**Report of the Washington Group (WG) on Disability Statistics**

**Purpose**:

The main purpose of the WG is the promotion and co-ordination of
international co-operation in the area of health statistics by focusing
on disability measures suitable for censuses and national surveys which
will provide basic necessary information on disability throughout the
world. More specifically, the WG aims to guide the development of a
small set(s) of general disability measures, suitable for use in
censuses, sample-based national surveys, or other statistical formats,
for the primary purpose of informing policy on equalization of
opportunities. The second priority of the Washington Group is to
recommend one or more extended sets of survey items to measure
disability, or principles for their design, to be used as components of
population surveys or as supplements to specialty surveys. These
extended sets of survey items are intended to be related to the general
measure(s). The WHO International Classification of Functioning,
Disability and Health (ICF) has been accepted as the basic framework for
the development of the sets. All disability measures recommended by the
group, general or extended, will be accompanied by descriptions of their
technical properties, and methodological guidance will be given on their
implementation and their applicability to all sections of the
population. The WG will disseminate work products globally through the
world-wide web.

**Year organized**:

2001

**Participants**:

Representatives of national statistical offices, international
organizations, and non-government organizations have participated in the
last 4 meetings.

[Current country representatives include:]{.underline} Australia,
Austria, Belgium, Brazil, Canada, Columbia, Czech Republic, Denmark,
Egypt, Estonia, Finland, France, Greece, Hong Kong (China), Hungary,
India, Ireland, Israel, Italy, Latvia, Macao (China), New Zealand,
Norway, Palestine, Peru, Philippines, Poland, Romania, Sierra Leone,
Slovenia, South Africa, Spain, St. Lucia, Sweden, The Netherlands,
Turkey, Uganda, United Kingdom, and the United States.

[Current international and non-government organizations
include:]{.underline} European Disability Forum, Eurostat, International
Federation for Spina Bifida and Hydrocephalus, International Development
Project (IDP), International Labor Organization (ILO), Organization for
Economic Cooperation and Development (OECD) Health Policy Unit,
Partnership Health EU, Rehabilitation International, United Nations
Statistics Division, United Nations Economic Commission for Europe
(UNECE), United Nations Economic and Social Commission for Asia and the
Pacific (ESCAP), United Nations Economic and Social Commission for
Western Asia (ESCWA), World Bank, and World Health Organization (WHO).

**Past meetings / major outcomes**:

[First meeting: February 18-20, 2002 in Washington, DC, USA]{.underline}

It was agreed that: 1) it is important and possible to craft
internationally comparable general disability measures; 2) short and
long set(s) of measures that are inter-related are needed; 3) ICF model
will be used as a framework in developing disability measures; and 4)
census questions are the first priority 5) next steps were established.

[Second meeting: January 9-10, 2003 in Ottawa, Canada]{.underline}

A link was established between the purpose/s of a general disability
measure and aspects of measurement. A conceptual matrix was developed
linking the purpose of a general disability measure with conceptual
definitions and question characteristics. An empirical matrix was
developed evaluating the characteristics of general measures currently
in use according to the dimensions of the conceptual matrix. Both
matrices helped the WG to identify gaps in disability measurement.

[Third meeting: February 19-20, 2004 in Brussels, Belgium]{.underline}

It was agreed that disability is multidimensional, thus, we cannot
ascertain the single "true" disabled population. Different purposes are
related to different dimensions of disability or different conceptual
components of disability models. A position paper outlining major
classes of purposes of an internationally comparable general disability
measure and prioritizing the purpose of equalization of opportunities
was discussed by the group. Equalization of opportunities was agreed
upon and selected as the purpose for development of an internationally
comparable general disability measure. A set of appendices accompanied
the paper, the first provided ICF terms and definitions of the relative
ICF concepts; the second provided guidelines for translating those
concepts into survey measurement items. A workgroup was designated to
generate a draft set of questions related to this purpose. In addition,
two other workgroups were formed to propose methods for implementing the
general disability measure and to propose an approach for developing
extended measurement sets related to the general disability measure.
Finally, a plan for WG governance was adopted.

**Products**:

Proceedings (presentations and papers) from the first three meetings,
reports to the UN Statistical Commission, final meeting reports, and
information on upcoming meetings can be accessed through the Washington
Group website, currently hosted by the National Center for Health
Statistics, U.S.A.
[(http://www.cdc.gov/nchs/citygroup.htm)](http://www.cdc.gov/nchs/citygroup.htm).

**Report of the 2004 meeting**:

The fourth meeting of the Washington Group on Disability Statistics (WG)
was held September 29 -- October 1, 2004 in Bangkok, Thailand, hosted by
UNESCAP and the Thai National Statistical Office. The meeting was
attended by 40 persons representing 23 countries (Africa, Asia, Europe,
Middle East, North America, Pacific, South America), and 5 international
organizations (UN and affiliates, World Bank, ILO, WHO, Rehabilitation
International). The meeting was organized in 7 sessions comprised of
presentations of draft position papers followed by focused discussion
addressing specific session objectives. Session outcomes included key
agreements, products, and a work plan. Objectives for the 4^th^ meeting
were to:

1)  Present work on development of the general disability measure
    (workgroup 1).

