1. Data on Disability: Opportunities and Challenges
Margaret Mbogoni
Demographic and Social Statistics Branch
Statistics Division, DESA

2. Contributors United Nations Statistics Division (coordinator) WHO ILO
UNICEF
Washington Group
DHS Program

3. Context – International Mandates
2030 Agenda for Sustainable Development calls for quality, accessible, timely and reliable disaggregated data for monitoring and measurement of progress and to ensure that no one is left behind
2030 Agenda further commits to enhance capacity-building support to developing countries to increase significantly the availability of high-quality, timely and reliable data disaggregated by …disability
CRPD calls on States Parties to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies related to the Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights
States Parties are encouraged to disseminate the statistics and ensure their accessibility to persons with disabilities and others

4. Objectives of the chapter
Discuss current efforts by countries to measure disability
Identify strategies to enhance national capacity to meet data demands for disability inclusive development in the context of the Sustainable Development Goals and the CRPD

5. Outline of the chapter
National experiences in disability data collection - summary outcomes of UNSD regional
WHO tools for measurement of disability
WG tools including those developed in collaboration with other organizations
Illustrative example on operationalization of a WG
Conclusions and way forward

6. National experiences in disability data collection
UNSD has organized 6 regional meeting to:
review national experiences in disability measurement, including challenges faced and lessons learnt during 2010 censuses
discuss disability-related SDG indicators for monitoring progress towards inclusion of persons with disabilities in development programmes
share national experiences among participating countries and facilitate intra-regional cooperation
South East Asia
Caribbean
African
Arabic speaking countries
North and Central Asia and Western Balkan States
Latin America

7. National experiences in disability data collection
Variations among regions in sources of data
Strong reliance of censuses – Africa, South East Asia, Caribbean, Arabic speaking countries
Multiple sources (censuses, surveys, administrative sources) – Latin America, North and Central Asia and Western Balkan States
Recognition in all regions that administrative data sources should be strengthened and exploited

8. National experiences in disability data collection
2030 Agenda
Recognition that for monitoring, unprecedented amount of data is required from NSS
data revolution” that explores alternative sources of data as well as coordination of the NSS
General lack of requisite formal national coordination mechanism for necessary stakeholders

9. National experiences in disability data collection
General lack of experts on disability statistics in their countries
Recognized that national capacity building is required in countries on the collection, analysis, dissemination and utilization of data on disability
Highlighted the need for technical assistance
Outcomes of regional meetings input into revision of UN Guidelines and Principles for Development of Disability Statistics

10. WHO tools for measurement of disability
WHO involved in conceptualization, definition and measurement of disability – over two decades
Development of ICF a milestone achievement
Move from a consequences of health condition or impairment to disability a result of interaction between a health condition and environment
WHO engagement in measurement of functioning and disability
Multi-country Survey Study ( )
World Health Survey ( ) – provided data for World Report on Disability
Longitudinal Study on global AGEing and adult health (SAGE)
Development of WHO Disability Assessment Schedule

11. WHO tools for measurement of disability
WHO presently supporting member states to collect data on disability and functioning using MDS
A general population survey developed by WHO and World Bank in collaboration with a range of stakeholders
MDS is WHO’s strategy to support member states establish and strengthen monitoring and evaluation systems for disability – incl. information on needs and unmet needs, costs, barriers and quality of life
MDS operationalizes ICF biopsychosocial model of disability
Gives more understanding of lived experience of disability beyond understanding disability as an individual attribute

12. WHO tools for measurement of disability
Data from MDS can be used to quantify impact on disability of
health condition or impairment
diverse aspects of the environment
Allows to make assessments of most beneficial interventions directed at either person and/or environment will produce most benefits
A brief MDS developed based on analysis of data from pilot and national MDS datasets to meet national needs for an appropriate version for integration into other household surveys
MDS implemented in national surveys Chile, Sri Lanka, Philippines; in preparation in Qatar, Panama, United Arab Emirates, and Costa Rica. Several regional surveys carried out or planned

