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 1: Improving Data and Statistics on Disability

Disability is a complex concept Involves the interaction between an individuals functional characteristics and their environment This presents difficult measurement challenges. The result has a been a confusing array of non- comparable statistics. Challenges in Disability Data Collection

3 Global Disability Prevalence Rates* High-income countriesLow-income countries Year% % Canada Kenya Germany Namibia Italy Nigeria Netherlands Senegal Norway South Africa Sweden Zambia Spain Kenya UK Zimbabwe USA Malawi * Sources and methodologies are country specific.

However, national data on the population with disabilities are needed by countries: To support the development and evaluation of policies and programs to enhance social participation, and To both implement and monitor the UN Convention on the Rights of Persons with Disabilities. Challenges in Collecting Disability Data

The International Classification of Functioning, Disability and Health (ICF) provides a commonly accepted model to support national data collection. The Washington Group work seeks to provide internationally comparable data based on the ICF Model to fulfill the monitoring function. Tools to Meet the Challenges

June the UN Intl Seminar on the Measurement of Disability recommended the development of principles and standard forms for global indicators of disability censuses. The WG, comprised of representatives from NSOs, has pursued these goals over the past 10 years The Washington Group on Disability Statistics (WG)

The WG has… Fostered international collaboration, Untangled the web of confusing and conflicting disability estimates, Addressed methodological issues, Produced internationally tested measures to monitor outcomes by disability status. The Washington Group on Disability Statistics (WG)

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 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 WG Products Useful for Monitoring

The Definitional Paradox… There is no single operational definition of disability Different operational definitions lead to different estimates The question you are trying to answer (the purpose) will determine which definition to use Need to understand the choices that are being made when choosing a definition Moving from Concept to Operational Definition

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. Employed (%)

Makes it possible to provide comparable data cross- nationally for populations living in a variety of cultures with varying economic resources; Use data to assess a countrys compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention. Equalization of opportunity -- one of the general principles listed in Article 3 (General principles) and the focus of Article 5 (Equality and Non-discrimination) Standardized Approach to Monitoring the UN Convention

Population age 15 years + who never attended school, by disability status (%) 2/8/2014

World Report Recommendations and the Washington Group In order to meet the WR recommendations and improve national disability statistics it is important that the routine collection of disability data become incorporated into national statistics programs. The questions developed by the WG and BI provide a core set that can be expanded to meet country needs NSOs are encouraged to actively participate in the WG as means of improving data quality, comparability, and availability.