**Washington Group on Disability Statistics (WG)**

**Draft position paper on extended disability measurement set(s)**

**Version 9 September 2004**

**1 Introduction**

*by Marijke de Kleijn*

*This part should deal with:*

*- objectives of WG*

*- general measure versus extended measure*

*- with reference to existing papers*

*- ICF as the framework*

During the Brussels meeting last February we decided to create a
Workgroup 3 in order to "prepare a position paper proposing an approach
for the development of extended measurement set/s related to the general
disability measure/s".

Members of Workgroup 3:

Carlotta Besozzi, Euroforum

Don Lollar, USA

Gunilla Davidsson, Sweden

Emmanualle Cambois, France/Euroreves

Ros Madden and Xing-yan wen, Australia, AIHW

Ken Black, Australia, ABS

Marijke de Kleijn, Netherlands, convenor

Nenad Kostanjsek and Somnath Shatterji have been informed and invited to
send comments.

In order to prepare the paper on time for the Bangkok meeting the
convenor developed an outline of the paper and a tight timetable. The
members agreed with the timetable and commented the outline. A revised
outline was sent to the members including names of persons responsible
for a chapter and the potential content of each chapter in key items.
The contributions by the members were combined into one paper. There was
no time for an overall discussion by the group based on the complete
paper. So the content should be seen as food for discussion, not as a
set of proposals agreed by the work group.

**Proposal**

To discuss this draft paper and decide for each chapter how to proceed
by who and when.

**2 Purpose of extended sets**

*by Xing-yan Wen, AIHW*

*This part should include:*

*- which purpose for internationally comparable disability data to be
collected by extended measurement set(s) do we want to serve; preference
for same (chosen) purposes for general measure (see paper and report WG3
meeting)!?*

*- To be taken into account: work done by AIHW*

The equalisation of opportunity is the fundamental goal for people with
a disability. To consider this goal as relating to the purpose for
general measures for census (Workgroup 1) is to ensure that the
questions identify a broad subpopulation group containing as many people
with a disability as possible, and that the data collected are
comparable across countries.

**Proposal**

Keep the same purpose for the general and the extended sets.

If this proposal is accepted it may be necessary to consider some
specific additional purposes to assist in the development of extended
questions for surveys. There are a number of issues relating to the
extended sets of questions which require us to identify, and agree with,
some specific purposes as guidelines:

\*       We need to consider why we need these extended sets, what the
limitations of the general questions are, and what is needed in the
extended questions. To identify some specific purposes may assist in
resolving issues discussed in Chapter 3 on relationship between general
and extended questions, for example, whether the extended sets of
questions should be used together with the general questions as part of
the data collections or as a follow-up survey where the general
questions are used as screeners.

\*       To agree on some specific purposes may also facilitate the work
in various subsequent chapters, in particular chapters 4 and 5 at this
stage, as these chapters address various technical and context issues.
For example, different sets of questions may be developed for different
specific purposes (Chapter 4); when existing/recommended items/questions
to be examined (Chapter 5), they need to be considered in relation to
specific purposes identified and agreed in Chapter 2.

\*       There are multiple specific purposes for the use of the general
questions as well as the extended questions. To tailor the extended
questions to some specific purposes may assist statistical systems of
individual countries in justifying the collection of disability data
using these measurements in light of limited resources and competing
demands regarding issues of national priorities for different countries.

\*       We have a clear emphasis on the international comparability in
designing both the general questions and extended questions.
Nevertheless, we may need to consider some flexibility with the extended
questions, which enables individual countries to meet their special
needs. For example, we may consider a core set of questions which can
ensure the comparability, and several variations from the core set for
specific purposes of individual countries.

\*       The ICF framework encompasses the complex and multi-dimensional
experience of disability. It is not possible for the general census
questions to cover detailed domains of various dimensions of the ICF.
The extended questions may cover more detailed domains for specific
purposes.

