Report on Workshop on Improving Disability Data for
Policy Use
23-26 September 2003
Bangkok, Thailand
STAT/WIDPU/Rep.
26 September 2003
ENGLISH ONLY
UNITED NATIONS ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC
Report on Workshop on Improving Disability Data for Policy Use
CONTENTS
- Workshop Recommendations
- Workshop Programme and Procedures
- Attendance and opening
- Objectives of the Workshop
- Expected outcome
- Workshop programme
- Summary of presentations and discussions
- Overview of disability data and work
- Introduction to ICF
- Country applications of ICF
- Conclusions of the two working groups
- Meeting policy needs for disability data
- Data collection issues in disability
- Report on the Washington Group on Disability Measurement
- Panel on the development of disability questions
- ANNEXES
1. The Workshop on Improving Disability Data for Policy Use was organized and
sponsored by the Statistics Division (SD) and the Emerging Social Issues Division (ESID)
of the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP).
It was held in Bangkok, Thailand, from 23 to 26 September 2003. The workshop was conducted
within the framework of the Biwako Millennium Framework for Action towards an Inclusive,
Barrier-free and Rights-based Society for Persons with Disabilities in Asia and the
Pacific (BMF). The Workshop made the following recommendations:
1. Governments in the UNESCAP region are encouraged to:
(a) Take action to (i) implement BMF recommendations relating to disability data
requirements, particularly through collection of disability data on a regular basis for
better policy formulation and (ii) strengthen the participation of disabled persons in
mainstream society and in the development process, and in the regular monitoring of
progress towards BMF targets.
(b) Allocate adequate resources to ensure regular and improved disability data
collection, analysis and dissemination, especially in countries where there are no
disability data, for example, Afghanistan.
(c) Initiate implementation of the WHO International Classification of Functioning,
Disability and Health (ICF) as a framework for conceptualizing and measuring health and
disability, to provide a common framework for use in national health and disability
information systems.
(d) Designate a focal agency to assume responsibility for the coordination of
disability data collection, analysis and dissemination, in close consultation with
government ministries and agencies, institutions, disability organizations, and other
stakeholders. The focal agency should establish a forum to hold continuous dialogue
between producers and users of disability statistics.
(e) Promote awareness building and inform stakeholders about the concepts of ICF
and its possible policy implications, and request WHO for technical assistance and support
in disability data collection and analysis consistent with the ICF.
2. Agencies responsible for data collection in countries should:
(a) Collect and disseminate in accessible formats adequate information about
persons with disabilities to support the policy needs of the country.
(b) Initiate action to implement the WHO International Classification of
Functioning, Disability and Health (ICF) as a framework for collecting, processing and
disseminating disability statistics, so as to provide common definitions and terminology,
as well as improved data comparability nationally and internationally.
(c) Encourage education of staff in ICF concepts and applications, for example,
by sending them to available training courses or self-study.
(d) Use the upcoming census round to collect information on disability, following
the UN recommendations as closely as possible in the formulation of questions concerning
disability, and taking into account ICF definitions.
(e) Take account where appropriate of the following principles in the design and
conduct of disability related surveys and censuses:
(i) Disability is a result of dynamic interaction between individual and
environment. Disability should be placed on a continuum with health and defined as a
decrement in health, which comprises impairments in body functions and structures,
activity limitations, and participation restrictions.
(ii) Disability questions should start off with questions on activity and
participation domains, followed by a branching structure with questions on impairments in
body functions and structures and questions on environmental facilitators and barriers.
(iii) Particular attention should be given to identifying sensitive and specific
disability screening questions and to develop response scales and question phrasing
consistent with the ICF.
(f) Involve stakeholders in the process of developing data collection instruments
to measure disability and in various activities in the planning process to collect,
compile and disseminate data on disability. Stakeholders should include government
institutions responsible for policy formulation and implementation on disability matters,
producers of the data, persons with disabilities and their associates, disability
non-governmental organizations, as well as researchers. The participation and
inclusion of persons with disabilities in the user/producer dialogue is highly
recommended.
(g) Ensure data quality through use of appropriate statistical techniques such
as:
(i) Survey testing and validation;
(ii) Training of interviewers in disability-sensitive techniques to elicit
information from respondents with disabilities.
3. UNESCAP and SIAP should:
(a) In collaboration with WHO, organize training courses in the use of ICF as a
framework for disability information and to enhance statistical competency and
comparability in disability statistics.
(b) Make sure that training courses in ICF are offered in subregions of UNESCAP
and include both producers and users of disability statistics, so that a sustainable
number of resource persons and trainers with expertise in ICF are locally available in the
region.
(c) Constitute a disability statistics forum to provide regional impetus to the
fulfilment of BMF recommendations on disability data collection and use. The
objective of this forum should be to promote the implementation of the ICF and to develop
a set of protocols, based on good practice, for use in the development, collection and
analysis of disability data.
