1. Claudia Cappa, Statistics and Monitoring Section, UNICEF
UNICEF/Washington Group on Disability Statistics Module on Child Functioning and Disability
Claudia Cappa, Statistics and Monitoring Section, UNICEF
Mitchell Loeb, Office of Analysis and Epidemiology, National Center for Health Statistics, CDC

2. Objective
Present the draft UNICEF/WG module on Child Functioning and Disability

3. UNICEF’s support for data collection: the Multiple Indicator Cluster Surveys (MICS)

4. MICS: main characteristics
Household surveys designed to collect data on children and women and to provide evidence base for improved policy formulation and programme planning
Key data source for monitoring the MDGs, the World Fit for Children goals, and other major international commitments
More than 100 indicators (nutrition, child health, mortality, child protection, education, HIV, etc.)
Data available by background characteristics (sex, ethnicity, wealth, education, etc.), and at the national and subnational level
With DHS, largest source of comparable data on children and their families in the developing world

5. MICS rounds Four rounds of MICS surveys completed since 1995
Planning phase for MICS5 ( )

6. Multiple Indicator Cluster Surveys Since 1995, more than 100 countries and more than 230 surveys*
Many countries have collected data more than once and have integrated MICS in their routine data collection programs. Since 1995 more than 80% of the population of children in the developing world covered. We have collected data on certain group of population including Palestinians in Lebanon and roma

7. MICS methodology Survey tools
Developed by UNICEF after consultations with relevant experts from various UN organizations as well as with interagency monitoring groups.

8. MICS methodology Implementation and capacity building
Surveys carried out by government organizations (with involvement of different ministries), with the support and assistance of UNICEF (HQ, RO and CO) and other partners
Technical assistance and training provided through regional workshops (questionnaire content, sampling and survey implementation, data processing, data quality and data analysis, and report writing and dissemination)
Implementation, including sample size determination, sample-stratification variables vary across countries and decisions about which modules to include is done at the country level

9. Child Disability in MICS

10. Child disability in MICS
MICS 2 ( ), 22 countries collected data on child disability
MICS 3 ( ), 26 countries collected data on child disability
MICS 4 ( ), 6 countries (completed) as of December 2012
MICS 5 ( ) = Planning stage with methodological revisions being introduced

11. Rationale Avoid a medical approach Use the ICF bio-psycho-social model
Consistent with the CRPD
Focus on activity limitations
Cover all age span of childhood
Consider age specificity when constructing questions
Include several functional domains
Reflect the continuum of disability

12. Methodological innovations - Part 1
New module on child functioning and disability developed in partnership with the Washington Group on Disability Statistics
The primary purpose of the questionnaire is to identify the sub-population of children that are at greater risk than the children of the same age of experiencing limited social participation due to functional limitations
Module can be included in any data collection effort

13. Methodological innovations – Part 2
Development of a standardized methodology/guidelines for follow-up assessments, based on existing best practice approaches for the evaluation of disability in children in developing countries
Objective: to validate data and collect additional information on the child, and his/her environment (including additional questions on participation, access to services, family life etc)
Methodology can be part of a stand alone survey or be used as second stage follow-up after a screening tool

14. Defining and Measuring Disability…
… the work of the Washington Group on Disability Statistics
Mitchell Loeb
National Center for Health Statistics/
Washington Group on Disability Statistics
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention
National Center for Health Statistics
3/22/2017

15. Measuring disability for international comparisons…
The Situation:
Absence of internationally comparable measures
Complexity of measuring health and disability
No agreed upon definition or set of core measures
No standards for producing the data
The Solution:
A mechanism to identify the appropriate framework, define a set of core measures and identify ways of obtaining the needed data within the auspices of national statistical offices and international organizations.
At the international level, there is largely an absence of comparable measures which can be used to paint a broad statistical picture of population health and disability.
That’s not to say that comparisons are not made – we certainly have information on births and deaths, and we use life expectancy information to make general statements about the health of a population, but…
Consistently measured, specific, standardized measures don’t exist – furthermore – standards with regard to the conceptualization, definition and collection of those measures and the conduct of analyses typically are lacking as well.
So, under the auspices of the United Nations, NSOs and the CES, two efforts were initiated and charged with developing such measures that would provide basic information on population health and disability …
both for within individual country use and for international comparisons.
Those two groups – the WG and the BI - have now been in place and doing this work for the last 8/4 years respectively.
3/22/2017

