FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

Audit of Disability Research in Australia

Professor Gwynnyth Llewellyn

Research to ActionNDS/ CADR Conference May 2014

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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

Disability Research in Australia

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Context for Audit

Informed by national strategic, policy and directions documentsNDA (2009), NDS (2011), Productivity Commission Inquiry (2011) and National

Disability Research and Development Agenda (NDRDA, 2012)

NDRDA directions for research about disability in AustraliaDisability demographic profile and trend informationDisability related social and economic inclusion researchResearch to contribute to evidence base to improve service delivery and

support optionsResearch on sector development and sustainability and organisational

capability Research about diverse and/or disadvantaged groups

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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

Informed by UN Convention and national policy documents

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Conceptual framework

PLACE IMAGE HERE

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Method and processes

Scientific and grey literatureScope

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 literature11 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

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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

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Descriptive mapping and analysis

The distribution of research evidence By domains of everyday lifeBy focus on people with disability, family/carers or servicesBy diverse and/ or disadvantaged groups of people with disabilityBy environmental and contextual factors

The distribution by type of investigation 17 types including legal, policy analysis, historical analysis and media/

creative arts/ cultural analysis

Four major foci

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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 peoplesPolicy analysis studiesStudies utilising administrative datasetsStudies utilising population surveysReports from AIHW, ABS and Productivity Commission

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Summary of findings

Finding 12011 research documents met criteria

1658 from scientific literature, 353 from grey literatureFragmented and diverse across topics and study designsNOT a critical mass of research on topics of priority in disability reform agenda

Finding 2Disability research in Australia is not easily accessibleUnder-utilisation of open access journals and difficult to negotiate websitesInvisibility and lack of free access severely limits usefulness to information the

disability reform agenda, people with disability, their family and carers

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Summary of findings

Finding 3 Greater concentration of research in areas of health, and to a lesser extent

education, where there are established funding basesSignificantly 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

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Summary of findings

Finding 4The 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 isAboriginal 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

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Finding 6The 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

initiativesEncouraging signs of uptake of study design using secondary analysis of

population data and administrative datasetsThese 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.

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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

Under-represented areas in research evidence base

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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

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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

Recommendations – in the short term

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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 statisticsProgrammatic 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

Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/

Email: disabilitypolicy.centre@sydney.edu.augwynnyth.llewellyn@sydney.edu.au