2)  Discuss the proposed plan for implementing the general disability
    measure (workgroup 2).

3)  Discuss the proposed approach for development of extended
    measurement sets (workgroup 3).

4)  Discuss methodological issues related to full population coverage.

5)  Discuss strategic issues.

There were several key outcomes of the meeting. First, a draft set of
questions for the general disability measure was agreed upon
conceptually, but wording revisions are required prior to pre-testing.
Workgroup 1 (on the general measure) will revise wording of the proposed
questions with input from WG members and decide on the final questions,
including clarification of revisions made, by December 2004. The
question set will undergo cognitive and pre-testing. Issues requiring
testing were delineated. Questions based on six domains at the
borderline of the ICF components of body functions/impairments and
activities/limitations will be pre-tested as potential candidates for
inclusion; four domains are considered the core (walking, seeing,
hearing, and cognition), but two additional domains will also be
examined (self-care and communication). A severity scale will be used in
the response categories.

A new workgroup (on implementation) was formed to develop six protocols
necessary to effectively implement the general disability measure. The
protocols include: 1) establishing objectives and an evaluation plan for
cognitive and pilot testing; 2) establishing plans for report writing
including tabulation and analysis; 3) establishing plans for cognitive
testing; 4) translation; 5) enumerator training; and 6) sample design
issues (such as the number of households to be covered and
identification of other census questions to be included with the
disability questions on the pilot test). Existing protocols, such as the
UN guidelines and the EU translation protocol will be used for
reference. The protocols are to be completed in a four month timeframe.
Countries willing to participate in pre-testing were identified. In view
of the comprehensive work involved in the development of these protocols
and the strict deadlines, the WG proposed that this group should work in
conjunction with a consultant.

Workgroup 3 (on extended measurement sets) will initiate development of
the first two extended sets of measures on disability. It was agreed
that the purpose of the extended measurement sets is assessment of
equalization of opportunities. The extended sets are intended as modules
that will go into other existing national surveys. The workgroup will
develop one extended set of questions expanding on the six domains
identified for the short general measure (more detail) and adding
questions on domains that reflect other basic activities. A second
extended set will be developed encompassing more complex
activities/limitations, participation/restrictions and environmental
factors. The justification for the extended sets will be specified. This
workgroup will also identify indicators that will be used to demonstrate
equalization of opportunities. For the next meeting, members of this
workgroup will develop a paper examining the domains of participation
and environment and how they relate to existing questionnaires in
population wide surveys.

The WG agreed that the issue of persons excluded from national surveys
is important and that differences in subpopulations that are excluded
from national surveys across countries may affect the comparability of
disability measures. A new workgroup on methodological issues was formed
to address the topic of full population coverage as well as other
methodological issues including the effects of proxy and non-response,
the effects of questionnaire administration mode, and the potential for
harmonization of health and disability data using modern calibration
techniques. Additional questions will be included on the next country
report to identify groups excluded from national surveys. At the next
meeting, the workgroup will examine whether it is feasible to include
these subpopulations and whether the proposed questions on disability
are relevant for these populations.

UNSD will work on analyzing the WG country reports to better understand
disparate prevalence estimates on disability. They will report on this
work at the 5^th^ WG meeting. The 5^th^ WG meeting will be held
September 21-23, 2005 in Rio de Janeiro, Brazil. Objectives for the
5^th^ WG meeting are to:

1)  Present work on continued development of the general disability
    measure including revisions based on the results of cognitive and
    pre-testing (workgroup on general measure);

2)  Present work on the written protocols and plan for implementing the
    general disability measure including lessons learned from
    pre-testing (workgroup on implementation);

3)  Present work on the development of the extended measurement set and
    the associated paper on its' relationship to participation and the
    environment (workgroup on extended measures);

4)  Discuss methodological issues related to proxy and non-response and
    to continue discussion of full population coverage (workgroup on
    methodological issues);

5)  Discuss strategic issues.

In keeping with UN guidelines, issues of gender bias and other potential
sources of bias will be a consideration of all WG work. Executive
summaries of last three meetings are posted on the WG website along with
presentations and papers from the meetings:
h[ttp://www.cdc.gov/nchs/citygroup.htm]{.underline}

**WG Points of contact: Washington Group Secretariat (NCHS, U.S.A.)**

Beth Rasch

Associate Service Fellow\
National Center for Health Statistics\
3311 Toledo Road, Room 6110\
Hyattsville, MD 20782 (USA)\
(Phone) 301-458-4248\
(Fax) 301-458-4037\
(Email) ERasch@cdc.gov

Barbara Altman

Special Assistant for Disability Statistics\
National Center for Health Statistics\
3311 Toledo Road, Room 6111\
Hyattsville, MD 20782 (USA)\
(Phone) 301-458-4654\
(Fax) 301-458-4038\
(Email) BAltman@cdc.gov\
\
Jennifer Madans\
Associate Director for Science\
National Center for Health Statistics\
3311 Toledo Road, Room 7202\
Hyattsville, MD 20782 (USA)\
(Phone) 301-458-4500\
(Fax) 301-458-4020\
(Email) JMadans@cdc.gov