Collecting data on people with disability – who is being left out of the picture?

The health policy response to Covid-19 for people with disability has highlighted the importance of having accurate data with which to make informed policy decisions. However, as Dr Nicola Fortune discusses below, data collection doesn’t always capture information on everyone and it is important to look at who might be being left out of the picture. Having reliable and accurate data is essential for not only ensuring equitable outcomes for people but for holding governments to account for policy decisions.

Having data on people with disability is important. As a broad group, people with disability experience disadvantage on a range of social, economic and health measures. We need quantitative data that demonstrate inequalities between people with and without disability to advocate for action and to design policy and interventions. And we need data for accountability – to know whether government initiatives, policies and interventions are really working to reduce disability-related disadvantage. In Australia, we have some powerful national survey data sources that provide information about the experiences and circumstances of people with disability. Many of these are surveys run on a regular basis by the Australian Bureau of Statistics (ABS). It is always tempting to take data on face value. But when we use national survey data on disability – for advocacy, research, policy, or simply to inform ourselves – we should be aware of who those data represent, and who is left out.

The ABS Survey of Disability, Ageing and Carers (the ‘Disability Survey’) is a rich source of data on Australians with disability. As well as detailed information directly related to disability, such as people’s activity limitations and need for assistance, the Disability Survey provides insights on many aspects of people’s lives and circumstances, spanning employment, housing, education, transport, internet use, access to health services, social connectedness, and disability-related discrimination. According to Disability Survey data, in 2018 there were 4.4 million Australians with disability; 18% of the population. About 4% of people with disability – 188,000 people – were living in various types of ‘cared accommodation’, including nursing homes, aged care hostels, psychiatric institutions, and group homes for people with disability. This figure includes 13,500 people aged under 65 years living in cared accommodation.

The information captured by the Survey about people living in ‘cared accommodation’ is quite limited (basically just questions about long term health conditions, use of aids, and limitations in or need for assistance with various activities), and the survey forms for this group of people are filled out by staff members, not by the people themselves. So we don’t have information on social and economic aspects of life for this group of people, as we do for those who live in ‘private dwellings’.

Several other ABS surveys include a short set of questions used to identify people with disability. This is really important, because it means that data are available to make comparisons between people with and without disability on measures like income, employment status, educational attainment, housing tenure, and participation in social and cultural activities. By comparing data for people with and without disability, we can identify where inequalities exist, and measure the magnitude of those inequalities. But these surveys only include people living in ‘private dwellings’. ‘Non-private dwellings’ include boarding houses, hospitals, psychiatric hospitals or institutions, nursing homes, accommodation for people who are homeless, prisons, and group homes for people with disability. It is hard to know how many people with disability are living in ‘non-private dwellings’ – the ‘cared accommodation’ category in the Disability Survey includes only certain types of ‘non-private dwelling’.

Data from the 2016 Census show that 3.9% of the total population was living in ‘non-private dwellings’ on Census night: 639,000 people aged under 65 years, and 290,000 aged 65 and over. And people with disability were over-represented in ‘non-private dwellings’: 19% of people living in non-private dwellings reported a need for assistance with self-care, body movement or communication activities, compared with just 5% of people living in private dwellings. But this measure of disability used in the Census is quite narrow, and does not include people with less severe impairment, so the total percentage of people living in non-private dwellings who have disability is certainly well above 19%. (Caveat: there was a 28% non-response rate for the question about need for assistance among people living in non-private dwellings, so we do not know the true rate of need for assistance among people living in non-private dwellings; the ‘need for assistance’ question is not included in the Census form for prisoners).

We might expect people living in non-private dwellings to have a different profile to people living in private dwellings in terms of their circumstances and experiences in a range of life areas, like health, income and material resources, and that they will be, on average, more disadvantaged than people who live in private dwellings. People with disability living in non-private dwellings are likely to be a particularly marginalised and vulnerable group. As well as those living in non-private dwellings, there are other groups of people with disability who are excluded from national survey data. The roughly 1% of people who live in very remote areas and discrete Aboriginal and Torres Strait Islander Communities are not included in the Disability Survey, or the ABS General Social Survey, National Health Survey, Survey of Income and Housing, or Personal Safety Survey. People who are otherwise ‘in scope’ for a survey may also be excluded if they are not able to answer survey questions themselves and an acceptable proxy person is not available to answer on their behalf. There is no record of how many people are excluded for this reason. In the case of the Personal Safety Survey, which collects information about experience of violence and abuse among other topics, proxy interviews are not conducted, so people who are unable to answer for themselves are missing entirely from the survey data. In the context of the current Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, this is clearly a significant limitation.

These exclusions may have little effect on the broad statistical picture of the Australian population. The primary purpose of these big, national surveys is to produce reliable statistical data that can inform policy at a broad scale, rather than to provide information about specific groups of people who make up only small percentages of the overall population. These surveys are expensive to conduct, and pragmatic decisions must be made about how to use available resources most effectively. Nonetheless, the fact is that very specific groups of people with disability are missing from national data, and we must be alert to the implications of this.

What is not measured is easily dismissed, ignored, or simply not noticed. People with disability are at risk of being rendered invisible via a range of mechanisms at work in our society: attitudinal and environmental barriers to participation in education, employment, social, civic and cultural activities, and under-representation in positions of power and influence and in the media. Arguably, exclusion from national data sources is another such mechanism. It is important, first, that we acknowledge who is missing from national data sources and the implications of this and, second, that we devote effort and resources to capturing data about those people who are currently invisible in our national data. Reliable data about the circumstances and experiences of all people with disability are essential for exposing where inequality and disadvantage exist, advocating for effective action towards a fair and inclusive society, and holding our governments and ourselves accountable.

Dr Nicola Fortune is a Research Fellow at the Centre for Disability Research and Policy at the University of Sydney and the Centre of Research Excellence in Disability and Health working on the development of a monitoring framework and indicators for reporting on the health of working-age adults with disabilities. Nicola’s background is in disability and health data development and analysis, including the development and implementation of the WHO’s International Classification of Functioning, Disability and Health (ICF) and International Classification of Health Interventions (ICHI).

Posted by Celia Green