International Day for Persons with Disability: Thirtieth Anniversary

Jennifer H. Madans, Ph.D.National Center for Health Statistics, USAfor the Washington Group on Disability Statistics

United Nations, Department of Economic and Social AffairsNew 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)

•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

RowVision (1) Hearing (1) Mobility

Communi-cation

Cognition/ remembering

Upper Body

Learning/ understanding

Affect Pain FatigueADL/ IADL

Getting Along with

People

Life Activities

Participation in Society

Short SetSingle Questions (1) d a d

Extended SetMultiple Questions (1) c c c c

Use of Assistive DevicesMicro-E (2)

Functioning with Assistance, Micro-E (2)

5 Age at Onset

6 Cause

7 Duration

8 Impact ? ? ?

9Meso-Environment

(3)

10Macro-Environment

(4)

ICF Chapter Reference - Activities/Participation

ICF-1 ICF-1 ICF-4 ICF-3 ICF-1,2 ICF-4 ICF-1 ICF-2 ICF-5,6 ICF-7 ICF-8 ICF-9

Capacity Perform

ance

Basic Activity Domains Complex Activity Domains

(5) See Note below

Washington Group/Budapest Initiative/UNESCAP Activities and Workplan

QuestionnaireTopic/Type

To be obtained through other sources, not personal survey data collections

b

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 country’s compliance with the UN Convention and, over time, their improvement in meeting the requirements set out under the Convention.

Standardized Data Collection Facilitates Reporting