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UNICEF/Washington Group on Disability StatisticsModule on Child Functioning and Disability
Claudia Cappa, Statistics and Monitoring Section, UNICEFMitchell Loeb, Office of Analysis and Epidemiology, National Center for Health
Statistics, CDC
Objective
Present the draft UNICEF/WG module on Child Functioning and Disability
UNICEF’s support for data collection: the Multiple Indicator Cluster Surveys (MICS)
MICS: main characteristics 1. Household surveys designed to collect data on children
and women and to provide evidence base for improved policy formulation and programme planning
2. Key data source for monitoring the MDGs, the World Fit for Children goals, and other major international commitments
3. More than 100 indicators (nutrition, child health, mortality, child protection, education, HIV, etc.)
4. Data available by background characteristics (sex, ethnicity, wealth, education, etc.), and at the national and subnational level
5. With DHS, largest source of comparable data on children and their families in the developing world
MICS roundsFour rounds of MICS surveys completed since 1995
•MICS1 (1995-1996)•MICS2 (2000-2001)•MICS3 (2005-2006)•MICS4 (2010-2012)
•Planning phase for MICS5 (2013-2014)
Multiple Indicator Cluster Surveys
Since 1995, more than 100 countries and more than 230 surveys*
Survey toolsDeveloped by UNICEF after consultations with relevant experts from various UN organizations as well as with interagency monitoring groups.
MICS methodology
Implementation and capacity buildingSurveys 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
MICS methodology
Child Disability in MICS
Child disability in MICS
• MICS 2 (2000-2001), 22 countries collected data on child disability
• MICS 3 (2005-2006), 26 countries collected data on child disability
• MICS 4 (2010-2012), 6 countries (completed) as of December 2012
• MICS 5 (2013-2014) = Planning stage with methodological revisions being introduced
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
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
Methodological innovations – Part 2Development 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
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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 SERVICESCenters for Disease Control and PreventionNational Center for Health Statistics
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Measuring disabilityfor 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.
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June of 2001-- 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.
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The Washington Group on Disability Statistics (WG)
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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.
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• 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.
Role of the Washington Group
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The Disablement Process ca.1980
Disease or Impairment(s) Disability(ies) Handicap(s)
disorder Body level Personal level Societal level
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Disability prevalence
0
20
40
60
80
100
non-disabled disabled
Disability status
Per
cen
t o
f p
op
ula
tio
n
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Measuring Disability: 1Measurement 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/No2. What is your disability?
Blind Yes/NoDeaf/dumb Yes/NoCrippled Yes/NoMentally retarded Yes/No
Disability prevalence = 0.9%
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Global disability prevalence rates*High-income countries Low-income countries
Year % Year %
Canada 1991 14.7 Kenya 1989 0.7
Germany 1992 8.4 Namibia 1991 3.1
Italy 1994 5.0 Nigeria 1991 0.5
Netherlands 1986 11.6 Senegal 1988 1.1
Norway 1995 17.8 South Africa 1980 0.5
Sweden 1988 12.1 Zambia 1990 0.9
Spain 1986 15.0 Zimbabwe 1997 1.9
UK 1991 12.2 Malawi 1983 2.9
USA 1994 15.0
* Sources and methodologies are country specific
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Global disability prevalence rates*High-income countries Low-income countries
Year % Year %
Canada 1991 14.7 Brazil 1991 0.9
Germany 1992 8.4 Chile 1992 2.2
Italy 1994 5.0 Colombia 1993 1.8
Netherlands 1986 11.6 El Salvador 1992 1.6
Norway 1995 17.8 Panama 1990 1.3
Sweden 1988 12.1 Peru 1993 1.3
Spain 1986 15.0
UK 1991 12.2
USA 1994 15.0
* Sources and methodologies are country specific
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Global disability prevalence rates†
High-income countries Low-income countries
Year % 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 1986 15.0 Jordan* 1994 1.2
UK* 1991 12.2 Lebanon 1994 1.0
USA 1994 15.0 Syria 1993 0.8
† Sources and methodologies are country specific* Census
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Global disability prevalence ratesESCAP/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 1981 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 1981 0.5 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
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Why the discrepancy?
• Choice of model (medical vs. social)• Lack of a neutral language• Socio-cultural determinants• Definition and (self) identity
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:1.Common point of reference 2.Common vocabulary3.Highlights the environment, the physical, social and attitudinal context of disability4.Includes both activity and participation domains5.Does not provide an operational definition or a way to measure the concepts
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Health Condition(disorder/disease)
Body Function &Structure (Impairment)
Activities(Limitation)
Participation(Restriction)
EnvironmentalFactors
PersonalFactors
Source: World Health Organization, 2001
The ICF Model - 2001
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Measuring Disability: 21. Do you have difficulty seeing even if wearing glasses?2. Do you have difficulty hearing even if using a hearing aid?3. Do you have difficulty walking or climbing stairs?4. Do you have difficulty remembering or concentrating?5. Do you have difficulty with (self-care such as) washing all
over or dressing?6. 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
Health Condition(disorder/disease)
Body Function &Structure (Impairment)
Participation(Restriction)
EnvironmentalFactors
PersonalFactors
Source: World Health Organization, 2001
From Concept to Measurement
?
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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%
31WG-11 Southampton, Bermuda
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Severity within domains of functioning
Core DomainSome
difficultyA lot of
difficultyUnableTo do it
Vision 4.7 2.6 0.5
Hearing 3.7 2.3 0.5
Mobility 5.1 3.8 0.8
Remembering 2.0 1.5 0.3
Self-Care 2.0 1.3 0.4
Communicating 2.1 1.4 0.5
At least:
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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
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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
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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
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WG Purpose: Equalization of Opportunities
• 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
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% Employed
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Population aged 15 years + who never attended school, by disability status (%)
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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
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WG Disability Measures:
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For more information…• The WG reports to the UN Statistical Commission.
The WG annual report to the Commission is available at:
http://unstats.un.org/unsd/statcom/doc12/2012-21-WashingtonGroup-E.pdf
• Executive summary of last 11 WG meetings posted on the WG website along with presentations & papers from the meetings:
http://www.cdc.gov/nchs/washington_group.htm
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The WG Workgroup on Child Functioning and Disability
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Working on Child Functioning and Disability: group members
Roberta Crialesi, Elena De Palma, Alessandra Battisti, ISTAT- ItalyHoward Meltzer University of Leicester - UKClaudia Cappa UNICEFMitch Loeb (NCHS/CDC) USAAndrew MacKenzie, Krista Kowalchuk Statistics-CanadaHasheem Mannan (Centre for Global Health, Trinity College Dublin) IrelandDaniel Mont, (University College London) UKJulie Dawson Weeks (NCHS/CDC) USAHelen Nviiri (Uganda Bureau of Statistics) UgandaPaula Monina Collado (National Statistics Office) PhilippinesIndumathie Bandara (Department of Census and Statistics) Sri LankaTserenkhand Bideriya (National Statistical Office) MongoliaObert Manyame (Central Statistics Office) Zimbabwe Matthew Montgomery (Australian Bureau of Statistics) Australia
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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.
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Working on Child Functioning and Disability: Background (2)
UN Convention on the Rights of Persons with Disabilities (2006) Article 31 - Statistics and data collectionThe 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”.
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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:
1. the priority given to disability issues in the political agenda2. the level of local resources available3. to cultural factors (such as differences in values and attitudes
towards individuals with disabilities) 4. to several aspects related to data collection
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Available data on child disability differ in several important ways:
1. definition of disability 2. purpose of measurement3. operational measures 4. domains of functioning examined 5. data collection method6. reporting sources7. response categories/severity qualifier 8. thresholds/cut-off9. different age-group band
NO International comparability
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Main Challenges in measuring childhood disability
1. Children are in a process of development and transition2. Child development does not follow a fixed schedule3. Disability in children is different from adult disability4. Disability measurement takes place through the filter of
adults
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Working on Child Functioning and Disability: progress and meetings
1. WG Workgroup on Child Functioning and Disability was established fall 2009
2. UNICEF joined the Workgroup in early 20113. First draft module presented Nov. 2011 @ 11th WG meeting in
Bermuda 4. April 2012: “Rome meeting”: revision and extension of the module5. June 2012: “Technical Consultation on the Measurement of Child
Disability meeting” hosted by UNICEF: revision of the module6. October 2012: 12th WG meeting: presentation of the new module7. Since September 2012: validation process (cognitive and field
tests)47
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.
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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.”
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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.)
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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.
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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.
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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.
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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…”.
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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.04/18/23 55
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
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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.04/18/23 57
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 testswith 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.
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Revised Module on Child Functioning and Disability
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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.
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Response options:
Unless noted otherwise, all response categories are:1) No difficulty2) Some difficulty3) A lot of difficulty4) Cannot do at all
7) Refused9) Don’t know
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Preamble
The next questions ask about difficulties your child may have in doing certain activities…
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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?
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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?
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Walking
Children aged 2-4 years
3a) Compared with children of the same age, does [he/she] have difficulty walking?
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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])
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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])
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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?
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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?
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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?
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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?
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Learning
Children aged 3-17 years
7b) Compared with children of the same age, does [he/she] have difficulty learning to do new things?
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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?
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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) More3) A lot more
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Behavior
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) More3) A lot more
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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?
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Attention
Children aged 5-17
11) Compared with children of the same age, does (he/she) have difficulty completing a task?
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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?
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Children aged 5-17 years
13) Does [he/she] have difficulty getting along with children of his/her age?
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Relationships
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Play
Children aged 2-5 years14a1) 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?
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Play
Children aged 13-17 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.)
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