\*       We need to consider what we are really going the measure in
terms of the components of the ICF. Is it necessary to have different
focuses in terms of the ICF components between the general census
questions and the extended survey questions?

\*       We suggest to clearly state that the implementation of ICF in
disability data collections is one of specific purposes. In fact this is
one of the main purposes for establishing the WCG.

If the workgroup agrees that we should discuss specific purposes in
Chapter 2, further work may include:\
\*       To list potential specific purposes for the extended sets of
survey questions;\
\*       To make recommendations for prioritising the potential specific
purposes; and\
\*       To consider the relationship of specific purposes and the
issues in various subsequent chapters.

**3 Relationship general and extended**

*by Gunilla Davidsson*

*This part should include issues such as:*

***-** are we talking about the extend of functioning/disability using
certain indicators or do we also want to measure the type of
functioning/disability and the type of environmental
barriers/facilitators?*

*- extended measure more detailed info*

*- related to general measure or not (preference: extended measure to be
a more detailed indicator allowing to move towards a higher level of
measurement as outlined in paper WG3.6a*

*- extended set as a follow-up after the general measure as a screener*

*- extended set used in a separate study in order to know the content of
the general set*

*- extended set can be seen as a more detailed indicator or as an
information source for separate items included in the set*

**General and/or extended items**

One or two general questions might be used to measure disability in a
population or as screeners in order to get a sample frame of disabled
persons for a separate survey. Data source is most often the census or a
large sample based national survey.

Extended sets of items/questions might consist of a few additional
questions in a census, a module in a survey on another subject than
disability or an independent survey (short or comprehensive).

## The general question as a condition to extended sets of questions 

The phrasing of the general question(s) WG will recommend, will also
govern the extended set or sets of items WG will produce and offer.

*Examples:*

A general question like the one used by Eurostat in the Minimum Health
Module (MHM) -- "Do you suffer from any long-term or chronical disease?"
-- will need an extended set of questions to assure that the "right"
groups of disabled persons are included.

A general question like the following (based on a WHO question) used by
Statistics Sweden, has a quite different approach and another type of
shortcomings. -- "Now we have some questions to disabled people. By
disabled people we mean persons with reduced vision or hearing, speech-
or voice problem, mobility problems, allergy or any type of
psychological problems. You can also have diabetes, a heart- or lung
disease, stomach-bowels disease, psoriasis, epilepsy, dyslexia or
something similar. According to this definition, do you belong to the
group with disability?" A question like this is very time-consuming
(which is just one of the shortcomings).

A third type of general question is used by Statistics Canada and the
Australian Bureau of Statistics. They have very broad questions with a
rather "vague" phrasing which seems to be the best way to catch the
intended groups of disabled persons in those countries. But this type of
broad and vague question still needs to be tested in other countries to
see if it can be used as a general question recommended by WG.

## Which type of extended sets of items should WG try to come up with?

Our ultimate goal ought to be to fulfill as many needs and demands as
possible. This means that we have to develop more than one extended set
of items (and finally reference questions in English) to use either as
follow-up after a general measure or as an independent module or survey.

The extended items have to fit different needs in different countries. A
country recently suffering from war or any other major catastrophe
(earthquake etc) is probably having a quite different need of extended
items than a country which regularly runs a health survey and now wants
to use the new ICF concepts for comparative reasons. And according to
which type of extended set of items is used the field of application
varies:

\- to get a broader general information by more items which all are
separate sources of information

\- to get a more detailed information about an existing
variable/indicator

\- to use extended items in order to create a new more detailed/complex
variable/indicator

This means that we are talking both about extended items on
functioning/disability and items for capturing activity and
participation. We are also talking about to come up with extended sets
of items that are adapted to or harmonized with the ICF concepts.

The following figure from paper WG 3.6a can serve both as a tool and a
goal in our work when it comes to questions about activity and
participation. The goal is of course to fill as many "boxes" as
comprehensive as possible.