16. The Washington Group on Disability Statistics (WG)
June of the UN International Seminar on the Measurement of Disability, acknowledged the need for population based measures of disability, and recommended the development of principles and standard forms for global indicators of disability to be used in censuses.
3/22/2017

17. Washington Group: Purpose
The promotion and coordination of international cooperation in the area of health statistics by focusing on disability measures suitable for censuses and national surveys which will provide basic necessary disability information throughout the world.
The Washington Group is a United Nation’s City Group mandated to develop comparable measures for disability.
Participation includes: Representatives from over 60 countries, National Statistical Offices, international organizations and NGOs, as well as some DPOs.
Using the ICF as a framework, the WG’s interest is in the measurement of basic actions – at the level of the whole person. Disbility is defined at the intersection of basic actions and the environment and impacts participation in society. Disability is treated as a demographic variable, comparing populations and subgroups by disability status.
The WG first developed a short set of disability questions – there are 6 – that have been tested, adopted and now are being included in plans for Censuses around the world. What we are now engaged in is the development of longer sets of questions that include a) increasingly complex activities and b) more domains of health.
This last bullet is the focus of the second half of my talk today.
3/22/2017

18. Role of the Washington Group
Foster international cooperation in the area of health and disability statistics
Untangle the web of confusing and conflicting disability estimates
Develop a short set of general disability measures
Develop extended set/s of items to measure disability on population surveys
Address methodological issues associated with disability measurement
Produce internationally tested measures for use to monitor status of disabled populations.
3/22/2017

19. The Disablement Process ca.1980
Disease or Impairment(s) Disability(ies) Handicap(s)
disorder Body level Personal level Societal level
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20. Disability prevalence
3/22/2017

21. Measuring Disability: 1
Measurement based on impairments: the ”What’s wrong with you?” approach.
Questions used to identify persons with disabilities: Zambia Census 1990
1. Are you disabled in any way? Yes/No
2. What is your disability? Blind Yes/No Deaf/dumb Yes/No Crippled Yes/No Mentally retarded Yes/No
Disability prevalence = 0.9%
3/22/2017

22. Global disability prevalence rates*
High-income countries
Low-income countries
Year %
Canada
1991
14.7
Kenya
1989
0.7
Germany
1992
8.4
Namibia
3.1
Italy
1994
5.0
Nigeria
0.5
Netherlands
1986
11.6
Senegal
1988
1.1
Norway
1995
17.8
South Africa
1980
Sweden
12.1
Zambia
1990
0.9
Spain
15.0
Zimbabwe
1997
1.9 UK
12.2
Malawi
1983
2.9
USA
3/22/2017
* Sources and methodologies are country specific

23. Global disability prevalence rates*
High-income countries
Low-income countries
Year %
Canada
1991
14.7
Brazil
0.9
Germany
1992
8.4
Chile
2.2
Italy
1994
5.0
Colombia
1993
1.8
Netherlands
1986
11.6
El Salvador
1.6
Norway
1995
17.8
Panama
1990
1.3
Sweden
1988
12.1
Peru
Spain
15.0 UK
12.2
USA
3/22/2017
* Sources and methodologies are country specific

24. Global disability prevalence rates†
High-income countries
Low-income countries
Year %
Canada
1991
14.7
Turkey*
1985
1.4
Germany
1992
8.4
Oman*
1993
1.9
Italy
1994
5.0
Egypt*
1976
0.3
Netherlands
1986
11.6
Morocco*
1982
1.1
Norway
1995
17.8
Gaza Strip
1996
2.1
Sweden
1988
12.1
Iraq*
1977
0.9
Spain
15.0
Jordan*
1.2
UK*
12.2
Lebanon
1.0
USA
Syria
0.8
3/22/2017
† Sources and methodologies are country specific
* Census

