Centre for Disability Research and Policy

Disability research should be lived experience-led or, in the very least, designed in partnership with people with disability and their supporters. Central to our centre’s strategic direction are our aims to:

• build capacity and opportunities for people with disability to lead research and
• make knowledge from lived experience an essential part of the development of policy, service design and workforce capacities

We are working towards these ends through a number of different strategies including appointing people with lived experience as stream leaders, employing people with lived experience in our research programs, advocating for academic careers which value lived experience and partnering with people with lived experience to deliver our teaching programs.

Leads:

• Dr Damian Mellifont
• Associate Professor Justin Scanlan

Teaching lead:

• Dr Kim Bulkeley

Receiving bipartisan support from both major national parties, the National Disability Insurance Scheme (NDIS) promises to provide Australian people with disability services or equipment they need to for a full and productive participation in society.

How research can help the effective implementation of the NDIS

The NDIS is still being developed and some crucial questions have yet to be answered. The centre continues to play a constructive role in developing and implementing the NDIS through focusing on:

• complexities around individual needs and system interactions
• interfaces on other support systems (eg health, housing, compensation, income security and workforce development)
• evaluating systems and strategies to address systems developing around the NDIS
• design issues as the NDIS takes shape
• data development including links to other disability data sets
• financing arrangements
• impacts of the NDIS on specific populations including Aboriginal and Torres Strait Islander Australians, and people in rural and remote areas, with a psycho-social disability or of diverse cultural and linguistic backgrounds.

Recent highlights

• External validation of the NDIS Independent Assessments evaluation, commissioned by the NDIA in partnership with the Centre for Disability Studies.
• Evaluating the Integrated Service Response in NSW to solve systematic complexities around disability support needs, through our partnership with Deloitte.
• Tracking the transition of clients from Commonwealth-funded mental health programs into the NDIS, as commissioned by the National Mental Health Commission.
• The Mind the Gap report (pdf, 521KB) into psycho-social disability and the NDIS, which was passed as a motion in the Federal Senate.
• Submissions to inquiries including those on Independent Assessments (pdf, 113KB) and the National Disability Insurance Scheme (NDIS) Costs Productivity Commission inquiry in response to the Productivity Commission NDIS Costs Issues Paper.

Lead

• Associate Professor Jennifer Smith-Merry

For more information on our work on the NDIS or to collaborate please email jennifer.smith-merry@sydney.edu.au or call 9351 9060.

People with disability are often excluded from the development of disability services, research and policy.

The Disability - Inclusive Community Development work stream conducts community-based research in partnership with people with disability and Disabled People’s Organisations (DPOs).

Much of our work involves the examination of cross-sector service coordination and collaborative practice. Together with key community stakeholders from disability, community health and mainstream services we develop, trial and improve the design of services and support so that they are inclusive for all people.

Major activities

• Using participatory methodologies to include people with disability in the design of community programs and services.
• Developing person-centred emergency preparedness resources that can be integrated into disability, community health and emergency services programs at the community level.
• Developing and disseminating evidence-based resources to improve the capacity of mainstream service providers to include people with disability and respond more effectively to their support needs.
• Developing the research capacity of DPOs to engage in data-informed policy advocacy.

Lead

• Associate Professor Michelle Villeneuve

Services for people with disability operate across Australia and around the world, but the intended outcomes for people with disabilities are not always achieved.

The Disability Services work stream conducts research to understand outcomes resulting from disability services provision. We collaborate with people with disability, their families, disability service providers and mainstream service providers to develop, trial and analyse support intended to make a positive difference in the daily lives of individuals with disabilities. Much of our work involves people with intellectual and developmental disabilities.

We work with service providers to strengthen the skills and knowledge of their staff to improve outcomes for people with disability using these services. In addition, we collaborate with mainstream community groups to build their capacity to support members with disability.

