. Three of the disability community representatives include experts selected for their disability and data specialist capabilities.
The government representatives (TBC) include:
- three Australian Government representatives
- three state and territory representatives.
The 6 disability community representatives (TBC) include:
- three representatives from the disability community
- three experts in the disability/data fields
- one of the three disability/data field expert representatives will be from the Australian Human Rights Commission (AHRC), due to its critical role around upholding the rights of people with disability.
Members will include people with a lived experience of disability and people from a diverse range of cultures, ethnicities, genders and geographical locations.
Council members are anticipated to be appointed for a term of 3 years, subject to review based on adherence to a Code of Conduct, Conflict of Interest Policy and other organisational polices. To ensure rotation amongst jurisdictional members, the government member’s terms will be 18 months. Council members may be approached to serve a second term at the conclusion of their first term.
The Council co-Chairs may invite other parties, subject matter experts or additional representatives to attend from time to time to provide information or advice on specific issues or agenda items.
Members may seek approval from Council co-Chairs to nominate observers to attend meetings as appropriate.
The NDDA Council may appoint up to 4 time-limited specialist advisory panels (within budgetary limits) to inform decision making as well as invite experts to attend Council meetings as required.
Any jurisdiction without a representative can select a government Council member to represent them.
The NDDA Council will meet 4 times per year. Urgent matters may be agreed out of session.
Operations and resources
Meetings will be convened by the Council Secretariat and will be held via video/teleconference.
The Secretariat will be provided by government.
After its initial year of operation the NDDA Council will provide advice on the support delivered by the Secretariat and can recommend changes to how the Secretariat and operational support functions should work in future years.
The Secretariat will be responsible for the preparation and circulation of meeting papers including agendas, discussion papers and minutes. Meeting papers will be provided at least 10 working days prior to meetings, and draft minutes will be distributed no later than 10 working days after meetings. In order to provide appropriate support to the Council, the Secretariat will include individuals with technical subject matter expertise on the asset.
Members will be invited to provide out of session feedback on agenda papers if they are unable to attend. The Chair will share out of session feedback with members at the meeting. The NDDA Council will have access to resources through the Secretariat to enable effective provision of advice to disability ministers, with a clear mandate to undertake community engagement regarding:
- uses of the asset
- development of the asset
- overall effectiveness of the asset
An update on Australian National Data Integration Infrastructure (ANDII) Board meetings will be included as a standing item at each Council meeting. The ANDII Board provides strategic oversight of the NDDA’s underlying infrastructure (known as the ANDII) and associated technical operations.
Non-government members will be remunerated for time preparing for and attending meetings, and for any other official duties performed as a member of the NDDA Council (e.g. attending community engagements that cannot be conducted by the operational/functional body).
The Australian Government in consultation with jurisdictions:
- will provide authority to remunerate non-government members’ organisations where they undertake approved activities on behalf of the NDDA
- will cover appropriate training costs for non-government members to enable them to perform their duties on the Council.
Reporting and issues management
The NDDA Council will report periodically to the DRMC through DRMC meetings, which may include co-Chair attendance when the NDDA is being discussed or via in or out of session papers as appropriate. The NDDA Council is accountable to the DRMC.
Review and duration
The NDDA Council will be accountable for:
- delivering an annual NDDA report that incorporates findings and recommendations from a performance audit of the NDDA. This annual report will also include a compliance audit, including on privacy and security.
- amendments to the Terms of Reference can be proposed at any time by the Council should experience show the need for a different approach. Final approval is required from the DRMC for any amendments.