![](media/image2.wmf)

**One way to reach the goal**

WG will have to create a data bank with extended sets of items to be
recommended in different contexts. And also offer references to means of
translating the questions, keeping the content at the same time as
taking care of cultural and language discrepancies (= no literal
translation).

The extended sets of items should be constructed in order of rank,
starting with the most important and overall indicators. If the
countries keep the ranking when introducing new items, the most
important variables/indicators will in due time be comparable for many
countries around the world.

The degree of detailed information that will be comparable around the
world is depending on how comprehensive extended sets of items WG will
work out for recommendation.

A big task for WG will be to decide upon which extended sets of items or
which "boxes" will have the highest priority. Another big task will be
to collect validated questions, select the possible ones and have them
tested cognitively to assure they are usable all around the world.

Below is an example (using only three countries) of a rather "simple"
item, but still there will be several considerations to make in deciding
which items to rank, in which order and which questions to recommend.

##### Example: Hearing

**Items to be ranked: Examples of questions from surveys in Canada,
Denmark and Finland:**

*Minor* hearing problem Are you usually able to hear what is said in a
group

in group conversation conversation with at least 3 other people without
a

hearing aid?

> Are you normally able to hear what is said in a normal conversation
> between 3 persons or more (with hearing aid if normally worn) with no
> difficulty with minor difficulty, with major difficulty or not at all?
>
> Can you without difficulty hear what is being said in
>
> a conversation among several people? (with or without a hearing aid)?
>
> Are you usually able to hear what is said in a group conversation with
> at least 3 other people with a hearing aid?

*Major* hearing problem Are you usually able to hear what is said in a

in group conversation conversation with one other person in a quiet room

> without a hearing aid ?
>
> Are you usually able to hear what is said in a conversation with one
> other person in a quiet room with a hearing aid?

Hearing problems *in noisy* How do you hear talk/speech in a noisy or
sonorous

surroundings surrounding:

> I hear without difficulties
>
> I can hear, but there are problems discern speech
>
> very poorly or not at all?

*Severe* hearing problem Are you able to hear at all?

## Usefulness

It is obvious that the usefulness of standardized (in context) extended
sets of variables/-indicators will fulfill many functions at the same
time. We will get comparability between a lot more countries than today,
the ICF concepts will ("automatically") be introduced and used, each
country will save time and money by using "ready-made" sets of
variables/indicators and research on an international level will be
provided with data of much better quality than today.

**Proposal**

-   The Washington Group has to decide upon continuing in developing one
    set of extended questions or more than one at the same time.

-   We prefer the development of one at the same time.

-   The WG should decide which kind of sets should be developed
    (impairment + basic activities versus complex activities +
    participation)

-   Or start with one set of extended questions (not too few nor too
    detailed) covering all areas (physical, mental, social); the first
    set can serve as a starting point for more detailed questions or for
    additional sets in the future.

-   If there is a strong wish for a set of extended questions adapted
    especially for countries which have suffered from wars and where
    priority for more specific data is high, we could have two parallel
    working groups from the beginning.

**4 Required characteristics**

*by Ken Black, ABS*

*This part should include issues such as:*

*- description of existing experience and a proposal how to include this
in our work*

*- related to ICF concepts, terms and codes (choice of domains)*

*- nature and scope of extended sets*

*- fit into sample based population surveys (lay interviewers) without
HES*

*- including "mental" issues*

*- enough expected numbers for the items in sample based population
surveys*

*- attention for children, elderly*

*- attention for possible use in institutionalized population*

*- sets as "indicator"versus set of items which are interesting on its
own (core versus longer list?)*

*- "can" versus "do" option (capacity versus performance)*

*- different items/sets for different purposes and settings?*

*- proposal to work on two sets: one for function/structure cq
impairment and basic activities cq activity limitations, and one for
complex activities (limitations and participation (restriction) and
environment?*

*- criteria and methodology for item reduction*

*- take into account work done by Euroreves and ABS*

This section of the paper aims to describe desirable characteristics of
a population survey instrument (or an extended module) designed to
produce statistics about people with a disability. The ideas are based
on experience gained by the Australian Bureau of Statistics (ABS) in
conducting national disability surveys.

