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Advancing Disability Statistics: Accomplishments and Future Directions of The Washington Group

Jennifer H MadansAssociate Director for Science, National Center for Health Statistics, USA and

Chair, Washington Group on Disability Statistics

MEDD Global Network October 2015 1

• June 2001: UN International Seminar on the Measurement of Disability

• WG established as a City Group under the aegis of the UN Statistical Commission to:• address the need for population based measures of

disability• foster international cooperation in the area of health

and disability statistics• produce internationally tested measures to monitor

status of persons with disability• incorporate disability into national statistical systems

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The Washington Group (WG)

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Membership of the WG• Current representatives from national

statistical authorities include 118 countries and territories

• Past and present representatives of international and national organizations representing persons with disabilities, and several national government and non-government organizations

• Other international organizations including among others: EUROSTAT, ILO, OECD, World Bank, WHO, UNICEF, and UNESCAP

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• Population-based data - that can be disaggregated by disability status - are necessary to both implement and monitor post-2015 SDGs and the UN CRPD.

• The ICF provides a commonly accepted model to support national data collection.

• The WG has developed a short set of questions that provide the means to collect internationally comparable data based on the ICF model to fulfill the monitoring function.

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Need for National Data to Support Monitoring

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• By standardizing these questions it will be 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 development goals the Convention and, over time, their improvement in meeting requirement

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Standardized Approach to Monitoring

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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

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…from Concept to Operational Definition

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WG Short Set 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.

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% Employed

7

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…from Operational Definition to Measurement

Because of a Health problem:

1) Do you have difficulty seeing even if wearing glasses?

2) Do you have difficulty hearing even if using a hearing aid?

3) Do you have difficulty walking or climbing stairs?

4) Do you have difficulty remembering or concentrating?

5) Do you have difficulty with (self-care such as) washing all over or dressing?

6) Using your usual language, do you have difficulty communicating (for example understanding or being understood by others)?

Response categories:

No difficulty; Some difficulty; A lot of difficulty; Cannot do at all

Zambia - Survey of Living Conditions among People with Disabilities in (2006)

Core DomainSome

difficultyA lot of

difficultyUnableTo do it

Vision 4.7 2.6 0.5

Hearing 3.7 2.3 0.5

Mobility 5.1 3.8 0.8

Remembering 2.0 1.5 0.3

Self-Care 2.0 1.3 0.4

Communicating 2.1 1.4 0.5

At least:

ISI 2015: Rio De Janeiro

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Defining a disability continuum and an indicator of disability status

The WG questions fulfil two specific data needs:• to describe disability data as a continuum of

functioning based on responses and ranging from no difficulty to some difficulty, a lot of difficulty and unable to do at all, and

• to define a cut-off (or a set of cut-offs) that can be agreed upon internationally in order to disaggregate other information (e.g. access to education, employment) by disability status

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Creating a disability dichotomy• The WG recommends that the following

cutoff be used to define the populations with and without disabilities for the purpose of international reporting and comparability.

• The sub-population with disability includes everyone with at least one domain that is coded as a lot of difficulty or cannot do at all.

Zambia - Survey of Living Conditions among People with Disabilities in (2006)

Person with disability has: N %

at least 1 Domain is ‘some difficulty’ 4053 14.5

at least 2 Domains are ‘some difficulty’ 3090 11.0

at least 1 Domain is ‘a lot of difficulty’ 2368 8.5

at least 1 Domain is ‘unable to do it’ 673 2.4

ISI 2015: Rio De Janeiro

Data Contribute to Implementation and Monitoring UN Convention

• Provides baseline for comparisons across years, as the implementation of policies take hold.

• Allows for comparison between disabled and nondisabled populations on important components of participation including education, employment, housing, income, etc.

ISI 2015: Rio De Janeiro

Population aged 15 years + who never attended school, by disability status (%)

ISI 2015: Rio De Janeiro

• The short set of 6 questions can be added to on-going data collections

• Can be used in any national survey (health, labor force, income & expenditure, DHS etc.)