25. Global disability prevalence rates
ESCAP/The Sub-Continent
Year %
Questions used to identify persons with disabilities:
Bangladesh
1982
0.8
Blind, crippled, deaf/dumb, mentally handicapped, other
Pakistan
1981
0.5
Blind, crippled, deaf/dumb, mentally retarded, insane, other
India
0.2
Is there a physically handicapped person in the household? If so, indicate the number of those who are totally (1) blind (2) crippled (3) dumb
Sri Lanka
Blind, deaf/dumb, loss/paralysis of hand(s) or leg(s)
Thailand
1990
0.3
Blind, deaf/dumb, armless, legless, mentally retarded, insanity, paralyzed, other
Mar-17

26. Why the discrepancy? Choice of model (medical vs. social)
Lack of a neutral language
Socio-cultural determinants
Definition and (self) identity
3/22/2017

27. The Conceptual Model
Moved away from a medical definition, based on individual pathology, towards a concept based on the consequences of disease for functional capacity and social participation.
The ICF was selected as the conceptual model:
Common point of reference
Common vocabulary
Highlights the environment, the physical, social and attitudinal context of disability
Includes both activity and participation domains
Does not provide an operational definition or a way to measure the concepts
3/22/2017

28. Structure (Impairment)
The ICF Model
Health Condition
(disorder/disease)
Body Function &
Structure (Impairment)
Activities
(Limitation)
Participation
(Restriction)
Environmental
Factors
Personal
3/22/2017
Source: World Health Organization, 2001

29. Measuring Disability: 2
Do you have difficulty seeing even if wearing glasses?
Do you have difficulty hearing even if using a hearing aid?
Do you have difficulty walking or climbing stairs?
Do you have difficulty remembering or concentrating?
Do you have difficulty with (self-care such as) washing all over or dressing?
Using your usual (customary) language, do you have difficulty communicating (for example understanding or being understood by others)?
Response categories:
No - no difficulty; Yes - some difficulty;
Yes - a lot of difficulty; Cannot do at all
3/22/2017

30. Structure (Impairment)
From Concept to Measurement
Health Condition
(disorder/disease)
Body Function &
Structure (Impairment)
Participation
(Restriction)
Environmental
Factors
Personal ?
ACTIVITY
Measurement of equalization of opportunities:
Locate the definition of disability at the most basic level of activity/participation in core domains
Defined as the ability or inability to carry out basic actions at the level of the whole person (i.e. walking, climbing stairs, seeing a friend across the room, communicating)
Connections between ‘disability’ and participation can be made during data analysis
3/22/2017
Source: World Health Organization, 2001

31. Measuring Disabilities: 2
A survey of Living Conditions among People with Disabilities in Zambia (2006) used the WG short set.
4 Response categories
Disability: at least one domain that is coded as a lot of difficulty or cannot do it at all.
prevalence 8.5%
3/22/2017
WG-11 Southampton, Bermuda

32. Severity within domains of functioning
At least:
Core Domain
Some
difficulty
A lot of
Unable
To do it
Vision
4.7
2.6
0.5
Hearing
3.7
2.3
Mobility
5.1
3.8
0.8
Remembering
2.0
1.5
0.3
Self-Care
1.3
0.4
Communicating
2.1
1.4
3/22/2017

33. Severity in Population (%)
Person with disability has: N %
at least 1 Domain is ‘some difficulty’
4053
14.5
at least 2 Domains are ‘some difficulty’
3090
11.0
at least 1 Domain is ‘a lot of difficulty’
2368
8.5
at least 1 Domain is ‘unable to do it’
673
2.4
3/22/2017

34. Objectives
Identify persons with similar types and degree of limitations in basic actions regardless of nationality or culture
Represent the majority (but not all) persons with limitations in basic actions
Represent commonly occurring limitations in domains that can be captured in the Census context
3/22/2017

35. Intended use of data
Compare levels of participation in employment, education, or family life for those with disability versus those without disability to see if persons with disability have achieved social inclusion
Monitor effectiveness of programs / policies to promote full participation
Monitor prevalence trends for persons with limitations in specific basic action domains
3/22/2017

36. WG Purpose: Equalization of Opportunities
% Employed
Seeks to identify all those at greater risk than the general population for limitations in participation.
Disability used as a demographic (not necessarily a dichotomy) – Monitoring of UNCRPD
3/22/2017