**ABS disability survey 2003**

In Australia, the most recent national disability survey, conducted in
2003, involved a multi-stage, stratified, random sample of some 40,000
people. Data was mainly collected by interviewers, using computer
assisted interviewing (CAI) techniques. A mail-out mail-back method was
used for people who live in cared accommodation (ie those in the
institutional sector). The questionnaires for people in cared
accommodation forms were completed by staff at the selected
establishments.

Interviewers were selected from the ABS labour force interviewer panel
and provided with three days of survey specific training. Most
interviewers would not have had any formal medical training. The average
household interview time for the survey was 44 minutes, with the longest
being nearly five hours. The sample size allowed for detailed
tabulations to be released at the national level and for very broad
geographic areas. Data for small geographic regions or for small
population sub-groups (e.g. those with less common rare types of

disability) are not released due to sampling errors associated with the
estimates.

For the 2003 survey a set of 17 screening questions were used to help
identify people with a disability. Based on the ICF, the questions cover
most domains in the body function, activity and participation components
of the ICF, and also include questions related to the \'products and
technology\' and \'support and relationships\' domains within the
environmental factors component. As such they refer to various
impairment types, activity limitations, participation restrictions, the
need for assistance, specific health conditions and peoples use of aids
and equipment. They are designed to identify as many people with a
disability as possible within enumeration constraints. Screening
questions which are general in nature e.g. \'whether any household
member has chronic or recurrent pain or discomfort?\' are followed by a
second stage filter of \'whether the person identified is restricted in
everyday activities because of the pain or discomfort?\'

In practice the screening questions are asked of the first responsible
adult in households selected in the sample. This respondent is asked to
answer the screening questions for themselves and all the other people
with whom they live. People identified by the screening question are
referred to as being in the output \'disability\' population and are
each individually selected for a personal interview. These people are
then asked a more detailed array of questions, many involving further
ICF related concepts. It should be noted that some countries, such as
Canada and New Zealand, do not use this approach. Rather they use census
data to target the sample for a subsequent disability specific survey.

**ABS list of characteristics**

The following points list characteristics, or design features, of the
Australian disability survey that might be used in other contexts:

1 The design must serve key user information requirements, align with
ICF concepts, and be cost effective.

2 The questions should cover various ICF components and domains so that:
all people with

disabilities of interest can be identified, counts of people with
disabilities can be aggregated

and disaggregated in a variety of ways to meet different user needs.
This includes providing a

means of categorising people by type and severity of disability.
Sub-groups of key policy

concern can be separately identified

3 Interview questions should be designed for use by interviewers
accustomed to doing household surveys but with no formal medical
training Question wording should be concise and use simple language to
ensure that all respondents can readily understand what is being asked

4 To obtain a good understanding of the nature of the disability the
survey should seek to obtain information about underlying medical
conditions. (Note: in the ABS disability survey, for each screening
question, whenever a person is identified as having a disability, they
are asked a further question to identify any underlying medical
condition and responses are coded to a collapsed version of ICD10).

5 Combinations of questions asking about specific
limitations/restrictions can be used to help identify individuals with a
disability. Questions which are general in nature e.g. \'whether any
household member has chronic or recurrent pain or discomfort?\' should
be followed by a second stage filter of \'whether the person identified
is restricted in everyday activities because of the pain or
discomfort?\'.

6 Questions should as far as possible be used to identify mutually
exclusive groups however to help ensure all people of interest are
included.

7 Constraints on interview time, respondent burden, and overall survey
budget including processing and output will also have an impact on the
extent of component/domain coverage.

8 A question on \'receipt of treatment or medication\' should be
included, after all other screening questions, to help capture people
not identified as having a disability with the more specific screening
questions.

