International Views on Disability Measures: Moving Toward Comparative Measurement: Volume 4

This volume is divided into three sections providing: information about the background of the development of this international effort to develop culturally compatible measures of disability for use worldwide; examples of what kind of measures are currently in place in a variety of countries; and finally, some examples of the exciting methodological work that is underway to improve measurement and provide the ability to make comparisons cross-nationally.

The participants, who included statisticians from offices in national statistical systems in addition to representatives of the disability community, academic researchers in the field of disability statistics and users of disability data, were provided background documents to facilitate the discussion of the issues. Those documents represented materials from the U.N., the World Health Organization and Eurostat and included the Principles and Recommendations for Population and Housing Censuses, Revision 1, and the International Classification of Functioning, Disabilities and Health (ICF).

Several international and supranational organizations have undertaken efforts to improve and standardize the measurement of disability in population-based surveys. Among these are the Organization for Economic Cooperation and Development, the Statistical Office of the European Commission, the United Nations Statistical Division, the World Health Organization Regional Office for Europe, the World Health Organization, and Réseau sur l’Espérance de Vie en Santé Européennes. In this report their activities and recommendations are reviewed and examined from the viewpoint of the International Classification of Functioning, Disability, and Health.

Collection of data about disability in a census or survey context is influenced by the cultural context, particularly the beliefs and practices within the communities where the data are collected. Attitudes toward individuals with disability will influence what questions are asked, how such questions are framed, and how individuals in the community will respond to these questions. This article examines how culturally defined concepts of disability influence the development of questions on the topic, as well as helps determine who asks the questions and who answers the questions. These issues in turn influence how much data are collected and how accurate the data are. It also examines how ethnic diversity and poverty contribute to these questions. Recommendations for attention to these issues are made by census and survey.

The following is a reaction to the new developments in measurement language and the approaches to definitions of disability developed through the revisions of the ICIDH and the resulting ICF. It provides the view of an individual who has lived with limitations as well as an individual who has served as the president of an international disability organization.

The aim of the paper is to review the experiences of developing countries in collecting disability data with regard to the methods and definitions used. The review is based on data in the United Nations Disability Statistics Database, version 2 (DISTAT-2). We analyze the prevalence rates of disability in relation to the characteristics of questions used to identify persons with disabilities and the relationship between disability prevalence and other social and economic indicators. The wide difference in approaches used by countries to identify persons with disabilities result in very different rates of disability prevalence, thus making the comparison of these rates very problematic. The paper gives suggestions on how to improve methods to collect data on disability.

It is generally difficult for the government to come up with any meaningful programs for persons with disabilities (PWDs) unless statistics to that effect have been made available. Disability Statistics in Uganda is one of those areas of social statistics which has been growing at a slow pace in the past compared to other socioeconomic indicators, but now is an area of growing concern and picking up steadily. Censuses have remained the major data providers for disability statistics and the first of which was the 1991 census. The 2002 census similarly collected information on PWDs, and this information is to be widely disseminated at national and lower levels. Both censuses were conducted by the Uganda Bureau of Statistics (UBOS). UBOS has collected similar but a little more detailed information on disability using two household surveys.

However for effective program design, implementation and resource allocation for PWDs, a lot needs to be done in terms of harmonizing the concepts on disability with the International Classification of Functional Disability and Health (ICF). The power of the census results is that it provides data to the lowest administrative level. Conducting a fully fledged national survey for PWDs will provide adequate baseline data for meaningful purposes and priority issues for government and other users.

This report provides information on the various sources of disability data and how concepts are defined by each institution. It highlights the Uganda Bureau of Statistics, Ministry of Education and Sports (Annual School Census and the Department for Special Needs), Ministry of Gender, Labour and Social Development (Community-Based Rehabilitation Program) and the Ministry of Health as data collecting institutions. It is noted that each institution use different concepts and methodology for data collection. Engaging both users and producers in the disability data production process, encouraging regular dialogue and establishing collaborative arrangements with local and international research institutions are avenues for utilizing the scarce resources for the development of disability statistics. The focus and direction of the development of disability statistics in Uganda calls for a sustained system of monitoring intervention that government and other development partners have to put in place.

The issues raised in this report will facilitate the process of harmonisation of concepts and definitions used while collecting disability data. It is noted that except for the Community-Based Rehabilitation Information pilot system under the Ministry of Gender, Labour and Social Development, there is little or no use at all of the ICF. The pilot system is ongoing and is expected to expand to other districts. It is hoped that this will enrich the process of harmonizing concepts with the Integrated Community-Based Rehabilitation Information System to provide meaningful results. The process of coordination is hereby called for.

