**Methodological Preparations for an Irish Post Census**

**National Disability Survey in 2006**

*Paper for Washington Group on Disability Statistics*

*5^th^ Meeting*

*Rio de Janeiro, September 2005*

**Authors:**

Mr Gerry Brady,

Senior Statistician,

Central Statistics Office,

Email: <gerry.brady@cso.ie>

Website: [www.cso.ie](http://www.cso.ie/)

Dr Anne Good,

Senior Researcher,

National Disability Authority,

25, Clyde Road, Ballsbridge,

Dublin 4

Email: <agood@nda.ie>

Website: [www.nda.ie](http://www.nda.ie/)

**Methodological Preparations for an Irish Post Census**

**National Disability Survey in 2006**

## 

In 2004, the Irish Government decided that the Central Statistics Office
(CSO) would carry out a National Disability Survey (NDS) after the 2006
Census of Population, in order to establish the prevalence and impact of
disability and to identify areas in policy and service provision where
improvements were needed.

> The National Disability Authority had formally proposed this survey to
> Government in 2002. The NDA had followed up this proposal during
> 2002-2004 by conducting a large-scale consultation exercise, and by
> commissioning a pilot survey. Building upon this work, the parent
> Government Department of the NDA -- Justice, Equality and Law Reform
> -- proposed to Government in 2004 that a National Disability Survey
> should be carried out, using the results of the pilot as a starting
> point. The Government agreed this proposal and indicated that the
> survey should be conducted by the CSO as a follow-on survey after the
> 2006 Census of Population. It stipulated that the questionnaire should
> be developed in consultation with relevant bodies including Government
> Departments and the National Disability Authority. The costs for the
> survey were estimated to be in the region of €2m depending on the
> sample size.

Preparations are now under way for the 2006 NDS, the first of its kind
in Ireland. This paper presents a brief background to disability data
collection in Ireland, and discusses various aspects of the
methodological preparations, namely:

1.  The NDA Pilot Disability Survey and Consultation Exercise,
    2002-2004;

2.  Census of Population 2002;

3.  Census of Population 2006;

4.  Post survey micro data linkage to 2006 Census file

5.  NDS 2006 sample

6.  NDS 2006 questionnaire;

7.  Ethical practice in disability surveys.

The Paper draws on the experience of the 2003 NDA pilot exercise as well
as the progress in the current preparations for the NDS 2006 in order to
address these topics. The Paper ends with a brief Conclusions summary.

#### Background

To date, only a partial picture of the prevalence and impact of
disability in Ireland has been available and, as a consequence, policy
and service planning are inadequately informed. Yet, as far back as
1996, this issue had been identified by the Commission on the Status of
People with Disabilities[^1] as needing urgent action.

The National Disability Authority (NDA) was established in June 2000 to
"*promote and help secure the rights of people with disabilities".* It
quickly concluded that one of the major barriers to the successful
achievement of its mission was this lack of comprehensive data on the
lives of people with disabilities in Ireland.

> In the intervening years this lack of data has been somewhat addressed
> by the inclusion of disability questions in the 2002 Census, and in a
> number of national surveys including the EU-wide labour force survey
> (QNHS)[^2]. In addition, for health service planning purposes, a
> National Intellectual Disability Database of those using or assessed
> as needing intellectual disability services, has been in place since
> 1996. Work is in progress on compiling a National Physical and Sensory
> Disability Database, to assess the service needs of people aged under
> 65 with these particular disabilities
>
> Nonetheless, the NDA took the view that an NDS was also needed to
> provide a comprehensive picture of the prevalence and experience of
> disability. The NDS will probe the labour force status and living
> standards of those affected by disability, their need for health,
> education and personal social services, their participation in
> different areas of life, and the contextual factors and constraints
> which impact on their daily lives. This will provide a rounded picture
> of both the prevalence of disability, and its impact on persons with a
> disability. It will, therefore, provide key data to policy makers to
> enable them to ensure that there is greater equality and integration
> of persons with a disability into all aspects of society.

