The NDRP will aim to facilitate a collaborative, translational research program through partnerships between academics, people with disability, their families and carers, peak advocacy and consumer groups, governments and service providers to conduct cutting-edge policy-relevant research that enables people with disability to participate fully in society.
The Partnership would like to attract top researchers who are committed to advancing the rights of people with disability, and work in partnership with the disability community, government, advocacy bodies, the disability service sector, philanthropy and industry.
The seed funding is provided to build the partnership with the goal of establishing a longer term partnership model that will enable Australia to build capacity and conduct high quality research that helps provide solutions to the many policy and practice challenges in disability policy, service delivery and mainstream services which people with disability need to access.
Australia has seen unprecedented change in disability policy over the last decade with the introduction of the National Disability Insurance Scheme and the National Disability Strategy, with a new Strategy due to be released later this year. However, research funding and capacity has not matched the investment in policy. The Audit on Disability Research in Australia revealed significant gaps in research and concluded that the research was often small scale, fragmented, poorly integrated into policy and practice and not fit for purpose. The Audit showed there is a need to rapidly scale up research capacity.
COVID-19 and the 2019/2020 bushfires and floods have thrown up new issues for people with disability, their families and carers which need urgent policy attention. For example, the crises have further challenged the interfaces between disability, health and other sectors such as education and justice. The economic downturn we now face also risks further disadvantaging people with disabilities and their families. It is even more important now to generate evidence to inform current policy responses and preparedness for the future health and economic shocks we will increasingly face.
This is also a time of enormous opportunity as Australia now has some of the best data in the world on which to build disability policy. We have extensive data collected from participants in the National Disability Insurance Scheme and Australia is also investing in the development of an enduring longitudinal National Disability Data Asset, incorporating NDIS data and datasets from multiple levels of government. This is an exciting collaboration which will allow governments to better understand how people with disability are supported through services, payments and programs across multiple service systems.
The Commonwealth Department of Social Services recognises the enormous opportunities presented by research funding and has invested in the establishment of NDRP, to be led by the Melbourne Disability Institute together with a working party, for a two-year period. Longer term investment in disability research will build knowledge, boost service innovation and solve pressing policy problems.
TWO-YEAR NDRP PLAN
Over the next two years, the NDRP will build a case for sustained investment in disability research and identify potential long-term funding streams. This will involve the activities outlined below. While the NDRP working party will lead consultations on the governance model, we plan to invite academics in partnership with the disability community to tender for other activities.
Produce a research agenda building on existing foundations that will see research significantly enhance the lives of people with disability, their families and carers through policy and practice.
Map relevant research capability in Australia and propose strategies and activities for building research capability and partnerships.
Produce a practical guide to research approaches including principles for disability-inclusive research.
Demonstrate through a select number of projects the capacity of the NDRP to work together to deliver solutions on priority issues as identified in the research agenda and inform long-term governance arrangements.
Develop and seek ratification of a future governance model for the NDRP designed to engage a range of stakeholders across the disability community, advocacy bodies, governments, philanthropy, service providers and industry which will attract future on-going, significant funding for disability research.
WHAT'S HAPPENING NOW?
So far we have appointed three new people with disability to the NDRP working party and have appointed the University of Sydney to lead a consortium to deliver the research agenda.
Soon we will:
Begin consulting on the governance structure for a fully-funded NDRP in two years time, taking into account the challenges of face-to-face engagement during COVID-19
Begin a communication strategy to engage with the disability community including people with disability, their families and carers, research organisations, peak advocacy and consumer group, service providers and governments.
NDRP WORKING PARTY
The working party is made up of researchers from some of Australia’s leading universities and people with disability. The working party will exist for two years until mid-2022 and will help facilitate the establishment of NDRP.