• Once they become integrated as part of regular statistical systems – disaggregating outcomes (education, employment etc.) by disability status becomes a matter of routine in the same way that data are disaggregated by age and gender.

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Mainstreaming disability statistics

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Countries using the WG short set or some variant in the most recent census cycle* (n=46)

*Based on information obtained from 2009 - 2015 country reports

Countries indicating that the WG short set was included on previous censuses, national surveys, disability modules or pre-tests* (n=53)

*Based on information obtained from 2009 - 2015 country reports

Countries indicating that the WG extended set on functioning was included as a module on national survey or as part of a disability survey*

Dominican RepublicFinland (subset included on 2014 EHIS)

SamoaUnited States

*Based on information obtained from 2015 country report

Extended Set

• Having successfully developed and tested the short set of questions for censuses, the WG moved on to extended sets

• Modular approach• Taken together these will form the core of a

disability survey• Modules can be used individually or grouped

to meet the needs of the data collection

ISI 2015: Rio De Janeiro

Vision Hearing MobilityCommuni-

cationCognition/

rememberingUpper Body

Learning/ understanding

Affect (6) Pain (7) Fatigue (7)ADL/ IADL

Getting Along with

People

Major Life Activities

Participation in Society

1Short Set

Single Questions (1) b b

2Extended Set

Multiple Questions (1) a a c a/c a

3Use of Assistive Devices

Micro-E (2)Sign language

4Functioning with

Assistance, Micro-E c

Children and Youth (3) d

Age at Onset

Cause

Duration

Impact (limit ability to carry out daily activities) N/A N/A N/A N/A

Meso-Environment (4)

Macro-Environment (5)

Basic Activity Domains

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9

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

10 Question Set currently under development

Capacity Performance

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5

7

Complex Activity / Participation Domains

Row

QuestionnaireTopic/Type

Body Function Domains

Rationale for Extended Set on Functioning:

• To include additional domains that were not included in the Short Set (upper body functioning, affect, pain, and fatigue)

• To include more information per domain (for example, use of assistive devices/aids, and functioning with and without assistance)

• To develop a single measure, per domain, for un-accommodated functioning

• To use the additional information per domain to develop a continuum of functioning that would supplement the Short Set

ISI 2015: Rio De Janeiro

Short Set of Questions – six questions recommended for Censuses. (Recommended for use in all national censuses in the UN Principles and Recommendations for Population and Housing Censuses)

Extended questions set on functioning for national surveys

Child Functioning and Disability Module (final testingInclusive Education Module (under development) Labor Force Participation (under development) Social Participation Module (under development)

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WG Disability Modules:

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• UN Expert Meeting Paris, July 2014: use for disaggregating indicators for SDGs

• Department for International Development/UK: use in all programs and projects that include disability

• Australian Government Department of Foreign Affairs and Trade: support capacity building and the implementation in censuses and surveys and include in program evaluation

• UNSD and UNECE/CES: use in the 2020 round of censuses.

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Growing endorsement and adoption of WG short set

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The Road Ahead

With the support of partners, the WG plans to embark on a series of regional workshops and network building that will:

• Build Capacity in data analysis, implementation and dissemination, and

• Provide Training & Technical Assistance to assist countries in adopting the WG questions and institutionalizing the collection of disability data.

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• Include Washington Group short set of questions in Censuses or national surveys used for monitoring

• Analyze data to be useful for policy and program development

• Tabulate data in a consistent format and report to UN for international comparability

• Provide needed technical assistance through publications and regional meetings

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Focusing on analysis, implementation and dissemination

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For more information…• The WG reports to the UN Statistical Commission.

The WG annual report to the Commission is available at:

http://unstats.un.org/unsd/statcom/doc14/2014-10-WashingtonGroup-E.pdf

• Executive summary of last 14 WG meetings posted on the WG website along with presentations & papers from the meetings:

http://www.cdc.gov/nchs/washington_group.htm2604/21/23