**1. NDA Pilot Disability Survey and Consultation Exercise, 2002-2004**

During 2002-2004, in preparation for a decision by Government on the
proposed NDS, the NDA consulted with a broad range of stakeholders and
commissioned a pilot exercise, which involved drafting and testing a
disability survey questionnaire. It was decided that this pilot
questionnaire would be based on the new International Classification of
Functioning, Disability and Health (ICF), which had been developed by
the World Health Organization during the 1990s. The ICF's main
innovation was to incorporate a social understanding of disability and
it was developed in co-operation with international disability
organisations.

The WHO General Assembly formally adopted the ICF in 2001. Its aim is to
provide a language and framework for the description of health and
health-related states that can be used consistently across different
countries and settings. Such a framework is indispensable if valid data
comparisons within and across countries are to be possible. Central to
the ICF definition of disability is the relationship between the
individual (with an impairment) and environmental factors (physical,
social and attitudinal). If a person with a given impairment lives in an
environment characterised by barriers at every level their performance
and participation will be restricted; but if a person lives in a
facilitating environment this will serve to increase their performance
and participation. This understanding of disability paralleled that
being adopted by the Irish state and seemed to make the ICF worth
investigating as a useful framework for Irish disability data
collection.

#### Pilot Questionnaires

Two questionnaires were developed and tested during the pilot, one for
adult respondents and one for children. The process of designing the
pilot questionnaires involved a literature search of international
instruments and recent methodological papers. A key aspect to the design
process was how best to link the ICF into the questionnaire in terms of
the elements to choose and the level of detail necessary.

Three surveys from overseas were particularly useful to initial design.
These were the Survey of Disability, Ageing and Carers 2001, undertaken
by the Australian Bureau of Statistics; the PALS 2001 Survey, undertaken
by Statistics Canada, and the New Zealand Household Disability Survey
2001, undertaken by Statistics New Zealand. The ICF was used as a
conceptual framework in this design process. Through the consultation
process, decisions were made on the levels to be included.

Although separate questionnaires were developed for adults and children,
their structures were broadly similar and were derived from the ICF. The
main differences between the adult and child questionnaires related to
removing from the children's questionnaire issues such as marital
status; labour market experience; transportation and driving; and
intellectual development. Table 1 shows the components of the
questionnaires.

### **Table 1: Components of ICF domains in NDA Pilot Survey 2003 Questionnaires**

+---------------------------------+------------------------------------+
| **Body Functions & Structures** | Vision                             |
|                                 |                                    |
|                                 | Hearing                            |
|                                 |                                    |
|                                 | Speech                             |
|                                 |                                    |
|                                 | Breathing                          |
|                                 |                                    |
|                                 | Pain                               |
+---------------------------------+------------------------------------+
| **Activities & Participation**  | Communication                      |
|                                 |                                    |
|                                 | Mobility                           |
|                                 |                                    |
|                                 | Agility                            |
|                                 |                                    |
|                                 | Self Care                          |
+---------------------------------+------------------------------------+
| # Major Life Areas              | Education                          |
|                                 |                                    |
|                                 | Employment                         |
|                                 |                                    |
|                                 | Leisure / Social Participation     |
+---------------------------------+------------------------------------+
| # Environmental Factors         | Products and Technology            |
|                                 |                                    |
|                                 | Support and Relationships          |
|                                 |                                    |
|                                 | Attitudes                          |
|                                 |                                    |
|                                 | # Services, Systems and Policies   |
+---------------------------------+------------------------------------+

**Source: adapted from Browne et al, 2003:49, Table 15**

**Filter questionnaire**

Piloting the adult questionnaire required a sample size of about 100
persons who had an activity limitation according to the definition
applied. A sifting of the national population was undertaken to identify
relevant respondents for the main pilot survey. The filter questions
chosen had their basis in the disability filter questions used in the
2001 Canadian Census, which were extensively tested.

