Audit of Disability Research in Australia

1. Audit of Disability Research in Australia Professor Gwynnyth Llewellyn Research to Action NDS/ CADR Conference May 2014

2. Overview Disability Research in Australia • To produce a comprehensive picture of disability research in Australia over the last decade with a focus on social research • To determine the gaps in disability research evidence and ascertain research challenges • To consider an evidence evaluation framework applicable to disability research • Commissioned by Disability Policy and Research Working Group (now Research and Data Working Group) • Research Team – led by Centre for Disability Research and Policy with team members from People with Disability Australia (PWDA), National Disability Services (NDS) and University of Melbourne. • Advisory Group – cross sector representation – NGOs, DPOs and DPRWG

3. Context for Audit • Informed by national strategic, policy and directions documents • NDA (2009), NDS (2011), Productivity Commission Inquiry (2011) and National Disability Research and Development Agenda (NDRDA, 2012) • NDRDA directions for research about disability in Australia • Disability demographic profile and trend information • Disability related social and economic inclusion research • Research to contribute to evidence base to improve service delivery and support options • Research on sector development and sustainability and organisational capability • Research about diverse and/or disadvantaged groups

4. Conceptual framework Informed by UN Convention and national policy documents • 8 domains of everyday life with specified dimensions • Community and Civic Participation • Economic Participation and Security • Education • Health • Housing and the Built Environment • Safety and Security • Social Relationships • Transport and Communication

5. Conceptual framework

6. Method and processes • Scientific and grey literature • Scope • Persons with disabilities definition as per UN Convention • 2000 to 2013 in Australia • Research defined as reporting the aim of an investigation, method, findings, and conclusions and/ or recommendations • Scientific literature • 11 databases using search strategies developed from conceptual framework • Grey literature • 9 sources including government and statutory agency reports, research centre reports, reports from non-government organisations and doctoral theses

7. Scoping – scientific and grey literature • Detailed inclusion and exclusion criteria • results of investigation with aim, method, findings and conclusions/ recommendations • Time period 2000-2013 and with data that pertains to Australia • 11 data bases including Informit and 8 data sources of grey literature – the following three yielded results for inclusion • Federal, State and Territory Government Department Reports • Federal, State and Territory and Statutory Agency Reports • Research Centre Reports • NGO/ DPO Research Reports • Doctoral Theses

8. Descriptive mapping and analysis Four major foci • The distribution of research evidence • By domains of everyday life • By focus on people with disability, family/carers or services • By diverse and/ or disadvantaged groups of people with disability • By environmental and contextual factors • The distribution by type of investigation • 17 types including legal, policy analysis, historical analysis and media/ creative arts/ cultural analysis

9. Descriptive mapping and analysis • The representation of key policy concepts in research • Using keywordinganalysis to determine attention given to concepts such as choice, person-centred support • Detailed narrative analysis in selected topic areas • Aboriginal and Torres Strait Islander peoples • Policy analysis studies • Studies utilising administrative datasets • Studies utilising population surveys • Reports from AIHW, ABS and Productivity Commission

10. Summary of findings • Finding 1 • 2011 research documents met criteria • 1658 from scientific literature, 353 from grey literature • Fragmented and diverse across topics and study designs • NOT a critical mass of research on topics of priority in disability reform agenda • Finding 2 • Disability research in Australia is not easily accessible • Under-utilisation of open access journals and difficult to negotiate websites • Invisibility and lack of free access severely limits usefulness to information the disability reform agenda, people with disability, their family and carers

11. Summary of findings • Finding 3 • Greater concentration of research in areas of health, and to a lesser extent education, where there are established funding bases • Significantly less research on • inclusive and accessible communities, • rights protection, justice and legislation, • economic security, and personal and community support • Primarily one-off, stand alone studies in areas of researcher or organisational interest • Not a mature sustainable research base

12. Summary of findings • Finding 4 • The disability reform agenda leans heavily on human rights and social equity principles with a values base about choice and control, empowerment, and person-centred support • These concepts are relatively absent from the research evidence base • Finding 5 • Greatest proportion of research DOES NOT address the four diverse/ disadvantaged groups that is • Aboriginal and Torres Strait Islander communities • People from culturally and linguistically diverse backgrounds • Women with disability • People with disability living in regional, rural and remote areas

13. Finding 6 • The higher proportion of study designs essentially describe ‘the problem’. • These designs cannot produce evidence based solutions (although they may suggest propose solutions to be tested in the future) • Much less research testing interventions or solutions or evaluating policy initiatives • Encouraging signs of uptake of study design using secondary analysis of population data and administrative datasets • These studies examine larger samples which are more likely to be representative and permit comparison of the circumstances of people with disability with those of their non-disabled peers • Critical to understanding whether the policy initiatives of the disability reform agenda are working, and in the desired direction, and for whom.

14. Finding 7 Under-represented areas in research evidence base • Safety and security, transport and communication, housing and the built environment, social relationships and community and civic participation • Inclusion and participation of children and young people with disability in everyday life • Experiences of people with disability as • Specialist service users in relation to preference, choice, control, goals and , desired outcomes– in health, education, employment, housing, sexuality, personal relationships, marriage and family, transport, communication technologies • Users of mainstream services in relation to preference, choice, control, goals and desired outcomes – in health, education, community and civic participation, transport and communication, safety and security and housing and the built environment • Effective models of accessible and adaptable mainstream services which deliver useful outcomes for people with disability

15. Under-represented areas continued • Longitudinal studies that follow people with disability over time to better understand the potential drivers (social, economic, cultural, impairment-related) of inequalities • Issues specific to the Aboriginal and Torres Strait Islander people with a disability, women with disability, people with disability from culturally and linguistically diverse backgrounds and people with disability living in regional, rural and remote areas • Co-production of research with people with disability – the involvement of people with disability in the design, implementation and dissemination of research

17. Where to from here? Recommendations – in the short term • Commissioning secondary research – systematic reviews, secondary analysis of population and administrative data • Commissioning a formal research priority setting exercise • Dedicated investment to stimulate disability research which explores the experience of policy • Including funds within disability research to ensure wider dissemination • Investment in maintenance and biennial update of the Audit as an ongoing resource to • Identify research gaps, • Monitor disability research over time • Assist in developing research collaborations to build capacity, coherence and critical mass in disability research

18. Recommendations - medium term • Dedicated funding for co-production of research with people with disability and DPOs • Collection of more comprehensive data and stimulating research on diverse and/ or disadvantaged groups and children and young people • Increased efforts and investment to develop a ‘disability identifier” • Routine reporting on disability statistics • Programmatic funding to a network of centres with specific expertise and focus to build disability research capacity (training and research production) in agreed strategic and priority areas

19. Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.augwynnyth.llewellyn@sydney.edu.au