37. Population aged 15 years + who never attended school, by disability status (%)
3/22/2017

38. WG Disability Measures:
Short Set of Questions – six questions recommended for Censuses. (Recommended for use in all national censuses in the UN Principles and Recommendations for Population and Housing Censuses) Extended questions set on functioning for national surveys. (Subset to be included on European Health Interview Survey) A module on Child Functioning and Disability is currently being tested. Extended set on the environment (ES-E) currently under development. Developed a comparable testing methodology
3/22/2017

39. For more information…
The WG reports to the UN Statistical Commission. The WG annual report to the Commission is available at:
Executive summary of last 11 WG meetings posted on the WG website along with presentations & papers from the meetings:
The Washington Group is a United Nation’s City Group mandated to develop comparable measures for disability.
Participation includes: Representatives from over 60 countries, National Statistical Offices, international organizations and NGOs, as well as some DPOs.
Using the ICF as a framework, the WG’s interest is in the measurement of basic actions – at the level of the whole person. Disbility is defined at the intersection of basic actions and the environment and impacts participation in society. Disability is treated as a demographic variable, comparing populations and subgroups by disability status.
The WG first developed a short set of disability questions – there are 6 – that have been tested, adopted and now are being included in plans for Censuses around the world. What we are now engaged in is the development of longer sets of questions that include a) increasingly complex activities and b) more domains of health.
This last bullet is the focus of the second half of my talk today.
3/22/2017

40. The WG Workgroup on Child Functioning and Disability
3/22/2017

41. Working on Child Functioning and Disability: group members
Roberta Crialesi, Elena De Palma, Alessandra Battisti, ISTAT- Italy Howard Meltzer University of Leicester - UK Claudia Cappa UNICEF Mitch Loeb (NCHS/CDC) USA Andrew MacKenzie, Krista Kowalchuk Statistics-Canada Hasheem Mannan (Centre for Global Health, Trinity College Dublin) Ireland Daniel Mont, (University College London) UK Julie Dawson Weeks (NCHS/CDC) USA Helen Nviiri (Uganda Bureau of Statistics) Uganda Paula Monina Collado (National Statistics Office) Philippines Indumathie Bandara (Department of Census and Statistics) Sri Lanka Tserenkhand Bideriya (National Statistical Office) Mongolia Obert Manyame (Central Statistics Office) Zimbabwe Matthew Montgomery (Australian Bureau of Statistics) Australia
3/22/2017 41

42. Working on Child Functioning and Disability: Background (1)
UN Convention on the Rights of the Child (1989) is the first explicit provision relating to the rights of children with disabilities.
It included a prohibition against discrimination on the grounds of disability (art. 2), and obligations to provide services for children with disabilities, in order to enable them to achieve the fullest possible social integration (art. 23).
UN Convention on the Rights of Persons with Disabilities (2006) further strengthened the rights of children with disabilities.
- Article 7: Children with Disabilities: Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
UN Convention on the Rights of Persons with disabilities, 2006
Article 1: Definition of disability: A long-term physical, mental, intellectual
or sensory impairments which and their interaction with various environmental
barriers. 42

43. Working on Child Functioning and Disability: Background (2)
UN Convention on the Rights of Persons with Disabilities (2006)
Article 31 - Statistics and data collection
The parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention.
UN 66th General Assembly (2011)
Adopt a resolution on Rights of the Child (A/Res/66/141) where it called upon the all States to fully implement “Realizing the Millennium Development Goals for persons with disabilities towards 2015 and beyond” (A/Res/65/186), and to ensure that children with disabilities are rendered visible in the collection and analysis of data”.
UN 66th General Assembly 2011
Adopt a resolution on Rights of the child (A/Res/66/141) where it call upon the all States “To implement fully the commitments undertaken in General Assembly resolution 65/186 of 21 December 2010 entitled “Realizing the Millennium Development Goals for persons with disabilities towards 2015 and beyond”, and to ensure that children with disabilities are rendered visible in the collection and analysis of data”. 43

44. Working on Child Functioning and Disability: Background (3)
The strategic importance of the synergy between policies and statistical information has been fully recognized at the national and international level.
Nevertheless, the quality and quantity of data available on child disability varies enormously across the world due to:
the priority given to disability issues in the political agenda
the level of local resources available
to cultural factors (such as differences in values and attitudes towards individuals with disabilities)
to several aspects related to data collection 44

