REPORT OF THE FIRST REGIONAL MEETING OF THE WASHINGTON GROUP ON
DISABILITY STATISTICS

JUNE 20-22, 2005

NAIROBI, KENYA

**Purpose**

The main purpose of this meeting was the promotion of a small set of
questions on disability (suitable for censuses) that can be used in many
countries around the world. The aim is to use the data obtained from
using these questions to produce comparable statistics on disability. A
series of pre-tests of the core set of disability questions developed by
the Washington Group (WG) is to be conducted in an attempt to arrive at
a final set of questions. The purposes of this workshop are to: bring
together persons representing countries interested in adding disability
measures to censuses or improving measures already in place; familiarize
countries with the goals of the WG; introduce the general measure
designed by the WG and the rationale; encourage pre-testing of questions
and provide the materials and training to facilitate pre-testing;
develop connections between countries in the region to further
facilitate the testing process; and to get feedback from countries on
the question set as well as country specific conditions that need to be
considered by the WG.

**Participants**

Fifteen representatives from the national statistical offices of 13
countries participated in the workshop along with one representative of
an international disability organization and 7 presenters. Country
representatives included the Democratic Republic of Congo, Gambia,
Lesotho, Malawi, Mauritius, Seychelles, Sierra Leone, Sudan, South
Africa, Tanzania, Uganda, Zimbabwe, and the host country, Kenya.

**Summary of agenda**

The meeting hosts opened the workshop followed by a review of workshop
objectives. The work of the WG was reviewed and the participants were
introduced to the core set of questions on disability developed by the
WG (general measure) as well as the rationale for the approach.
Implementation protocols that were developed to test the core set were
presented including: objectives of the test and evaluation plan;
question by question specifications; translation protocol; plans for
cognitive testing; plans for field testing; enumerator training; and
plans for data analysis and report writing. UNSD reviewed their work on
a questionnaire designed to collect data on disability from countries
for use in the Demographic Yearbook. The World Bank reported on pilot
testing for a qualitative survey in Kenya. In the wrap-up session,
countries were asked to respond to specific questions about their
willingness to and opportunities for pre-testing the WG questions in
their countries, and were asked for feedback on the questions, the test
protocols, and the WG approach to disability measurement including the
selected purpose of measurement.

**Issues**

[Introduction, purpose and rationale for the question set, and work of
the WG]{.underline}

There was significant discussion about the purpose for disability
measurement that was selected by the WG and the implications of this
choice. There was concern expressed over portions of the population that
may be missed using the proposed questions. In particular, groups with
certain specific health conditions would be missed by the proposed
questions, yet these groups may also encounter significant barriers to
participation. How to deal with the type of disability or the presence
of multiple disabilities was raised (how can the interviewer determine
this). The issue was raised that respondents may have difficulty
answering the questions such that their responses fit into one of the
categories. The question of how to capture the country specific context
was raised; in other words, how to capture factors outside of disability
that would aid in the interpretation of the disability statistics that
are generated (such as non-disability related factors that might affect
employment rates). Participants expressed concerns about the lack of a
time reference (i.e. problem lasting 6 months or more). Finally, there
was a recommendation about the need for survey modules on disability in
addition to census questions because of regularity of these surveys in
comparison to the census (both are needed). The need to link
statisticians with representatives attending the UN Statistical
Commission meetings was recommended by meeting participants.

[Implementation protocols]{.underline}

In general, it was deemed important to involve persons with disabilities
and stakeholders in the testing process. Many practical issues were
raised; in particular, the need for technical assistance was mentioned
repeatedly. There was interest in having more technical assistance than
the WG is currently capable of providing. Requests for technical
assistance encompassed the need for assistance to conduct the test,
conduct a full survey, and use of the data once the census and/or survey
is completed. There was concern about raising money to conduct the
tests. The question of how to handle non-response and refusals was also
raised.

1\) Objectives of test and evaluation plan

There was general agreement on the objectives of testing and the plan
for evaluation. No specific questions were raised.

2\) Question by question specifications and translation

There were many practical issues raised around the issue of translation.
Since many African countries use languages that are not written, the
question of how to address translation in these situations presents a
dilemma. Questions were raised about identifying the best person to
perform the translation (i.e. professionals, stakeholders, or staff of
national statistical offices). Since some countries have many native
languages, the participants asked about the number of languages that
should be used for translation. Participants expressed support for the
use of conceptual translation. The importance of adequate training for
enumerators, process for verifying the translation, and the importance
of the pre-test for translation issues were noted.

3\) Cognitive test

It was emphasized that cognitive testing was typically conducted in a
small sample of 10-30 participants. During cognitive testing the
respondents should be probed for an explanation about why they responded
as they did, and then see if the explanation matches the respondent's
answer to the question. Among the participants there was a perception
that the probes might be leading such that they might introduce bias.
There was concern that persons with disabilities might not wish to
reveal the difficulties they have due to stigma. Questions were raised
about how to manage data entry for the cognitive test, perform the
analysis, and what to do with the data after the analysis. The need for
both country specific analysis as well as comparative analyses across
countries from the cognitive test was noted.

4\) Plans for field test and sample design issues

There were many questions about the nature of the sample (purposeful
versus random) as well as the size of the sample needed for the tests.
There was concern about how to deal with (identify) different types of
disability, multiple disabilities, and levels of severity of disability.
These were raised as important issues to address. There was concern
raised about proxy versus self-response and whether this should be
considered during analysis. It was noted that aspects such as the format
of the testing (Census or Survey; Special Study or Small Sample) and
methods of dealing with non-responses and refusals needs to be taken
into account for the field test. In particular, in some cultures, it may
not be viewed as appropriate for women to answer for the household and
therefore they might refuse. Cultural issues like this need to be
considered. There was concern raised about the order of questions in
regards to repetitiveness and in regards to whether on set of questions
may condition responses to the next set.

