Development of Child Disability Data Module for Global Monitoring

1. UNICEF/WG’s work and planned activities for the production of data on children with disabilities Claudia Cappa, Data and Analytics Section, UNICEF, NY Global Network on Monitoring and Evaluation for Disability-Inclusive Development: 1st meeting 6-7 October

2. Component 1: Development of survey modules Component 2: Guidelines for data collection, analysis and dissemination Component 3: Capacity building and technical assistance

3. UNICEF/WG Module on Child Functioning and Disability

4. Objectives of the module • Purpose • To to identify the sub-population of children (aged 2-17 years) with functional difficulties. These difficulties may place children at risk of experiencing limited participation in a non-accommodating environment. • Aim • To provide cross-nationally comparable data • To be used as part of national population surveys or in addition to specific surveys (e.g., health, education, etc.)

5. Development of the module • WG Workgroup on Child Functioning and Disability was established fall 2009 under the leadership of ISTAT (Italy) • UNICEF joined the Workgroup in early 2011 • First draft module presented Nov. 2011 at 11th WG meeting in Bermuda • April 2012: Rome meeting, revision 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 • September 2012-2015: validation process

6. Group members Mitchell Loeb (NCHS – USA) Claudia Cappa (UNICEF) Roberta Crialesi, Elena De Palma, Alessandra Battisti (ISTAT– Italy) Helen Nviiri (Bureau of Statistics – Uganda) SawsanDawood Mahmood (Ministry of National Economy – Oman) Sumaya Ahmed (Sudan Central Bureau of Statistics – Sudan) OlimpioZvale (Instituto Nacional de Estatistica – Mozambique) Xiaoying Zheng (Institute of Population Research – China) M’Banan Hippolyte Kone (Institut National de la Statistique – Cote d’Ivoire) SouradjiFankeba (General Directorate of Statistics – Togo) TomislavBenjak (Croatian Institute of Public Health – Croatia)

7. Construction of the module • Avoided a medical approach • Used the ICF biopsychosocial model • Used, when appropriate, questions already tested and adopted by the WG • Included the reference “Compared with children of the same age…” • Considered age specificity • Response options reflected disability continuum

8. Development of the module • Questions ask about difficulties the child may have in doing certain activities • Unless noted otherwise, all response categories are: • No difficulty • Some difficulty • A lot of difficulty • Cannot do at all 7. Refused 9. Don’t know

9. Selected domains • Seeing • Hearing • Mobility • Self-care • Communication • Learning • Emotions • Behaviour • Attention • Coping with change • Relationships • Playing

10. Cognitive Testing • Cognitive testing, 3 rounds of testing (2012-2015) • September 2012, India • January 2013, Belize • April 2013, Oman • July 2013, Montenegro • 2012/13/14/2015, USA • Comparative report completed and decisions made on final set of questions to be included in field testing

11. Field Testing • Field testing (2013-2015) • Independent field testing completed in Haiti, Cameroon, India, Italy, & Samoa • Ongoing: El Salvador, Myanmar, South Africa, Zambia, Mexico • Final methodological work in Serbia and Belize (tentative, MICS)

12. Module on inclusive education

13. Rationale • The WG and UNICEF have started working on an extended set of questions on child disability that will focus on environmental factors and participation • to provide information that can inform policy • to provide a statistical summary of environmental influences on participation in school • to identify areas with key bottlenecks

14. Basic principles • This set of questions will: • Be a module that can be added to another survey • To be used in conjunction with the module on child functioning and disability • Take approximately 10 minutes • Focus on formal education and environmental factors that influence participation • Be designed to capture the interaction between the participant and the environment

15. Completed tasks and next steps • Review of existing questions finalized (32 measures and 668 questions related to environmental factors reviewed) • Preparation of a draft module • Meetings with key stakeholders to finalize a module for testing: December 2014 • Cognitive and field testing (May 2015 – May 2016) • Module to be finalized in 2016

16. Domains Four domains related to environment: • Attitudes • School Environment • Accessibility • Affordability Questions for children in school and children out of school (reasons for not attending)

17. Examples of questions • Do you think children with physical disabilities should attend a regular school, special school for children with disabilities or not attend school at all? • Does (name) receive special services or assistance (speech therapist,support worker, sign language interpretation) in school? • How does (name) usually get to school? Using this means of transportation, how long does it usually take (name) to get to school?

18. Development of guidelines for data collection, analysis and dissemination

19. Manual for the implementation of the UNICEF/WG survey modules • Manual for survey designers • Instructions for interviewers • Tabulation plans • Syntaxes for data analysis • Template for reporting

20. Guidelines for producing statistics on children with disabilities • Objective: Provide guidance for those considering collecting, analysis and use data on children with disabilities • Discusses conceptual and theoretical issues related to measuring disability • Includes considerations for designing, planning, and implementing the collection of data on children with disabilities • Expected to be ready in early 2016

21. Table of contents Chapter 1: Overview Chapter 2: The importance of monitoring child development and disability Chapter 3: Concepts and definitions Chapter 4: Assessing factors of the environment and participation in child disability Chapter 5: Key domains of child development and disability Chapter 6: Review of methods and tools used to date to measure disability in children Chapter 7: Key considerations in planning, designing, and implementing the collection of data on disability in children Chapter 8: Data analysis and dissemination Chapter 9: Translating knowledge into action Chapter 10: Conclusions

22. Capacity Building and Technical Assistance

23. Workshops on the measurement of child disability Purpose: Tobuild/strengthen local capacity for data collection, interpretation, and use. Content: Concepts, models and measures of disability, survey design, data processing, data analysis, data dissemination and data use. Audience(s): National Statistics Offices, other Government staff, local researchers, DPOs, etc. Where: All 7 UNICEF regions (Latin America and the Caribbean, West and Central Africa, East and Southern Africa, Middle East and North Africa, CEE/CIS, East Asia and the Pacific, and South Asia) When: The workshops are expected to take place in 2015/2016 – 2 completed to date (one pilot, one regional, for a total of 140 participants)

24. THANK YOU!