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

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

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

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

Conceptual framework 5

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

Scoping – scientific and grey literature  Detailed inclusion and exclusion criteria  results of investigation with aim, method, findings and conclusions/ recommendations  Time period 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

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

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

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

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

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

 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

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

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

16

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

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

Centre for Disability Research and Policy