5\) Enumerator Training

It was suggested that disabled persons should be used as enumerators,
and that the word 'disabled' should be avoided during the interview as
much as possible because of the negative connotation. The
confidentiality clause should be quoted to the respondent. The
enumerators should be trained to make disabled respondents feel
comfortable and willing to respond to the interview.

6\) Plans for tabulation, analysis and report writing

It was suggested that prevalence rates should be computed from most
inclusive to least inclusive including multiple disabilities. The data
should be compared to previous data and prevalence rates. It was
suggested that the main aspect of analysis include: 1) correlation
analyses between extended and core sets, 2) comparisons of differences
in different populations i.e., by age, sex, rural vs. urban residence;
and 3) compare results across countries.

7\) UNSD questionnaire

The presentation on Statistics on Human Functioning and Disability
stressed the need to measure human functioning and disability and
summarized the recommendations provided by the United Nations Guidelines
and Principles for the Development of Disability Statistics. It also
provided an overview of the collection of data on disability in the
participating countries on the basis of the information collected prior
to the Workshop through the UNSD Pilot Questionnaire on Human
Functioning and Disability Statistics. The presentation served as a
basis for the discussion of the UNSD Pilot Questionnaire on Human
Functioning and Disability Statistics. For this purpose, three working
groups were formed for discussion of a set of exercises and questions
previously prepared by the United Nations Statistics Division (UNSD).
The replies to these questions and the overall comments of the
participants were then discussed by the whole group. During the
discussion, a number of proposals were made for a more appealing format
of the UNSD Pilot Questionnaire on Human Functioning and Disability
Statistics, for an improved wording of the questions and for additional
data tables. In particular, the participating countries provided the
following suggestions:

1.  To include other relevant variables in the collection of data, such
    as cause of disability and type of disability, as well as
    educational attainment and occupational status of persons with and
    without disabilities;

2.  To review and reword the questions asking for information on the
    questions used for determination of the prevalence rates in order to
    better capture the manner in which the rates were calculated;

3.  To review the question on type of data source to encompass the use
    of screening questions and follow up surveys;

4.  To improve the format of the UNSD Pilot Questionnaire on Human
    Functioning and Disability Statistics to make it less crowded;

5.  To send the UNSD Pilot Questionnaire on Human Functioning and
    Disability Statistics to NSOs every five to ten years,
    electronically and in hard copy;

6.  To disseminate the data and metadata collected through the UNSD
    Pilot Questionnaire on Human Functioning and Disability Statistics
    by internet, electronically, and in hard copy.

[Wrap-up discussion and conclusion]{.underline}

There was general agreement with the proposed questions and purpose of
the measure from participating countries and the testing protocols made
sense to them. In order to facilitate implementation of the tests,
countries were asked to respond via email to the following questions:

1\) Are you interested in conducting a pre-test of the Washington Group
proposed Census questions?

2\) If so, what opportunities are there for conducting this pretest? For
example, are there possibilities for attaching this test to an already
planned test or could a separate test be done?

3\) What parts of the pretest could you conduct (cognitive, field,
both)?

4\) When could such a test be done? We are most interested in finding
out about tests that could be conducted by October of 2005 and between
October and Jan 2006.

5\) What kind of financial support would be needed? (I realize you will
have to estimate this)

6\) What kind of technical assistance would be requested?

7\) What surveys or census activities are upcoming? What are their
timelines?

8\) What surveys are being considered? What do they need to move forward
(e.g., approval, funds, TA)?

9\) Which of these could disability question testing POSSIBLY be
associated with?

10\) Are you interested in implementing a separate disability survey?
What do you need to move forward?

All 13 countries attending the workshop responded to these questions and
agreed to pre-test. Fifteen countries were offered funding to conduct
pre-tests including the 13 countries that participated in the workshop
and 2 countries from the African/Middle East region that could not
attend the 1st workshop but attended the 2nd workshop. Specifically,
\$5000.00 was offered to Kenya, Gambia, and Vietnam to conduct cognitive
and field tests; \$1000.00 was offered to India, Philippines,
Seychelles, Lesotho, Malawi, Congo, Mauritius, Uganda, Egypt, South
Africa, Palestine, and Tanzania to conduct cognitive portion of the
pre-test. South Africa can conduct the full pre-test without WG funding.
Countries were asked to submit test plans to the implementation
workgroup for review prior to receipt of funding. To date, eight
countries have submitted test plans.

To the extent possible, the WG will provide technical assistance for
pre-tests to countries that request it via email and/or phone contact.
The possibility of hiring a consultant for this purpose with funds from
the World Bank DGF will be explored.

[Next Steps for the Implementation workgroup and participating
countries]{.underline}:

1.  Cognitive and field test protocols: the analytical plan and the
    minimum target sample size need to be developed in more detail.

2.  A translation protocol will be developed for cognitive test; Income
    categories at end of cognitive test to be country specific and
    developed by each country.

3.  The workgroup will consider issues about provision of technical
    assistance and how these issues will be included in questions to
    countries about conducting the pre-tests

4.  Funding: Countries were advised to look for funding in existing
    programs to build statistical capacity. They were also encouraged to
    contact the regional World Bank team in Africa since they may be
    able to provide additional support.

5.  An introduction for the cognitive test is to be drafted to assist
    users with understanding the purpose of the test and to distinguish
    the cognitive test from the field test.

6.  Field test issues such as timing, funding, technical assistance need
    to be thought through by each country.

The next regional meeting will be held in Rio for two days followed by
three days for the 5^th^ Annual Meeting of the Washington Group.