(d) In collaboration with WHO, the Washington Group on Disability Measurement and
other interested parties, embark on an action plan for implementing the ICF as a framework
in disability statistics. The action plan consists of the following components for
consideration in UNESCAP countries:
- building awareness and promoting the ICF at national and sub-national level;
- developing, testing and piloting ICF based disability survey questionnaires, census
questions and other instruments for UNESCAP countries;
- outlining policy implementation strategies and implications for ICF based disability
data;
- developing ICF training tools for use by producers of disability statistics;
- establishing a working group of interested countries to plan and coordinate the
implementation of the action plan;
- providing an electronic platform for the exchange of information on progress on issues
concerning disability statistics in the UNESCAP region.
(e) Continue to promote the implementation of the recommendations of the BMF
concerning disability statistics and the use of a common definition of disability to
support policy-making and programme planning, and for that purpose allocate the necessary
resources.
(f) Encourage and assist members and associate members to incorporate the targets
of the BMF in the data collection and analyses required to assess the achievement of the
goals incorporated in the Millennium Declaration.
(g) Collaborate closely in the implementation of these recommendations with key
stakeholders such as UN bodies and agencies, the Washington Group, the Asia Pacific
Development Center on Disability (APCD), and disability NGOs.
(h) Mobilize and channel technical and financial assistance from international
organizations and other sources to UNESCAP countries in implementing ICF.
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2. The Workshop was attended by statisticians from national statistical offices
and officials from government ministries responsible for policies on disability matters as
well as representatives from civil society. Participants came from 16 countries and
territories, namely, Afghanistan; Australia; Brunei Darussalam; Cambodia; China; Fiji;
Hong Kong, China; India; Indonesia; Islamic Republic of Iran; Kyrgyzstan; Macao, China;
Malaysia; Philippines; Thailand and Viet Nam. There were also participants from
various agencies and organizations, among them FAO, ILO, UNESCO, UNSD and WHO. The
Workshop was also attended by experts from Asia-Pacific Development Center on Disability,
Australian Institute of Health and Welfare, the Cambodian Disability Action Council, China
Disabled Persons Federation, Fiji Disabled Persons Association, India Ali Yavar Jung
National Institute for the Hearing Handicapped, Philippine National Council for the
Welfare of Disabled Persons, Pakistan Population Council and the National Rehabilitation
Center for Persons with Disabilities of Japan.
3. Opening the meeting, the Deputy Executive Secretary of UNESCAP welcomed all
the participants to Bangkok. She spoke about the dearth of reliable statistics and
information on disabled persons and their needs. The importance of bringing together users
and producers of disability statistics from the different countries to promote
communication and the exchange of experiences was also stressed. The involvement of as
many stakeholders as possible in the planning process is key to ensure that the data
collected are useful and serve policy makers and the disabled persons. The importance of
reliable data on disability was also stressed, as this is the only way Government can come
up with any meaningful programmes for persons with disabilities. Lack of reliable data was
identified as a critical bottleneck to effective planning and development, particularly in
the area of disability. The need to have a common language and framework for all actors in
the disability field was crucial for communication and for planning and providing services
to those most in need. She therefore welcomed the focus of the meeting on measurement and
on the ICF as an overall framework for disability assessment and statistics. She
reminded the meeting that one of the strategies defined in the BMF to achieve the targets
was to improve measurement of disability and to use common definitions. She therefore
encouraged the meeting to outline a roadmap for implementing the ICF in the region as soon
as possible and offered UNESCAP’s support in this.
4. The overall objective of the Workshop was to strengthen national capabilities
to produce data on disability which could be used for policy development and
implementation of national strategies to improve the lives of disabled people. To achieve
this objective, the Workshop brought together producers and users of disability statistics
to promote understanding of data collection issues and to encourage the use of standard
definitions of disability for improved communication and comparisons.The specific
objectives of the Workshop were to:
- Provide information on standard disability concepts, definitions, classifications and
methods to improve disability measurement in the region;
- Introduce the new International Classification of Functioning, Disability and Health
(ICF) of the World Health Organization;
- Enhance mutual understanding among producers and users of disability statistics on the
need for policy relevant data and the possibilities for collecting these data;
- Inform about important international disability initiatives which are of relevance to
this region;
- Formulate a set of recommendations that can lead to the development of a regional
framework for action for improving disability statistics and measures in the region during
the 2003-2012 decade.
5. The expected outcomes of the meeting for participants are:
- That participants from national statistical offices and data users from relevant
government ministries and NGOs will be better able to measure disability and understand
measurement issues, to identify disability data needs and use the ICF concepts and
definitions;
- That they will have acquired a deeper understanding of the importance of using a common
language and of issues related to data comparability and use of the ICF as a unifying
conceptual framework for collecting and classifying disability data;
- That the opportunity for sharing national experiences in this field will have raised
awareness of better practices for disability measurement and will have created new ideas
for more policy related data.
6. As part of the preparation for the Workshop, participants from statistical
offices were asked to reply to two questionnaires regarding disability collection tools
and participants from the user side were asked to prepare country reports on policy
needs. A set of the country reports and questionnaires was distributed at the
workshop and the information was used by the secretariat to prepare an overview
presentation for the meeting which provided insights into the problems and concerns with
the current state of disability statistics in the region.
