1. FACULTY OF HEALTH SCIENCES CENTRE FOR DISABILITY RESEARCH AND POLICY Audit of Disability Research in Australia Professor Gwynnyth Llewellyn Research to Action NDS/ CADR Conference May 2014 1

2. Overview  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 2 Disability Research in Australia

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 3

4. Conceptual framework  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 4 Informed by UN Convention and national policy documents

5. Conceptual framework 5

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 6

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 7

8. Descriptive mapping and analysis  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 8 Four major foci

9. Descriptive mapping and analysis  The representation of key policy concepts in research  Using keywording analysis 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 9

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 10

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 11

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 12

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. 13

14. Finding 7  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 14 Under-represented areas in research evidence base

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 15

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17. Where to from here?  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 17 Recommendations – in the short term

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 18

19. Centre for Disability Research and Policy www.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.au gwynnyth.llewellyn@sydney.edu.au www.sydney.edu.au/health_sciences/cdrp/disabilitypolicy.centre@sydney.edu.au