What can be done to improve the evidence?

A useful framework for improving data is presented in Figure 1. It involves making improvements in 3 key areas:

  • maximising the use of existing data sources
  • improving the quality and comparability of data across data sources
  • adding to data sources, including by developing new data sources in priority areas and through data linkage.

Figure 1: Priority themes to improve the evidence base for people with disability

Source: ABS 2013.

Key to this is that data gaps or issues do not prohibit reporting on what is available. Instead data limitations are acknowledged and data agencies work together to continually improve data availability and quality.

Maximise the use of existing data sources

Bringing together information from multiple data sources helps support a person-centred, whole-of-system view of the experiences of people with disability in Australia. This provides a more comprehensive picture than is possible by relying on any one data source.

Examples of national reporting that draw on multiple sources to understand the experiences of people with disability are:

  • this report
  • National Disability Strategy reporting (DSS 2019)
  • the Report on Government Services (SCRGP 2019).

Such national reports complement the large body of research on the experiences of people with disability in Australia and reporting at state and territory levels. However, it is through the sharing of existing data sources, particularly for data linkage, that much greater gains in understanding will become possible.

Improve the quality and comparability of data sources

Many data collections exist across the different agencies and sectors that collect information about people with disability. This includes:

  • the AIHW
  • Australian Bureau of Statistics (ABS)
  • Department of Social Services (DSS)
  • National Disability Insurance Agency (NDIA).

Despite this, gaps exist, as do some inconsistencies in defining disability within different sources of data.

Some options that could improve the quality and comparability of existing data sources include:

  • gaining agreement to adopt more consistent definitions across data collections, where possible
  • adding a disability flag in mainstream data collections—an agreed set of questions to identify people with disability and the severity of their disability.

These options come with issues to consider, including privacy, the role of services providers and cost. Given these issues, there is a growing view that data sharing and linkage, combined with accommodating different definitions of disability and adopting more consistent definitions and disability flags where sensible, may be the most practical way forward.

Adopting more consistent definitions across sources where possible

Disability is generally defined depending on the purpose and type of data collected. This means that definitions may differ between population surveys and across administrative data collections.

Variations in definition and scope can be managed, at least in part, by careful analysis and reporting. However, strategies to improve the consistency of definition and coverage between sources of data should also be considered. Classification frameworks, such the World Health Organization’s International Classification of Functioning and Disability, are useful in this process. Such frameworks help to understand differences in definition between data sources and can be used to improve consistency going forward.

Adding a disability flag in mainstream data sources

The inclusion of a flag in data sources enables key interest groups, such as people with disability, to be identified. This can reduce the need to develop new data collections.

An example of a flag related to the identification of people with disability within mainstream data collections is the AIHW’s standardised disability flag. This flag is derived from a standard set of questions assessing a person’s level of functioning and need for support in everyday activities. These questions are based on the International Classification of Functioning and Disability, and are broadly consistent with the short disability questions the ABS uses in a number of its social surveys. Versions of the flag have been implemented in the AIHW’s Specialist Homelessness Services Collection and National Prisoner Health Data Collection, and are being implemented within other AIHW collections.

The AIHW is also developing a flag for use in data collections to indicate if a person is receiving National Disability Insurance Scheme (NDIS) support. This flag could be used to look at the use of mainstream and other services by NDIS participants. If used together with the standardised disability flag, it could potentially also be used to examine participation in the NDIS as well as to look at if there are differences in the use of mainstream services between NDIS participants and other people with disability.

A wider implementation of such flags, coupled with regular supply of these data for national collation and reporting, would improve the ability to report more comprehensively on people with disability. For example, the addition to, or improvement of, disability flags in existing national child protection, out-of-home care and youth justice data collections would improve visibility of children with disability in these systems.

Add to data sources to address priority gap areas

Data gaps can be addressed by:

  • enhancing or adding data items to existing data collections
  • enabling data sharing and linkage of data
  • creating new data collections or data assets to fill priority gaps.

Enhance existing data sources to capture data about disability population subgroups

Existing data sources could be improved to better capture data about subgroups in the disability population, such as special or vulnerable groups. For example, key data gaps exist for people with disability who:

  • are also Aboriginal and Torres Strait Islander people
  • live in rural and remote Australia
  • live in care settings
  • are also LGBTQI+ people
  • are culturally and linguistically diverse
  • have suffered abuse
  • have suffered discrimination
  • are homeless.

Challenges exist in collecting data on vulnerable populations, including data quality and coverage. It can be difficult, for example, to obtain a large representative sample of some populations in national surveys and data become less reliable and robust as sample size decreases.