9 Additional questions should be used to help ensure the identification
of people with a mental illness. A specific question: \'need for help or
supervision due to mental illness or condition\' should be included.
Note: those with a mental illness can also be identified from the
question on \'receipt of treatment or medication\' if the follow-up
question on underlying cause is asked.

10 When asking about very young children (0-4 year olds) appropriately
modified question wording should be used to ensure that children with
\'real\' activity limitations /participation restrictions etc are
correctly identified.

11 Consideration should be given to asking older people additional
questions to help identify those with a disability. (Note: Australian
experience has shown that when people aged 60 years and over are asked
the well established Instrumental Activities of Daily Living IADL
activity limitation questions (e.g. meal preparation, housework,
paperwork, transport etc) many are identified as having a disability
even though their responses to the standard disability status screening
questions informed that they did not have a disability. Testing has
shown that a significant proportion of \'older\' people view themselves
as being \'the same as everyone else their age\' and so do not associate
with general questions on impairments and/or limitations or restrictions
but will respond to very specific questions on limitations or
restrictions in specific domain areas.

12 The questions should be concerned with what people do/don\'t do, in
their own environment and not some hypothetical circumstance to identify
their disability status. (Note: the ICF draws a distinction between
\'capacity\' (what a person can do in a uniform or standard environment)
and \'performance\' (what a person usually does in their own
environment) to help identify a person\'s disability status. For
interviewer-based or self-completion household surveys, the
\'performance\' approach is recommended. It is easier to obtain
information about what actually happens than what could theoretically
happen).

13 Surveys focussed on people with disabilities should, where possible,
not be restricted to private households but also include people in cared
accommodation (i.e. in the institutional sector). While the
institutional sector may only represent a small share of the total
population a large share of people with a more profound disability may
be living in cared accommodation (in Australia nearly 30% of the
population with a profound disability lived in cared accommodation).

**Disability module**

In Australia the \'disability module\' used in some social surveys uses
a collapsed version of the disability screening questions used in the
national disability survey. It includes a shortened version of the
questions on activity limitation/need for assistance in the core
activity areas of self-care, mobility and communication to provide a
measure of level of severity. While the question set is smaller a design
principal is that the groups being measured are conceptually consistent
with the larger set and also consistent with the ICF.

A copy of the disability module is provided attached.

(Embedded image moved to file: pic25722.pcx)

(Embedded image moved to file: pic12048.pcx)(Embedded image moved to
file:

pic26363.pcx)

See for further information ABS Web Site: www.abs.gov.au

**Proposal**

To discuss whether the Australian issues are relevant for our work and
if so how to apply.

**5 Existing/recommended items/questions to be taken into account**

*by Marijke de Kleijn*

*This part should include issues such as:*

*- Description of existing material and proposal how to use this for our
work*

*- UN guidelines*

*- WHO ICF checklist annex 9*

*- EURO-REVES recommendations*

*- Eurostat, OECD, WHO-Euro books*

*- Existing validated instruments (eg SF-36 and WHO-DAS)*

*- Other*

*- Take into account work done by Euroreves*

*- Use of existing instruments: check relation with ICF as framework and
purpose in chapter 2.*

**Proposal**

1 discuss how we should use the UN guidelines (as a reference or as the
recommended methodology)

2 workgroup 3 prepares a matrix with ICF dimensions/domains versus ICF
checklist annex 9, recommended Eurostat items, OECD items, WHO-DAS
items, SF-36 items in order to distinguish common elements

3 Emmanuelle Cambois recommends to Workgroup 3 how to take into account
the Euroreves experiences in choosing relevant items

4 as a result there will be a list of recommended items which should be
confronted with the results of other chapters of this paper.