Recent highlights

• A new book, Choice, preference, and disability, has been published in April 2020. Professor Emeritus Roger Stancliffe is lead editor of the book, lead author of 2 chapters, and 4 other chapters are co-written by CDRP staff and affiliates.

Major activities

• Employment, retirement and socially-inclusive participation.
• Developing and disseminating evidence-based resources to improve the participation, wellbeing and health of people with disabilities.
• Helping people with intellectual disabilities understand and plan for the end of life.
• Identifying factors related to positive outcomes for people with disabilities to guide policy and practice.

Many current practices of disability research and policy continue to disenfranchise Indigenous peoples with disabilities. The Indigeneity and Disability stream uses a multidisciplinary approach to reconstruct new research methods with Indigenous peoples with disabilities.

We are focused on decolonising the disability research paradigm to advance disability policy and advocacy. We do so by systematically challenging the existing Western ways of knowing and adopting new research methodologies with Indigenous peoples with disabilities and their communities.

Through engaging in new research methods, we aim to ensure research can be translated into constructive policy outcomes that empower Indigenous peoples with disabilities.

Some examples of our work include the special edition of Disability and the Global South and Out of Home Care.

We build partnerships with scholars in critical disability studies, decolonisation, and Southern theorists and other work teams. Our members work with Indigenous communities worldwide to contribute to the global movement in decolonising the disability research paradigm. 

Lead

• Associate Professor John Gilroy

Disability is a barrier to living a personally meaningful and valued life of choice. It is something faced by many people living with a mental illness. These barriers to participation and inclusion originate from both mental illnesses and society.

The Mental Health and Disability stream aims to better understand barriers and enablers to participation and inclusion for people living with mental illness or psychosocial disability.

We critically examine and influence policies and initiatives to enhance participation and inclusion. Our work also amplifies the voice of service users and providers in the policy and research discourse and implementation.

Our stream builds international partnerships with service users, service providers, researchers, government and community organisations. 

Lead

• Associate Professor Nicola Hancock

Inclusion and participation of people with a disability is underpinned by an informed, vibrant, diverse and quality workforce. The current shifts in legislation and policy, in Australia and beyond, require us to rethink the workforce approaches that have been in place to implement the full potential of policy innovation. The disability sector must expand the thinking around workforce responses and embrace a broader scope of potential areas of influence.

This stream of research will consider a wide range of workforce initiatives to explore knowledge and skill development, models of service delivery that expand access to supports as well as options for building community capacity in providing positive engagement with people with a disability in everyday encounters. Areas of inquiry include:

• The workforce that supports people with a disability includes specialist disability services but is much broader as community participation increases engagement with many workers in all walks of life.
• Equity groups often encounter additional barriers to service access due to inadequate workforce or lack of specific workforce preparation such as rural and remote service delivery and services for Aboriginal and Torres Strait Islander people.
• The diversity of the workforce, and more specifically the disability workforce is another consideration in providing quality support and positive experiences for both service recipients and workers with a disability. The opportunity to shape community attitudes by demonstrating the benefits of a diverse workforce is an essential component in building the disability workforce research evidence base.

Preparation of students and young people to develop positive experiences and approaches to engaging with people with a disability is fundamental to future workforce development and throws up many unanswered questions. 

Research focus areas

• Rural and remote disability services
• Telepractice
• Delegated practice research

Lead

• Dr Kim Bulkeley

More information on the Disability Workforce stream.

While local government can claim significant progress in disability action planning in recent years, there still remains significant scope for practical improvement by way of research and development.

The introduction of the NSW Disability Inclusion Act 2014 (DIA) has provided the necessary revised legislative tool to undertake a comprehensive disability inclusion action planning process.

Under the DIA, councils were required to develop a stand-alone Disability Inclusion Action Plan by 1 July 2017.

This stream considers the ongoing delivery of local government disability social policy and its effectiveness towards bringing about a fully inclusive society.

