Chapter 5. The Consultation Process
In designing and piloting a research instrument focused on the prevalence and impact of disability in Ireland, a core element in the project was a structured consultation process with various stakeholders in the field of disability. These stakeholders were consulted so as to capture their views and enhance the quality of the proposed research instrument. The project’s advisory group identified several key bodies in the area of disability, covering the intellectual, physical and mental health spheres. Eight groups were then invited to partake in the consultation process, and the process and its findings will be described as follows.
- Methodology – how the initial contact was made with the identified groups, the follow-up contact and method of data collection.
- Findings - the results of a content analysis of the key issues that emerged during consultative interviews are presented
- Discussion – positioning these findings within the context of the project and current disability debates.
Eight key stakeholders representing various groups in the area of disability in Ireland were identified and invited to take part in the consultation process, with the pattern shown in Table 4.
|range of disabilities||2|
|mental health difficulties||1|
|Agency in disability sector||1|
There were four stages to the collation and analysis of this data, outlined in Table 5.
April 2003 STAGE 1
April/May 2003 STAGE 2
June 2003 STAGE 3
August 2003 STAGE 4
|8 Key groups are identified and invited to take part in the consultation process.||Interviews are conducted with 6 groups/representatives.||The Draft Questionnaire is distributed to all 7*groups requesting feedback by July||Feedback is received from 4 groups and a content analysis is performed on the data.|
*Despite being unable to arrange an interview date with one group, we kept this group involved throughout all stages of this process.
1stStage- Initial Contact with Groups
The groups identified were contacted by letter and invited to partake in the consultation section of this project. Some background was given in the initial contact and once agreed a time suitable was arranged for the interview to be conducted. Of the initial eight groups identified, six took part at this preliminary stage (one group did not respond).
2ndStage – 1st Consultation
The 6 interviews took place, between April and May of 2003. Initial contact with the groups had revealed several key questions; these were reviewed and addressed preceding the actual interviews. It was made clear that the role of the consultation process at that point was not to discuss the application of the ICF Framework, but, rather, the value of developing an Irish disability research instrument.
On average the interviews lasted approximately one and a half hours, during which notes were taken. Questions emerging at this stage regarding the questionnaire, definitions, format etc, were noted by the interviewer and followed up at a later date.
.3rdStage – Distribution of Draft Questionnaire
The central element that emerged at the 2nd Stage was that groups would prefer further consultation in the drafting of the questionnaire. Furthermore, all groups saw a need to have a copy of the questionnaire, as an abstract discussion was considered to be fruitless. While the development of the questionnaire itself is discussed in detail in the next section of this report, the responses in the consultation process generally related to broad rather than very specific issues and are best outlined at this stage.
The draft questionnaire was distributed to those interviewed, and some groups then distributed the draft questionnaire to their members for wider consultation. The draft was circulated via email and post at the end of June, with the final collection of feedback carried out in August. The overall structure of the response to the consultation process is then shown in Table 6. Of the 8 groups initially contacted 4 contributed at this stage (1 already had given views direct to our project partners; 1 was unavailable; and 2 groups did not respond). In summary, several key groups representing people with disabilities in Ireland were contacted and invited to take part in the consultation process for the purpose of designing and piloting an Irish Disability Survey. Seven groups accepted the invitation and were then followed up with an interview. One group did not respond. Emerging from these initial meetings was the desire by the groups to peruse the related questionnaire. This was arranged and copies of the draft questionnaire were distributed to all eight groups. The following findings present the data from the initial interviews and feedback relating specifically to the draft questionnaire.
A content analysis of the feedback obtained at both the 2nd and 3rd stages of consultation. The findings are presented under 6 headings:
- Purpose of the Questionnaire
- Format of Questionnaire
- Definitions associated with the Questionnaire
- Consultation Process
Purpose of The Questionnaire
Several key issues emerged:
- Groups felt that the purpose of such a survey needs to be made clear, since anyone with suspicions about how it might be used might then be reluctant to participate.
- Placing the disability survey within the census was appraised positively, with some groups noting such a survey’s value in developing services and fulfilling rights on behalf of people with disabilities.
’…such a section included in the census is essential…..’: Respondent #1
- However, groups noted that prospective respondents should be made aware of the benefits of a disability survey awareness raising campaign. An awareness-raising campaign should precede the launch of the survey, and highlight how the quality of life for people with disabilities could be improved by applying such an instrument.
- One respondent stated that the survey should be an ‘active tool’ as it…-
‘…needs to been seen as an active tool [and not] a lobbying tool’.: Respondent #2
- All respondents were concerned that the questionnaire seemed to be shaped largely using a medical model of Disability. Many were concerned that advances made under a social model of disability would be hampered by a medical model approach in such a national questionnaire. It was noted that some individuals with a disability might be deterred by the largely medical composition of questionnaire items.
- Some groups felt that a proportion of the questions were too personal and intrusive, also deterring participation in the survey.
- Certain sections were also believed to be too long and the language too complex for respondents. Others suggested that certain areas like parenting, ageing and sexuality needed to be included
- A more qualitative approach was suggested, as a largely quantitative approach would not be sufficient to fully capture the experiences and needs of those affected by disability.