**6 How to assess needs and create involvement of**

*by Carlotta Besozzi for A and Don Lollar for B*

*This part should include a proposal how to organize the involvement of*

*A persons with disability (in the work of this working group and in
surveys in the field (seealso paper prepared by Gerry Hendershot and
Kristin Mulhorn)*

*B and key policy decision makers.*

**6A How to assess needs and create involvement of people with
disabilities (in this working group and surveys)**

There are different levels in the involvement of people with
disabilities. The first is political and has to do with the recognition,
enshrined in the United Nations Standard rules on equalisation of
opportunities for people with disabilities and reinstated in the draft
UN convention on the rights of people with disabilities, that nothing
about disabled people should be decided without disabled people (rule
18). Representatives of organisations of disabled people should be fully
involved in all phases of decisions on disability measurement and in
particular in the purpose for such measures..

For the disability community it is critical that research must be
focused on the social model of disability, whereby disability is
understood as a social construct, not necessarily a consequence of
impairment. Also it is important to realize that an impairment based
perception as historical may change and has to change. As our extended
measurement set will be based on the ICF model, disability must be
understood as a multidimensional concept relating to individual
situations, but also activities and areas of life in which they
participate, as wells as the facilitating or incapacitating role of the
environment on all these elements.

People with disabilities should be involved in the design, testing and
assessment of measures. in order to capture in the most effective way
data on people with disabilities, it is critical to involve those to
whom the measure is targeted to. Only people with disabilities
themselves have the necessary experience to analyse the level of equal
opportunities or identify obstacles to their participation, the
objectives at the core of our measurement set.

False assumption and wrong understanding in the development of a
questionnaire can end in misleading results. Content is never neutral.

People with disabilities should be considered as experts in their own
right and involved on an equal basis.

It is important to build a structured and constructive dialogue between
researchers and statisticians and representatives of organisations of
people with disabilities in order to achieve mutual understanding.

An effort is needed on both sides to reach understanding of the
mechanisms and limitations of measurement, but also on separating
technical and content issues.

Positive experiences of such dialogue are documented in the presentation
by Gerry Hendershot and Kristin Mulhorn, which compares the methodology
used in 6 countries[^1], and in a report by Nolan, Watson, Williams and
Gorby in designing and piloting an Irish disability research instrument
based on WHO ICF[^2].

Both studies highlight the need to make such dialogue accessible, by
providing for instance different formats of documents or ensuring
accessibility of meeting rooms. Such measures should be also taken into
account in the design of questions. Also in this respect the
contribution of disability experts will prove critical.

One of key challenges is to encompass the diversity of people with
disabilities in the questions asked, by going beyond physical
disabilities. Also it is critical to fill the gap between the perception
of the health and social professionals and the experience of people with
disabilities themselves on questions such as severity of disabilities,
health assessments, etc. (e.g. a blind born person would not consider
his/herself as severely disabled\..., or the confusion in certain
definitions: mental instead of learning disabilities)

Disability representatives should be able to comment both on content and
format of the questions.

Both studies previously highlighted underline the need to develop
questions related to participation , as well as on environment in all
main areas of life. This is consistent with the ICF, to which the
disability movement has actively contributed.

There is also a need to improve the negative approaches to disability in
the ways questions are formulated.

In the screening phase it is vital that the purpose of measurement is
well explained to respondents and a positive approach to disability is
highlighted. It is important to remember that disability is a
stigmatizing concept in most cultures, and that respondents because of
negative experiences might be also negatively biased towards social or
health researchers.

We also recommend the involvement of disability organizations from
different groups in the testing of sample questions. Also shortcomings
should be reassessed with disability organisations and a second test
should be made.

The accessibility of questions is a key issue. not only they should be
made available in different formats and there should be the possibility
of sign language interpretation for those who need this, but the
questions should be also translated in easy to understand language for
people with learning disabilities. There are organisations of people
with disabilities that have the necessary expertise for this.

Once the questions are finalised we also recommend the use of
interviewers with disabilities, as well as disability awareness training
for all other staff involved.

