In recent years, there has been an increased national and international interest in the situation of people with disabilities. As a result, academic researchers, governments and national statistical offices have a growing understanding of the importance of data collection on disability. However, despite the recent advances of disability research and studies to further the essential evidence base for policy and programming, disability data continues to remain scarce and fragmented globally which indicates an ongoing need for more systematic data collection and research.
Statistics on disability are essential tools in the planning, implementation, monitoring and evaluation of policies and programmes for promoting the rights of people with disabilities. The analysis of disability data is also critical for determining the prevalence of disability in a population, identifying the needs and characteristics of people with disabilities, and examining the impact of policies and programmes.
The Convention on the Rights of Persons with Disability (CRPD) emphasizes the continued need for reliable and comparable data on people with disabilities through Article 31. This article requires that governments collect appropriate statistics to facilitate the monitoring of the CRPD and the development and implementation of national policies and programmes promoting the rights of persons with disabilities.
Nevertheless, disability research is not limited to quantitative data collection and statistics. Indeed, this discipline promotes an interdisciplinary approach and broadens the scope of research areas by ensuring a multidimensional understanding of disability.
This keylist provides introductory resources and useful reference tools and manuals about disability research and statistics. Examples of both quantitative and qualitative research are highlighted through recent global, regional and country level research. We welcome your feedback: please send comments or suggested additions to email@example.com.
This chapter describes the emergence of a radical new approach to researching disability and highlights both its potential and the challenges it poses for research in 'special' education
Chapter 17 in Florian L. (ed.) 2007: The Sage Handbook of Special Education, London: Sage, pp. 233-246
This chapter reviews "key issues in the emergence of emancipatory disability research with particular reference to the British literature. It begins with a brief discussion of research ethics in relation to the emergent critique of traditional ways of researching disability, particularly its theoretical standpoint and the disempowering role of research experts. Second, attention centres on the key features of ethical or emancipatory disability research in line with a social model framework. This stresses an avowed commitment to the empowerment of disabled people through a process of political and social change while also informing the process of doing disability research. The third section addresses claims that the emphasis on political partiality deflects attention away from important debates about the choice of methodology and data collection strategies, and their implementation when undertaking disability research"
Note: This is the penultimate draft of an article that appears in: Mertens, D. M. and Ginsberg P. E.(eds.) 2008: The Handbook of Social Research Ethics, London: Sage, pp. 458-473
The UN Convention on the Rights of Persons with Disabilities acknowledges their rights to education, health, work and more. It provides a platform for action and activitism on inclusion and equity in countries which ratify and strive to implement it
This resource provides concise analytical information on international norms and standards concerning persons with disabilities that have been adopted under the auspices of the United Nations system or other inter-governmental bodies and organisations. It is a reference tool that contains information resources on the international and regional normative standards to promote the rights of persons with disabilities in society within a broad human rights framework, encompassing the full range of human rights from civil and political to economic, social and cultural rights and the different mechanisms by which these norms and standards have been adopted in to local laws.
Further, this resource is a practical guide to putting into practice rights on behalf of persons with disabilities. It also provides an educational tool designed to help identify effective measures to promote, protect and integrate the rights of persons with disabilities into all areas of national legislation, policies and programmes and to promote increased awareness of internationally accepted norms on: the equalisation of opportunities for persons with disabilities; the full and effective integration of persons with disabilities in social life and development; and standards to protect and promote the rights of persons with disabilities. It will be useful for: governments; national and international policy makers; inter-governmental, international and non-governmental organisations; researchers in the area of disability rights; civil society organisations concerned with disability issues and the global disability community
"This guidance provides advice on how to involve disabled people in government social research. Involving disabled people can improve the quality of research by ensuring it addresses the most pertinent issues faced by disabled people"
Note: Contact the publisher for alternative formats
This Practice Note provides guidance and tools for the collection and use of data and evidence on disability at a program level, to inform inclusive development practice and outcomes. It includes sections on why to collect information about disability; how to make mainstream data collection processes disability inclusive; planning for data collection throughout the project cycle; and methods and tools for collection of data to support disability inclusion
The document is the result of a collaboration between Plan International and the CBM Australia-Nossal Institute Partnership for Disability Inclusive Development. It was prepared in the context of growing interest among international development agencies in the disability inclusive practice, and the collection of evidence to underpin this. It draws on some of the experiences and learning arising from Plan’s work to strengthen disability inclusion within its development programs and the CBM-Nossal Partnership’s work to strengthen disability inclusion within the Australian development sector
This paper explores the emerging field of disabilities studies from a view point from Britain. It outlines tensions within the field from both within the academy and those between disability studies and disabled people, and explores potential and possibilities for disability studies “"Disability Studies : a global perspective"
