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UNICEF/Washington Group on Disability Statistics Module on Child Functioning and Disability Claudia Cappa, Statistics and Monitoring Section, UNICEF Mitchell.

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Presentation on theme: "UNICEF/Washington Group on Disability Statistics Module on Child Functioning and Disability Claudia Cappa, Statistics and Monitoring Section, UNICEF Mitchell."— Presentation transcript:

1 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 UNICEFs support for data collection: the Multiple Indicator Cluster Surveys (MICS)

4 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

5 MICS rounds Four rounds of MICS surveys completed since 1995 MICS1 ( ) MICS2 ( ) MICS3 ( ) MICS4 ( ) Planning phase for MICS5 ( )

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

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

8 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 MICS methodology

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 12/16/2013 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 14

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. 1512/16/2013

16 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. 12/16/2013 The Washington Group on Disability Statistics (WG) 16

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. 1712/16/2013

18 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 12/16/201318

19 12/16/ The Disablement Process ca.1980 Disease orImpairment(s) Disability(ies) Handicap(s) disorder Body level Personal level Societal level

20 12/16/ Disability prevalence

21 12/16/ Measuring Disability: 1 Measurement based on impairments: the Whats wrong with you? approach. Questions used to identify persons with disabilities: Zambia Census 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 12/16/ Global disability prevalence rates* High-income countriesLow-income countries Year% % Canada Kenya Germany Namibia Italy Nigeria Netherlands Senegal Norway South Africa Sweden Zambia Spain Zimbabwe UK Malawi USA * Sources and methodologies are country specific

23 12/16/ Global disability prevalence rates* High-income countriesLow-income countries Year% % Canada Brazil Germany Chile Italy Colombia Netherlands El Salvador Norway Panama Sweden Peru Spain UK USA * Sources and methodologies are country specific

24 12/16/2013 Global disability prevalence rates High-income countriesLow-income countries Year% % Canada Turkey* Germany Oman* Italy Egypt* Netherlands Morocco* Norway Gaza Strip Sweden Iraq* Spain Jordan* UK* Lebanon USA Syria Sources and methodologies are country specific * Census 24

25 Dec-1325 Global disability prevalence rates ESCAP/The Sub-Continent Year%Questions used to identify persons with disabilities: Bangladesh Blind, crippled, deaf/dumb, mentally handicapped, other Pakistan Blind, crippled, deaf/dumb, mentally retarded, insane, other India 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 Blind, deaf/dumb, armless, legless, mentally retarded, insanity, paralyzed, other

26 12/16/ 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: 1.Common point of reference 2.Common vocabulary 3.Highlights the environment, the physical, social and attitudinal context of disability 4.Includes both activity and participation domains 5.Does not provide an operational definition or a way to measure the concepts 2712/16/2013

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

29 12/16/ Measuring Disability: 2 1.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

30 Health Condition (disorder/disease) Body Function & Structure (Impairment) Participation (Restriction) Environmental Factors Personal Factors Source: World Health Organization, 2001 From Concept to Measurement ? 3012/16/2013

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% 31WG-11 Southampton, Bermuda

32 12/16/ Severity within domains of functioning Core Domain Some difficulty A lot of difficulty Unable To do it Vision Hearing Mobility Remembering Self-Care Communicating At least:

33 12/16/2013 Severity in Population (%) Person with disability has:N% at least 1 Domain is some difficulty at least 2 Domains are some difficulty at least 1 Domain is a lot of difficulty at least 1 Domain is unable to do it

34 12/16/2013 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 34

35 12/16/2013 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 35

36 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 12/16/2013 % Employed 36

37 Population aged 15 years + who never attended school, by disability status (%) 12/16/201337

38 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 12/16/2013 WG Disability Measures: 38

39 For more information… The WG reports to the UN Statistical Commission. The WG annual report to the Commission is available at: WashingtonGroup-E.pdf Executive summary of last 11 WG meetings posted on the WG website along with presentations & papers from the meetings: 3912/16/2013

40 The WG Workgroup on Child Functioning and Disability 40

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 12/16/201341

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: 1.the priority given to disability issues in the political agenda 2.the level of local resources available 3.to cultural factors (such as differences in values and attitudes towards individuals with disabilities) 4.to several aspects related to data collection 44

45 Available data on child disability differ in several important ways: 1. definition of disability 2. purpose of measurement 3. operational measures 4. domains of functioning examined 5. data collection method 6. reporting sources 7. response categories/severity qualifier 8. thresholds/cut-off 9. different age-group band NO International comparability 12/16/201345

46 Main Challenges in measuring childhood disability 1.Children are in a process of development and transition 2.Child development does not follow a fixed schedule 3.Disability in children is different from adult disability 4.Disability measurement takes place through the filter of adults 12/16/201346

47 Working on Child Functioning and Disability: progress and meetings 1.WG Workgroup on Child Functioning and Disability was established fall UNICEF joined the Workgroup in early First draft module presented Nov. 11 th WG meeting in Bermuda 4.April 2012: Rome meeting: revision and extension of the module 5.June 2012: Technical Consultation on the Measurement of Child Disability meeting hosted by UNICEF: revision of the module 6.October 2012: 12 th WG meeting: presentation of the new module 7.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. 12/16/201348

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. 12/16/201349

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.) 12/16/201350

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. 12/16/201351

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. 12/16/201352

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. 12/16/201353

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…. 12/16/201354

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. 12/16/201355

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 12/16/201356

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. 12/16/201357

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. 12/16/201358

59 12/16/2013 Revised Module on Child Functioning and Disability 59

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 2 nd stage assessment. (Improve our understanding of population data.) To provide services to children indentified. 12/16/201360

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 12/16/201361

62 Preamble The next questions ask about difficulties your child may have in doing certain activities… 12/16/201362

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? 12/16/201363

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? 12/16/201364

65 Walking Children aged 2-4 years 3a) Compared with children of the same age, does [he/she] have difficulty walking? 12/16/201365

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]) 12/16/201366

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]) 12/16/201367

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? 12/16/201368

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? 12/16/201369

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? 12/16/201370

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? 12/16/201371

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? 12/16/201372

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? 12/16/201373

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 12/16/201374

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 12/16/201375

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? 12/16/201376

77 Attention Children aged ) Compared with children of the same age, does (he/she) have difficulty completing a task? 12/16/201377

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? 12/16/201378

79 Children aged 5-17 years 13) Does [he/she] have difficulty getting along with children of his/her age? 12/16/2013 Relationships 79

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? 12/16/201380

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.) 12/16/201381

82 THANKS Claudia Cappa, Mitch Loeb, 12/16/201382


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