In July 2003, the filter questionnaire[^3] was administered by telephone
to a sample of 953 households. Counties surveyed were Dublin; Westmeath,
Meath; Mayo and Kerry, selected to ensure a reasonable rural/urban mix.
Random digit dialling was used. Out of the 951 households contacted a
total of 81% (770) completed the survey with only 181 (19%) refusing to
do so.

Over 64% of the sample (representing 497 households) was classified as
having no one with a disability/activity limitation on the basis of the
definitions employed (i.e. they answered 'no' to all four screen
questions). A further 30% of households (229 cases) recorded 1 person
with a disability while the remaining 6% of households recorded 2 or
more persons.

The total number of individuals resident in the 770 households, which
successfully completed the pilot sift was 2,439. A total of 317 of these
were identified as having a disability. This gives a disability
prevalence rate among individuals of the order of 13% (as compared with
the census 2002 rate of 8.7%).

Households in which a person with a disability was identified, were
asked if they would be willing to participate in the main pilot survey.
Of these, 54% (143) were willing and provided contact details while 46%
(123) were unwilling to take part for a variety of reasons, most
frequently because they could see no benefit to so doing.

**Interviewer training**

The main survey was implemented on a personally administered basis by
interviewers visiting the respondents in their own home. The NDA took
the view that interviewers would need some specialised training in
interviewing persons with a disability, both to ensure the interaction
was appropriately sensitive and to maximise the quality of the response.
This element was therefore included in the pilot through a half-day
special briefing session by the team. It is intended that this training,
along with the interviewer guidelines produced as part of the pilot,
will provide the basis for training the NDS interviewers[^4].

#### Data collection

A total of 88 of the 93 interviews with adults were completed directly
by the respondent. One interview was a facilitated interview (the
respondent was present but was assisted in completing the interview by a
parent/guardian/facilitator) and four interviews were completed by
proxy. The average duration of the adult interviews was just under 40
minutes.

Only 1 of the 13 child questionnaires completed was based on direct
responses from the child, the remainder being conducted with the parent
or guardian of the child. The average length taken for completion was 41
minutes.

In order to learn more from the pilot exercise, the respondents'
reactions to the survey were investigated in a structured way on both
the adult and child questionnaires. A total of 90 out of the 106
respondents completed the feedback section of the questionnaire. These
responses were then analysed along with those from the interviewers.

**Respondent and interviewer feedback**

In general, there was a very positive response to the survey with very
few problems arising. High levels of satisfaction with the interview
process were recorded in terms of courtesy, clarity and pace, and
relevance of the content. However, 6% of respondents expressed some
level of dissatisfaction with the relevance of the questionnaire. The
sensitivity of the questions appears not to have been a problem. Of the
88 respondents who answered this item, only 3 said that they were
uncomfortable with particular questions. One mentioned age, two
mentioned the questions on financial situation, and one noted that
depression/mental illness was a sensitive topic generally.

When respondents were asked about issues not covered in the
questionnaire that they considered should have been, some useful
comments were received. Over one-third of respondents mentioned at least
one issue that was relevant to their situation. There was no clear
pattern -- each issue tended to be mentioned by only one respondent. In
view of the length of the questionnaire, it was proposed that the
potential issues could form the basis of further consultation prior to
fielding the survey nationally. This is now being done by the CSO.

Interviewers reported no particular problems in the field arising from
the specific nature of the survey. No particular problems for those who
responded were raised in the respondent reaction section to the survey.
In addition, an ex post \'spot check\' on approximately 15% of
respondents was carried out and revealed no problems. On this basis, the
assessment was that a survey of this type could be feasibly conducted by
fieldworkers drawn from a panel of interviewers trained and experienced
in work on general surveys oriented towards the social sciences, given
appropriate training.

