Workshop on Improving Disability Data for Policy Use
23-26 September 2003, Bangkok, Thailand

Report on Workshop on Improving Disability Data for Policy Use

23-26 September 2003
Bangkok, Thailand

Workshop Recommendations

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

1. Workshop   Recommendations
2. Workshop Programme and Procedures
   1. Attendance and opening
   2. Objectives of the Workshop
   3. Expected outcome
   4. Workshop programme
3. Summary of presentations and discussions
   1. Overview of disability data and work
   2. Introduction to ICF
   3. Country applications of ICF
   4. Conclusions of the two working groups
   5. Meeting policy needs for disability data
   6. Data collection issues in disability
   7. Report on the Washington Group on Disability Measurement
   8. Panel on the development of disability questions
4. ANNEXES
   • ANNEX 1 Agenda of Workshop
   • ANNEX 2 Conclusions of Working Groups
   • ANNEX 3 List of participants

I.  Workshop Recommendations

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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II.  Workshop PROGRAMME AND PROCEDURES

A.  Attendance and opening

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.

B.  Objectives of the Workshop

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:

1. Provide information on standard disability concepts, definitions, classifications and methods to improve disability measurement in the region;
2. Introduce the new International Classification of Functioning, Disability and Health (ICF) of the World Health Organization;
3. Enhance mutual understanding among producers and users of disability statistics on the need for policy relevant data and the possibilities for collecting these data;
4. Inform about important international disability initiatives which are of relevance to this region;
5. 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.

C.  Expected outcome

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.

D.  Workshop programme

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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III.   Summary of presentations and discussions

A.  Overview of disability data and work

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 17^th 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.

B.  Introduction to ICF

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).

C.  Country applications of ICF

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.

D.  Conclusions of the two working groups

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.

E.  Meeting policy needs for disability data

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.

F.  Data collection issues in disability

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.

G.  Report on the Washington Group on Disability Measurement

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.

H.  Panel on the development of disability questions

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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IV.  ANNEXES 

ANNEX 1  Agenda of Workshop

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

ANNEX 2  Conclusions of Working Groups

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)
  • Whether use
  • How impacts
• Support and relationships
  • Source of support
• Services, systems and policies
  • Availability
  • Source
• 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

UNITED NATIONS
ECONOMIC AND SOCIAL COMMISSION FOR ASIA AND THE PACIFIC

Workshop on Improving Disability Data for Policy Use
3-26 September 2003
Bangkok

LIST OF PARTICIPANTS

AFGHANISTAN

Mr Qaseem Wardak, IT and Data base Officer, Ministry of Martyrs and Disabled, Kabul

Mr Ziaullah Zia, General President of Census and Survey Department, Central Statistics Office, Kabul

AUSTRALIA

Ms Joanne Hillermann, Director, Family and Community Statistics, Australian Bureau of Statistics, Canberra

BRUNEI DARUSSALAM

Ms Raimah Mohamad, Senior Trainer/Instructor, Department of Community Development, Ministry of Culture, Youth and Sports, Bandar Seri Begawan

CAMBODIA

Mr Yem Suong, Director of Social Statistics Department, National Institute of Statistics, Ministry of Planning, Phnom Penh

CHINA

Ms Xiao Li, Deputy Director, Senior Statistician, Division of Social Statistics, Department of Population, Social, Science and Technology Statistics, National Bureau of Statistics, Beijing

FIJI

Ms Verenaisi Rokobale Sawana, Senior Statistician-Labour Force, Fiji Islands Bureau of Statistics, Suva

HONG KONG, CHINA

Mr Stephen King-leung Pang, Commissioner for Rehabilitation, Health, Welfare and Food Bureau,

INDIA

Mr Vaskar Saha, Additional Director General, Central Statistical OrganisationMinistry of Statistics and PI, New Delhi

INDONESIA

Mr Ibram Syahboedin, Head of Social Statistics Division, BPS-Statistics Indonesia Province Central Java, Semarang

Mr Halip Purnama, Head of Subdirectorate Health and Housing Statistics, BPS-Statistics Indonesia, Jakarta

Ms Julianty Pradono, Researcher, National Institute of Health Research & Development, Ministry of Health, Jakarta

ISLAMIC REPUBLIC OF IRAN

Mr Davood Abbasi, Expert of Social Statistics, Statistical Centre of Iran, Tehran

KYRGYZSTAN

Ms Asel Sabyrova, Main Specialist of International Cooperation Unit, National Statistical Committee of the Kyrgyz Republic, Bishkek

MACAO, CHINA

Ms Yee Ling Anna Chan, Social Worker, Division of Rehabilitation, Government of Macao Special Administrative Region Social Welfare Institute,

Ms Veng Si Tang, Government of Macao Special Administrative Region Social Welfare

MALAYSIA

Ms Siti Zakiah Muhamad Isa, Assistant Director, Population and Housing Census Division, Department of Statistics, Putrajaya

PHILIPPINES

Ms Amalia Sevilla, Statistician IV, Census Planning and Operations Division, National Statistics Office, Manila

THAILAND

Ms Nonglak Ngowiwatchai, Statistics Technical Officer, National Statistical Office, Ministry of Information and Communication Technology, Bangkok

Ms Pattariya Jarutat, Director, Sirindhorn National Medical Rehabilitation CenterDepartment of Medical Services, Nondhaburi

Ms Rossarin Gray, Institute for Population and Social Research, Mahidol University, Nakhon Pathom

Ms Pimpa Kachondham, Lecturer and Chairman of the MA Programme in Rehabilitation Services for Person with Disabilities, Ratchasuda College, Mahidol University, Nakhon Pathom

Ms Sunee Saisupatpon, Social Development Officer, Bureau of the Empowerment for Persons with Disabilities, Ministry of Social Development and Human Security, Bangkok

Ms Suntaree Puaves, Social Development Officer, Bureau of the Empowerment for Persons with Disabilities, Ministry of Social Development and Human Security, Bangkok

VIET NAM

Mr Nguyen Phong, Director, Social and Environment Statistics Department, General
Statistical Office, Hanoi

____________________

INVITED OBSERVERS

Mr Peter K. Wingfield-Digby, Statistical Consultant, Chiang Mai

Mr Rukanuddin A. Razzaque, Consultant, Population Council, Population Association of Pakistan, Islamabad

____________________

UNITED NATIONS SECRETARIAT

____________________

SPECIALIZED AGENCIES

____________________

OTHER ENTITIES

____________________

ESCAP SECRETARIAT

____________________

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