Training Manual on Disability Statistics

242 Pages·2009·1.667 MB·English

by  United Nations

WHO/ESCAP Training Manual on Disability Statistics

This publication was jointly prepared by

Department of Measurement and Health Information Systems
World Health Organization (WHO)

Statistics Division
United Nations Economic and Social Commission for Asia and the Pacific (ESCAP)

United Nations Statistical Institute for Asia and the Pacific
Subsidiary body of United Nations Economic and Social Commission for Asia and the
Pacific (ESCAP)

The views expressed in the Training Manual are those of the authors and do not
necessarily reflect the views and policies of the United Nations or the World Health
Organization. The Training Manual has been issued without formal editing.

Copyright © United Nations 2008
Printed in Bangkok
ST/ESCAP/2499
Sales No. E.08.II.F.16
ISBN: 978-92-1-120548-0

For further information on this publication, please address your enquiries to:

In Bangkok In Geneva In Tokyo

Director Director Director
Statistics Division Department of Measurement Statistical Institute for Asia
Economic and Social and Health Information and the Pacific
Commission for Systems JETRO-IDE Building 2-2
Asia and the Pacific World Health Organization Wakaba 3-chome
United Nations Building 20, Ave. Appia Mihama-ku Chiba-shi
Rajadamnern Nok Avenue CH-1211 Chiba 261-8787
Bangkok 10200 Geneva 27 Japan
Thailand Switzerland
Fax: [phone] Fax: [phone] Fax: [phone]
Email: [email protected] Email: [email protected] Email: [email protected]
URL: http://www.unescap.org URL: http://www.who.int/ URL: http://www.unsiap.or.jp
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WHO/ESCAP Training Manual on Disability Statistics

Preface

“To make people count, we have to count people right". This notion is of particular
relevance for the area of disability statistics, which until today is challenged by a
substantial lack of accurate and comparable data. Few countries in the Asia-Pacific
region collect information on disability regularly through censuses or surveys. In
countries where information is collected, it is often done without consideration of
international standards or focuses on only disability in terms of predefined categories
of impairments (e.g. people who are blind, deaf, paraplegic or intellectually disabled).
As a result, many countries in the Asia Pacific region have very limited and often
non-comparable information about the extent of disability and the lived experience of
person with disabilities and their needs.

The demand for more standardized disability statistics in the Asia-Pacific region has
increased significantly over the years. 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) and its supplement, the Biwako Plus Five
urges governments to develop national disability data systems using international
standards and methodologies and revisit their current definitions of disability. The
recently adopted the Convention on the Rights of Persons with Disabilities and its
Optional Protocol (CRPD) set the tone, at the global scale, of the broader approach
to disability, which emphasizes the affect of environmental and attitudinal barriers on
disability. CRPD calls for appropriate data collection on disability which would give
effect to its implementation.

In response to these needs, the World Health Organization (WHO) and the United
Nations Economic and Social Commission for Asia and the Pacific (ESCAP) have
taken initiatives and implemented a joint project on improving disability statistics and
measurement in the region by promoting a common definition and methodology
based on the International Classification of Functioning, Disability and Health (ICF). It
is against this background that this publication was prepared.

This training manual intends to enhance the understanding of the ICF-based
approach to disability measurement. It provides an overview of the ICF framework as
well as guidelines on how to operationalize the underlying concepts of functioning
and disability into data collection, dissemination and analysis.

This publication will benefit not only statisticians but also a wider range of national
and international users of data on disability. This broader influence will result from the
wide applicability of the standards, methodologies and best practices covered by the
manual. It is hoped, that the manual will assist in stimulating more disability data
collection in accordance with international standards and data dissemination for both
national and international disability policy analysis, formulation and evaluation
worldwide.

March 2008

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WHO/ESCAP Training Manual on Disability Statistics

Acknowledgement

The Training Manual on Disability Statistics is a joint product of the World Health
Organization (WHO) and the United Nations Economic and Social Commission for
Asia and the Pacific (ESCAP).

The team that provided guidance for the Manual includes Tomas Africa, Davaasuren
Chultemjamts, Andrew Flatt, Haishan Fu, Pietro Gennari, Lene Mikkelsen, and Tevfik
Bedirhan Ustun.