7. Finally, the participants at the workshop produced a set of recommendations on
future work to improve the measurement of disability in the ESCAP region. The
recommendations were developed by the workshop participants, who are expected to form the
nucleus of a network of experts in the region.
8. The main topics in the workshop were as follows:
- Overview of disability data in the region
- Collecting disability data through different tools
- International Classification of Functioning, Disability and Health (ICF)
- Meeting policy needs for disability data
- Selected issues to improve measurement of disability
9. The workshop reference materials and papers are available through the UNESCAP
website at the following address: http://www.worldenable.net/escapstats/
. Participants at the workshop were given a copy of theInternational Classification of
Functioning, Disability and Health (ICF), and a CD-ROM containing all the proceedings was
sent to all participants after the meeting.
10. The workshop was structured into plenary sessions with presentations and
panel discussions. It broke into two working groups for more detailed discussions and for
formulating recommendations. During plenary sessions, topics were introduced by different
presenters and each session had a different person moderating and chairing. The panels
served to communicate ideas and viewpoints and were made up of participating countries and
organizations. The workshop provided ample opportunity for the exchange of experience
among participants, for creativity and networking. A Rapporteur from the Philippines
assisted the secretariat in preparing the meeting report and a Drafting Committee,
consisting of Australia; Hong Kong China; Philippines; UNSD; WHO and the secretariat
drafted the meeting recommendations.
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11. The United Nations Statistics Division (UNSD) reported on the objectives of
their work on disability statistics which are: to prepare methodological guidelines; to
promote and improve the collection of disability data; and to improve use of existing
data. In order to meet these goals, the UN maintains a global disability database
– DISTAT-2 – with basic disability information gathered from each country’s
survey or census. The data, however, is not comparable across countries due to
differences in definitions, classifications, survey methodologies and designs. The
data comparability issues are mainly of two kinds: one is a conceptual problem due to
definitional differences between studies and the other is related to measurement issues.
Many issues concerning data comparability were also raised in the discussion which
followed the presentation and there was general agreement that only through some
standardization of definitions, classifications and questions could this be
solved. The UN publication Guidelines and Principles for the Development of
Disability Statistics discusses many comparability issues in detail and
recommends application of the ICF concepts and framework.
12. Another important area of UNSD’s work is the global census
recommendations which include disability as a topic that may be investigated in a
census. The meeting was reminded about the need to incorporate disability questions
in the census and as a first step the UN guidelines concerning the formulation of census
questions could be followed.
13. An overview of disability data in the Asia & Pacific Region was given by
the secretariat. The presentation was based on replies to a survey inquiring about
disability data collected in censuses, surveys, and administrative registers. The overview
showed that censuses were the most common source of information on disability in the
region. Because censuses are infrequently done, and do not allow for more than a few
questions on disabilities, more and more countries have begun to conduct surveys in
addition to the census collection to measure better their disabled population and their
needs. Most countries use national definitions of disability and apply a medical rather
than a social model, which seems to capture only the most severely disabled. A couple of
countries, however, have begun to apply the ICF concepts in some of their collections.
Administrative registers often contain detailed information about the person covered but
cannot usually be used for statistical purposes because the coverage is not
complete. This is due to self-selection and the fact that many registers are
restricted to one type of disability and therefore only represent one slice of the
disabled population.
14. The Australian Bureau of Statistics (ABS) reported on the various sources of
disability data they have and the efforts made by ABS to align its data collections to the
ICF concepts. Disability surveys had been carried out roughly every five years over the
last twenty years starting from 1981 and constituted the main source of data on
disability. The survey questionnaire was administered for a sample of households and care
institutions through face-to-face interviews and computer-assisted methods. In addition,
ABS also included disability modules in other types of surveys related to education or
expenditure, e.g., General Social Survey 2002. The population census was also used to
collect disability data and was particularly useful for providing other demographic and
social characteristics of the disabled population. However, designing census questions
that captures everyone with a disability is not easy and they were not satisfied with the
results obtained in previous censuses. Therefore, in the forthcoming Census in 2006, ABS
was shifting to ‘a needs for assistance with __ approach’ in designing census
questions. Concurrent with its efforts to improve questionnaires, ABS also tried to make
sure that statistics are comparable over time.
15. The need for involving users and all stakeholders in the decisions of
what information to collect was raised in the discussion. The meeting was told that ABS
has Consultative Committees for all their different surveys which are involved in
determining the issues to be covered and the information to be collected. The periodicity
of disability surveys was also raised and the participants agreed that this should be
determined by data needs and the resources available to conduct such surveys.
16. The presentation of the representative from the Philippines statistical
office focused on the disability module from their 2000 Population and Housing Census.
Consultation had been made through a public hearing forum which represented various
stakeholders, including the National Council for the Welfare of Disabled Persons. The
census uses a WHO definition of disability but the two basic questions asked to identify
persons with disabilities: "Does __ have any physical or mental disability?";
"What type of disability does __ have?" were not based on the ICF concepts.
