Mainstreaming Disability Data Collection and Reporting: Transitioning from data collection to data analysis and data presentation Jennifer H Madans/Mitchell Loeb National Center for Health Statistics, USA and Washington Group on Disability Statistics 5/28/2018

WG Data Collection Tools: Short set on functioning: adopted in 2006 measures difficulty functioning in 6 universal, basic activities Extended set on functioning for adults: adopted 2010 WG/UNICEF Module on Child Functioning: adopted in 2016 WG/UNICEF Module on Inclusive Education: in testing WG/ILO Disability module for inclusion on labor force surveys: in testing Module on Mental Health: under development Modules on environment & participation: under development 5/28/2018

The Washington Group Short Set… has been used in censuses or surveys in over 78 countries has been promoted by international aid programs, (DFID/UK and DFAT/Australia), as the means to collect disability data in all programs and projects, has been introduced as the means for collecting disability data by the UN Statistical Division (UNSD) and the UN Economic Commission for Europe for the 2020 round of censuses. 5/28/2018

Workshops and Expert Consultations: Nairobi, Kenya 06/2005 Mumbai, India* 09/2012 Bishkek, Kyrgyz Republic 12/2006 Belmonpan, Belize* 01/2013 Sarajevo, Bosnia & Herzegovina 02/2008 Amman, Jordan 05/2013 Bangkok, Thailand 04/2008 Podgorica, Montenegro* 07/2013 Ohrid, Macedonia 11/2008 Apia, Samoa* 06/2014 Dhaka, Bangladesh 08/2009 Hammamet, Tunisia* 02/2015 Muscat, Oman 10/2010 04/2013 Geneva, Switzerland* 07/2015 Damascus, Syria 12/2010 NY, New York* 06/2016 Sharjah, UAE 05/2011 Nadi, Fiji 07/2016 Bogotá, Colombia 07/2012 08/2013 Westchester, NY* 10/2016 5/28/2018 *in collaboration with UNICEF

Planned workshops: UNSD: regional ‘stock-taking’ workshops UNICEF: regional workshops on the measurement of disability WG: regional implementation workshops Pacific (Fiji) – 2016 Middle East – early 2017 Caribbean – spring 2017 Asia or Africa – fall 2017 Open meeting – place and date to be determined 5/28/2018

Selected joint activities: Handicap International: initiatives in the Andean region, east Africa, in emergency response situations; and training (development of e-learning modules) US AID: development of a disability module to include the WG Short Set in the Demographic and Health Surveys (DHS) UNICEF: deployment of the Module on Child Functioning in the Multiple Indicator Cluster Surveys (MICS) 5/28/2018

Selected joint activities: ITU: participation at the 4th Meeting of the Expert Group on ICT Household Indicators 7th Meeting of the ITU Expert Group on Telecommunication/ICT Indicators Global Action on Disability (GLAD) Network: to provide support and coordination in enhancing the inclusion of persons with disabilities in international development and humanitarian action. 5/28/2018

Volume on the history and accomplishments of the WG: International Measurement of Disability: Purpose, Method and Application The Work of the Washington Group B. M. Altman (Editor) Springer (Publisher) Publication: June, 2016 5/28/2018

Disaggregation requirements Need a straightforward and simple way to identify persons with disabilities: the WG questions identify those at greater risk than the general population for limitations in participation. Need indicator/outcome data (education, employment, income, ‎health care access) from data collections (census/surveys) that also include the above disability identifier. 5/28/2018

Disaggregation in US NHIS data NHIS 2013: 18-64 years of age Weighted % Disability status: WG Short set: Cut-off is at least a lot of difficulty in at least 1 domain Without disability With Disability Employment Status Last Week=Working 73.4 29.1 Current every day smoker 14.5 27.8 Covered by health insurance? (Yes) 79.5 81.0 5/28/2018

Reporting data on disability during the transitions to new data collection methods Currently available data have been collected using different approaches and different data collection tools and are, therefore, not comparable cross-nationally Reporting of estimates that are not comparable reduces confidence in the data Should we only report comparable data or find a way to clearly report data that are not comparable? 5/28/2018

Option for reporting disaggregated data that maximizes comparability and transparency Table 1: Results from Censuses/Surveys Disaggregation variable Employment Status: % working Determination of disability: # of questions Response options: Cut-off in bold Country Year With disability Without disability  Type of Disability/Impairment 4 Yes/No Morocco 2004   5 Cambodia 2008 2 Hungary 2011 Activity limitation 3 Panama 2010 Malawi 9 No difficulty Some difficulty A lot of difficulty Completely unable Poland 2009 Washington Group (modified) 6 Philippines 7 Mexico Washington Group (as intended) Yes, some difficulty Yes, a lot of difficulty Cannot do it at all Turkey 5/28/2018

For more information about the WG visit our new website: http://www For more information about the WG visit our new website: http://www.washingtongroup-disability.com/ Questions: WG_Secretariat@cdc.gov 5/28/2018