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. 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 • 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/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. U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics 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) disorderBody level Personal level Societal level

20. Disability prevalence

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%

22. Global disability prevalence rates* * Sources and methodologies are country specific

23. Global disability prevalence rates* * Sources and methodologies are country specific

24. Global disability prevalence rates† † Sources and methodologies are country specific * Census

25. Global disability prevalence rates

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. Health Condition (disorder/disease) Participation (Restriction) Body Function & Structure (Impairment) Activities (Limitation) Personal Factors Environmental Factors 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. Health Condition (disorder/disease) Participation (Restriction) Body Function & Structure (Impairment) Personal Factors Environmental Factors 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% WG-11 Southampton, Bermuda

32. Severity within domains of functioning At least:

33. Severity in Population (%)

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-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

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 6/6/2014 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) Thestrategic 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 6/6/2014 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 6/6/2014 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 @ 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.)