According to the census results the disability prevalence rate in the Philippines was less
than 2 per cent, far below the WHO/UN estimate. In spite of extensive procedures to
improve the collection and quality of the data, disability data were affected by a number
of weaknesses, in particular the difficulty in operationalizing the definition of
disability and limited resources for testing this.
17. The subsequent discussion revealed that underreporting was common to other
countries in the region. As most censuses only can include a couple of questions to
identify the disabled population, it was crucial to get the wording of these right. The
use of the word 'disabled/disability' in most cultures of the region has negative
connotations and should be avoided in the screening question. It was noted that education
of interviewees could help but not eliminate this constraint.
18. The representative from the International Labour Organisation (ILO) informed
the meeting about one of their recent initiatives to improve employment opportunities for
persons with disabilities (PWD). The initiative was related to the underlying need for
statistics that cross-classify aspects of disability and employment. ILO has therefore
undertaken a survey of its member countries to find out what data are collected in
countries on the employment of disabled persons. As part of the initiative, ILO has
carried out an analysis of the methodologies used by countries to compile these
statistics. Out of 219 countries that received the questionnaire, more than 100 have
replied, and an in-depth analysis of national practices and methodologies was currently
being made. The participants were informed that the 17th International
Conference of Labour Statisticians (24 Nov.-3 Dec. 2003, Geneva) would discuss the first
results of this survey.
19. During the discussion some participants raised concerns that conventional
national data collection, e.g. census, labour force surveys (LFS) etc., might not capture
properly the employment status of the disabled. It was proposed that other approaches and
instruments could be adopted - for instance, time-use surveys, area-based diagnosis
approach, surveys of both employees and employers as well as surveys on the informal
sector where many disabled were found to be working. One country suggested that a Human
Development Index specific to disabled persons could be compiled to monitor and assess the
implementation of national policies on disability.
20. The presenter from the United Nations Education, Science and Culture
Organisation (UNESCO) introduced the Education for All (EFA) strategy they had launched
which had a module aiming to reach the most neglected groups, in particular disabled
children at schooling ages. A UNICEF study found that in a majority of countries in
Asia and the Pacific region, less than 10 per cent of children with disabilities were
enrolled in school, and in some countries the rate was as low as 1-2 per cent. In order to
remedy this situation, UNESCO was promoting the inclusion of children with specific needs
in the process of overall monitoring and evaluation for national education polices. One of
the initiatives to this end was the insertion of a 'special needs' module into
annual school surveys and other forms of educational surveys. UNESCO
encouraged the application of the ICF framework in these surveys.
21. During the discussion, the importance of identifying children with
disabilities outside school age was also raised. It was proposed to expand the definition
of early child education to cover the age interval of 0-6, since education at the earliest
ages was instrumental in developing basic capacities and detecting disabilities in the
area of speech, hearing and sight. In this area of early childhood development, there was
scope for strengthening partnership and coordination among various players including
UNESCO, UNICEF and WHO.
22. The representative from WHO pointed out the factors which had led to the
development of the ICF and its adoption at the 54th World Health Assembly in 2001. The
lack of common definitions of disability and a common language among those working in the
disability field are major problems, other contributing factors were the limited focus and
coverage of many data sources as well as the lack of linkage between disability and health
surveys. With the ICF framework, it is possible to identify those in need of
assistance; judge the effectiveness of interventions (education, treatment,
rehabilitation, assistance, prevention); and capture not just traditional notions of
disability but also disabilities associated with mental illnesses and other neurological
disorders such as Alzheimer’s disease and Epilepsy. Disability is a major
factor in health provision and costs as reflected by the 500 million healthy person years
lost annually due to disability.
23. WHO noted that the new ICF is more encompassing and multidimensional than its
predecessor, the ICIDH. Placing disability on a continuum with health and defining it as a
decrement in health recognizes that everyone may one day experience some disability.
Consequently, the model changes from one concerned with a minority population to one of
universal concern that bridges the medical (impairment, care) and social (human rights,
environment, social integration) models. Disability is both a personal and societal
problem and ICF addresses disability from both the malfunctions of the body and the impact
it has on a person’s daily activities. Moreover, the ICF framework incorporates
the equity and non-discrimination principle because it treats similarly all disabilities
(for example, loss of limb) regardless of reason or cause (for example, landmines,
diabetes, thalidomide). Participants were further told that ICF is based on
scientific principles and has undergone extensive testing for seven years (it was
cross-culturally field tested in 61 countries in 27 languages). For more details the
participants were encouraged to consult the WHO website: www.who.int/classification/icf .
24. In the ensuing discussion the difficulties of reporting on disabilities
associated with psychiatric disorders, particularly for interviewers without medical
training were raised. These illnesses are always under-reported; WHO is well aware of the
problem and is in the process of developing an ICF-in-a-box to help countries with this
and other related problem areas. WHO was also queried about the reaction of disabled
people’s organizations to the ICF. Since a number of the main organizations were
closely involved in the development of the ICF the response had been generally positive.