Washington DC, USA
Disability definition and tools
The first two sections of this briefing note highlight the importance of disability data collection and dissemination, and describe the Fundamental Principles of Official Statistics. The third section contains international recommendations and a framework for the collection, dissemination and measurement of disability data. The final section presents training workshops on the methodology, collection and analysis of data on disability organized by the United Nations Statistics Division to improve national capacity. This resource would be useful for those who work with disability data and statistics
“"This paper compares the construct and predictive validity of a set of disability questions tested on a sample of respondents in five Asia-Pacific countries. It finds that the construct validity of the Washington Group questions for the seeing, hearing, mobility and self care domains is good when WHO questions for the corresponding domains are used as a benchmark; this does not, however, apply to the questions for the cognition and communication domains. The Washington Group questions perform similar to corresponding WHO questions in terms of predictive validity. For the four models examined - explaining difficulty with household responsibilities, work and school, and joining community activities, as well as employment status - the different question sets perform similar in terms of significance and magnitude of the odds ratios"
"The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains. These domains are classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. Since an individual’s functioning and disability occurs in a context, the ICF also includes a list of environmental factors. The ICF is WHO's framework for measuring health and disability at both individual and population levels"
This paper describes "the work of the Washington Group and explicates the applicability of its approach and the questions developed for monitoring the UN Convention on the Rights of Persons with Disabilities"
BMC Public Health, Vol 11, Suppl 4
This research summary report presents of methodological recommendations for measuring disability in a comprehensive and comparable way
This book presents 'an explanatory model for the causes and consequences of disease, trauma and other disruptions to a person's integrity and development'. It approaches the challenge of creating a classification system from a perspective of social change, human rights and equal opportunities. Specific issues addressed in the book include: the person-environment interaction; positive concepts; disability as the situational result of social participation; extrinsic and intrinsic distinction (or environmental/situational versus personal dimensions); the ethics of applying the classification system in different situations
This report presents information about understanding and interpreting disability as measured using the Washington group (WG)’s short set of questions. The six questions are for use in censuses and surveys according to the Fundamental Principles of Official Statistics and are consistent with the International Classification of Functioning (ICF). The questions produce internationally comparable data on disability by identifying the majority of persons in the population who are at greater risk than the general population of experiencing limited or restricted participation in society. The questions cover six functional domains or basic actions: seeing, hearing, walking, cognition, self-care, and communication. This resource is useful to anyone interested in measuring disability
"The Washington Group on Disability Statistics (WG) is a United Nations (UN) City Group commissioned to improve the quality and international comparability of disability measurement in Censuses and surveys." This website provides the WG's background, objectives, meetings, documents, and short set of questions. This website is useful to anyone interested in disability and statistics
This section of the Washington Group's website provides the internationally comparable short set of questions on disability for use on national censuses for gathering information about limitations in basic activities in national populations. The related protocols for implementing tests of the short set are also provided. This resource is useful for anyone interested in disability and statisitics
Examples of research areas in disability research
“The goal of this literary review is to report on existing knowledge about applied research on the African continent, regarding the living conditions of people with disabilities, poverty, violence and sexual abuse especially regarding children and women with disabilities, community-based rehabilitation and employment”
This paper discusses "the conceptual underpinnings and findings of a household survey conducted in two regions of Pakistan which attempted to address some of these gaps in existing knowledge....The findings of this survey emphasize the continued marginalization of young people with disabilities in the areas of education, employment and marriage prospects. Additionally, reflections on the research process highlight the many challenges entailed in undertaking research on disability issues"
RECOUP Working Paper No 23
"This discussion paper reviews the World Bank poverty assessment literature on the relationship between disability and poverty. The paper found that using standard assumptions about the distribution of household consumption among household members and the typical way that poverty lines are set in World Bank poverty assessments was not as significant as common sense and anecdotal evidence would suggest"
Social Paper Discussion Paper No 0805
This paper outlines the economic and poverty situation of working-age persons with disabilities and their households in 15 developing countries. Using data from the World Health Survey, the study presents estimates of disability prevalence, individual-level economic well-being, household-level economic well-being, and multidimensional poverty measure. Detailed appendices are provided to support the results of the study. This paper is useful for people interested in the social and economic conditions of people with disabilities in developing countries
Social Protection Discussion Paper No 1109
This paper analyses the correlations between a young person’s disability, the economic status of their household, and their school participation. The survey was conducted using 11 household surveys in nine developing countries. The results show that some youth with disabilities live in poorer households, but the extent is not statistically significant. However, young people with disabilities are often less likely to start school and show lower transition rates. This finding suggests that, in developing countries, disability may lead to long-run poverty since youth with disabilities are less likely to achieve qualifications which would allow them to earn higher incomes in their later life
