Data collection to inform design and measurement

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) (Article 31) requires States parties to collect appropriate information, including statistical and research data, which is appropriately disaggregated, to enable the formulation and implementation of policies which give effect to the UNCRPD. The Sustainable Development Goals also require indicators to be disaggregated by disability, where relevant. The World report on disability (2011) and UNICEF’s State of the world’s children report (2013) have both called for standardisation of disability statistics which would allow for international comparison and the monitoring of progress on disability policies, including the implementation of the UNCRPD.

In addition to contributing to policy formation, disability data can play a pivotal role in the development, implementation, monitoring and evaluation of disability inclusive development programs. Quantitative data can illuminate key issues such as prevalence of disability and the numbers of persons with disabilities participating in particular programs (e.g. children with disabilities in schools). Qualitative data can highlight evidence about the types of interventions or supports that are most effective in bringing about change (e.g. to increase the enrolment, retention, participation and progression of children with disabilities in school).

Resources in this section provide background regarding current disability data options available for use at the national and program levels. These resources provide means to help establish disability prevalence and priorities, inform policy and programs, and enable measurement of effectiveness. Considerable global attention has been paid to the development of tools to enable disability data collection at the national level. There is a slowly emerging body of literature regarding program-level experiences and good practices in the collection and disaggregation of disability data to support measurement of performance against disability.

Bush A, Carroll A and James K (2015) Practice note: collecting and using data on disability to inform inclusive development PDF, 877 KB (Word version also available)

This Practice Note has been prepared by Plan International Australia and the CBM Australia-Nossal Institute Partnership for Disability Inclusive Development. It identifies principles, practices and approaches to guide agencies in effectively collecting and analysing data related to disability, and using this to strengthen disability inclusion within programs. It discusses key issues and principles to consider in collecting data in a disability inclusive way, and how to use information gathered to strengthen disability inclusion throughout the program cycle. It then outlines methods and tools that can be used to gather data with and about both adults and children with disabilities. This Practice Note would be useful for program managers and monitoring and evaluation advisors as well as those advising on or overseeing the generation and use of data on disability.

Wissenbach L (2014) Pathways to Inclusive Development: How to Make Disability Inclusive Practices Measureable? PDF (643 KB)

This paper explores different approaches to measuring disability inclusive development and proposes an approach that focuses on measuring the drivers of disability inclusion. It outlines the two main approaches currently used when measuring disability inclusive development: the measurement of disability prevalence, and participation and quality of life of persons with disabilities. For each focus area, the paper outlines current measurement instruments and theories relevant to that area of focus. It then proposes a third focus on measuring inclusive practice in development processes by developing indicators related to the drivers of inclusion. This paper is useful for thinking about how the theoretical constructs of disability inclusion can be transferred into practical measurement indicators.

Samman E and Rodriquez-Takeuchi L (2013) Old age, disability and mental health: Data issues for a post 2015 framework Prepared for the Overseas Development Institute (PDF 545KB)

This background note focuses on the inequalities associated with old age, disability and mental health. It identifies data gaps as a key concern across the three groups. It suggests that this gap can be addressed by revisions to standard household surveys and existing disability data tools. This is a useful document for policy makers and statisticians working on measuring inequalities.

World Health Organisation and World Bank (2011) World report on disability - Chapter 2 (PDF 1 MB) Also available in French, Portuguese and Spanish

Chapter 2 of this report explains the importance of collecting reliable disability data. It presents estimates of the prevalence of disability, factors affecting trends in disability (for example demographic, health, and environmental issues), the socioeco¬nomic circumstances of people with disabilities, need and unmet needs, and the costs of disability. This is a useful introduction to the collection and use of disability data in developing countries.

World Bank (2009) Examining early child development in low-income countries: A toolkit for the assessment of children in the first five years of life (PDF 2.61 MB)

This toolkit guides those planning or evaluating programs and interventions designed to improve the developmental outcomes of infants and young children, including early intervention programs. It provides useful information on early childhood development and its measurement and provides recommendations for planning successful assessment. This would be useful those evaluating programs and designing large scale child development monitoring systems, from a project to health system level.

CBM and London School of Hygiene and Tropical Medicine (2013) Research summary: The key informant child disability project in Bangladesh and Pakistan (PDF, 151 KB)

This summary report describes how the key informant method has been used to identify children with disabilities in developing countries. It compares the cost and outcomes of this approach with those of household survey methodology, and provides recommendations for how the key informant approach can collect data for use in program planning, identification of barriers, and advocacy initiatives.

