Governance objectives

• General support for a flexible governance arrangement that can evolve over time.

• Any model will need an independent research advisory board/committee to make decisions about research priorities and partnerships for research, etc. Research streams could work well – can change or add streams as issues emerge. 

• If the NDRP is to build the capacity, scale and impact of disability research it will be important to more narrowly define its purpose, and design governance structures to reflect these.

• 'Action' and 'impact' should be in the governance objectives.

• Ensure that there is a strong regional, CALD and Aboriginal and Torres Strait Islander voice.

• Make sure to offer training and support in understanding what a conflict of interest is, what governance is - this builds capacity in the individual and the organisation.

• Important to uphold Article 12.

• Keep the governance matters, including the Constitution, as simple as possible. Avoid the trap of trying to involve important and influential players, mainly universities, in aspects of governance - let them be aware that their best involvement is as active operational partners.
   

How should people with disability be embedded in governance?

• On panels, the board, policy making, in all levels including employment.

• The Board should be merit based, and this will necessarily favour the membership of people with disability with the relevant governance and management skills. 

• Ideally there should be an independent advisory group that can have a broader representation of disability, such that the one or two board directors are informed by this group - this would give a much richer and diverse perspective of disability on the board.

• Consider a structure where peak organisations are involved, rather than one or two people expected to represent the diversity of disability.

• Develop a pathway for leadership for people with disability.

• Should be embedded across all layers of governance and include ‘independent’ people who are not aligned with, or paid employees of any organisation within the sector.
   

How should families, carers, and representative organisations be embedded in the governance of NDRP?

• Consider having a representative from Carers Australia and from National Disability Services be present at board meetings. Their perspective is vital.

• Through a structure where key family advocacy organisations are involved (like a steering group) to guide the board. 

• On panels, the board, policy making, in all levels including employment.
   

Governance model

• Is the NDRP primarily intended to be a funding body for new disability research that acts as a conduit for government research funds? If so, such a body would require robust and transparent governance structures for grant making alongside structures for prioritisation of aspects of the research agenda that should be funded. These are two distinct tasks requiring different structures.

• A structure for decision making about grants would need to be articulated with significant attention to independence, strong mechanisms to deal with conflicts of interest and academic rigor to ensure optimal outcomes. Any structure for decision making about grants must ensure high level peer review, transparency, and independence similar to the ARC College of Experts, with a focus on academic expertise to ensure research builds on existing knowledge, is significant, well designed and feasible.

• Alongside a structure for grant decision making there would need to be a representative and independent structure that sets the research agenda of the NDRP and prioritises aspects of it for funding. Such a structure would have a different function and thus need to be much broader than a grant decision making mechanism, and include perspectives of people with disabilities, families, academics and advocates as well as government.

• Any such structure that sets priorities for funding would have to pay particular attention to the inclusion of perspectives across the spectrum of people with disability, in terms of impairment types, severity, gender, location, and ethnicity to name but a few.

• Current funding streams such as NHMRC do not provide voting power to consumers who are on their review panels; they sit there and can be ignored, no scoring, no real input, with researchers often having no idea about what consumers, in particular in rural and remote communities experience and wish to do with their life. 

• A centralised model of delivery would reduce the opportunity to build the capability of researchers across Australia. The proposed governance model described in the paper including a Board comprising a mix of skill and stakeholder-based representatives would ensure accountability, influence how the partnerships develops and achieve outputs against funding.  

• We agree to the need for federal and jurisdictional government representation on the board along with people with lived experience and subject matter experts, to provide an equal balance of skill and knowledge. In addition it is proposed that:

  • A representative has experience in establishing a ‘start up’ research entity from outside the disability sector, to draw upon experiences from other established sectors 

  • given the need for the NDRP to generate and distributes funds, it is recommended that there is a ‘grants’ expert on the Board perhaps from the NHMRC? 

  • the NDRP formally reports to the Australian Disability Strategy Research Group to ensure that a broader stakeholder group is given an opportunity to oversee and influence progress.

• The working party model NDRP have been working with to date is representative, has the right mix of skills and solid connections to the research community in Australia and internationally and is supported by a good organisational structure and resource base. It is similar to other ARC centres of excellence and in this is the right model to move forward with. 

• However, it would be good to put in a review point for this model with a view to the future and potentially assess whether it is the best model once the ongoing hub is established and has been operating for a few years. Other more specific considerations are included below, specifically pertaining to representation of people with disability in any future governance arrangement.

  • The governance model needs to explicitly address power imbalances between government, research institutions and people with lived experience to ensure all people with disability have equal say in decision making. This should include ensuring the voice of people with cognitive disability. 

  • Governance groups should include representatives from diverse and underrepresented groups.

  • Consider softening the focus on the views of carers and emphasising the preference for the voice of people with disability. 

  • If using coproduction and codesign, clear definitions and processes need to be developed to support these approaches.