Chapter One - Introduction and Background

1.1 Introduction

This report presents the findings from consultation conducted on behalf of the National Disability Authority (NDA) during March 2010. The NDA is the national independent statutory body established to advise the Minister for Justice, Equality and Law Reform on policy and practice relating to people with disabilities. NDA's statutory mandate on policy advice, research, standards and universal design addresses the inclusion of people with disabilities in the economic, social and cultural life of the community.

The main aim of the study was to elicit the views of various stakeholders on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland. The NDA has identified independent living and participating in the life of the community as a key priority area over 2010-2012. More specifically, Strategic Priority 2 in the NDA's Strategic Plan 2010-2012 aims to provide evidence-based policy advice to promote independence and quality of life for people with disabilities across the lifecycle. Among the evidence the NDA wishes to gather to inform this work is information from the lived experience of people with disabilities on what would promote or restrict their independence and full participation in the life of the community.

Independent living and community participation are broad concepts and for the purpose of this project, the NDA defined these concepts as:

  • People with disabilities having choice and control of the support and the equipment they need
  • People with disabilities being treated as an equal for housing, education, jobs and transport
  • People with disabilities having choice about participation in the life of the community
  • People with disabilities being integrated in the life of the community

1.2 Methodology

Focus Groups

The consultation was conducted by means of focus groups, which may be described as 'a loosely constructed discussion with a group of people brought together for the purpose of the study, guided by the facilitator and addressed as a group' (Sarantakos, 2005, p. 194). A focus group is a particular form of qualitative consultation, which is quite different to an in-depth interview or a series of individual interviews, insofar as focus groups use the group dynamic to generate data and insights. A typical focus group comprises eight participants from 'reasonably homogenous backgrounds' who come together in a centralised location (Domegan and Fleming, 2003, p. 146). Finch and Lewis (2003) summarise the key characteristics of a focus group as follows:

Data are generated by interaction between group participants. Participants present their own views and experience, but they also hear from other people. They listen, reflect on what is said, and in the light of this consider their own viewpoint further. Additional material is thus triggered in response to what they hear. Participants ask questions of each other, seek clarification, comment on what they have heard and prompt others to reveal more.(Finch and Lewis, 2003, p. 171).

Unlike its quantitative counterpart, which typically seeks to measure and predict human behaviour using numerical data, qualitative consultation is more interested in understanding and authentic interpretations of specific social situations (Neuman, 2003). Qualitative consultation can fill gaps in knowledge that are not amenable to quantitative enquiry and, more importantly in the present context, qualitative methods give participants a 'voice' (Mayock, 2009). Thus, while the present study is based on the views and experiences of a relatively large number of participants, it is the depth and quality of the information that is of most value to the study.

The policy documents of the NDA also endorse the use of focus group discussions facilitated by an independent facilitator for consultation with marginalised groups that have 'little experience of involvement in consultation processes' (National Disability Authority, 2004, p.17).

An important feature of the present set of focus groups was the underlying inductive strategy that was designed to hear and have documented the views of people who may not usually have their views and opinions represented in relation to issues concerning independent living and participation in the economic, social and cultural life of the community. Within the parameters set by the key concepts of independent living and community participation, the participants were given scope to interpret and comment on areas they believed to be important to them. Accordingly, the themes that emerged during the analysis developed from the initial questions set by the NDA and the participants' response to these questions. Thus, further to grounded theory the consultation adopted an inductive strategy, albeit supplemented by deductive tactics (Wengraf, 2001) During the analysis stage, themes were initially identified by the lead researcher and validated with the assistance of a colleague.

The groups were moderated by an experienced facilitator using a topic guide that was agreed in advance with the National Disability Authority. Quality of life is a 'multidimensional construct' and this was taken into account when designing the topic guide (Felce, 1997). The topics were initially divided into two broad categories, independence and social and community participation. More specifically, the consultation entailed participants giving their views on the following areas of their lives.

  • What would help people to live the life they want to live and what would hold them back from achieving this?
  • Where would they like to live in five year's time, what would help them achieve this, and what would hold them back?
  • Who would they choose to live with if they had a choice?
  • What would help them or hinder them from being more independent in their everyday life, their daily activities and in choosing how to spend their day and where to go?
  • What would help them or hinder them spending more of their time with people they like?
  • What would help them or hinder them doing activities that people their own age or stage of life do?
  • What would help or hinder them use facilities and amenities in their neighbourhood or downtown that they would like to use?