The Rapid assessment of disability (RAD) toolkit

This RAD toolkit contains validated questionnaires to collect information regarding disability prevalence and the wellbeing and needs of persons with disabilities, and guidelines for their use. This website explains how the RAD can be used to collect disability information in order to inform the design and implementation of disability inclusive development programs. The development of the RAD was funded by the Australian Aid program, and the RAD toolkit was made available for wider use in early 2014. It provides contact details for further information.

Repository of disability surveys and censuses

This website presents work that is being done in preparation for the implementation of the Model Disability Survey, the development of which was initiated by the World Health Organization and the World Bank. This survey aims to collect data regarding the prevalence and needs of persons with disabilities at the national level, and is currently under development. It is envisioned that the data collected could inform the development of disability inclusive policies and programs. The website includes information regarding past disability surveys and/or disability census data from around the world. Country information is organised according to World Health Organisation regions, and contains links to the data source.

Madans J, Loeb M and Altman B (2011) Measuring disability and monitoring the UN Convention on the rights of persons with disabilities: The work of the Washington group on disability statistics

This paper describes the development of the Washington Group disability questions, and how they can be used at the national census level to collect disability data which can be disaggregated against other factors to determine the situation of persons with disabilities over time, inform policy development, and measure progress towards a disability inclusive society by providing a mechanism through which the implementation of the UNCRPD can be monitored in an internationally comparable, standardised way. This is seminal material for those wishing to understand how disability data can be collected and used at the national level to inform the development of policy, and measure its impact.

Huq NL, Edmonds TJ, Baker S, Busija L, Devine A, Fotis K, Marella M, Goujon N and Keeffe J (2013) The rapid assessment of disability – Informing the development of an instrument to measure the effectiveness of disability inclusive development through a qualitative study in Bangladesh CBR & Inclusive Development, Vol 24, No 3

This article provides further information about the RAD, including the process of its development. (Note this is a restricted access article).

United Nations Development Group (2011) Including the rights of persons with disabilities in United Nations programming at country level: A guidance note for United Nations country teams and implementing partners (PDF 193 KB)

This guideline provides an example of how disability can be included across an agencies program management cycle. Chapter 3.4 specifically refers to measures the agency can take to support disability inclusive monitoring and evaluation within country teams and implementing partners, with reference to how disability data can be sourced and utilised. Although this document is specifically for use by United Nations agencies, those seeking to understand how programming processes can be increasingly disability inclusive could use it as an example.

Washington Group on Disability Statistics

The Washington Group on Disability Statistics, established under the United Nations Statistical Division, is a working group made up of representatives of over 100 National Statistical Offices and international, non-governmental and disability organisations. It was set up to meet the challenge of disability definition and measurement in a way that is culturally neutral and reasonably standardised among the UN member states. This webpage explains the history of the formation of this group and its role. It contains links to its objectives, background documents and the ‘short set’ of questions, which is the set of six questions recommended for the capture of disability information within national level data collection, for example censuses and demographic surveys. The Washington group questions can enable disaggregation of disability against other demographic factors to allow for the development of disability policy, and the measurement of its effectiveness over time. This is a key resource for individuals seeking to support the capture of standardised, internationally comparable disability data at the national level.

There are no case studies available

Washington Group on Disability Statistics technical presentation

Jennifer H. Madans Ph.D., Associate Director for Science, National Center for Health Statistics (NCHS) and Mitchell Loeb,
Health Scientist, NCHS from the secretariat of the Washington Group on Disability Statistics delivered a technical session
on how to use the Washington Group questions in monitoring data systems and how to disaggregate data by disability
followed by a question and answer session at the University of Melbourne on Thursday, 30 April 2015. The presentation
was organised by the Australian Government Department of Foreign Affairs and Trade.

Presentation from the Washington Group on Disability Statistics
Picture of three women from Papua New Guinea collecting information about road use. One of the women is using a wheelchair and has data sheets on her lap.

Photo: Travelling Together project

Data collectors on the 'Travelling Together' research project gather information from people with disabilities about their use of roads in rural Papua New Guinea. Further information about the project can be found here. Copyright: Travelling Together project