Consultation period

27 September 2024 - 11:00 am To 27 October 2024 - 11:59 pm

National Disability Data Asset – Terms of Reference for the Council

Context

The Australian, state and territory governments are working with people with disability, including disabled people’s organisations, representative organisations of children and people with intellectual disability and the wider disability community to establish the National Disability Data Asset (NDDA). The wider disability community includes families of people with disability, carers, organisations that represent people with disability and allies, as per article 4.3 of the United Nations Convention on the Rights of Persons with Disabilities and the General Comment No.7 (2018).

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 with disability, their families, and carers.

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 programs and services
  • provide people with disability better information to access programs and services
  • provide information that will help improve opportunity and inclusion for people with disability
  • provide a more complete picture of the supports, programs and services used by people with disability in Australia, including intersectional groups
  • assist users of the NDDA to improve opportunities and outcomes for people with disability
  • support reporting on and evaluation of the effectiveness of Australia’s Disability Strategy 2020‑2031.

Council roles and responsibilities

The NDDA Council will provide recommendations on the strategic direction of the NDDA 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 include:
    • providing oversight of compliance with NDDA safeguards, safe use of data and requirements for transparency, including oversight of panels
    • providing oversight of the delivery of initial priority uses and analysis, including sub-priorities to the DRMC
    • approving the suite of projects seeking to use NDDA central analytics funding to ensure they align with the policy priorities recommended by the NDDA Council and agreed by DRMC
    • setting, monitoring, reporting on and reviewing benchmarks on the proportion of data projects proposed by people with disability and the wider disability community
    • recommending to the DRMC how insights could be used to improve outcomes of people with disability including for intersectional groups
    • recommending emerging national priorities for analysis to the DRMC, including responses to emergencies
    • identifying development priorities for the asset over time and recommending future development opportunities for the NDDA to the DRMC, including data improvement initiatives that are aligned with Australia’s Disability Strategy outcomes and measures
    • overseeing strategic capability and capacity building initiatives on data use in the community through a phased approach
    • overseeing strategic trust building initiatives with people with disability and the wider disability community on data linkages 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 people with disability and the wider disability community
    • endorsing the NDDA Charter and future changes to the NDDA Charter once community and government consultation is complete
    • producing an annual report to provide transparency on the uses, achievements of the asset, incidents and how these were dealt with.

Deliverables and intellectual property in material

The NDDA Council will be accountable for delivering an annual NDDA report to DRMC 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.  Accessible versions will also be made publicly available.

In line with the Confidentiality Undertaking and Declarations of Interests Deed signed by members, the intellectual property rights to any material created or produced by the Council will belong to the Commonwealth of Australia immediately on its creation.

Status of Terms of Reference and amendments

The Terms of Reference govern the way in which the NDDA Council will operate, and will be approved by the DRMC in mid-2024. Once approved, the Terms of Reference are binding on Council members.

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 to these Terms of Reference.

Decision making

The NDDA Council will provide recommendations to DRMC for how the NDDA is used and developed and will provide strategic oversight of NDDA operations.

This oversight includes the implementation of safeguards and transparency mechanisms, such as the operation of disability-informed ethical oversight and panels to improve NDDA data and use in specific areas, and strategic recommendations to disability ministers on the future of the NDDA.

A valid meeting of the Council will require a quorum of Council members.  A quorum will be achieved with a minimum of 8 members in attendance which must include:

  • at least one co-chair; and
  • at least four Council members (not acting as proxies)

Recommendations being put forward to disability ministers will require unanimous agreement among Council members present at the meeting. If a unanimous decision is not reached, the co-chairs can determine whether to put forward the recommendation, which must then include the reasoning and explanation of alternate views.

Proxies

If a Council member is unable to attend a meeting they can nominate a proxy in writing to attend and vote on their behalf at a specific meeting. If the proposed proxy is external to the Council, then the relevant Council member and the proxy must request written approval of the arrangement from the co-chairs 7 days before the Council meeting. Any approved proxy who is external to the Council must complete a deed poll of confidentiality and conflict of interest and intellectual property prior to attending the Council meeting.

If the proposed proxy is another member of the Council, written pre-approval of the proxy arrangement by the co-chairs is required one day before the relevant Council meeting, but further confidentiality paperwork is not required.