Each of the groups were recorded and transcribed by the author. This methodological process facilitated analysis and the liberal use of verbatim comments from participants throughout the text, which ensured that the 'voice' of the participants was given primacy over any interpretation by the facilitator or the reader. However, it is also acknowledged that 'a transcription is always partial because it is an inadequate record of non-verbal aspects of the interaction' (Mason, 2002, p. 77). This is particularly important to keep in mind in the present study due to the considerable range in the capacities of participants to express themselves verbally. While some participants were very articulate, others were capable of very limited verbal communication. In the latter case, the author took notes to ensure the views of non-verbal participants were given due attention in the text of the report.

The Consultation Process

A comprehensive consultation process was put in place following consultation with the NDA in order to ensure that the consultation was conducted efficiently and in accordance with best practice guidelines endorsed by the NDA (National Disability Authority, 2004). An overview of the group characteristics is presented in Table 1.

Table 1 Structure of Focus Groups
 

Group

Age Range

Disability

Location

Date

No. Of Partic-ipants

1

Intellectual

18-30 years

Moderate learning and intellectual

Dublin

3rd March

4

2

Intellectual

31-45 years

Moderate learning and intellectual

Cork

1st March

6

3

Intellectual

45-65 years

Moderate learning and intellectual

Galway

4th March

9

4

Intellectual

25-40 years

Day service users

Navan

2nd March

5

5

Physical/ Sensory

31-45 years

Day service users

Dublin

10th March

5

6

Physical/ Sensory

45-65 years

Day service users

Tullamore

18th March

7

7

Family

Parents of children 0-18 years

Mix

Dublin

15th March

3

8

Family

Parents of adults 18+ years

Severe intellectual disability

Sligo

5th March

8

9

Self- advocates

25-40 years

Mix

Cork

8th March

4

10

Advocates

Mix

N/a

Sligo

5th March

9

11

Frontline service staff

Mix

Day services

Galway

4th March

9

12

Frontline service staff

Mix

Community services

Tullamore

18th March

7

13

Intellectual

18-30 years

Moderate learning and intellectual

Dublin

10th March

4

14

Intellectual

31-45 years

Moderate learning, autism intellectual

Cork

8th March

6

15

Intellectual

45-65 years

Moderate learning, and intellectual

Galway

11th March

9

 

Total

    

95

A primary focus of the consultation process was that it would be undertaken in a professional and ethical manner, which would respect the participants and provide appropriate supports. A summary of the main elements of the consultation is outlined in Table 2 (overleaf).

Table 2 Key Elements in Consultation Process

Stage

Description

1. Targeting

The NDA stipulated that the focus groups should include people with intellectual disability, physical and sensory disabilities, family members, advocates, and frontline service providers.

2. Information

Information packs, consent forms, and letters for participants and service providers were designed by the NDA. These documents contained practical information on the consultation process. Two versions of the documentation were designed in accordance with NDA best practice and the advice of an external ethical advisor. The first 'plain English' version was geared for people with average intellectual abilities, while the second version was designed for people with intellectual disabilities. Copies of both versions are appended to this report.

3. Recruitment

Various service providers and agencies were contacted by the NDA to request their assistance in the recruitment of participants. Information was provided to these organisations in written format and followed up with a telephone call from the NDA.

4. Access

Practical arrangements were put in place to host the focus groups in the various locations around the country. All venues were checked for access and location.

5. Duration

The focus groups were held in the selected venues, with each group not exceeding one and half hours, or one hour in the case of the groups with intellectual disability.

6. Consent

Participants were informed on a number of occasions that they were free to participate or not. A consent form, which participants were asked to read and sign was given to each participant in advance of the consultation process.

7. Support

Each participant was allowed to bring a support person to the group if they so wished. The service providers and other organisations also provided contact details for support persons, with appropriate expertise and experience. The participant could contact these persons if the discussion or the consultation process upset him/her. In addition to the facilitator, a second support person was present during the groups in case participants became upset and needed to leave the group.

8. Recording

The groups were recorded with the permission of the participants.

9. Report

A detailed report was compiled and presented to the NDA

1.3. Format of the Report

Following this introductory chapter, the findings of the consultation process for each of the four target groups will be presented in six separate chapters - people with intellectual disability, people with physical and sensory disability, self-advocates, parents of children with disability, frontline staff, and advocates. This is followed in chapter eight with concluding comments and some recommendations. An executive summary and an appendix containing the material used in the consultation process are also included.