Finally, some minor issues relating to the precise wording of specific
questions on the pilot questionnaire were identified. Having made these
minor amendments, the team concluded that the questionnaire as piloted
provided a sound base for the full-scale National Disability Study. The
appropriately modified pilot questionnaires were used as the starting
point for consultations on the drafting of the 2006 NDS questionnaires.

**2. Census of Population 2002**

Disability questions were asked in a Census of Population in Ireland for
the first time in 2002[^5]. They were virtually the same questions as
used in the 2000 United States Census of Population. Question 14 was
asked of all persons enumerated in the Census while question 15 focussed
on specific age groups (see Figure 1).

**Figure 1: Disability Questions used in Census of Population 2002**

14 Do you have any of the following long-lasting conditions?

  ------- ------------------------------------------------------- ----- ------
                                                                  Yes   No

  \(a\)   Blindness, deafness or a severe vision or hearing       1     2
          impairment?                                                   

  \(b\)   A condition that substantially limits one or more basic 1     2
          physical activities such as walking, climbing stairs,         
          reaching, lifting or carrying?                                
  ------- ------------------------------------------------------- ----- ------

**15 Because of a physical, mental or emotional condition lasting 6
months or more, do you have any difficulty in doing any of the following
activities**?

  ------- ------------------------------------------------------- ----- ------
                                                                  Yes   No

          Answer (a) and (b) if aged 5 years or over.                   

  \(a\)   Learning, remembering or concentrating?                 1     2

  \(b\)   Dressing, bathing or getting around inside the home?    1     2

          Answer (c) and (d) if aged 15 years or over.                  

  \(c\)   Going outside the home alone to shop or visit a         1     2
          doctor\'s surgery?                                            

  \(d\)   Working at a job or business?                           1     2
  ------- ------------------------------------------------------- ----- ------

A total of 323,707 persons, representing 8.3% of the total population,
indicated that they had a long-lasting health problem or disability.
This rate was calculated by identifying every person who answered 'Yes'
at least once to one of the six sub-questions - Q.14a, Q.14b, Q.15a,
Q.15b, Q.15c or Q.15d.

Some statistics from the 2002 Census disability results are:

-   Around 58% of persons with a disability had more than one
    disability;

-   Around 42% of those with a disability were aged 65 years or over
    whereas that age group represented only 11% of the population (see
    Table 2);

-   One-fifth of persons with a disability living in private households
    were living on their own;

-   Around 11% of persons with a disability were enumerated in communal
    establishments -- over one-third of persons enumerated in communal
    establishments had a long-lasting health problem or disability; and

-   There was little difference between the disability rate in rural
    areas (8%) compared to urban areas (8.5%).

**Table 2: Profile of persons with a disability by age group, Census of
Population 2002**

  ----------- --------------- ---------------- --------------- -------------------
  **Age**     **2002 total    **All multiple   **All disabled  \% of relevant age
              persons**       disabilities**   persons**       group with a
                                                               disability

  0-4         **277,630**     2,391            2,029           0.7%

  5-9         **264,090**     10,700           7,017           2.7%

  10-14       **285,708**     11,480           8,265           2.9%

  15-19       **313,188**     17,651           8,835           2.8%

  20-24       **328,334**     21,693           10,890          3.3%

  25-29       **312,693**     22,903           11,442          3.7%

  30-34       **304,676**     26,748           13,579          4.5%

  35-39       **290,906**     31,025           15,678          5.4%

  40-44       **271,984**     34,784           17,511          6.4%

  45-49       **249,604**     39,518           19,696          7.9%

  50-54       **230,843**     46,879           23,287          10.1%

  55-59       **197,294**     50,755           25,067          12.7%

  60-64       **154,252**     51,042           24,715          16.0%

  65-69       **133,474**     51,225           23,517          17.6%

  70-74       **112,129**     61,527           26,141          23.3%

  75-79       **89,815**      80,540           30,288          33.7%

  80-84       **58,857**      83,706           27,847          47.3%

  85+         **41,726**      101,266          27,903          66.9%

  **Total**   **3,917,203**   **745,833**      **323,707**     **8.3%**
  ----------- --------------- ---------------- --------------- -------------------