The way the ICF was built makes it very flexible and, according to emphasis and data
needs, one can decide on what domain to focus on.
25. Some participants expressed concern about the fact that data collections
based on the ICF concepts would capture even minor disability and therefore increase the
number of disabled persons. This could be politically sensitive for those governments who
give monetary compensation to disabled persons. The application of ICF might provide
data that could be used to put pressure on government services. However, there is
nothing in the ICF which refers to compensation for disabilities; countries with such
systems usually require a medical examination to determine the degree of disability and
can set the threshold as appropriate independently of the ICF. It was observed that in
democratic societies, statistical data are collected and used to give a truthful
description of society as it is, not as governments want it to be. The Fundamental
Principles of Official Statistics clearly state that it is not the government but the
statistical office, which determines the best methodology to use for collecting data.
26. The meeting was also informed about the multi-country World Health Survey,
which WHO began conducting in 2001, and which now has been carried out in more than 110
countries. The disability data is collected according to the ICF concepts and a
common set of questions with standardizations of severity (or adjustment for bias); it was
therefore possible to undertake cross-population comparisons.
27. Participants received further explanation about the ICF via a live video link
with staff from WHO headquarters in Geneva. The presentation focused on design and
implementation of disability surveys using the ICF framework. WHO representatives
outlined how the ICF is holistic and multidimensional, covers multiple categories and
conditions, assesses either the capacity or performance, and is linked to health through
the International Classification of Diseases (ICD-10) which shares the same domains and
dimensions.
28. Based on WHO’s and country experiences, the WHO representatives gave a
pragmatic view of how to apply the ICF for collecting statistics, including how to
formulate questions for surveys and censuses. They recommended that an ICF based
disability survey questionnaire should have 4-5 screening questions followed by a set of
more detailed questions, usually between 8 and 30. These should focus on activity and
participation domains using, for the total sample population, the WHO Disability
Assessment Schedule (WHO-DAS II Short version - 12 questions). The remaining 24 WHO-DAS II
questions could only be applied to a sub-set of the population. Furthermore the
questionnaire should have a branching structure for questions on impairments and
environmental factors. To the extent possible, additional information should be
recorded on the health condition, assistance needed, environmental and personal factors.
Questions should have a five-point response scale linked to ICF coding.
29. This overview specifically highlighted flexibility in the system to suit user
convenience and cautioned about the design and sampling errors that might affect the
outcome. Usage of the ICF qualitative five point scale to grade severity in various
domains and dimensions was also discussed. Use of screening questions, their
sensitivity, specificity, reliability, validity and cross-population comparability were
important factors in all statistical data collections. WHO offered assistance to
countries willing to look into their existing primary data in the context of ICF. It
was suggested that countries should plan to conduct benchmarking surveys at the beginning
and the end of the BMF decade to assess progress on its implementation.
30. To ensure data quality, screening questions must have the ability to pick up
positive cases (sensitivity) and the ability to differentiate true from false cases
(specificity). All questions should have good performance in terms of stability of the
response (reliability), ability to report true cases (validity) and adjustment for
self-report biases by known covariates (cross-population comparability).
31. The Australian Institute of Health and Welfare (AIHW) described how they had
produced an ICF Users’ Manual as a guide to those wanting to apply the ICF concepts
and as a complement to the ICF. The ICF is utilized for many purposes in Australia
and serves both as a standardization tool for those working in disability, a
measurement instrument and a mapping tool. The manual, among other things, gives
advice on getting started and educates users on qualifiers for activities and
participation. Together with the national data dictionary which also makes use of the ICF
framework for a wide range of data, it contributes towards achieving the goal of national
consistency in disability and health data.
32. The AIHW has used the ICF to develop a support needs framework for service
data collection; this relates to existing assessment and data standards and practice in
the field. In Australia different groups of health practitioners have applied the
ICF framework for specific areas of health research (pathology, Rett syndrome, oral
health, etc.) but it has also been used for accident injuries and for developing a
disability athletics classification.
33. A representative from the Indonesian National Institute of Health Research
& Development presented their country’s experience in using the ICF framework in
the 2001 Health Survey (Surkesnas). A multistage sampling design was used which gave
a total universe of 6272 households or more than 28 000 respondents. Indonesia has
conducted Community Based Morbidity and Disability collections since 1986 and used the
ICIDH in 1995 in one of their surveys. The results from this large survey (65 000
households) were used to calculate national disease burdens. The 2001 survey was the first
to introduce the ICF concepts and covered 8 sections on body functions, body structures
and activities and participation, but did not cover the environment domain. The fact
that the Indonesian survey combined disability with morbidity, including a physical
examination, contributed to very high prevalence rates for problems in body functions and
body structures.