Professor Anne Kavanagh
Chair, Disability and Health
Head, Disability and Health Unit, Centre for Health Equity Melbourne School of Population Health
Academic Director, Melbourne Disability Institute, University of Melbourne
Professor Anne Kavanagh is Chair of Disability and Health at the University of Melbourne. She is Academic Director of the Melbourne Disability Institute and Principal Investigator on the NHMRC Centre of Research Excellence in Disability and Health. Anne is a public health researcher who researches the social determinants of health inequalities. She has a specific interest in the social determinants of health and wellbeing of people with disabilities. Anne’s lived experience of disability informs her research.
Professor Bruce Bonyhady AM
Executive Chair and Director
Melbourne Disability Institute, University of Melbourne
Professor Bonyhady is Executive Chair and Director of the Melbourne Disability Institute and Co-Director of the National Disability Research Partnership. He is a disability reformer, economist, one of the key architects of the National Disability Insurance Scheme (NDIS) and was the inaugural Chair of the National Disability Insurance Agency (NDIA) from 2013 to 2016. Professor Bonyhady began his career in the Australian Treasury and also worked in economic consulting, funds management and insurance in Australia and the UK, before becoming a non-executive director. His non-executive roles included President of Philanthropy Australia (2006-13). Professor Bonyhady is the father of three adult sons, two of whom have disabilities and in the 2010 Queen's Birthday Honours, he was appointed as a Member of the Order of Australia for services to people with disabilities, their families and carers, and to the community as a contributor to a range of charitable organisations
Ms Christina Ryan
CEO and Founder of the Disability Leadership Institute
Christina has been an active leader in the Australian disability community for over 20 years, working at an international, national and local level to change the diversity agenda, while mentoring and supporting numerous people with disabilities to their own leadership success. She pioneered the use of mainstream forums by women with disabilities at the United Nations, and now mentors and teaches effective use of the UN for rights activists globally, while working as a leadership coach for people with disabilities. After 20 years in community sector management, Christina realised that the levels of violence and marginalisation experienced by people with disabilities were the direct outcome of inequality, and that to address this we need a growth in disability leadership right across the public domain.
She established the Disability Leadership Institute in 2016 as a professional hub for leaders with disabilities to build & support our disability leaders. It is the first organisation of its kind globally, and aims to grow the presence and recognition of disability leaders across all sections of our community. Christina is also a regular keynote speaker and commentator. In 2013 Christina was acknowledged as one of 100 women of the Canberra Centenary. She was a finalist in the 2014 ACT Telstra Businesswomen’s Awards, and was awarded the Lifetime Achievement in Inclusion at the 2015 ACT Chief Minister’s Inclusion Awards. Christina was a 2017 Westpac Social Change Fellow.
Ms Ellen Fraser-Barbour
Ellen is an early career researcher undertaking her PhD at Flinders University. She is a Disability Developmental Educator (allied health) and has lived experience of disability. She passionate about advocacy and leadership of people with disability within research and policy settings. Her focus is on recognising and preventing discrimination, violence, harm and neglect. Ellen is also currently working for South Australian Government as an Appointed Member of the Health Performance Council (a statutory body in SA) and is currently leading a project auditing how people with disability access healthcare in South Australia for the SA Minister for Health & Wellbeing. Ellen has worked in a range of different roles in the disability sector as a support coordinator, Developmental Educator, therapy assistant and family support worker.
Professor Elizabeth Kendall
Program Director, Disability and Rehabilitation Alliance Menzies Health Institute, Queensland
Director, Griffith Inclusive Futures
Professor Elizabeth Kendall completed her PhD in 1997 on the topic of adjustment following traumatic- injury, for which she won the Dean's Commendation for Outstanding PhD Thesis in 1998 (UQ). She has continued to build a research agenda in rehabilitation and service systems for people who are managing the consequences of serious injuries, disabilities or chronic conditions. She has designed and directed complex community-based evaluations and randomised controlled trials of major health reform projects over the last decade. Elizabeth runs a collaborative research program with several significant partners including Queensland Health, General Practice Queensland, and Motor Accident Insurance Commission. She manages an interdisciplinary research centre and has attracted over $50 million in research grants and consultancies, including 9 large Australian Research Council grants. She has over 200 publications in high-quality and impactful journals such as Social Science and Medicine, American Journal of Public Health, Rehabilitation Psychology, Disability and Rehabilitation and has produced over 65 industry reports. She was a member of the ARC College of Experts and chaired the Social, Behavioural and Economic Sciences panel. She has supervised 18 PhD students to the completion of high-quality research outputs.