- Some felt that the overall theme of the questionnaire shed quite a negative light on disability, with some terms, like ‘problem’ and ‘ body functions’ being seen as offensive.
- A central concern for many groups was how disability would be defined and as a result what specific groups would come under the auspice of this survey.
- Concerns were also raised regarding the portrayal of having a disability, urging adoption of a positive approach,
- Clarity was urged when distinguishing between commonly confused types of disabilities, e.g. intellectual and learning disabilities.
- Some groups felt that negative disability stereotypes were being reinforced in the survey, for example, by overlooking the issue of recovery and mental health and also the existence of a ‘deaf culture’.
- All groups asked for further consultation and for active input into the design of the final version of the questionnaire.
‘…the design of the questionnaire must involve mental health users: Respondent # 3
- In order for people with intellectual disabilities, and other disabilities to participate fully in the survey, how will consent be obtained? As an emerging debate, our respondents were concerned that if participation is to be given by proxy, how will this be defined and obtained?
- Groups felt that current research practices have left this target group despondent and negative to further ‘intrusive’ research. From discussions, there appears to be a growing scepticism, within the disability field towards government and government agency-led research. Informal evidence from those engaged in the initiative to set up a Physical and Sensory Database seems to support this stance, with data collection proving difficult.
‘..the group we represent are researched out, and what has changed within services is not due to research but out of need.’: Respondent #3
- Clarity was also requested on whether children would be included in the disability survey.
- Many groups felt that interviewers would need experience/training in the area of disability.
- Also using alternative methods of communication for respondents would need to be explored, and the appropriate training given to interviewers.
Participants in this consultative process represented various interest groups in the disability sector in Ireland. Although common themes were identified, their comments also indicated disparate views. It may be inferred that it is not appropriate to approach the disability sector as a homogenous body with a unified set of priorities.
Three over-arching issues of great importance emerged from the process. Each is relevant to the NDA objectives for carrying out– ultimately – an Irish disability survey. These issues are, respectively, operational, conceptual and political in character.
First, at operational level, it was apparent that participants were uncertain and/or believed themselves not fully informed about (a) the purpose of the pilot study; (b) the scope of the proposed instrument; and (c) the ultimate objective of the survey. This uncertainty was observed across disability groups. In particular, many respondents did not at first grasp that, while their critical comments about the pilot instrument would not lead to revision of the pilot instrument itself, they would nonetheless be documented and taken into account when the pilot study is evaluated and the instrument is refined. Some expressed views suggesting that the Census itself and/or the proposed survey instrument were impositions rather than the direct outcomes of recommendations specifically stated in A Strategy for Equality –the Report of the Commission on the Status of People with Disabilities (1996).
A second important issue reflected currentdebates in Disability Studies and related fields about various models and definitions of disability. Many participants referred to a stark medical-social polarity of models of disability. They referred to changes in the ways disability is construed and also to the treatment of people with disabilities historically. As discussed earlier, a medical model refers to treating disability as a pathological state, or a deviant condition vested within an individual that may potentially be subject to rehabilitation or medical interventions, but the term is often used to refer, more generally, to any ‘explanations’ of disability on the grounds of impairment or loss of functioning - the latter being a term included in the pilot survey instrument. By contrast, a social model of disability rooted in social constructivism emerged from the middle of the last century. According to this model, an array of societal and cultural responses yield the social disadvantages experienced by individuals with disabilities. Some elements of this thinking were incorporated in the shift of EU policy away from a welfare or accommodation approach towards a rights-based approach to disability, as discussed earlier in this report. Proponents of a social model of disability, many based in the UK, may vary in the emphasis they place on these social responses in accounting for the experiences of individuals with disabilities (see for example Albrecht et al 2001). For example, some reject classification systems or enumeration exercises of any sort on the grounds that counting does not bring benefits in its wake. Others prefer the term ‘disabled people’ to reinforce the point that society disables the individuals who bear this label. But these scholars are unified in their rejection of medical explanations. More recently, Bickenback et al.(1999) have proposed a universalism model which assumes that diversity, including disability is part of the human condition. As emphasised in Section 4, this approach has informed the development of the ICF instrument at the WHO.
Third, it was apparent that frustration, disenchantment and skepticism about political activity related to disability issues imbued many responses in the consultative process. Spontaneous remarks revealed that participants believed that people with disabilities in Ireland were marginalized and had little confidence that there would be tangible improvements in their status and opportunities. Some animosity towards government and government agencies filtered into more general antipathy to being enumerated, identified or subjected – in their view - to research investigations in the absence of meaningful political change. In brief, many did not see a link between the prevalence study and their well-being.
In summary, it is important that the presence of these over-arching issues be recognized, since one or more may influence the willingness of individuals with disabilities to participate in a prevalence and impact survey. They need to be addressed in order to optimize the process and outcomes of such a survey and thus meet national strategic objectives. As we will see in Section 8 below, the pilot questionnaire itself incorporated a significant element of consultation with respondents, and this report itself will of course help to provide the basis for a broad-ranging discussion on the value of the exercise.
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