> **WG3.20**
>
> **INFORMATION NOTE FOR THIRD MEETING**
>
> **OF THE WASHINGTON CITY GROUP**
>
> **ON DISABILITY STATISTISTICS**
>
> **(Brussels, 19-20 February 2004)**

**Prepared by Lene Mikkelsen UNESCAP, Statistics Division**

**(mikkelsen@un.org)**

**SUMMARY**

The paper informs about the ongoing work on improving disability
measurement in the United Nations Economic and Social Commission of Asia
and the Pacific[^1](ESCAP). The member countries adopted in 2002 a
regional framework for action, known as the Biwako Millennium Framework
(BMF), to promote an inclusive, barrier-free and rights-based society
for persons with disability. This has given ESCAP a strong mandate and
obligation to work with governments and concerned stakeholders to
improve disability statistics in the region. A first consultative
meeting with member countries took place in 2003. As a result of the
meeting, a two-year project was developed to be carried out in 2004-2005
by ESCAP, with the support of WHO and the UNSD. The project specifically
aims at developing a common conceptual framework for measuring
disability to improve quality and comparability of disability
information and to facilitate achieving the goals of the BMF.

**Introduction**

1.  The purpose of this paper is to inform the third meeting of the
    Washington City Group on Disability Statistics (WCG) of some ongoing
    work which is coordinated by ESCAP and which concerns its 58 Asian
    and Pacific member countries. In 2002, a High-Level
    Intergovernmental Meeting met in Japan and decided to adopt a
    regional framework for action that provides policy recommendations
    for Governments and concerned stakeholders to achieve an inclusive,
    barrier-free and rights-based society for persons with disabilities
    before the end of the decade. One of the critical issues identified
    is the poor development of disability statistics. The BMF rightly
    notes that the lack of adequate and comparable data on disability
    and the disabled persons has led to the neglect of disability issues
    and inadequate development of national plans and policies.

## Situation analysis of disability statistics in the Asia-Pacific region

2.  The data collected in most countries of the region do not reflect
    the full extent of disability prevalence nor does it give
    policy-makers a useful evidence base to draw on for designing
    disability policy. For the majority of the countries in the region,
    the number of disabled persons is grossly underestimated with many
    reporting rates of less than 2 per cent of disabled which, according
    to WHO, is implausible. Furthermore, a common conceptual framework
    for all professionals working in disability is lacking in most
    countries, which impedes proper communication, rehabilitation and
    service intervention.

3.  The inadequate state of disability information in the region is
    recognized in the BMF, which recommends the implementation of the UN
    Guidelines and Principles for the Development of Disability
    Statistics and the use of WHO's International Classification of
    Functioning, Disability and Health (ICF) in the region. With no
    reliable estimates of the number of disabled, types of disabilities
    or unmet needs for assistance, it is difficult to see how progress
    towards the stated goals in the BMF can be monitored. Moreover,
    without appropriate information on the demographic profiles of the
    disabled, where they live and what problems they experience, the
    prospects for developing and improving national plans and disability
    policies remain poor.

4.  National disability information in most countries in Asia and the
    Pacific are mostly derived from a couple of questions included in
    the decennial censuses and from administrative type registers
    covering people with certain types of disability. It is estimated
    that the total number of disabled in the UNESCAP region is around
    400 millions, which gives an idea about the immensity of the
    problem. As disabled persons often also are among the poorest of the
    poor, disability and poverty reduction in the region are closely
    related.

5.  According to international experience, disability definitions that
    are based on ICF and the activity concept which focus on
    individuals' functioning are more relevant to policy and provide
    better coverage. Currently, only a handful of countries in the
    region apply the activity concept and use the ICF, the majority use
    an impairment approach to identify persons with disabilities. Hence,
    a generic question, such as, "Is there any person in the household
    who is disabled?" is asked sometimes followed by one or two other
    questions to determine the kind of disability. The problems posed by
    this type of question regarding the interpretation of the term
    "disabled" and the sensitivities concerning disability are well
    known to result in under-reporting of the disabled population,
    particularly of those suffering from mental conditions and lesser
    physical impairments.