The Manual was drafted by Joanne Hillerman and Nenad Kostanjsek with
substantive inputs from Aiko Akiyama, Ken Black, Wei Liu and Jan Smit. It was
edited by Jerome Bickenbach, Daniel Clarke, Sarah Perini, and Mercedita Tia with
assistance from Chol Han, Krisana Boonpriroje, Julie Gotoh, Andres Montes, Nixie
Mabanag, Varaphorn Prapatsakdi, and Prapapan Treeratpituk.

WHO and ESCAP gratefully acknowledge valuable inputs received from national and
international experts who participated in the series of workshops organized under the
ESCAP/WHO project: Ziaullah Zia of Afghanistan; Marilyn Linggi Teo Lai of Brunei
Darussalam; Seng Soeurn and Tith Vong of Cambodia; Xiao Li and Qiu Zhuoying of
China; Timoci Bainimarama and Serevi Baledrokadroka of Fiji; Wai Fun Siu of Hong
Kong, China; Jogeswar Dash and Inder Jeet Singh of India; Arizal Ahnaf and Tati
Suryati of Indonesia; Seyedeh Susan Rafie and Samaneh Qaderi of Islamic Republic
of Iran; Bounloy Sengkhamyong of Lao PDR; Dick Wah Yau and Anna Yee Ling
Chan of Macao, China; Undrakhbayar Sundui and Tserenkhand Bideriya of
Mongolia; Guillermo Jr. Lipio of the Philippines; Albert Bengkiat Tan of Singapore;
Haputantrige Rathnasiri Gunasekera and Warahena Liyanage Don Pathman de
Alwis Goonatilleke of Sri Lanka; Pattariya Jarutat, Ubonwon Wathanadilokul, Orasri
Hintamai and Arpaporn Amonthum of Thailand; Nguyen Phong and Chung Nguyen
Dinh of Viet Nam; Jeremiah Banda of UNSD; Jennifer Madans and Maguerite
Schneider of Washington Group; Razikhan Hamdard Razikhan of UNDP; Ghazy
Mujahid of UNFPA; Jean-Francois Trani of Handicap-International Afghanistan; and
Betsy Van Leit of Handicap-International Cambodia.

The Manual benefited from the experiences of the following countries, which
participated in the pilot tests of ICF-based questionnaires in 2005 developed by WHO
and the Washington Group: Fiji, Indonesia, India, Mongolia and the Philippines.

The Government of the Republic of Korea generously provided funding for the
ESCAP/WHO project through which the Manual was produced. The Australian
Bureau of Statistics provided valuable technical support throughout the project.

Photos in the Manual were kindly provided by the WHO Photo Contest “Images of
Health and Disability 2002, 2003, 2004”, and the Asia-Pacific Development Center on
Disability (APCD).
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WHO/ESCAP Training Manual on Disability Statistics

List of Acronyms

ABS Australian Bureau of Statistics
ADLs Activities of Daily Living
IADLs Instrumental Activities of Daily Living
BMF Biwako Millennium Framework for Action towards an Inclusive,
Barrier-free and Rights-based Society for Persons with
Disabilities in Asia and the Pacific
BMI Body Mass Index
CAGD Census Advisory Group on Disability
CRPD Convention on the Rights of Persons with Disabilities and
its Optional Protocol
CSTDA Commonwealth/State/Territory Disability Agreement
DISTAT Disability Statistics
ESCAP Economic and Social Commission for the Asia Pacific
FIC Family of International Classifications
IADLs Instrumental Activities of Daily Living
ICD–10 International Statistical Classification of Diseases and Related
Health Conditions
ICF International Classification of Functioning, Disability and Health
ICIDH International Classification of Impairments, Disabilities and
Handicaps
NMDS National Minimum Data Set
NGOs Non-Governmental Organizations
Standard Rules 1993 Standard Rules on the Equalization of Opportunities for
Persons with Disabilities
SDAC Survey of Disability, Ageing and Carers
UN United Nations
WG Washington Group
WHO World Health Organization
WHO DAS II WHO Disability Assessment Schedule II
WHO-FIC WHO Family of International Classifications
YLD Years of Life lived with Disability

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WHO/ESCAP Training Manual on Disability Statistics