The paper is useful for policy makers and professionals working in development
SP Discussion Paper No 0539
"This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam"
African Journal of Disability, Vol 1, Issue 1, Art. #32
When vulnerable groups such as disabled people are surveyed, representative welfare estimates from non-purposive sample surveys becomes an issue. This paper takes the example of Uganda and describes the connections between disability, poverty, wellbeing and social welfare. This is possibly the first time that statistically representative information on income poverty amongst disabled people has been generated for a developing country
This paper explores the teaching - learning communication in the education of the learners with deafness, with reflection on the mainstream secondary schools of Botswana
Asia Pacific Disability Rehabilitation Journal, Vol 19, No 1
This report explores feminist disabilities studies
This resource reviews evidence connecting disability to the risk of poverty using data from the 1998-99 Household Expenditure Survey (HES), demonstrating that in Australian households with a disabled person, poverty rates are higher and hardship is more prevalent than in households without. It then uses the HES data to estimate the costs of disability which rely upon information on household living standards
This report, formed of two parts, provides robust empirical basis to support the theorized disability-poverty link. The first section presents a systematic review of the literature on the relationship between disability and economic poverty. The second section explores the economic consequences of the exclusion and inclusion of people with disabilities in the areas of education, employment and health. The key pathways through which these economic costs may arise are discussed and studies that have attempted to quantify the financial impacts are reviewed
"This paper reports on the employment of persons with disabilities in India based on recent data from the National Sample Survey. The study shows that the employment rate of persons with disabilities is relatively low compared to that of the all India working age population, with great variations across gender, urban/rural sectors and state. A multivariate analysis suggests that employment among persons with disabilities is influenced more by individual and household characteristics than human capital"
Qualitative approach and tools
This article presents ethnographic research in Sierra Leone with people with disabilities. The author explores challenges faced with the research and the importance of engaging in more reciprocal and collaborative communal research using a social model of disability framework to try and access discourses
Journal of Disability Research, Vol 3, No 4
"The report introduces a methodology for qualitative studies on disability and poverty. The purpose of the methodological approach is to uncover the mechanisms by which various types of impairments interact with barriers in the environment, to limit or influence the economic and social life of people with disabilities and members of their households. The pilot study was carried out in Kenya, and shows that the methodological tool is well suited to this type of studies"
A 2013 Plan study across 30 countries found that children with disabilities were on average 10 times less likely to go to school than children without disabilities. This report presents the findings of a follow-up second phase to the research with a qualitative study on barriers and enablers to education for children with disabilities in Nepal. The research looks at the experiences of 21 children aged 6 to 16 years (8 of them had dropped out of school while one had never been enrolled) through in-depth interviews conducted with 21 families (20 caregivers and 13 children), 9 key informant interviews, and visits to two special schools and one integrated school. The report presents the findings and makes recommendations for the way forward
This report presents the disability situation in Georgia as of September 2006. The qualitative research identifies the most significant issues, challenges and barriers faced by members of the disabled population in order to contribute to a better understanding of the relationship between disability and poverty in a given country and globally, and provides recommendations aimed at designing/improving policies regarding employment, education, health care, and social protection
This report describes the situation of people with disabilities in Kenya and provides recommendations to contribute to the improvement of their living conditions. Using qualitative research, it examines "how cultural factors, inaccessible infrastructure and lack of resources prevent people with various mental, physical, and sensory impairments from participating in the economic and social lives of their communities, as well as how the living conditions and social barriers affects the presence of disabilities." This report is useful for NGOs and governments working with people with disabilities in Kenya
"This report is a contribution towards describing the lives of people with disabilities in Yemen...The purpose of this study has been to uncover the key barriers - e.g. cultural factors, inaccessible infrastructure, lack of resources - that prevent people with various mental, physical, and sensory impairments from participating in the economic and social lives of their communities"
Quantitative approach and tools
This comprehensive toolkit gives the basis for the design and implementation of household surveys. It is designed for those interested in understanding disability within a specific social, political, cultural and religious context. The six sections of this document outline how to design, conduct and analyse a survey which focuses on similar issues. Topics in these sections include: understanding the socio-economic context in order to determine the survey objectives, training the interviewers team and conducting field operations to collect the data. This work would be useful for anyone with an interest in data collection, surveys and disability and development
This publication is aimed at assisting national statistical offices and other producers of disability statistics to improve the collection, compilation and dissemination of disability data. The document addresses methodological issues in the area of disability by providing guidelines and principles related to data collection, through surveys and censuses and also on the compilation, dissemination and usage of data on disability.