Another key area in which existing data could be improved relates to the disability workforce. While some information is collected from National Disability Services member organisations and through the ABS Labour Force Survey, there are opportunities to improve national information in this area.

Safely share and link data to better understand pathways and outcomes

Safely sharing data for statistical purposes, including for data linkage, could lead to major improvements in understanding the experience of people with disability in Australia.

Some data collected on people with disability are not widely available for use or sharing. These include, but are not limited to:

  • data collected by non-government organisations but not collated for national analysis
  • detailed data from the NDIS currently not available outside of the NDIA (other than in summary format in NDIS quarterly reports).

Improving the ability to access these data would assist in expanding the evidence base, particularly in understanding other services people with disability use.

Some benefits of data sharing, however, cannot be realised without data linkage. At present, for example, it is difficult to understand how different specialist disability support systems interact, sucha as how the NDIS interacts with other specialist disability services. It is also difficult to understand how these specialist disability services interact with mainstream supports.

While data linkage is a powerful tool, challenges remain before its benefits can be fully realised. The lack of consistent linkage information across administrative systems in Australia, and complexities in data sharing and access arrangements, mean that linking data from various sources is often complex, time consuming and costly. There are also issues associated with working with linked data that add to the complexity, timeliness and cost, such as extensive data cleaning often being required prior to linkage (for example, as a result of different data ‘rules’ being applied to seemingly similar data items in different sources).

Under the direction of the Australian Digital Council, several jurisdictions are developing options for a new National Disability Data Asset that would help work through many of these issues, in consultation with people with disability, service providers, governments and the research community.

Fill gaps where limited or no data currently exist

New data collections may need to be developed. One potential example relates to specialist disability services provided outside the NDIS. While a large scheme, the NDIS will not provide all specialist disability supports to all people with disability.

The AIHW’s Disability Services National Minimum Data Set (DS NMDS) fills part of this gap but, post 2018–19, the last year of collection under the DS NMDS, no national data will be available on services outside the NDIS. Such data are vital for examining the interactions between the NDIS and other services (PC 2017a and PC 2019).

References

ABS (Australian Bureau of Statistics) 2013. Bridging the data gaps for family, domestic and sexual violence 2013. ABS cat no. 4529.0.00.002. Canberra: ABS. https://www.abs.gov.au/ausstats/[email protected]/mf/4529.0.00.002

ABS 2016. Disability, ageing and carers, Australia: summary of findings, 2015. ABS cat no. 4430.0. Canberra: ABS. https://www.abs.gov.au/ausstats/[email protected]/mf/4430.0

ABS 2018a. ABS Sources of Disability Information, 2012–2016. ABS cat no. 4431.0.55.002. Canberra: ABS. https://www.abs.gov.au/ausstats/[email protected]/mf/4431.0.55.002

ABS 2018b. Census of population and housing: estimating homelessness, 2016. ABS cat no. 2049.0. Canberra: ABS. https://www.abs.gov.au/ausstats/[email protected]/mf/2049.0

AIHW (Australian Institute of Health and Welfare) 2018. Specialist homelessness services 2016-17: additional material. Canberra: AIHW. Viewed 29 August 2018, https://www.aihw.gov.au/reports/homelessness-services/specialist-homelessness-services-2016-17/data

DSS (Department of Social Services) 2019. National Disability Strategy 2010–20: Progress report to the Council of Australian Governments 2016 https://www.dss.gov.au/disability-and-carers-supporting-people-with-disability-resources-supporting-people-with-disability/progress-report-to-the-council-of-australian-governments-2016

PC (Productivity Commission) 2017a. National Disability Insurance Scheme Costs—study report. Productivity Commission 2017. https://www.pc.gov.au/inquiries/completed/ndis-costs#report

PC 2017b. Data availability and use, inquiry report. https://www.pc.gov.au/inquiries/completed/data-access#report

PC 2019. Review of the National Disability Agreement—study report, Productivity Commission, Canberra, January 2019. https://www.pc.gov.au/inquiries/completed/disability-agreement#report

PM&C (Department of the Prime Minister and Cabinet) 2018. New Australian Government Data Sharing and Release Legislation: issues paper for consultation. Canberra: PM&C. https://www.pmc.gov.au/resource-centre/public-data/issues-paper-data-sharing-release-legislation

SCRGP (Steering Committee for the Review of Government Service provision) 2019. Steering Committee for the Review of Government Service Provision, Report on Government Services 2019. https://www.pc.gov.au/research/ongoing/report-on-government-services/2019