There were 36,223 persons with a disability enumerated in communal
establishments on Census night. Table 3 shows that almost three-quarters
of these were enumerated in a nursing home or hospital. The selection of
the NDS sample will be limited to persons who were enumerated at their
usual place of residence (to facilitate call-back), and only certain
communal establishments (such as nursing homes) will be included in the
sample frame.

**Table 3: Persons with a disability enumerated in communal
establishments, Census 2002**

  ---------------------------------------- ------------- -----------------
  **Type of Establishment**                **Total       **Total persons
                                           persons**     with a
                                                         disability**

  Hotel                                    27,053        1,319

  Guest house, boarding house and B&B      9,641         625

  Hostel[^6]                               7,472         1,643

  Campsite                                 56            6

  Educational establishment                6,191         283

  Religious community                      7,013         1,821

  Children\'s home                         429           131

  Nursing home                             16,749        13,490

  Hospital                                 23,219        13,337

  Prison                                   3,237         286

  Civilian ships, boats and barges         369           9

  Other, incl. not stated                  6,256         3,273

  **Total**                                **107,685**   **36,223**
  ---------------------------------------- ------------- -----------------

**3. Census of Population 2006**[^7]

Figure 2 shows the two disability questions that will be used in the
2006 COP. These questions will be asked of every person present in the
household or communal establishment on census night.

**Figure 2: Disability Questions for Census of Population 2006**

15 Do you have any of the following long-lasting conditions?

  ------- ------------------------------------------------------- ----- ------
                                                                  Yes   No

  \(a\)   Blindness, deafness or a severe vision or hearing       1     2
          impairment?                                                   

  \(b\)   A condition that substantially limits one or more basic 1     2
          physical activities such as walking, climbing stairs,         
          reaching, lifting or carrying?                                

  \(c\)   A learning or intellectual disability?                  1     2

  \(d\)   A psychological or emotional condition?                 1     2

  \(e\)   Other, including any chronic illness?                   1     2

                                                                        
  ------- ------------------------------------------------------- ----- ------

**16 IF 'YES' to any of the conditions specified in Question 15, do you
have any difficulty in doing any of the following activities**?

  ------- ------------------------------------------------------- ----- ------
                                                                  Yes   No

  \(a\)   Learning, remembering or concentrating?                 1     2

  \(b\)   Dressing, bathing or getting around inside the home?    1     2

  \(c\)   Going outside the home alone to shop or visit a         1     2
          doctor\'s surgery?                                            

  \(d\)   Working at a job or business or attending school or     1     2
          college?                                                      

  \(e\)   Participating in other activities, for example leisure  1     2
          or using transport?                                           
  ------- ------------------------------------------------------- ----- ------

The Census disability questions for 2006 have been amended from the 2002
Census. The equivalent of Q.14 in COP 2002 has been extended to include
three extra categories of disability including a broad "Other" category.
In 2006 persons should only answer the equivalent Q.15 from 2002, if
they have answered at least one 'Yes' to Q.15 in 2006. The disability
questions were tested in a Census pilot survey in April 2004, which
covered 8,000 households. The proportion of persons with a disability in
the 2004 Census pilot was 10.6% of the population. If the categories,
which were added to the 2002 Census disability questions, are excluded,
the prevalence rate falls to 9.2%, which is a small increase on the 8.3%
reported in 2002.

The Census 2006 will also be used to identify a sample of around 2,000
persons who stated that they did not have a disability. These persons
will be included in the NDS to examine the effectiveness of the Census
questions in identifying all persons with a disability.