45. Available data on child disability differ in several important ways:
definition of disability
purpose of measurement
operational measures
domains of functioning examined
data collection method
reporting sources
response categories/severity qualifier
thresholds/cut-off
different age-group band
NO International comparability
3/22/2017 45

46. Main Challenges in measuring childhood disability
Children are in a process of development and transition
Child development does not follow a fixed schedule
Disability in children is different from adult disability
Disability measurement takes place through the filter of adults
The distribution of types of disability is different for children compared with adults.
In adults the major problems are mobility, sensory, and personal care - especially in
advancing years.
In children the main disabilities are related to intellectual functioning, affect and
behaviour.
3/22/2017 46

47. Working on Child Functioning and Disability: progress and meetings
WG Workgroup on Child Functioning and Disability was established fall 2009
UNICEF joined the Workgroup in early 2011
First draft module presented Nov. 11th WG meeting in Bermuda
April 2012: “Rome meeting”: revision and extension of the module
June 2012: “Technical Consultation on the Measurement of Child Disability meeting” hosted by UNICEF: revision of the module
October 2012: 12th WG meeting: presentation of the new module
Since September 2012: validation process (cognitive and field tests) 47

48. Guiding Principles: 1
The primary purpose of the questions is to identify the sub-population of children that are at greater risk than the children of the same age of experiencing limited social participation.
3/22/2017

49. Guiding Principles: 2
The definition of disability adopted is the one set out in the ICF (WHO): Disability “denotes the negative aspects of the interaction between an individual (with a health condition) and that individual's contextual (environmental and personal) factors.”
3/22/2017

50. Guiding Principles: 3/4
The ICF-CY is the conceptual framework used for the selection of the relevant domains to produce a set of questions that is current, relevant and sustainable. The set of questions is intended to be used as components of national population surveys or as supplements to specialized surveys (e.g. health, education, etc.)
3/22/2017

51. Guiding Principles: 5
The distribution of types of disability are different for children compared with adults.
In adults the major problems are mobility, sensory, and personal care - especially in advancing years.
In children the main disabilities are related to intellectual functioning, affect and behaviour.
3/22/2017

52. Guiding Principles: 6
The work also took into account the work of the WG in the development of the short and the extended set of questions for adults. In addition, there are several studies, and national and international surveys that were taken into account in proposing this new set of questions.
3/22/2017

53. Guiding Principles: 7/8/9
Age range considered for the set of questions: 2-17 years of age. Questions will be asked of parents or primary caregivers. The aim of the questions is to provide comparable data cross-nationally.
3/22/2017

54. Guiding Principles: 10
For reference and to focus the respondent on the functioning of their own child in reference to that child’s cohort, each question should be prefaced with the clause: “Compared with children of the same age…”.
3/22/2017

55. Guiding Principles: 11/12/13
Response options to reflect the continuum of disability. Consultation with experts other than survey statisticians: paediatricians, developmental psychologists, speech therapists etc. The set of questions should be validated through cognitive and field tests, following established WG procedures.
3/22/2017

56. Select appropriate and feasible domains:
The workgroup collected & analysed documentation relating to the measurement of childhood disability, especially questionnaires of surveys on children already conducted in several countries. Domains selected: seeing, hearing, mobility, self-care, communication, learning, emotions, behaviour, attention, coping with change, relationships, and playing
3/22/2017

57. A set of questions was drafted following these guidelines:
avoid a medical approach
use the ICF bio-psycho-social model
use, when appropriate, questions already tested and adopted by the WG;
include the reference “Compared with children of the same age…”
consider age specificity when constructing questions
response options to reflect disability continuum.
3/22/2017

58. Validation process for the questions
According with the WG’s question evaluation procedures, the module on child functioning and disability will be tested using both qualitative and quantitative methodologies: cognitive and field tests with the participation of some countries already involved in testing the short and/or the extended WG set and other countries involved in the MICS. Cognitive testing has been carried out in Mumbai, India; testing is currently underway in USA; testing is planned for January 2013 in Belize and other countries have expressed interest in participating in the testing of the module.
3/22/2017 58