TABLE OF CONTENTS

Preface........................................................................................................................................ii
Acknowledgement.....................................................................................................................iii
List of Acronyms.......................................................................................................................iv
1. DISABILITY STATISTICS: WHY ARE THEY IMPORTANT AND WHAT DOES
ICF ADD?..................................................................................................................................2
1.1 Introduction...............................................................................................................2
1.2 ICF and its purposes in disability and health statistics......................................5
1.3 Purpose and outline of the manual.....................................................................10
2. THE ICF FRAMEWORK................................................................................................13
2.1 The ICF model and conceptual framework: Defining features.......................13
2.2 Importance of classifications and standards.....................................................25
2.3 ICF terminology and definitions of disability......................................................26
2.4 ICF structure and coding – for population data collections.............................28
2.5 ICF training and assistance available.................................................................32
3. DATA COLLECTION METHODS AND INSTRUMENTS...........................................34
3.1 Measurement of disability.....................................................................................34
3.2 Population censuses.............................................................................................36
3.3 Sample surveys.....................................................................................................37
3.4 Administrative collections.....................................................................................40
3.5 Joint use of census and sample survey – census screen...............................43
3.6 Strengths and weaknesses of the different data collection methods............45
3.7 Relatable data........................................................................................................49
4. USING ICF IN SURVEY AND CENSUS DESIGN...................................................52
4.1 Operationalization of ICF in disability data collections....................................53
4.2 Key Issues..............................................................................................................54
4.3 Approaches to measurement...............................................................................61
4.4 Question formats and response scales..............................................................73
4.5 Additional issues in question development.......................................................75
4.6 Census format questions......................................................................................80
4.7 International disability question sets...................................................................83
4.8 Administrative data collections, with an Australian example..........................89
5. SURVEY/CENSUS AND ADMINISTRATIVE-BASED DATA COLLECTION
DEVELOPMENT: PLANNING AND MEASUREMENT ISSUES......................................93
5.1 Overview of the survey and census cycles.......................................................94
5.2 Planning for data collection..................................................................................96
5.3 Asking the right questions....................................................................................96
5.4 Determining user needs.......................................................................................98
5.5 Privacy implications of collecting data..............................................................101
5.6 Other basic management issues in planning..................................................102
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WHO/ESCAP Training Manual on Disability Statistics

5.7 Quality of survey data and total survey error..................................................103
5.8 Issues in collection design.................................................................................105
5.9 Planning for administrative-based data collection..........................................110
5.10 Sample design.....................................................................................................112
6. INSTRUMENT DEVELOPMENT...............................................................................117
6.1 Attributes of good questions..............................................................................117
6.2 Testing and validation of data collection instruments....................................118
6.3 Data collection guide...........................................................................................126
7. ORGANIZING THE FIELDWORK.............................................................................129
7.1 Preparatory activities prior to conducting the fieldwork.................................129
7.2 Guidelines for data collection.............................................................................133
8. PROCESSING THE DATA...........................................................................................141
8.1 Processing procedures.......................................................................................141
8.2 Processing flow....................................................................................................145
9. ANALYSING AND DISSEMINATING DISABILITY STATISTICS........................149
9.1 Planning the outputs...........................................................................................149
9.2 Analysis – Turning data into information..........................................................157
9.3 Forms of output and dissemination strategies................................................161
9.4 Ensuring secure data or accomplished questionnaires storage..................164
9.5 Documentation.....................................................................................................165
10. DISABILITY STATISTICS: KEY TO SOUND POLICY FORMULATION.........168
10.1 Policies that can be formed out of the given disability data..........................168
10.2 Disability guidelines for policy formulation.......................................................170
BIBLIOGRAPHY..................................................................................................................173
APPENDICES........................................................................................................................174
Appendix 1: Selected Countries on Disability Data Collection and Methodology.175
Appendix 2: Questionnaire Used in the Pilot Test in Five Selected Countries......183
Appendix 3: Sample Data Collections..........................................................................195
Appendix 4: Biwako Millennium Framework for Action Targets...............................227
Appendix 5: Biwako Plus Five.......................................................................................229

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WHO/ESCAP Training Manual on Disability Statistics