This article explores the strengths and weaknesses of participatory rural appraisal (PRA) and key informant (KI) approaches in the identification of people with disability in resource-poor countries
Disability and rehabilitation, Vol 3, No 1
"The Key Informant Method (KIM) is a method that has previously been validated in the identification of children with severe visual impairment and blindness using trained, community volunteers in the place of a door-to-door survey. KIM has been developed by a number of organisations working together to enable states and state parties to formulate suitable policies and programs. The ICED is working with a number of partners using KIM in different settings"
This website provides information about recent KIM projects and related resources
This paper opens by identifying that poverty and disability are inextricably linked. The aim of this document is to provide a concrete definition of disability and explain the significance of measuring the prevalence. The purpose is to provide a set of best practices for data collection that is internationally comparable and specific to disability. This resource would be useful to anyone with an interest in data collection/ measurement and disability and development
Using the ten question screen for children with disability in the multiple indicator cluster survey (MICS) in 20 countries, this report aims "to raise awareness and thereby both prevent new cases of child disability when that is possible and ensure protection and inclusion for children with disabilities. The findings presented in this publication provide decision-makers with basic information from a number of diverse countries that can be used to determine priorities related to child disability, including the prevention of childhood disabilities, the early detection of disorders leading to disability, and the timely provision of medical-rehabilitation services and comprehensive support to families with children with disabilities"
"The purpose of this article is to assess how an approach developed in economics to analyze issues related to the standard of living, the so-called capability approach, may help us understand disability at the conceptual level"
Journal of Disability Policy Studies, Vol 16, No 4
This training manual enhances "the understanding of the International Classification of Functioning, Disability and Health (ICF) based approach to disability measurement. It provides an overview of the ICF framework as well as guidelines on how to operationalise the underlying concepts of functioning and disability into data collection, dissemination and analysis." This manual is useful for anyone who is interested in disability data collection and dissemination for both national and international disability policy analysis, formulation and evaluation
Quantitative studies and Statistics
"Results from a national, representative survey of living conditions among people with disabilities in Zambia based, in part, on the work of the Washington Group on Disability Statistics (WG) that operationalises a functional approach to disability are presented and contrasted with historical census data to illustrate how a flexible approach to the measurement of disability is better suited to the multiple purposes of collecting disability statistics and to the diversity of disability in a population"
Alter, European Journal of Disability Research, Vol 2, No 1
"This paper addresses the issue of the availability of data on persons with disabilities in the Caribbean subregion....It presents the findings of a survey conducted by ECLAC aimed at gaining insight on current practices of national statistical offices and other data collecting agencies with respect to the collection of national data on persons with disabilities. Using data from the 2000 year census for eight countries, the study also examines the impact of disability on education and employment"
This research summary of presents the aims, methods and key findings from two disability studies in Cameroon and India. The studies developed a comprehensive population-based survey methodology that is compatible with the International Classification of Functioning (ICF), and explored the inter-relationship between the components of this framework
This database contains profiles relating to national disability information for various countries in the Asian-Pacific region. Comprehensive information is highlighted regarding general health information, statistical data on disability profile, current situation of persons with disabilities and profiles of disability related organizations. Details are provided for related references, tables, factsheets and figures, as well as Biwako Millennium Framework information. This website is useful for people seeking comprehensive national disability information in the Asia-Pacific region
This report series aims to provide a regional overview of disability policies and practices, as well as relevant country data and information. This fourth edition highlights the complexity of interpreting disability data and stresses the urgent need to work towards a greater common understanding of disability, related data and data collection practices. The report consists of an introduction, two analytical chapters and subregional and country snapshots. The progress in data collection efforts is reflected in the number of country snapshots included in the current edition (52 countries and areas). The data are drawn from national Government sources, based on bilateral communication between national disability focal points and ESCAP, as well as the 2011 ESCAP Disability Survey. This report is useful for policymakers, statisticians and representatives of organizations of, and for, persons with disabilities in Asia and the Pacific
This paper provides "the World Bank’s East Asia and Pacific region with information and insights necessary for improving a focus on disability in its activities. There are two major parts to this paper. The first part reviews disability related issues in the region by describing (1) the prevalence of disability and related issues; (2) major issues and challenges confronting persons with disabilities; and (3) good practices, innovative approaches, and effective organizations in the region working to meet the needs of persons with disabilities. The second part reviews the Bank’s regional level activities through examining project portfolios and AAA products, as well as through interviews with Sector managers and staff members. Based on this review, the paper recommends ways to include disability issues at the regional and sector levels"
This study estimated disability prevalence among adults at global, regional and country levels using internationally comparable disability data and measure. The authors conducted a retrospective analysis of data from the World Health Survey (WHS) (2002-2004) for nationally representative samples of civilian, non-institutionalized populations in 54 countries. A disability was measured as having at least one severe or extreme difficulty with bodily functions (seeing, concentrating) and activities (moving around, self-care) based on an individual’s self-reports
In the 54 countries under study, severe or extreme functional or activity difficulties are highly prevalent. For all countries, disability prevalence is estimated at 14% for all adults. Low and middle income countries have higher disability prevalence compared to high income countries. Among subgroups, disability prevalence stands at 12% among working age adults and 39% among the elderly. Women have higher prevalence than men.
