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Data Revolution, Opinion

Starting a disability-inclusive data revolution

Written by Sophie Mitra, Associate Professor of Economics, Fordham University.

This is the 12th post in our blog series on What kind of ‘data revolution’ do we need for post-2015?’.

Disability has been a drop in the ocean of international development. The Millennium Development Goals (MDGs) did not mention persons with disabilities. The prevailing view of the development community may be captured by what a policy maker told me a few years ago: “we have many challenges, so much poverty, we cannot also deal with disability that affects few people.”

This lack of attention to disability is perhaps not surprising. There are confusions and misconceptions on what disability is and on the scale of the phenomenon. The term ‘disability’ itself is elusive. One cannot simply ask in a survey if anyone in the household has a disability as people may have different understandings of disability. In general, respondents tend to report only extreme cases of impairments (e.g. blindness) leaving out severe or moderate cases. They may also not to report a disability due to stigma. Disability is therefore not a simple characteristic. It can be defined and measured in different ways, for instance in medical terms, or as resulting solely from barriers in society.

The lack of data is also responsible for the lack of attention to disability, but awareness of the need for data on disability has improved. The recent report by the High-Level Panel on the Post-2015 Development Agenda repeatedly refers to disability, including in the call to end extreme poverty and “leave no one behind” and in the call for a “data revolution”: “data gathered will need to be disaggregated by gender, geography, disability, and other categories, to make sure that no group is left behind.”

Disability is not rare

Recent evidence on prevalence shows that disability is not a rare occurrence, to say the least. Using internationally comparable data, the global prevalence rate stands at 1415%, with 80% of people with disabilities in developing countries. In a study of 15 developing countries, people with disabilities are more likely to experience multi-dimensional poverty in most countries. Thus meaningful development goals and targets cannot ignore persons with disabilities.

Data needs

Data needs on disability are staggering. There is a need for data on disability prevalence, by severity level, age at onset, disability type, gender and age group. There is a need for data on access to general services such as education and health services and on multiple dimensions of poverty. There is a need for data on disability-specific services such as rehabilitation services and environmental barriers to participation, whether physical (e.g. lack of ramps) or attitudinal (e.g. negative expectation on the capacity to work).

Data collection

The challenge then is how to collect the disability data that is needed to inform policy and advocacy efforts as part of the post-2015 agenda. As with any complex social science phenomenon, there are several options in the scale and methods for data collection efforts. I will focus on three options.

Option 1 is a small-scale participatory effort involving multiple stakeholders including persons with the lived experience of a disability. It may go a long way in understanding the situation of persons with disabilities and informing policy and advocacy efforts at one place and one point in time. However, it would not provide the comparable data that is needed to ensure that persons with disabilities worldwide are not left behind post-2015.

Option 2 is to develop a national disability survey that with a battery of questions to measure disability and identify service needs and barriers. This is suitable given significant resources and capacity for data collection and can provide very rich information to inform national or even subnational policy and advocacy efforts. The World Bank and the World Health Organization have embarked on developing a so-called Model Disability Survey to this end. Few countries may, however, have the means to develop and implement such a survey, let alone repeat it over time for monitoring the situation of persons with disabilities post-2015.

A few questions in a post-2015 household survey

Option 3 consists in using a few questions to measure disability in a general household survey used internationally such as the Demographic and Health Survey (DHS). More is known on how to measure disability than when the MDGs were adopted. Indeed, since 2001, there has been an international effort to collect internationally comparable disability data through the United Nations’ Washington City Group on Disability Statistics (the “Washington Group”). This group (which I am not a part of) gathers over 100 representatives of government, non-government and disabled people’s organizations organized under the United Nations Statistical Office.

The Washington Group has developed and tested questions and made recommendations for a short list and an extended list of questions. The recommended short list includes six questions on limitations in seeing, hearing, walking or climbing steps, concentrating, communicating and in self-care (shower or dress). The United Nations encourage Governments to include (at least) the short set of questions recommended by the Washington Group in censuses and surveys.

The recommended questions do not capture all areas of functioning and would not satisfy all data needs. Unlike Option 1, they cannot provide the insights that participatory assessments would. Unlike Option 2, they cannot give a comprehensive profile of service needs and environmental barriers. Option 3, and in particular the Washington Group questions, provide, however, a method to measure disability in a valid and internationally comparable manner with a few questions and may lead to powerful insights on the status of people with disabilities and how they are affected by policies. The ongoing preparation of the post-2015 development agenda provides a unique opportunity to integrate such questions in the household survey that will be used internationally in the post-2015 context.

Overall, different data collection efforts may contribute insightful data towards disability-inclusive development. It seems clear though that the systematic collection of disability data in the core questionnaire of a general household survey such as the DHS is necessary to inform policy and monitor the rights and wellbeing of persons with disabilities worldwide post-2015.

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Discussion

4 thoughts on “Starting a disability-inclusive data revolution

  1. Thanks, Sophie. This is a very nice summary of the issues. I would only add two things: (1) it would be great if we could get the WG questions to become standard questions on household income and expenditure surveys, labor force surveys, and demographic and health surveys so that all standard indicators that countries are already producing could be disaggregated by disability, and (2) It is important to note that collecting data on disability for children is more complicated, but that UNICEF and the WG are currently testing — and close to finalizing — a tool for doing so.

    Daniel Mont

    Posted by Daniel Mont | December 3, 2013, 4:40 pm
    • Thanks Dan. I agree that there would be great benefits in making the Washington Group questions standard in household surveys in general. Thanks for this important note on children.

      Posted by Sophie Mitra | December 4, 2013, 8:46 pm
  2. Disability data is important in planning for disability development in Africa. Thank you Sophie for this information.

    Posted by Innocent Kalu. Cerebral Palsy Niigeria. | January 7, 2014, 11:53 am

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  1. Pingback: Launch of a new blog series: What kind of data revolution do we need for post-2015? | Post2015.org - what comes after the MDGs? - December 3, 2013

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