34. In Thailand, the first application of the ICF is being undertaken by the
Sirindhorn National Medical Rehabilitation Centre, where the ICF concepts are being
implemented in its disability measurement and analysis. The project, which is quite
recent, covers the development of a national disability database based on the new
ICF concepts. The project involved different stakeholders, such as health professionals,
service providers, statisticians and policy makers. A series of workshops has been
organized to increase understanding of the ICF among those involved and to share
experience after the application of the new concepts.
35. Having received a rather extensive briefing on the ICF framework and its
application, the meeting broke into two working groups to debate i) how disability data
related to policy and how ICF fitted into the equation ii) which ICF domains were the most
useful for disability statistics and for capturing the disability experience? Group 1 felt
that the link to policy is close in a number of areas notably: in physical and vocational
rehabilitation, education, housing services and the creation of a barrier-free
environment. Most countries, however, felt that the currently available information
was inadequate for policy demand. Group 2 considered that the ICF was the best tool to use
because of its holistic and flexible approach. Training, however, would have to be
given at the country level. It was concluded that although the activity and participation
approach was seen as the most appropriate there is also a need for some impairment
information. Three domains, communication, mobility and self-care, were considered
to be extremely important to measure the everyday core functions. Environmental factors
also had to be included in the measurements to assess how they impact on the
disability. The detailed conclusions of the two working groups, as presented to the
meeting, can be found in Annex 2.
36. At the discussion which followed the two presentations, several participants
emphasized the need to strengthen regional cooperation. Despite differences in development
level, it was felt that each country in the region has experiences and practices that can
be fruitfully shared with others. Workshops of this kind were found very useful to expand
knowledge and to build networks of experts. The participants recognized that
socio-cultural norms and diversity of nations constituted another important parameter that
hinders good quality and comparability of disability data and ICF provided a suitable tool
for overcoming these obstacles. It was stressed that an ICF promotion process would have
to be carried out at the country level to convince stakeholders of its utility before it
could hope to be widely applied. There was agreement that ICF provided a holistic
framework and the environmental aspect helped to shift emphasis from capacity to a
performance-based approach which offered a useful platform for policy interventions.
37. Based on these conclusions, the meeting discussed an action plan/roadmap for
the implementation of ICF as a framework for disability and for harmonizing disability
measurement in the region. A plan consisting of three phases, namely planning,
methodology and pilot testing, was discussed. It was felt though that prior to the
first phase it would be necessary to conduct a promotion campaign for the ICF directed
towards major stakeholders. Similarly, it was also considered important to ensure that the
methodology built on all available work of the major international players, including that
of the Washington Group. Assuming that the action plan should serve as a guideline
for other countries in the region, it would be advisable to carry out smaller area
piloting of the instruments before generalizing them. Several countries, like Fiji,
who were planning to carry out a disability survey as part of their ongoing surveys in the
coming years, expressed interest in participating in a regional task force to elaborate an
action plan for the implementation of the ICF.
38. The secretariat introduced the meeting to the Biwako Millennium Framework for
Action towards an Inclusive, Barrier-free and Rights-based Society for Persons with
Disabilities in Asia and the Pacific. The Framework, adopted in 2002, contains 21
specific targets in seven priority areas. It also contains 17 strategies for
achieving the targets. Two of the strategies refer specifically to the need for
improved statistics on disability. One strategy encourages Governments to develop,
by 2005, their system for disability-related data collection and analysis and to produce
relevant statistics disaggregated by type of disability. Another strategy encourages
Governments to adopt, by 2005, standardized definitions on disability based on United
Nations recommendations. The discussion on the Framework emphasized that good
quality data were essential for policy formulation and programme planning. It was
also noted that the goals of the Framework applied to all countries in the region.
39. The Workshop conducted a panel discussion on users’ perspectives on
disability data for policy needs. Panel members were representatives of the China
Disabled Persons’ Federation; the Fiji Disabled People’s Association; the Social
Welfare Institute of Macao, China; and the Asia-Pacific Development Center on
Disability. The panel emphasized that, although some statistics on disability were
generally available, they often had several shortcomings. Disability data were
collected by population censuses, household surveys and administrative records. The
definitions employed and coverage of the population often varied greatly among the
different data sources. Definitions were usually based on a few major types of
disability, but not on body functions, activities or environmental factors. In this
regard, the panelists welcomed the application of ICF in data collection, analysis and
utilization, and requested assistance in learning about and applying ICF. The
panelists stressed that survey instruments and procedures should be accessible by persons
with disabilities so that they would be fully and accurately included in disability
data. The result of data collection and compilation should also be presented in
formats accessible to persons with disabilities. The panel emphasized that good
quality disability data were required for planning and implementation of projects and for
resource mobilization.
40. The discussion which took place on data needs of policy concluded that
cross-cutting multi-sectoral collaboration is required to promote progress towards
implementing the ICF. In this regard, a national coordination committee or mechanism
on disability, where existing in a given country, should be effectively utilized; this is
particularly important as data may be collected and compiled by different agencies and
ministries. A roadmap for the wider application of the ICF will require an intensive
consultation process with all the various stakeholders, including disabled people’s
groups, NGOs and other major users. It was also stated that policy makers are
demanding users as they require comprehensive disability data, including prevalence in
different socio-economic categories.