 

**Proposal**

The principle of consultation and dialogue with representative
organisations of disabled people is among the key principles of
Governance adopted by the Washington City Group at its last meeting in
Brussels. Such recommendations should be translated in its concrete work
towards the preparation of an Internationally comparable disability
measure and in the derived national work.

-   Members of the WG have a critical role in their country in the
    development of a fruitful dialogue between statisticians and
    researchers and the disability community at national level.

-   Members of WG should be encouraged to establish contacts with
    representative national umbrella organisations of disabled people in
    view of the preparation of their position for the Washington City
    Group.

-   National disability organisations should be involved in the
    implementation of the general measurement and extended sets at
    national level:

    -   in the preparation of a sound translation into national context
        by ensuring a positive approach to disability

    -   in ensuring the accessibility of the questionnaire (limiting
        therefore proxy responses) and

    -   in testing.

-   The training of interviewers should include a disability awareness
    training prepared with the participation of people with
    disabilities. Statistical offices and research bodies should be
    encouraged to recruit people with disabilities as interviewers.

[]{.mark}

[]{.mark}

[]{.mark}

**6B How to assess needs and create involvement of key policy decision
makers**

**Principles**

Several principles underlie this section. First, the explicit
relationship at work in this exercise is that between information and
decision making. That is, one assumes that the more relevant and
comprehensive the information, the better the opportunity to understand
a group of people. Second, there is the premise that if information and
understanding have occurred, pertinent policies and actions can emerge
that will positively influence people's lives. The third premise
underlying this section is that the UN Standard Rules should provide the
common reference for validating the need for extended disability
measurement across countries.

**Assessing needs of key policy decision makers**

We begin with the assumption that key policy makers may include elected
officials, government staff, and disability advocates---regardless of
country. The needs of these groups will usually differ. In addition,
there are substantial differences in the needs of decision makers in
developing and developed countries. Officials in developing countries
will suggest that extended data on disability is irrelevant in view of
the massive social problems confronting the general population. More
comprehensive data on the characteristics or conditions of those
citizens with disabilities will only detract from the larger issues of
poverty, poor health, and unemployment among the population. Their needs
focus on the economic resources to raise the standards for the total
population, arguing that this will also help those with
disabilities---without any specific data.

The fundamental influences contributing to decisions for elected
officials are economic balanced by concern for the welfare of those who
are in need of services. Policy makers must be clear that any data, but
particularly expanded data for a subpopulation, will contribute to
positive outcomes for their constituents, and be economically feasible.

Government officials responsible for data and programs addressing
disability issues are often at odds, with statistical agencies being
influenced by the relative strength of agencies competing to insert
survey questions, the cost of additional questions, the space needed for
questions, and the potential economic impact on government agencies.
Governmental program officials, on the other hand, might be motivated to
better understand the needs of those participating in or assisted by
disability-related programs. This data would help them initiate or
revise programs or policies related to the programs.

Advocates are usually focused on the unmet needs of people with
disabilities in their country. The more relevant data available to
describe this group, along with data comparing people with disabilities
to the broader population, allows any disparities to be revealed.
Advocates can justify expanded data collection, even in the face of
increased costs, by arguing that increased participation, for example in
work settings, will defray increased survey costs. In addition, they may
suggest that this data collection, even if it is costly, is a matter of
human rights\--trumping economics with rights.

**Creating involvement of key policy decision makers**

Involvement of key policy decision makers in the process of inclusion of
extended disability survey sets rests on political and interpersonal
skill. Key policy makers usually who are elected officials must be
persuaded that extended disability data will benefit them and their
constituents. Cultivating their involvement in the political/scientific
process of including expanded disability questions will require building
relationships. This process is most effectively implemented by members
of the disability community. Officials, whether elected or not, are
often influenced by personal interactions with those affected by the
data or policies or programs. While there is always a danger that
conflicting agendas will be highlighted, it is clear that people in any
minority group are the best advocates for their own cause---in this
case, more and better data to affect policy and programs.