List of Tables

Table No. Page

Table 2.1: ICF Levels of Functioning and Disability...............................................................15
Table 2.2: The ICF Domain Hierarchy....................................................................................29
Table 2.3: ICF Chapters.........................................................................................................30
Table 2.4: WHO Recommended ICF Item Pool.....................................................................31
Table 3.1: Population Censuses: Advantages and Disadvantages........................................45
Table 3.2: Sample Surveys: Advantages and Disadvantages...............................................46
Table 3.3: One-time Registration Data Collection: Advantages and Disadvantages.............47
Table 3.4: Continuous Registration Data Collection: Advantages and Disadvantages..........47
Table 3.5: Data Collection Methods for Disability Statistics: Comparative Summary............48
Table 4.1: Value of First Qualifiers in the ICF........................................................................74
Table 4.2: Negative Terms Relating to Disability...................................................................77
Table 4.3: Example of WG and WHO/ESCAP question sets.................................................85
Table 5.1: Face-to-face and Telephone Interviewing: Differences in Prevalence................107
Table 5.2: Sample Sizes of Some Disability Surveys...........................................................115
Table 6.1: Attributes of Pre-testing Techniques...................................................................122
Table 6.2: Comparison of ‘Gold Standard’ and Survey Question Responses......................125
Table 6.3: Comparison of Disability Census Items and ‘Gold Standard’ Survey Items........126

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WHO/ESCAP Training Manual on Disability Statistics

List of Boxes

Box No. Page

Box 3.1: 2001 Short Form/Long Form Census in Macau.......................................... 37
Box 3.2: Dedicated Sample Survey for Disability: Australian 2003 Survey of Disability
.......................................................................................................................... 38
Box 3.3: Disability Module in the Indonesian Socio Economy Survey...................... 39
Box 3.4: An Overview of the Australian Disability Services Data Collection............. 42
Box 3.5: Use of the Post-Census Survey Approach to Collect Disability Data in
Canada.............................................................................................................. 44
Box 3.6: Disability Data Collection Methods Practiced in Selected Countries.......... 45
Box 3.7: Using Data from a Variety of Sources: The Australian Disability Services
Project............................................................................................................... 49
Box 4.1: Australian Experience with Disability Census Questions............................ 54
Box 4.2: ICF Items in Australian and Canadian Measures of Disability.................... 55
Box 4.3: Inclusion of People Living in Institutions in Disability Surveys in New
Zealand............................................................................................................. 57
Box 4.4: Disability Data Collections Approach Employed in Selected Countries...... 66
Box 4.5: Case Study of Middle Earth: Developing Disability Measures.................... 88
Box 4.6: Australian National Minimum Dataset: Data Collection Form..................... 91
Box 5.1: Australian Census Advisory Group on Disability ........................................ 99
Box 5.2: Consultation with Disability Groups: Examples ........................................ 101
Box 5.3: The Context in Which Disability Questions are Asked.............................. 105
Box 9.1: Summary of Disability Data in Australia, 2003.......................................... 153
Box 9.2: Age Profile of Persons with disabilities: Two Diagrams............................ 154
Box 9.3: Disability Rates by Region, Philippines: 2000 .......................................... 156
Box 9.4: Explanatory Materials for Survey Analysis Presentation: A Guide............ 162
Box 9.5: Disability Data Statistical Releases: Some recent examples.................... 165
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WHO/ESCAP Training Manual on Disability Statistics

List of Diagrams

Diagram No. Page

Diagram 2.1: Core Impairment vs. Impairment Continuum....................................................16
Diagram 2.2: Different Health Conditions with the Same Participation Restriction................18
Diagram 2.3: Seeing Functions as a Continuum....................................................................20
Diagram 2.4: Overall Disability Score by country...................................................................22
Diagram 2.5: Interactions between the Components of ICF..................................................23
Diagram 2.6: ICF – a combination of different vectors of functioning.....................................23
Diagram 4.1: Mexican Disability Evaluation Survey, 2003.....................................................72
Diagram 4.2: Response Scales..............................................................................................76
Diagram 5.1: The Survey Cycle.............................................................................................94
Diagram 5.2: The Census Cycle............................................................................................95
Diagram 5.3: Sources of non-sampling error in survey/census data....................................104
Diagram 5.4: Disability rates by age and sex, Australia, 2003.............................................109
Diagram 8.1: Flow of processing survey/census/administrative – based results.................146

List of Charts

Chart No. Page

Chart 1.1: Prevalence of Disabled Persons in Asia-Pacific Countries.....................................7

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