**4. Post survey micro data linkage to 2006 Census file**

The COP questionnaire collects a large range of data on the demographic,
educational, employment and family situation of each person. Instead of
collecting such information again in the NDS, a common unique person
identification number will be used in both surveys in order to link both
data files at a person level. This approach allows greater scope for the
collection of more disability specific data in the NDS (such as barriers
to participation including attitudes of other persons). It also means
that more valid comparisons can be made with the non-disability
population in relation to such data, as the Census will be the only data
source used for comparing the education and employment situation of
persons with and without a disability. Each person recorded in the
Census can be uniquely identified electronically by a combination of
four variables:

-   County code;

-   Enumeration area code (EA);

-   D number (taken from the Enumerator Record Book which is a list of
    all households within an EA including their addresses); and

-   Person number on the census form.

These four variables will comprise the unique person identification
number that will be used in both surveys. In addition, the NDS will
collect the Personal Public Service Number of persons interviewed in the
NDS survey. This identification number is being increasingly used in
many public sector administrative data holdings such as social welfare,
education, and health data sources. Hence although the PPS Number will
not be collected in the Census, it will be possible to match the NDS at
an individual person level to significant administrative data holdings.
However there may be difficulties arising from non-response to the PPSN
question especially among older persons who may not be readily able to
locate their PPSN. The CSO may undertake an in-house post-NDS data
matching exercise with the PPSN register to verify PPS Numbers and to
capture missing numbers.

**5. NDS 2006 sample**

> Final decisions regarding the sampling strategy for the 2006 Survey
> have not yet been made. However, some broad issues have been decided:

1.  The disabled population to be covered will include children and
    adults of all ages whether living in private households or in
    communal establishments. Homeless people will not be covered in the
    NDS;

2.  The total sample size will be around 15,000 persons. This includes
    both persons in private households in permanent housing and persons
    in communal establishments. It also includes around 2,000 persons
    who did not report a disability in the Census;

3.  The primary sampling unit will be the Electoral Division. These will
    be selected using the disability results from the 2002 Census of
    Population.

4.  The secondary sampling unit will be a named person in a private
    household in permanent housing or named persons in selected communal
    establishments. Only the named person in each private household will
    be interviewed.

5.  The data gathered during the 2006 Census will be used to stratify
    and select the NDS sample within the selected EDs. A higher
    proportion of younger persons with a disability will be included in
    the sample.

6.  Around 200 enumerators will be retained from the Census field
    operation. They will be given special training in disability issues
    and in general interviewing techniques.

The names and addresses of persons indicating a disability in the census
will have to be extracted from the Census forms. The resulting lists
will include details such as the unique person identification variables,
name and address; date of birth; sex; and accommodation type (private
household or type of communal establishment). The enumerators will also
extract a sample of persons who had no disability. It is expected that
an average Census enumerator list will comprise around 30-40 names.
These lists will be returned to the CSO for keying and sample selection.

**6. NDS 2006 Questionnaire**

Preparations for the 2006 NDS began in Spring 2005 using the NDA Pilot
questionnaire as the basis for consultation. Two key areas emerged as
needing further attention. The first of these was to ensure that the
relevant Government Departments would have their data needs met by the
NDS, especially in the context of a new National Disability Strategy
that was launched in Autumn 2004. The second was to address perceived
shortcomings in the pilot questionnaires, most especially in the complex
areas of mental health and intellectual disabilities.

Figure 3 briefly compares the structure of the pilot questionnaire with
the latest draft of the NDS questionnaire. The NDS questionnaire has
gone through a much broader consultative process particularly in
relation to consultation with Government Departments to ensure that the
data required to inform policy planning and development is being
included in the questionnaire. This consultation was largely done
through the formation of a representative Survey Project Group and
through direct consultation with Government Departments and disability
organisations.