Mr Gordon Duff
Gordon has more than 25 years’ experience in human services policy research, evaluation, organisational development and human rights advocacy in a career spanning New Zealand, Canada, the UK and Australia, and across academia, government, non-government and business sectors. In Australia, Gordon supported the development of the NDIS as a member of the Federal Ministerial Expert Advisory Group on Sector and Workforce Capacity. As General Manager for National Disability Services, the provider peak body, he had oversight of national functions for policy development, research and sector development, and led the establishment of the Centre for Applied Disability Research. Gordon’s 2019 Fulbright Scholarship on innovation enabled him to spend time with the US National Institute for Disability, Independent Living and Rehabilitation Research (NIDILRR), learning which is now informing the development of the NDRP. He holds Honours degrees in Economics and Business Administration from New Zealand universities and a Masters in Social Policy and Health Economics from the London School of Economics.
Professor Gwynnyth Llewellyn
Professor of Family and Disability Studies
Co-Director Centre for Research Excellence in Disability and Health
Head, WHO Collaborating Centre for Strengthening Rehabilitation in Health Systems
Stream Leader Disability and Inequity, Centre for Disability Research and Policy
University of Sydney
Professor Gwynnyth Llewellyn is Professor of Family and Disability Studies, Co-Director of the Centre of Research Excellence in Disability and Health, Head WHO Collaborating Centre for Strengthening Rehabilitation Capacity in Health Systems, and Stream Leader, Disability and Inequity, Centre for Disability Research and Policy, Faculty of Medicine and Health, University of Sydney. Her research aims to develop health and social policy and practice solutions to the inequities experienced by parents with disability and their children and families with children with disability. Gwynnyth brings lived experience of family life with disability to her research and policy work.
Professor Helen Dickinson
Professor of Public Service Research
Director of the Public Service Research Group
University of New South Wales, Canberra
Helen Dickinson is Professor of Public Service Research and Director of the Public Service Research Group at the School of Business, University of New South Wales, Canberra. She has worked with a range of different levels of government, community organisations and private organisations in Australia, UK, New Zealand and Europe on research and consultancy programmes. Her expertise is in public services, with particular interest in areas that require different parts of government and other partners to work together in achieving aims. The policy and practice of disability policy and services has long been a research interest for her, inspired by personal experience through family, friends and community. She has a particular interest in thinking about how we can get other forms of voices heard in policy and research to those that typically dominate conversations.
Professor Jackie Leach Scully
Professor of Bioethics
Director, Disability Innovation Institute
University of New South Wales
Jackie Leach Scully is Professor of Bioethics and Director of the Disability Innovation Institute at the University of New South Wales. Originally a molecular biologist, she spent many years at the University of Basel, Switzerland and at Newcastle University, UK, where she was Executive Director of the Policy, Ethics and Life Sciences (PEALS) Research Centre before she moved to Sydney in 2019.
Her work in bioethics focuses on the implications of biomedical and life science developments for people with disability. Her publications include Disability Bioethics: Moral Bodies, Moral Difference (2008) and the co-edited Feminist Bioethics: At the Center, On the Margins (2011). In 2016 she was elected a Fellow of the Academy of Social Sciences. She has been Deaf since childhood, is married to a musician, and has been active in disability rights for over 30 years.
Ms Keran Howe
Keran is a social worker who has worked as a leader in the fields of health and disability over many years. As both a practitioner and a person with a disability she has been involved in advising government on policy reform representing issues related to community health, women’s health, violence prevention and the rights of people with disabilities.
Her most recent roles have been as Manager of Social Work at Royal Women’s Hospital and Executive Director of Women with Disabilities Victoria. Keran continues to support the issues of concern to people with disability through consultancy and board membership.
