Mapping disability Research in Australia
Where are we now and what research do we need in order to shape disability policy and practice in Australia, and to advance the rights of people with disability?
Below, Jen Smith-Merry provides a high level update on the research mapping phase. Easy read summary and full report will be made available soon.
Disability research comes in many forms – research papers published in academic journals, reports for lobbying or for community development purposes, and reports helping government to understand the impact of its policies.
Who we are and what we are doing
A large consortium of researchers from universities and non-government organisations has come together through a tender to the National Disability Research Partnership to assist with developing a set of priorities which can be used for making decisions about how we support disability research in Australia.
We are doing that through a three-phased approach:
Map existing Australian
Consult with people with disability, their families, allies and supporters, service providers and policy makers across Australia to ask them their views on disability research
Use a structured prioritisation
exercise to develop a list of
research priorities and themes
Phase One (research mapping) has now been completed and has provided us with an important insight into the areas which make up current disability research in Australia.
How we went about finding research papers and reports
A previous Audit of Disability Research was conducted in 2014 and updated in 2017, so our task in mapping existing research was to add to these earlier exercises by finding more recent disability research. The boundaries of what is classed as ‘disability’ research, or relevant to people with disability, can be very broad. So we cast our net widely. We included papers which included original research focusing on Australian people with disability and topics relevant to them. Papers were included where disability was the main focus, and also where disability was part of the research aims or conclusions.
We did not include papers that were basic science or clinical research whose primary focus was related to treatment or diagnosis. One of the limitations of our search was that we used search terms related to ‘disability’ and Australian states and territories, which meant that we may have missed relevant papers which did not identify themselves in this way. After completing our search we therefore asked for researchers to check our list of included papers and let us know what we might have missed.
What we found
We found a total of 1646 individual pieces of Australian disability research over the 2018-2020 period, comprising 1421 peer-reviewed journal articles or book chapters (research papers) and 225 research reports.
There was a steady increase in the number of papers year on year.
A majority of research focused on people with disability (67% of research papers and 74% of research reports), followed by those on family members and unpaid carers of people with disability (11.5% and 18.1%) and disability workforce and staffing (7.6% and 1.6% respectively).
Most papers spoke about disability without specifying a particular age grouping (40% of all papers and reports), with 27% focusing on adults and 21.5% focusing on children and young people with disability. Just 1.09% of papers and reports spoke about people with disability of older ages (65+).
The largest number of research papers and reports did not focus on a particular diagnosis or disability grouping, but spoke about people with disability generally.
The main specific disability diagnoses or groups discussed were:
Most research papers and reports focused on health and wellbeing, which included access to and experiences of healthcare, along with the mental and physical health of people with disability, education and accounts of lived experiences of disability.
The top 10 topic areas identified are listed below.
What is missing?
When looking across the available papers we were able to identify several preliminary research gaps.
Aboriginal and Torres Strait Islander people with disability and their communities. There is a need for further research on their experiences and needs with respect to major policy reforms such as the NDIS in order to review and, where necessary, reform programs to better meet their needs.
People with disability in rural, regional and remote communities. This gap must be addressed because of continued problems of policy implementation in these areas, and the lack of data and policy solutions in relation to these populations.
Culturally and linguistically diverse communities and people with disability. This gap is significant given the underrepresentation and under-acknowledgement of people from these communities in major disability policies.
Violence, abuse and discrimination. It was surprising considering the Disability Royal Commission work that there was not more of a focus on this area.
Accessible technology design and testing. Given the rapid changes in technology that occur, there is great scope to develop and explore the use of technical solutions for people with disability at all life stages.
Housing. Disability housing research needs to go beyond practical accessibility questions to equity and inclusion, and the funding models which will allow these values to shape policy decisions around housing and disability.
Ageing and disability. Given the potential policy, funding, support and technological cross overs between these two sectors there needs to be much more collaboration in research to share learning and innovation opportunities.
Human Rights and the UNCRPD. Australian policy and services need to be evaluated and positioned in relation to our international responsibilities under the CRPD.
Research that sits outside of traditional disability-related academic domains. Disability researchers need to build interdisciplinary teams and strong links with researchers across academia who can contribute to the creative solutions needed for disability inclusion.