Concepts of disability have evolved over the past few decades. The focus of attention has shifted from disability as a state, a consequence of disease, to disability being included as just one of many components of health. This has been realised in part through the implementation of the International Classification of Functioning, Disability and Health (ICF). Despite these developments and increased focus in recent years, reliable disability data, particularly from low-income countries, are lacking.We present an innovative approach to measuring disability in a population that is based on some conceptual elements of the ICF, namely activity limitations and participation restrictions. The results are derived from studies on the living conditions among people with disabilities in Namibia, Zimbabwe and Malawi conducted between 2001 and 2004. From the data analysis perspective, the research challenge lies in a shift in the dependent variable from a dichotomous outcome measure (disability as a state: disabled, not disabled) to a continuous measure of activity limitations and participation restrictions – mirroring the range of disability we see in society.These measures of activity limitations and participation restrictions must however not be interpreted in isolation, but as integral to the environment, society and culture from which they are derived. This will require an expanded view of disability data and effect substantially greater measurement challenges.

A new measure of disability used in the 2000 Census allows an expanded data set on the population with disabilities within all regions of Brazil. Using two different conceptualizations of disability including limitations in activities and impairments in body function and structure, the questions provide a richer source of information for policy issues. Initial use of the data has provided increased knowledge about the age, sex and racial makeup of the populations with disabilities and the geographic distribution of this population within Brazil.

The aim of this article is to present the project “Information System on Disability”, carried out by ISTAT (Italian National Statistics Institute). The background context affecting its implementation is described, in terms of both the policies and the main information sources on disability available in Italy. The paper does not attempt to develop a new theoretical explanation of disability, but underlines the steps and actions that must be taken, and problems that must be overcome in building a statistical information system on disability able to satisfy the information needs of diverse users.

In the International Classification of Functioning, Disability and Health (ICF) 2001, the World Health Organization (WHO) defines disability as: ‘an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between an individual (with a health condition) and that individual's contextual factors (environmental and personal factors)’, with environmental factors including assistance from other people, from equipment and from formal sources. WHO previously defined disability, in the context of health experience, as “any restriction or lack (resulting from impairment) of ability to perform an action in the manner or within the range considered normal for a human being” (World Health Organization, 1980, p. 28).

The International Classification of Functioning, Disability and Health (ICF) was published in 2001 after over a decade of international discussion and field testing (see, for instance, Bickenbach, Chatterji, Badley, & Ustun, 1999). Its ratification by the World Health Assembly was keenly awaited in Australia, by people interested in working with a model of disability attuned to a human rights and equal opportunities approach, and by people wanting to use the new model in disability and health policy and information systems. This paper outlines developments being implemented and ideas being discussed in Australia, particularly with the Australian Collaborating Centre (ACC).¹

National estimates of persons with disability are of great importance since they inform policy and program development. However, accurate estimation depends on accurate measurement, and disability measurement is still evolving. Using data from the 1994–1995 National Health Interview Survey and Disability Supplement, this study examines the relationship between functional and activity limitations and equipment use in order to characterize the influence of environmental factors on disability measurement. Our findings highlight the challenging methodologic issues related to measuring a concept of disability that reflects person–environment interactions.

The multidimensionality of the concept of disability makes the development of questions to measure the concept very complicated. In addition, the purposes of data collection can require a variety of different dimensions of the concept of disability to meet the variety of data uses. This paper proposes a data matrix for use in focusing the methodologist on the issues related to the multidimensionality of the concept and the variety of data needs when planning surveys. Discussions of the three components of the matrix, purpose, conceptual domains and question characteristics, provides the reader with an understanding of the elements of this tool. Multiple tables provide examples of the possible uses of the matrix.

Barbara M. Altman, a sociologist with a Ph.D. from the University of Maryland is currently a special assistant on Disability Statistics at the National Center for Health Statistics and an adjunct associate professor at the University of Maryland, College Park. She is currently involved in revision of the measures of disability in the American Community Survey and has a key role in the Washington Group, an international group seeking to develop culturally compatible measures of disability worldwide. Her disability research interests focus in three areas: disability definition and measurement in survey data; access to, financing and utilization of health care services by persons with disabilities, particularly working-age persons and women with disabilities; and disability among minority groups. She is the author of numerous articles and book chapters on disability topics, and she is currently co-editor of the series Research in Social Science and Disability.