13. WG tools for measurement of disability
An outcome of 2001 UN International Seminar on the Measurement of Disability
A city group under the aegis of the UN Statistical Commission
Established to address urgent need for improved and internationally comparable disability statistics
Major objective of WG is to provide basic necessary and internationally comparable information on disability
WG members identified need for a short set of questions for use in censuses and surveys as priority
Has developed WG-SS, WG-ES, CFM, module on inclusive education currently being tested, module on inclusive employment

14. WG tools for measurement of disability
WG-SS – adopted in 2006
A set of six questions on walking, seeing, hearing, cognition, self-care, communication
Four graded answer categories – no difficulty, some difficulty, a lot of difficulty, cannot do
Questions and response categories allow calculation of estimates for level of functioning within each domain or among different combinations of domains
WG-SS have been used in censuses and surveys of many countries
WG-SS intended to identify (in a census or survey format) people with a disability, namely those at greater risk than the general population for participation restrictions due to the presence of difficulties in six core functional domains, if appropriate accommodations are not made

15. WG tools for measurement of disability
WG-ES
WG-ES includes domains that could not be included in WG-SS
Obtains more information on some domains than provided by WG-SS
Obtains more information on use of mobile assistive devices in order to assess functioning
Includes WG-SS plus domains on affect (anxiety and depression), pain, fatigue, and upper body functioning
Four scaled response categories for describing functioning in each domain

16. WG tools for measurement of disability
WG/UNICEF Child Functioning Module (CFM) – launched 2016
Developed to address the aspects of child development not addressed in previous WG tools
WG embarked upon the development of a separate module that would specifically address child functioning
Determines ‘disability’ through a series of questions on difficulty functioning that would place a child at risk of participation restrictions in a non-accommodating environment
Module composed of two sub-modules: childn 2-4 yrs; childn 5-17 yrs
Child’s mother or, if mother not alive or is not living with child, primary caregiver is recommended respondent

17. WG tools for measurement of disability
UNICEF/WG Module on Inclusive Education – focus on formal education
In support of promotion of right to education for children
Module assesses the school environment and participation
Provides information on environmental influences on participation in school and identifies bottlenecks
Responses from parents to questions on attitudes of general adult population towards educ. for all children and specifically for CWDs
Responses from caregivers of children who are attending school to evaluate accessibility of physical space, curriculum, teachers’ attendance, etc
Questions on out-of-school children to understand barriers to school participation – safely, transportation, accessibility of curriculum, etc.

18. WG tools for measurement of disability
WG/ILO Module on Disability and Employment – for inclusion in LF surveys
Module undergoing cognitive testing and covers:
Disability identification – WG-SS + two additional questions on upper body mobility focusing on lifting and using one’s hands and fingers
Date at onset
Barriers
Accommodations
Attitudes
Social protection

19. WG tools for measurement of disability
WG conducts workshops on implementation of tools
Provides assistance and advices through webinars, phone, as requested
Website with documentation, including blog, FAQ

20. Illustrative example on operationalization of a WG tool
Demographic and Health Surveys (DHS) Program
Began in 1984 with more focus on demography
Has evolved over time with more questions added
In 2015, The Demographic and Health Surveys (DHS) Program piloted and finalized an optional module of questions on disability based on WG-SS
Module included in household questionnaire
covers six core functional domains: seeing, hearing, communicating, remembering and concentrating, walking, and washing all over and dressing
One respondent provides information on all hhd members 5yrs+

21. Conclusions and Way Forward
Recognizing need for data by countries on one hand and various stakeholders in disability measurement on the other hand
Need for concerted collaboration for benefit of countries
Development of guidelines
National capacity building activities
Use of advanced technologies for data collection and dissemination
Training on processing, analysis and dissemination of data
Strategies for enhanced utilization of data at national level