Disability is found to be highly prevalent among adults, with an estimated global prevalence at 14%. Disability deserves enhanced policy attention and resources in public health and international development
Discussion Paper No: 2013-06, Forthcoming in Disability and Rehabilitation
The Global Health Observatory (GHO) provides access to WHO's global health-related statistics. The aim of the GHO is to: compile and verify major sources of health data; provide easy access to country data and metadata; present scientifically sound information in user-friendly formats. Specific areas are provided for theme pages, a data repository, reports, country statistics, a map gallery and standards
The UNDP holds a comprehensive database about different areas relevant to describing the development of a country. This database includes indicators such as literacy, average age of death, child mortality etc and is relevant for all researchers and NGOs
The demand for statistics on human functioning and disability has greatly increased following the International year of disabled persons (1981), the adoption of the United Nations World programme of action concerning disabled persons (1982), and the release of the standard rules on the equalization of opportunities for persons with disabilities (1993). The world programme of action specifically requested that the United Nations develop systems for the regular collection and dissemination of information on disability.
In 2005 the United Nations statistics division will initiate a systematic and regular collection of basic statistics on human functioning and disability by introducing a disability statistics questionnaire to the existing demographic yearbook data collection system. The United Nations statistics division is currently testing the disability questionnaire and developing tabulation and dissemination plans.
This website is a statistical reference and guide to the standards and methods and available data on functioning and disability
These regional reports are the primary focus of the International Disability Rights Monitor (IDRM) project and have been compiled by local IDRM researchers. Each report focuses upon several key areas such as legal protections, education, employment, accessibility, and health and housing services for people with disabilities. The reports include a detailed report on each country and a report card that compares the progress made by countries across the region. Reports are available on the Americas, Asia and Europe, as well as two thematic reports, in downloadable pdf format. They are useful for people interested in research on disability and development
This report presents the findings of a study about the livelihoods of people with disability in Zambia using both individual data and data from household surveys with and without people with disabilities. The report, one of a series of regional research reports to establish baseline data on living conditions among people in Southern Africa, looks at the fields of health, employment, education, living conditions and services for people with disabilities
"This report provided results of a study of living conditions among people with functional limitation in Mozambique. Two comparative studies of different indicators of living conditions were carried out. These studies include: (i) a comparative study of households with and without family member(s) with functional limitation and (ii) a comparative study of individuals with and without functional limitation. In addition, a detailed study that specifically addresses the situation of individuals with functional limitation was also conducted"
"This report adopts a rights-based approach to map the access of persons with physical disabilities to social services in Jordan and assess the extent to which they enjoy equal opportunities and are socially integrated"
"This guide presents ScoPeO, a tool for measuring changes in living conditions as perceived by beneficiaries once a project is implemented. More specifically, the method serves to evaluate quality of life, perception of safety and participation in society and family life in two phases: before or at the start of the project (baseline survey) and at the end of the project (endline survey). Thus, this guide presents concepts related to quality of life and similar notions, the key phases in the process and provides the tools needed to conduct a study on quality of life. This guide is designed for all Handicap International professionals, and in particular the project managers, operational coordinators and technical coordinators in charge of developing, implementing, monitoring and evaluating projects. Handicap International partners may also find this guide useful"
“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”
“This report highlights the salient findings of the two-stage child disability study among children aged 2-9 years conducted in 2011. The first stage was a screen to identify children with conditions making them more likely to be living with a disability. The second stage was a detailed assessment to accurately determine their disability status. This two-stage procedure is designed to reduce the costs of administering a detailed assessment to many children who are highly unlikely to have a disability”