Disability Citizenship and Social Participation Monitor

Lead: Prof Simon Darcy, UTS Business School

Duration: 2021 - 2022

Australia has undertaken arguably its greatest social policy change since Medicare with the introduction of the National Disability Insurance Scheme (NDIS) in 2016. Prior to the introduction of the NDIS, there has been well documented unmet need and geographic inconsistency in the provision of disability support and care (Price Waterhouse Coopers, 2011; Productivity Commission, 2011). Moreover, the historical treatment of people with disability led to the establishment of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability in 2019 (Disability Royal Commission, 2019). These areas of national social change also have an international dimension through Australia's signing of the United Nation’s Convention on the Rights of Persons with Disabilities (CRPD) that carries with it international obligations to report on and monitor changes in disability citizenship and social participation (United Nations, 2006). 

At best, information on people with disabilities in Australia has been sporadic, ad hoc and segregated from mainstream data collection across many areas of social participation (Australian Institute of Health and Welfare, 2020). A disabilities module has been regularly omitted from many forms of national data collection including the Census of Australia. In replacement of these areas of data collection, disability data collection has been segregated through the collection of the ABS 4430 Disability, Ageing and Carers Survey alongside more ad hoc approaches to data collection, which are many, varied and without consistency of methodology or measurement. In short, as the Australian Human Rights Commissioner notes in his 68 recommendations on Australia's performance monitoring of the CRPD disability social participation, there are many areas for improvement (Gauntlett & Australian Human Rights Commission, 2019). 

What impact will we create? 

With this policy background, baseline data on disability citizenship and social participation is essential. As identified, there are a series of significant data gaps particularly around disability citizenship and social participation. The UTS Disability Citizenship and Social Participation Monitor will provide an “accounting” of the perception of people with disabilities’ lived experience of how they have been able to participate in the community. 

Central to these measures is an understanding of nondisabled citizenship and social participation and the relative “citizenship and social participation gap” between people with disability and the nondisabled. We already know for example that only 48% of people with disability are in paid employment as opposed to 81% of the nondisabled. It is expected that this employment gap is reflected in all areas of social participation but with the exception of a few areas of data collection we simply do not have the data and if we do not have the data, we cannot measure and develop policy that addresses the disabling social practices that lead to these data gaps. This research will have social impact and benefit the following: 

• People with disability themselves, who know through their lived experience the disabling social barriers and hostile attitudes that they encounter every day, and who are better positioned to have their voices heard through this pilot and the more expansive program of work it will enable.  

• Policymakers who will benefit from the data and the debate that the monitor will generate, enabling both better evidence-based decision making and better inclusion of the voice of people with disability in the policy design process. 

• The results have the potential to impact strategy and operational practices for Business and Public Service sectors across social participation and inclusion practices. The results will inform and benefit the sectors at both a higher Peak Body level as well as individual organisation level. 

Australia has undertaken significant social policy changes since 2016 with the introduction of the NDIS and the current revision of the National Disability Strategy. Both these initiatives are central to the obligations Australia has in being a signatory of the CRPD. Yet despite this, the Australian Human Rights Commission and the Disability Discrimination Commissioner have identified 68 recommendations to improve the citizenship and social participation of people with disability in Australia. This research would form the basis of an annual publication examining the disability citizenship and social participation of NSW people with disability. The publication would be a yearly voice for Australians with disability to remind government that signing the CRPD requires action to improve the citizenship and social participation of the group. 

A flagship publication, the “UTS Disability Citizenship and Social Participation Monitor” will be widely promoted, target an audience of senior government decision makers, and be supported by a range of public presentations and digestible snapshot documents that are designed to surface key actionable findings and raise the profile of the UTS Disability Research Network.

Who will we work with?

• A/Prof Adam Berry, UTS Data Science Institute
• Prof Bronwen Dalton, UTS Business School
• Prof Bronwyn Hemsley, Faculty of Health, Speech Pathology
• Dr Philippa Carnemolla, Faculty of Design, Architecture & Building
• Dr Hamish Robertson, Faculty of Health, School of Public Health
• Dr Linda Steele, Faculty of Law
• Dr Kirsty Young, Faculty of Arts and Social Sciences, School of Education

Our industry partners from the disability advocacy and services sector are key to the co-design process particularly for those people with communication, cognitive and learning disabilities. This project will involve collaboration with partner organisations who we already have working relationships including Paraquad, Council for Intellectual Disability, Northcott Innovation, Onemda & SCIA. If you are interested in participating please contact DisabilityResearch@uts.edu.au.

Research Design 

The project survey will be developed and is guided by a combination of the areas of citizenship and social participation covered in the Convention on the Rights of Persons with Disability (CRPD) and a co-creation process with people with disabilities. We will draw particularly on CRPD Articles 9 through 31, which address justice, independence, education, health, public life, cultural life, recreation, the built environment, mobility, the home, and relationships.  

A series of open-ended questions will be included to capture key issues from the past 12 months and surface those areas of social participation that should be viewed as priorities. 

Collaboration with our existing partners including Paraquad, Council for Intellectual Disability, Northcott Innovation, Onemda & others to: 

• support an online survey for their clients/members (target of 350 survey respondents) and; 
• deliver focus groups with each organisational partner (up to 5 groups of 812 people) to engage more closely with the issues their membership identifies through the survey. Focus groups would include key cognitive, learning and communication/participation supports. 

The research design is informed by a team from 6 UTS faculties, and a co-design exercise including an external chair as well as disability advocacy and service groups. The monitor is also partly modelled on Mission Australia’s Annual Youth Survey, previously managed by Professor Dalton. 

The project will produce quantitative and qualitative data and directly inform the design of future larger scale initiatives. 

Funding Support

• Cross Faculty Collaboration Grant, UTS

Network Research Themes

• Inclusion and Social Participation
• Social Justice, Diversity and Equity
• Health and Wellbeing