Proxies are not needed for government positions in the case where there is an acting arrangement in place, as it is the holder of the position that sits on the Council rather than the individual themselves. However, the individual undertaking the acting arrangement and acting as proxy must complete a deed poll of confidentiality and conflict of interest and intellectual property prior to attending the Council meeting.

Council Chairs

The NDDA Council will have two co-chairs chosen from the 12 Council members. One disability community member will be a co-chair and 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.

Membership

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 members include:

  • three Australian Government representatives
  • three state and territory representatives.

The 6 disability community members include:

  • three members 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.

Government representative membership will be tied to the holder of the government position rather than the individual.

The Australian Government Disability Minister has the power to appoint Council members, and will do so in consultation with the DRMC.

Non-government Council members may be appointed for a term up to 3 years, subject to review based on adherence to a Code of Conduct, Conflict of Interest Policy and other organisational policies.

Government member’s terms will be 18 months as opposed to 3 years, this will enable rotation amongst jurisdictional members. Government and non-government Council members may be appointed to serve a second term at the conclusion of their first term. Second term appointments may be for a period of up to 3 years for non-government Council members, and up to 18 months for government Council members.

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.

All non-Council member attendees must sign a Deed of Confidentiality before attending Council meetings or being provided with Council materials.

Any jurisdiction without a representative can select a government Council member to represent them. To facilitate this process Council papers can be shared with non-Council member jurisdictions ahead of meetings in accordance with caveats included on papers.

Panels

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. The NDDA Council has the authority to appoint and terminate members of the time-limited specialist advisory panels. The Council will be responsible for reviewing all specialist advisory panels on an annual basis or at the end of the panel’s term, whichever is sooner. The Council will make recommendations on the future of the time-limited specialist advisory panels including appointment of additional panels to be established.

Termination from Council membership

The Australian Government Disability Minister may terminate Council members for reasons including the member is found to be neglecting or acting in a manner conflicting with their roles and responsibilities as covered in this Terms of Reference, acting in an inappropriate manner, or going against their obligations in the deed poll of confidentiality and conflict of interest and intellectual property. The Australian Government Disability Minister may also take advice from disability ministers and Council co-chairs in respect of a proposed termination.

If a proposed termination relates to a state and territory member the Australian Government disability minister will consult with the relevant state/territory disability minister prior to making a decision.

Resignation

Council members are asked to provide 2 months’ notice should they choose to resign from the Council before their term is over. This will allow sufficient time to seek a replacement Council member and subsequent agreement from disability ministers. Written resignations should be made to the Council co-chairs and copied to the Secretariat.

It should be noted that government positions are tied to the holder of the position rather than the individual. If the individual resigns or changes from their government position then the person filling or acting in their position will take their position on the Council. This will not require reappointment by the Australian Government Disability Minister or endorsement by disability ministers.

Meetings

The NDDA Council will meet up to 4 times per financial year. Meetings will be held virtually. 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. Initial Secretariat support for the Council will be provided by the Department of Social Services as the Australian Government lead of the project.

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 outcomes. The Secretariat will also be responsible for the record management of meeting agendas, discussion papers and outcomes. The co-chairs are responsible for approving meeting agendas and discussion papers to Council members (in-session and out-of-session). All Council members can initiate agenda items.

Any jurisdiction without representation can provide their nominated Council member with agenda items to initiate. Meeting papers will be provided at least 10 working days prior to meetings, and draft outcomes 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 ahead of the meeting if they are unable to attend. The co-Chairs 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 an optional item at Council meetings. 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). Remuneration rates for attendance to Council matters will be guided by the current version of the Remuneration Tribunal (Remuneration and Allowances for Holders of Part‑time Public Office) Determination (No. 2).

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.

Conflicts of interest

Council members must declare any actual or perceived conflicts of interest which could impact their ability to perform their duties. Council members will be asked to declare any conflicts of interest upon commencement of their term and should provide any updates to the Secretariat for the visibility of co-chairs as changes arise.

Confidentiality and privacy

As a part of Council duties Council members might have access to confidential and private information. This information can only be used for approved purposes. Council members will be asked to sign a deed of confidentiality upon their commencement.