41. The Australian Bureau of Statistics (ABS) briefed the meeting on how ICF was
used to collect disability data in Australia. Data on ICF components were collected in
principle through disability surveys and disability modules integrated into other forms of
surveys. The 2006 census would also gather limited information concerning a few aspects of
activity and participation restrictions at home, at work or school and in community life.
42. As ABS already had a disability data collection before the application of
ICF, they had aligned existing questions to the ICF framework by mapping these out
against the various components. Of key importance was the formulation of the questions so
as to avoid sensitive terms, such as impairment, disability and handicap, in order to get
better coverage and more accurate replies. In ABS’s experience the operationalizing
of the concept and definition of disability needed to be based on an understanding of the
ICF and identify the broad survey approach which would cover users’ needs. In
general, estimates of disability prevalence vary according to type and mode of collection
used. Disability rates were higher in collections using the ICF approach because of
its non-impairment focus; rates would be lower in self-completion forms and when proxies
rather then the disabled persons were interviewed. The presentation also focused on
detailed aspects of disability surveys, starting from identifying user needs to deciding
survey output, considering scope and coverage issues, identifying the population or
sub-population of interest, designing questions, testing and validation, etc. The
participants were informed that each of the different data collection activities were
followed by an evaluation process to compile the feedback not only from the user community
but also from the staff who participated in the survey.
43. In the ensuing discussions, the participants were informed that ABS was using
the same interviewers for disability surveys as for their other surveys, all of whom had
undergone training in a three-day programme. Further questions concerned the survey budget
and participants were told that some 30 per cent of this was earmarked for survey content
development and close to 20 per cent for output validation afterwards. The need for
continuity and innovation was always a balance that often could be managed with different
compilation of the data. Sometimes, however, data comparability had to be sacrificed
for better quality data.
44. The representative of the UNSD reported on the work of the Washington Group.
The participants were informed that the Group was an informal forum to address the lack of
standard measures and methodologies in disability statistics. The Group has met twice
since its formation in 2001, and uses the ICF model as a framework for developing standard
disability measures. The disability measurement matrix was introduced as an appropriate
tool to guide the choice of measures in accordance with the purpose of the data
collection. Depending on whether the purpose is related to service provision, monitoring
population or equalization of opportunities, questions can be devised in a different
manner to answer different policy questions. The presenter also drew the attention of the
participants to the next meeting of the Washington Group, planned to take place in
December 2003. As the group was a global forum, it was important that the views expressed
at this meeting and its report should be fed into the upcoming meeting. As the Statistics
Division of UNESCAP had already been invited to be part of the organizing committee for
the Washington Group, it would be able to ensure that the report of this meeting received
the Group’s full attention.
45. The workshop conducted a panel discussion on developing disability questions
and interviewing persons with disabilities. The panel members were representatives from
the Central Statistical Organisation of India; Fiji Islands Bureau of Statistics; the
Asia-Pacific Development Center on Disability (APCD) and the Population Council from
Pakistan. The panel members recognized that the ICF provided a good tool for
standardization of concepts and methodologies concerning disability data collection. The
representative of India mentioned that their National Sample Survey Organization has been
conducting surveys of disabled persons at an interval of about ten years. India has also
collected, in its 2001 Population Census, data on five types of disabilities, namely
visual, hearing, speech, mental and movement.
46. The representative of Fiji informed the Workshop that the 1996 Population
Census was the first-ever Fijian census where questions related to disability were
asked. However, owing to the fact that priority was given to other characteristics,
the questions on disability were not analysed until recently, when a Canadian professor
used the data. As they planned to undertake a disability specific survey in the near
future, the timing of the present workshop was opportune. The meeting was also
informed about the 1998 Population Census in Pakistan which also included questions on
disability. Unfortunately, the results of the Census showed a big variation in the number
of disabled persons for each item of impairment when compared to the same data from the
1981 Census. The reasons for the variations were being investigated, but it became more
and more obvious that there is scope for improving the disability module in the census.
47. The representative of APCD emphasized the need to focus disability data
collection on specific target groups, (e.g. young women living in rural areas), in
conjunction with policy shifts. He also stressed the point that face-to-face
interviews should be preferred over all other means; similarly, proxy respondents should
be avoided to the extent possible to get more accurate data from the persons with
disabilities. He mentioned that the data on the education and employment of disabled
persons were of the utmost concerns to policy makers, and in order to meet data
requirements, the data collection systems should be monitored by the users themselves.
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ANNEX 1 Agenda of Workshop
FOR PARTICIPANTS ONLY
26 September 2003
UNITED NATIONS ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC
Workshop on Improving Disability Data for Policy Use
23-26 September 2003
Bangkok
See WORK PROGRAMME
Working Group 1
(Rapporteur: Mr. R. Rangasayee)
The members of Group 1 actively deliberated upon the various questions and arrived at
consensus opinion, as follows:
Question 1: How does disability data relate to
policy?