59. Revised Module on Child Functioning and Disability
3/22/2017

60. Use of measures of child functioning and disability
Describe the population at risk – to inform policy. Classify the population to monitor disparities in participation by disability status (also provides a prevalence rate). Identify a population for 2nd stage assessment. (Improve our understanding of population data.) To provide services to children indentified.
3/22/2017

61. Response options:
Unless noted otherwise, all response categories are: 1) No difficulty 2) Some difficulty 3) A lot of difficulty 4) Cannot do at all 7) Refused 9) Don’t know
3/22/2017

62. Preamble
The next questions ask about difficulties your child may have in doing certain activities…
3/22/2017

63. Seeing
Children aged 2-17 years 1a) Does [he/she] wear glasses? Yes/No 1b) If Yes: Does [he/she] have difficulty seeing, when wearing glasses? If No: Does [he/she] have difficulty seeing?
3/22/2017

64. Hearing
Children aged 2-17 years 2a) Does [he/she] use a hearing aid? Yes/No 2b) If Yes: Does [he/she] have difficulty hearing, when using his/her hearing aid(s)]? If No: Does [he/she] have difficulty hearing?
3/22/2017

65. Walking
Children aged 2-4 years 3a) Compared with children of the same age, does [he/she] have difficulty walking?
3/22/2017

66. Walking
Children aged 5-17 years 3b) Compared with children of the same age, does [he/she] have difficulty walking 500 meters on level ground? (That would be about…. [Insert country specific example])
3/22/2017

67. Walking
Children aged 5-17 years 3c) Compared with children of the same age, does [he/she] have difficulty walking 100 meters on level ground? (That would be about…. [Insert country specific example])
3/22/2017

68. Self-care
Children aged 5-17 years 4) Compared with children of the same age, does [he/she] have difficulty with self-care such as feeding or dressing him/herself?
3/22/2017

69. Communication/Comprehension
Children aged 2-4 years 5a) Does [he/she] have difficulty understanding you? 6a) Do you have difficulty understanding what your child wants?
3/22/2017

70. Communication/Comprehension
Children aged 5-17 years 5b) Compared with children of the same age and using [his/her] usual language, does [he/she] have difficulty understanding other people? 6b) Compared with children of the same age and using [his/her] usual language, does [he/she] have difficulty being understood by other people?
3/22/2017

71. Learning
Children aged 2-3 years 7a) Compared with children of the same age, does [he/she] have difficulty learning the names of common objects? /or/ imitating or repeating something you say or do?
3/22/2017

72. Learning
Children aged 3-17 years 7b) Compared with children of the same age, does [he/she] have difficulty learning to do new things?
3/22/2017

73. Learning
Children aged 5-17 years 8) Compared with children of the same age, does [he/she] have difficulty remembering things that they have learned?
3/22/2017

74. Emotions Children aged 5-17 years
9) Compared with children of the same age, how much does (he /she) worry or feel sad?
1) The same or less
2) More
3) A lot more
3/22/2017

75. Behavior 1) The same or less
Children aged 2-4 years (MICS Early Childhood Development Questionnaire)
10) Compared with children of the same age, how much does (he/she) kick, bite or hit other children or adults?
1) The same or less
2) More
3) A lot more
3/22/2017

76. Behavior
Children aged 5-17 years 10) Compared with children of the same age, how much difficulty does (he/she) have controlling his/her behaviour?
3/22/2017

77. Attention
Children aged ) Compared with children of the same age, does (he/she) have difficulty completing a task?
3/22/2017

78. Coping with change
Children aged 5-17 years 12) Compared with children of the same age, does (he/she) have difficulty accepting change to plans or routine?
3/22/2017

79. Relationships
Children aged 5-17 years 13) Does [he/she] have difficulty getting along with children of his/her age?
3/22/2017

80. Play
Children aged 2-5 years 14a1) Does [he/she] have difficulty playing with toys or household objects? Children aged 2-12 years 14a2) Compared with children of the same age, does [he/she] have difficulty playing with other children?
3/22/2017

81. Play
Children aged years 14b) Compared with children of the same age, does [he/she] have difficulty doing things with other children? (Include things that children usually do together.)
3/22/2017

82. THANKS Claudia Cappa, ccappa@unicef.org Mitch Loeb, gze1@cdc.gov
3/22/2017