Emeritus Prof Lesley Chenoweth AO
Hopkins Centre, Menzies Health Institute of Queensland
Lesley Chenoweth was the inaugural Professor of Social Work and former ProVice Chancellor of Logan Campus at Griffith University. She has more than 35 years’ experience as a social work and human service practitioner, academic and activist chiefly in the disability area. Her various roles involved building aspiration and widening participation in higher education in the Logan community, one of Australia’s most diverse but also disadvantaged areas. Addressing social and economic inequalities has strongly underpinned and continues to influence all her practice. In 2015 Lesley was made an Officer of the Order of Australia (AO) for her distinguished service to higher education, particularly in the area of social work as an academic and administrator, and as a leading supporter of people living with disabilities. She was one of the Australian Financial Review/ Westpac 100 Women of Influence in 2015 and winner of the Local /Regional Category. Lesley continues to undertake various roles as a board director and in research.
Dr. Scott Avery
Dr Scott Avery is a Senior Lecturer in Indigenous Disability at Western Sydney University and the research partner of First Peoples Disability Network (Australia). His is descendant from the Worimi people and is profoundly deaf. His research area on the intersection of Indigeneity and disability in rights and social policy. He has authored the research monograph Culture is Inclusion: A narrative of Aboriginal and Torres Strait Islander People with disability, and is the lead investigator in the ‘Living our ways’ research program that established a community-based disability research agenda from Australia’s Indigenous people.
Dr Avery has extensive experience in conducting community-based research and policy in Indigenous and disability organisation, and his PhD research on social inequality and cultural participation for Indigenous people was conducted whilst embedded within and Indigenous Disabled Peoples Organisation. His community-based and intersectional approach has led to an expansive network in research and policy traversing the Indigenous and disability sectors. This includes being appointed as an expert advisor to numerous Government bodies including the Disability Royal Commission, Australian Bureau of Statistics, National Disability Data Asset, and the Research Advisory Committee of the Lowitja Institute of Aboriginal and Torres Strait Islander Health Research.
FREQUENTLY ASKED QUESTIONS
How can I get involved?
Soon we will hold consultation sessions to seek your ideas and feedback. Join the mailing list to be informed when these are happening. If you have a particular interest in an aspect of the work of NDRP, we would love to hear from you.
How will the stakeholder engagement happen given the disruption caused by COVID-19?
Our work with stakeholders is central to the project. Despite the challenges presented by the COVID-19 pandemic, we are committed to consulting widely and working with partners. We had initially planned to travel across Australia to meet people, but now it might happen through a combination of online and face to face when this becomes possible under government health restrictions. Sign up to the mailing list and you will be the first to hear when we start having conversations.
How does the NDRP align and interact with the NDIA Research and Evaluation program?
Both the NDRP and the NDIA’s Research and Evaluation Program are part of the commitment by all governments to invest more in disability research. To make sure the two programs are aligned, we meet regularly with the NDIA. You may have received the survey recently distributed by the NDIA seeking information about the research activities of your organisation or department. The NDIA reached out to many groups in shaping this survey, including us, and plan to make the results of the survey openly available to the NDRP.
How can I ensure that my research ideas are included in the Research Agenda?
An important aspect of the setting the Research Agenda will be to review current research and research capabilities. It is intended to be comprehensive. However, if you have particular interests, please let us know and we will ensure that your interests are sent to the project team when the Research Agenda project starts.
What will be the governance model in the longer term?
At this stage we do not know which governance model will be best for NDRP beyond the initial two-year period for which we have funding. We have undertaken some preliminary scoping and there are a wide range of possible governance models. We plan to summarise the options and prepare a Governance Issues Paper and then consult widely. However, if you have particular suggestions which you would like to put forward before the Issues Paper is published, please get in touch with us.
If you would like to provide input into the research agenda or any of the core activities outlined here, please subscribe to our mailing list and we will let you know the plan and process for collaboration.