Section 1 in both questionnaires has much the same basic structure:
seeing; hearing; speaking and communication; mobility and dexterity;
pain; breathing; learning or intellectual and other developmental
difficulties; memory; and emotional, psychological or mental health
difficulties. However the questions have been modified based on the
feedback to the NDA pilot, and on a developing awareness of what the
critical activities and aids questions are.

More prominence has been given to the Built environment and Transport
sections in the NDS. The components of Major life areas in the NDA
survey (education, employment, and leisure, social participation,
transport and housing) have been allocated separate sections. There have
also been many changes to the wording of individual questions.

**Figure 3: Comparison of Adult Questionnaire layout in NDA Pilot 2003
and NDS 2006**

  ----------- ----------------------- -------------------------------------
  **Topic**   **NDA Pilot 2003**      **NDS 2006**

  Section 1   Activities and aids     Type of disability (includes
                                      questions on severity)

  Section 2   Help from other people  Help from other people
              and attitudes of other  
              people                  

  Section 3   Background to reduction Attitudes of other people
              in activities           

  Section 4   Major life areas        Built environment

  Section 5   Demographic information Transport

  Section 6                           Education

  Section 7                           Employment

  Section 8                           Social participation

  Section 9                           Sport and recreation

  Section 10                          General and demographic information
  ----------- ----------------------- -------------------------------------

As previously mentioned, a small sample of persons who indicated that
they did not have a disability in the Census will be included in the
NDS. The main purpose of this exercise is to examine the disability
severity of any of such persons who may indicate that they have a
disability in the NDS. The exercise may also shed light on gaps in the
Census disability questions. It is intended that these persons will be
asked the full NDS questionnaire rather than given an intermediate
filtering questionnaire.

**7. Ethical practice in disability surveys**

The NDA is committed to two core principles in relation to its research
programme: a social model of disability, and empowerment of people with
disabilities (NDA 2000, p. 16-18). It is also aware of the specific
challenges which are posed in applying ethical guidelines to disability
research. The NDA ensured that these principles were honoured during the
pilot exercise in a number of ways:

-   An Advisory Group, which included people with disabilities, was
    established for the project;

-   Several consultation seminars were organised by the NDA for a range
    of stakeholders;

-   An expert advisor from the WHO was available to assist the research
    team and to address the consultative seminars;

-   A structured consultation process around the pilot survey itself
    formed a key element of the project.

In a separate but related exercise, the NDA also produced a new set of
NDA Ethical Guidelines for Disability Research in 2004 partly as a
response to ethical issues raised during the NDS consultation process.

The remainder of this section will discuss firstly the consultation
process and secondly the main provisions of the NDA ethical guidelines.

## The Consultation Process

The various consultation exercises focussed on a range of issues,
including the benefits or otherwise of conducting this kind of survey;
the pros and cons of using the ICF as framework and the ethical
dimension. The latter proved to be of particular importance to people
with disabilities who reported having had negative experiences of
participating in research in the past. Three over-arching issues of
importance emerged from the consultations, along with this general
concern about ethical research practice.

First, it was apparent that participants believed themselves not fully
informed and some suggested that the proposed survey instrument were
impositions on people with disabilities. This view existed despite the
fact that these instruments were the direct outcomes of recommendations
specifically stated in the Report of the Commission on the Status of
People with Disabilities. This report was based on the broadest
consultation process ever undertaken with people with disabilities in
Ireland.

A second issue reflected current debates in disability research. Many
participants referred to changes in the ways disability is construed and
to the treatment of people with disabilities historically. They were
concerned that these understandings should underpin the proposed NDS and
remained to be convinced that using the ICF as a framework would ensure
that this was the case. Some perceived the ICF as remaining within a
medical understanding of disability and rejected its claim to have
incorporated the social model.

Third, it was apparent that frustration and scepticism about current
political activity related to disability issues permeated many
responses. In brief, many did not see a link between the proposed
national disability study and their well-being.