Major activities

• To measure DIA compliance since conception within the context of Local Government NSW’s integrated planning and reporting framework and to directly assist in the development of NSW local council’s individual disability action plans.
• Address action plan core specifics, focusing on 4 key areas of the NSW Disability Inclusion Plan:
  • Developing positive community attitudes and behaviours
  • Creating liveable communities
  • Supporting access to meaningful employment
  • Improving access to services through better systems and processes
• Provide council staff and councilors guidance in relation to correct communication skills and appropriate etiquette towards people with disabilities.
• Identify and remove ableist policy and language within LGNSW and local councils.
• Promote the benefits of architectural universal design principle to ensure its ongoing application in council, government and private sector development applications.
• Understanding public access rights of assistance animals, NSW permit legislation, animal types and etiquette.

Lead

• Dr Scott Denton

Collaboration with this research is sought from government agencies, individual researchers, disability groups and people with disabilities. For further information, please email scott.denton@sydney.edu.au

We actively contribute our knowledge and experience to better the lives of people living with a disability through participating in research and as expert advisors to the Royal Commission

Download the CRE-DH Emergency Planning and Response for People with Disability in Australia (pdf, 5.5mb)

We regularly provide commissioned research outputs for both large and small-scale projects, examples include:

• Leadership of the Research Agenda setting process for the National Disability Research Partnership (NDRP). Check this page for outputs from this project.
• A research program that has developed vocational education and employment policies strategies for people with disabilities for the NSW Department of Education
• an Audit of Disability Research in Australia for the Centre for Applied Disability Research
• Research to Action and Evidence Check guides for National Disability Services and the Sax Institute
• a project tracking the NDIS implementation in existing mental health programs, funded by the National Mental Health Commission.
• A partnership with National Disability Services to run their Annual Market Survey
  

We conduct both small and large-scale evaluations for government and non-government organisations.

Our evaluation teams hold expertise in a wide range of evaluation methodologies and understand policy and practices surrounding disability and mental health service provision. 

We are strongly committed to working collaboratively both across our own institution and through research partnerships with other universities and organisations.

Our current partners include:

• Centre for Disability Studies
• Centre for Mental Health Research
• Centre for Research Excellence in Disability and Health
• Collaborative Research Network (CRN) on Mental Health
• Melbourne Disability Institute
• Menzies Centre for Health Policy
• National Disability Research Partnership

• Professor Jennifer Smith-Merry
• Associate Professor Justin Scanlan
• Associate Professor Michelle Villeneuve
• Associate Professor Roxanna Pebdani
• Associate Professor  Shane Clifton
• Dr Damian Mellifont

• Professor Anne Cusick
• Professor Emerita Gwynnyth Llewellyn
• Professor Emeritus Roger Stancliffe
• Professor Gerard Goggin
• Professor Glenda Jessup
• Professor Jennifer Smith-Merry (Director)
• Professor John Gilroy
• Professor Richard Madden
• Professor Shane Clifton
• Professor Gerard Goggin
• Associate Professor Justin Scanlan
• Associate Professor Margaret McGrath
• Associate Professor Michelle Villeneuve (Deputy Director)
• Associate Professor Nicola Hancock
• Associate Professor Roxanna Pebdani
• Associate Professor Shane Clifton (Deputy Director)
• Dr Andy Smidt
• Dr Anne Honey
• Dr Annmaree Watharow
• Dr Damian Mellifont
• Dr Genevieve Johnsson
• Dr Isabelle Boisvert
• Dr Jade Chang
• Dr Kim Bulkeley
• Dr Margaret Spencer
• Dr Rebecca Barton
• Dr Rebecca Sutherland
• Dr Sanet Du Toit
• Dr Scott Denton
• Dr Sophie Lewis
• Dr Susan Collings
• Alison Drinkwater
• Erin Fearn Smith
• Ms Imelda Noti
• Ivy Yen
• Kirsty McKenzie