A second strategy, however, should supplement this approach. Government
officials who have an understanding of disability issues should also be
involved in building a professional/scientific/policy case for extended
question sets. This process is often laborious and painfully slow, but
is required if internal credibility for inclusion of questions is to be
built.

Disability advocates must be convinced that spending energy to get more
questions so that more data is generated is worth their effort. Too
often, advocates see data that do not match their experience or that
they do not believe accurately represents the condition or
characteristics of people with disabilities in their country. It often
requires identifying individuals within the disability community who can
see the importance of relevant data and are willing to put their
influence in that direction.

The bottom line is that a coalition of government officials,
researchers, and advocates must develop idiosyncratic strategies in the
light of their circumstances. The elements of strategy must include the
set of questions (prioritized according to importance in each country),
partners, methods of getting questions vetted and by whom, and funding
mechanisms where necessary. Inclusion of extended disability measurement
sets is usually not easy and requires acceptance of the often long-term
work needed for the efforts to come to fruition.

**Proposal**

1 \"Given thee diverse policymakers\' needs and approaches, is there a
role for he WG?  The WG, under the auspices of the UN, and with
concurence from WHO, can influence national policy makers.  UN/WHO
support alone provides credibility for some.  Beyond organizational
support, the case for inclusion of extended disability sets, beyond the
basic set, must be made on substantive grounds, including economic,
programmatic, and human rights data. 

2 A \"white paper\" specifically targeted to policy makers from the WG
should include available current data on disability prevalence, the
shortcomings and implications of the paucity of appropriate extended
data for disability and rehabilitation/education/social welfare uses as
well as adherence to the UN Standard Rules. 

3 The WG, formally or informally, could set up a mechanism by which WG
members could act as consultants for each other as deliberations begin
in each country around extended sets.  The substantive and emotional
support for what is usually a protracted time period would be welcomed
by each member, realizing that support is available.  The basic set will
often be difficult to negotiate\--extended sets will be even more
difficult. 

4 Finally, the WG will need to share their experiences real-time with
one another so that members can learn from one another how best to
implement these extended sets. \"

**7 Methodological issues**

*This should include issues such as:*

*a full population coverage (problems: children sample problem and
special instruments, institutionalized population how to interview,
homeless people how to find them, selective non response eg by
blindness, deafness, mental problems, etc); this issue will be covered
by Howard Meltzer session during the WG4 meeting*

*b cultural appropriateness/sensitivity issues*

*c other issues such as: proxi interviews, scoring system, recommended
grouping and tables*

**Proposal**

No action at this moment.

Wait for results of Bankok meeting.

**8 Testing**

*This should include issues such as:*

*- initial testing (cognitive)*

*- larger scale piloting*

*- feed back of testing results into redesign and possibly further
testing*

**Proposal**

No action for this moment.

Wait for developments during next meeting

**9 Implementation issues**

*This part should include issues such as:*

*- Validation of the sets(s)*

*- Translation*

*- Training for uses, coding, analyzing, etc*

*- Educational/explanatory material*

*- How to reach those who should apply the sets(s) and to get them
interested*

*- See also papers by Howard Meltzer regarding quality assurance*

*- Comparability of data to be treated by WHO (Nenad/Somnath); is there
a need for any post harmonization if the work aims at pre-harmonization
(reference instruments!)*

**Proposal**

No action for this moment.

Wait for developments during next meeting.

**10 Next steps**

**Proposal**

To be decided in the WG4 meeting after discussion of the position paper

**Annexes**

***(separately mailed)***

[^1]: [Australia, Canada, France, the Netherlands, South Africa, and
    United States.]{.mark}

[^2]: [Hendershot-Mulhorn, Assessing recommendations for increasing rate
    of response by persons with disabilities. Comparison across six
    national surveys and various authors, Designing and Piloting an
    Irish Research Instrument based on WHO ICF, National Disability
    Authority, Ireland.]{.mark}