Audit of Disability Research in Australia
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
Professor Gwynnyth Llewellyn
Research to Action
NDS/ CADR Conference
May 2014
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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
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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
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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
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Conceptual framework
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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
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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
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
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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 peoples
Policy analysis studies
Studies utilising administrative datasets
Studies utilising population surveys
Reports from AIHW, ABS and Productivity Commission
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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
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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 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
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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 personcentred 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
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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.
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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
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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?
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
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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 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
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Centre for Disability Research and Policy
www.sydney.edu.au/health_sciences/cdrp/
Email: disabilitypolicy.centre@sydney.edu.au
gwynnyth.llewellyn@sydney.edu.au