Answer: Based on the disability data, policies related to following
activities are developed:
- Service programmes pertaining to physical restoration, education, vocational
rehabitation etc.
- Capacity building for manpower development.
- Allocation of budget.
- Seeking International assistance.
- Housing for people with disabilities.
- Creation of Barrier-free environment.
- Capacity building for production and/or supply of aids and appliances.
Question 1.1: To what extent does the information on disability currently
available in your country correspond to policy and other needs?
Answer: The response to this question was not uniform, as to be
expected. Some countries do not have census/survey done on disability. Most of
the countries felt that the information available is inadequate. Many countries have
developed policy(ies) based on the available information.
Where information is available, it is usually on major impairment categories and
not on activity/participation categories except in Australia and in some Indonesian data.
Question 1.2 In which Policy area is disability data used?
Answer: The disability data has been used in developing programmes
for persons with disabilities as given below:
- Early detection and intervention.
- Creation of medical and rehab services.
- Prevention of diseases known to cause disabilities.
- Creation of educational provisions.
- Creation of vocational training and economic rehab facilities.
- Providing institutionalized care.
- Housing
- Access
- Financial assistance
- Resource allocation
Question 1.3: Are Policy areas under review or new policy areas
considered and what are the implication for future information needs regarding disability
data?
Answer: As the people and governments are becoming increasingly sensitive
in solving the problems of persons with disabilities, the policies are under review in all
the countries.
The implications of future information needs regarding disability data are
as given below:
- Level of employment in which PWDs are placed.
- Marital needs.
- How disabled persons are placed as against non-disabled persons in different aspects of
social participation?
- Collection of data in the ICF format to formulate intervention at Community level rather
than creating institutionalized care.
- R & D in use of ICF.
- Uniform data base can be created through use of appropriate softwares.
Question 2: (a) How does ICF fit into the equation?
Answer: The ICF can fit in well with the equation with necessary
flexibility, if tools are made available to collect data.
(b) What do you think the added value of ICF framework in defining and meaning
disability?
Answer: The holistic approach of ICF and the inclusion of
environmental aspects are real strength of ICF.
Question 3 What do you see as the next steps for
implementing ICF framework in census, surveys and registers?
Answer:
- Training and promotion of ICF should be undertaken at country level. This is seen
as the next important steps in the implementation process of the ICF.
- An operational framework should be developed.
- Instruments to measure have to be developed/identified.
- Inclusion of ICF type questions in surveys and in censuses.
- ICF should be made available in local languages.
- Periodical/annual meetings on ICF should be held to share best practices.
- Collaborating centers need to be set-up.
- Each country should constitute a focus/advisory group involving all the stakeholders.
The group welcomed the ICF as a tool to augment the quality of life of persons with
disabilities, through appropriate country-wise planning and thrust.
Working Group 2
(Rapporteur: Ms. J. Hillermann)
The members of Group 2 actively deliberated upon the various questions and arrived at
consensus opinion, as follows:
Question 1: What ICF domains do you consider as most relevant for
use in disability statistics?
Background issues
- Many countries would like guidance from WHO about what are the most important domains to
cover and what should constitute a minimum dataset
- Discussion of qualifiers - capacity and performance. Agreed to focus on present
environment, including aids and equipment, so performance rather than capacity focus
- Need to determine the context and constraints of the data collection. Eg, census
vs small survey. Assume have small survey, like WHODAS II
Higher question - what components to use?
- Agreed that, overall, an Activity and Participation approach was best
- Acknowledged the importance of seeing disability as a continuum (and multidimensional)
- Supported broadening the criteria for inclusion in the disability population
But....
- There is also a need for some impairment based information, such as, the number of blind
and deaf people
- There are issues about severity of disability and where to put thresholds
Domains
- The three domains of Communication, Mobility and Self-care are considered very important
to measure
- They are everyday core functions (close to ADLs) and so any limitations in these
areas are likely to have a big impact on people
- The Major life areas domain, covering education, work and employment and economic life
is also important to measure
For children and youth
- Learning and applying knowledge and
- Interpersonal interactions and relationships are also very important
Environmental factors. Need to measure
- Use of aids and equipment (Products and technology)
- Support and relationships
- Services, systems and policies
- Attitudes are difficult to measure and have not been addressed well in surveys, but it
is important to assess perceptions of attitudes toward people with disabilities.
They are a barrier, and policy can influence behaviour and attitudes.
Question 2: Identify a minimum dataset that you feel would be the
most parsimonious set to capture the experience of disability, irrespective of the
etiology/health condition.
- Need broad agreement on the previous issues first!
- Go for the more difficult to measure Activity limitations and Participation restrictions
and then also some relatively easier to measure Impairments
- Include selected Environmental factors
- Severity measures (scale)
- Age of onset of disability
- Cause of disability (eg, had since birth, accident, outcome of disease etc, and possibly
also condition)
ANNEX 3 List of participants
See List of Participants with contact information
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