#### Ethical Guidelines

The NDA ethical guidelines[^8] were written as a response to
dissatisfaction expressed at various consultation meetings with the
short guidelines included in the ICF (WHO, 2001:). This dissatisfaction
was raised in the context of the issues outlined above, most especially
those of prior bad experiences of research and fears that research might
be used to underpin a negative approach to disability, expressed most
usually in a fear of eugenics policies.

The guidelines were developed during 2003-2004 through a separate
consultation exercise that included researchers, policy-makers, service
providers and disability organisations. The guidelines advocate the
following core values to underpin disability research:

-   Respect for the human rights, dignity, equality and diversity of all
    > those involved in the research process;

-   Advancement of social justice for people with disabilities within
    the wider community;

-   Promotion of the well-being of those participating, involved in or
    affected by the research process;

-   Avoidance of harm to those involved in the research process or to
    the wider community;

-   Facilitation of the participation of people with disabilities in
    research and research dissemination, including those for whom
    obstacles might make such participation difficult without additional
    support;

```{=html}
<!-- -->
```
-   Maintenance of the highest professional, legal and ethical standards
    and competencies; and

-   Comprehension and fulfilment of relevant legal responsibilities**.**

The guidelines argue that adhering to these general core values presents
some specific challenges for disability research and they discuss those
challenges in some detail. These guidelines are central to the general
consultations being undertaken by the CSO during the preparations of the
NDS questionnaire, methodology and interviewer guidelines.

**Conclusions**

1\. The work undertaken by the NDA in commissioning a pilot disability
survey was pivotal to the subsequent sanctioning of a National
Disability Survey. The pilot questionnaires proved to be a valuable
starting point in the forming of the NDS questionnaire. That work, has
resulted in regular contact with disability representative groups in
connection with acceptance of the value of the compilation of statistics
on disability provided that they are collected within acceptable ethical
guidelines.

2\. The Department of Justice, Equality and Law Reform provided the next
major impetus by bringing a Memorandum to Government.

3\. The work on disability statistics undertaken by the CSO 2002-2005
laid a good foundation for deciding practical issues such as sample
selection and methodology.

4\. The work of the ICF and the Washington City Group has resulted in
more international based consistency in the definition of disability.
This will ensure that the results for Ireland can be validly compared
with a selection of other countries.

5\. There remain unresolved issues around determining a country's
disability prevalence rate. The micro-data links between the Census
disability data and the NDS disability data should provide a useful
contribution to the possibility of using a multi-purpose household
survey to estimate disability prevalence rates.

6\. It is hoped to use the PPSN collected in the NDS to examine other
administrative databases from a disability perspective. Under the
Statistics Act, 1993 the CSO is authorised to perform such data linking
for statistical purposes[^9].

[^1]: The Commission on the Status of People with Disabilities was a
    Government established expert commission, which consulted widely
    with the sector and worked within the framework of the UN Standard
    Rules. It reported to government in 1996.

[^2]: where a permanent disability question has been added to the first
    quarter survey.

[^3]: See [www.nda.ie](http://www.nda.ie/) for report including
    questionnaires

[^4]: See [www.nda.ie](http://www.nda.ie/) for the full report including
    interviewer guidelines. These guidelines are being used by the WG in
    its piloting exercise.

[^5]: The Census was originally scheduled for 2001. Censuses in Ireland
    are conducted every 5 years.

[^6]: Hostels includes a mixture of tourists, and homeless and other
    socially disadvantaged persons.

[^7]: A temporary field force of around 4,500 enumerators will
    distribute census questionnaires to every household and communal
    establishment in the State. The enumerators will examine the
    questionnaires, at the time of collection, to ensure that they are
    correctly completed. Where necessary, they will assist householders
    to complete the form. Special arrangements will be put in place to
    assist visually impaired persons and persons with literacy
    difficulties to fill out their Census forms.

[^8]: Available on www.nda.ie

[^9]: See CSO data protocol,
    http://www.cso.ie/aboutus/documents/cso_data_protocol.doc