International Day for Persons with Disability: Thirtieth Anniversary

1. International Day for Persons with Disability: Thirtieth Anniversary Panel 2: Mainstreaming Disability in the Global Development Agenda Jennifer H. Madans, Ph.D. National Center for Health Statistics, USA for the Washington Group on Disability Statistics United Nations, Department of Economic and Social Affairs New York, December 2, 2011

2. Sources of Disability Data • Different sources of data provide different kinds of information. • Can be a source of confusion. • Can provide a more comprehensive picture. • Need to understand advantages and limitations of each source. • Need to optimize the quality of data from each source.

3. Sources of Disability Data • Registries • Censuses • Surveys

4. Past Challenges Long-standing tradition of collecting disability information, however… • The complexity of disability concepts leads to confusing data. • Data collection methods have a major impact on resulting data. • Wide variations in population defined as “disabled”. • Data collections are often funder-initiated.

5. Moving Forward • Acknowledgement of the need for high quality information at national level that is also comparable across countries. • UN Convention on the Rights of Persons with Disability • World Report on Disability

6. Moving Forward • Incorporation of disability into ongoing national data collections. • Joint development of standardized and tested measures for use in countries. • Provision of technical assistance through workshops, meetings and site visits in order to facilitate the adoption of the question sets • Analyses of the resulting data.

7. The Washington Group on Disability Statistics (WG): Initial Objectives • To guide the development of a small set of general disability measures suitable for censuses, • To recommend one or more extended sets of items to measure disability in population surveys or supplements, • To use the ICF model as a framework to assist in the development of the measures, and • To address methodological issues associated with disability measurement.

8. The WG: 11 Years and Counting • The WG has held 11 meetings to date in all regions of the world • Washington DC, Ottawa, Brussels, Bangkok, Rio de Janeiro, Kampala, Dublin, Manila, Dar el Salaam, Luxembourg, Bermuda • NSO representatives from 116 countries have participated • Current members include 109 NSOs, 7 international organizations, 6 DPOs, the UNSD and other U.N. affiliates • Held two regional workshops: Africa and Latin America • Participated in five other regional workshops • Conducted cognitive testing of the short set questions in 15 countries, and the extended set in 15 countries • On-going provision of technical assistance, methodological training and fostering of international cooperation

9. WG Products • Short Set (SS): • Set of six disability questions recommended for inclusion on national censuses • SS adopted in 2006 • Now recommended for use in all national censuses in the UN Principles and Recommendations for Population and Housing Censuses

10. Countries Who Have Tested or Used WG Short Set of Census Questions • Argentina, Armenia, Bermuda, Brazil • Cambodia, Canada, China, Democratic Republic of the Congo • Fiji, Egypt, Gambia, Germany, Greece, Guatemala • Hong Kong SAR, India, Indonesia, Ireland, Israel, Ivory Coast • Kazakhstan, Kenya, Lesotho, Lithuania • Malawi, Malta, Mauritius, Mexico, Mongolia, Mozambique • Oman, Palestine, Panama, Paraguay, Peru, Philippines • Poland, Romania, Rwanda • Sierra Leone, Slovenia, South Africa, Sri Lanka • Tanzania, Uganda, United Arab Emirates, United States • Venezuela, Vietnam, Zambia

11. Countries Using the WG SS (or variants) in Current Census Cycles (n=31) Argentina † Aruba † Bangladesh Brazil Chad China Costa Rica † Czech Republic Fiji Israel † Italy † Ivory Coast Kazakhstan Malawi † Mexico Mozambique Netherlands Oman † Palestine † Paraguay Peru Philippines † Poland (2011) Rwanda (2012) South Africa † Sri Lanka Tanzania Tunisia Uganda Vietnam Zimbabwe (2012) • Information based on 2009, 2010, and 2011 country reports †Countries including the SS in their recent Census

12. WG Products, continued • Extended Sets (ES) • ES on Functioning (ES-F) adopted in 2010 • Will provide broader survey measures of this population • Additional ES on Children, Environment, and Participation are currently under development and testing • Methodological work to assess the measures and their performance as they are incorporated into data collections.

14. Final Rounds of Standardized Testing • WG/BI/UNESCAP Testing 2009 • Cognitive tests in 9 countries (Mongolia, Maldives, Sri Lanka, Philippines, Cambodia, Kazakhstan, United States, Canada, South Africa) • Field tests in 6 countries (Mongolia, Maldives, Sri Lanka, Philippines, Cambodia, Kazakhstan) • WG/BI European Testing 2010 • Cognitive tests in 7 countries (France, Germany, Italy, Portugal, Spain, Switzerland, United States) • Questions added to the 2010 U.S. National Health Interview Survey

15. WG Products, continued Reports completed: Disability Information from Censuses, prepared for DPOs Development of an Internationally Comparable Disability Measure for Censuses, prepared for NSOs Monitoring the UN Convention on the Rights of Persons with Disability Understanding and Interpreting Disability as Measured using the WG Short Set of Questions The Measurement of Disability: Recommendations for the 2010 Round of Censuses Draft report prepared: Development of Extended Sets of Disability Measures for Surveys

16. Standardized Data Collection Facilitates Reporting • Using standardized questions makes it possible to provide comparable data cross-nationally for populations living in a variety of cultures with varying economic resources; • Data can be used to assess a country’s compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention.