International Day for Persons with Disability: Thirtieth Anniversary 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 Panel 2: Mainstreaming Disability in the Global Development Agenda

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. Sources of Disability Data

Registries Censuses Surveys Sources of Disability Data

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. Past Challenges

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 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. Moving Forward

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.

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

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 WG Products

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 Countries Who Have Tested or Used WG Short Set of Census Questions

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

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. WG Products, continued

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

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

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 countrys compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention. Standardized Data Collection Facilitates Reporting