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UNICEF/Washington Group on Disability Statistics Module on Child Functioning and Disability

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Title: UNICEF/Washington Group on Disability Statistics Module on Child Functioning and Disability


1
UNICEF/Washington Group on Disability
StatisticsModule 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
UNICEFs 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
  • MICS1 (1995-1996)
  • MICS2 (2000-2001)
  • MICS3 (2005-2006)
  • MICS4 (2010-2012)
  • Planning phase for MICS5 (2013-2014)

6
Multiple Indicator Cluster Surveys Since 1995,
more than 100 countries and more than 230 surveys
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 (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

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/guidelin
    es 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

15
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.

16
The Washington Group on Disability Statistics (WG)
  • 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.

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.

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.

19
The Disablement Process ca.1980
  • Disease or Impairment(s) Disability(ies)
    Handicap(s)
  • disorder Body level Personal level
    Societal level

20
Disability prevalence
21
Measuring Disability 1
  • Measurement based on impairments the Whats
    wrong with you? approach.
  • Questions used to identify persons with
    disabilitiesZambia 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

22
Global disability prevalence rates
High-income countries High-income countries High-income countries Low-income countries Low-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
23
Global disability prevalence rates
High-income countries High-income countries High-income countries Low-income countries Low-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
24
Global disability prevalence rates
High-income countries High-income countries High-income countries Low-income countries Low-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
25
Global disability prevalence rates
ESCAP/The Sub-Continent ESCAP/The Sub-Continent ESCAP/The Sub-Continent 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 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
26
Why the discrepancy?
  • Choice of model (medical vs. social)
  • Lack of a neutral language
  • Socio-cultural determinants
  • Definition and (self) identity

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

28
The ICF Model - 2001
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

30
From Concept to Measurement
?
ACTIVITY
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

32
Severity within domains of functioning
At least
Core Domain Some difficulty A lot of difficulty Unable To 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
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
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

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

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

37
Population aged 15 years who never attended
school, by disability status ()
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

39
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-W
    ashingtonGroup-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

40
The WG Workgroup on Child Functioning and
Disability
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

10/26/2013
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.

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.

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

10/26/2013
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

10/26/2013
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. 2011 _at_ 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.

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.

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.)

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.

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.

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.

54
Guiding Principles 10
  • For reference and to focus the respondent on the
    functioning of their own child in reference to
    that childs cohort, each question should be
    prefaced with the clause Compared with children
    of the same age.

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.

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

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.

58
Validation process for the questions
  • According with the WGs 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.

10/26/2013
58
59
Revised Module on Child Functioning and Disability
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.

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) Dont know

62
Preamble
  • The next questions ask about difficulties your
    child may have in doing certain activities

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?

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?

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

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)

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)

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?

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?

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?

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?

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?

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?

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

75
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) More
  • 3) A lot more

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?

77
Attention
  • Children aged 5-17
  • 11) Compared with children of the same age, does
    (he/she) have difficulty completing a task?

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?

79
Relationships
  • Children aged 5-17 years
  • 13) Does he/she have difficulty getting along
    with children of his/her age?

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?

81
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.)

82
THANKS
  • Claudia Cappa, ccappa_at_unicef.org
  • Mitch Loeb, gze1_at_cdc.gov
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