6.  Because of lack of adequate statistical data on disability, policy
    makers often have to depend on administrative registers as the
    principal source. As these were not established for statistical
    purposes but for providing disability pensions or assistive tools,
    their coverage is incomplete and often limited to one type of
    disability. Moreover, essential socio-economic correlates of the
    disabled persons needed for well-informed policy are usually not
    part of the registers.

7.  Finally, because most countries have used national standards and
    methodologies it is not really possible to compare data and draw
    conclusions about differences or similarities. Even time series
    comparisons within the same country often show implausible
    variations in disability between census rounds. The above state of
    affairs underlines the need for providing training in disability
    concepts and methodologies and in adapting international standards
    for national usage.

## B. ESCAP forum for improving disability statistics

8.  In view of the need to develop national capacities in disability
    statistics, ESCAP held a four-day regional Workshop on Improving
    Disability Data for Policy Use in Bangkok, 23-26 September 2003. As
    part of the meeting preparation, the Statistics Division undertook a
    survey of the major disability sources in 16 countries in the
    region, which confirmed the conclusions in the above section.
    According to the unstandardized data, disability prevalence among
    the 16 countries, varied from less than one per cent to above 18,
    which clearly is epidemiologically implausible. The meeting
    confirmed that lack of knowledge and the use of inappropriate
    methods undoubtedly are the main reasons for this vast variation in
    disability prevalence among countries in the region.

9.  The participants at the Workshop recommended that ESCAP establish a
    disability statistics forum to assist countries to promote the
    implementation of ICF and to develop a set of protocols based on
    good practice, for use in the development, collection, analysis and
    dissemination of disability data. WHO, UNSD, who participated in the
    workshop, were asked to provide input and support to the forum and
    its work. The meeting further recommended that the
    terms-of-reference of the forum should be to work out an action plan
    consisting of four components: a strategy for awareness building and
    promotion of ICF in countries; development of training tools in the
    use of international standards for producers of disability data;
    development and testing of a standard set of disability questions
    for a survey and/or census instrument; design of an implementation
    plan for the ICF strategy and its implications.

10. Following these recommendations ESCAP has developed a two-year
    project and together with participating countries will carry out the
    above action plan. The project will be funded by the Republic of
    Korea and will be launched in May 2004 with a five-day meeting for
    participating countries. The target groups for the project are
    statisticians and health professionals involved in disability data
    collection. ESCAP's training branch for official statistics, the
    Statistical Institute for Asia and the Pacific (SIAP), will also be
    involved in developing the training materials and will ensure the
    sustainability by incorporating a course in disability statistics
    into its curriculum.

11. To the extent possible, during the two-year project time frame,
    empirical testing of the components would be carried out in a subset
    of participating countries. The objective of the action plan is that
    the four components would become a fully tested implementation
    framework with tools, ready to be applied and used by other
    countries in the region wanting to improve their disability data.
    The expected outcome for the participating countries is an improved
    disability information system which can provide reliable information
    and assist government in designing policies and determine the
    priority actions to take. Such a system is essential to promote
    integration of disabled people into society.

## C. Special concerns with regards to WCG

12. The stated objectives of the Washington City Group (WCG), to develop
    a common measure of disability or a set of measures to facilitate
    the comparison of data on disability across countries, are closely
    aligned with the goals of the Biwako Millennium Framework and with
    ESCAP's project and capacity building work in member countries. The
    strategy of the ESCAP project specifically includes the development
    and testing of some ICF-based disability measure, which can become a
    standard for participating countries to use in their data
    collections. The work of the WCG is therefore of direct relevance to
    the ESCAP project and offers opportunity for synergies for both
    sides, which should be explored through close cooperation and
    communication.

13. In formulating its strategic plan at the third meeting, the WCG is
    asked to take into consideration the work which has begun in the
    Asia-Pacific region and to give input to it by participating in the
    forum and sharing its experiences. Since part of the project will
    focus on the operationalization of disability concepts and piloting
    these in the countries, it could be an opportunity for applying the
    work of the WCG and empirically testing some of the measures
    developed. It would therefore be opportune if the methodological
    work on a standard measure or set of measures could be speeded up
    for preliminary testing in 2004.

[^1]: ESCAP is one of the United Nations five regional commissions. It
    is the largest of the commissions (58 member countries) and covers
    the most populous region of the world 3.8 billion, it is also the
    most diverse region and includes both some of the most and least
    developed countries.