Chapter One: Introduction

This report presents findings of focus group consultation, conducted for the National Disability Authority, to elicit the views of people with disabilities and others closely involved in their lives, to emerging policy ideas coming from a policy review of disability being undertaken by the Department of Health and Children. The emerging policy initiatives under consideration by the Department of Health and Children propose a movement away from segregated disability services towards the provision of individualised supports and mainstream services.

Consultation Methodology

The consultation was carried out by means of 15 focus groups^[2] with a broad range of stakeholders during March 2010, as part of a larger consultation exercise, for the National Disability Authority (NDA) on how to achieve full independent lives with full inclusion in the community. The majority of time in the focus groups was dedicated to exploring the views of different stakeholders to independent living, community participation, and quality of life for people with disabilities in Ireland on behalf of the NDA. The balance of the sessions related to views on the Department of Health and Children's policy initiatives. Details of the focus groups are summarised in Table 1 overleaf.

Table 1. Structure of Focus Groups

	Group	Age Range	Disability	Location	Date	Number of Participants
1	Intellectual	18-30 years	Moderate learning and intellectual	Dublin	3^rd March	4
2	Intellectual	31-45 years	Moderate learning and intellectual	Cork	1^st March	6
3	Intellectual	45-65 years	Moderate learning and intellectual	Galway	4^th March	9
4	Intellectual	25-40 years	Day service users	Navan	2^nd March	5
5	Physical/ Sensory	31-45 years	Day service users	Dublin	10^th March	5
6	Physical/ Sensory	45-65 years	Day service users	Tullamore	18^th March	7
7	Family	Parents of children 0-18 years	Mix	Dublin	15^th March	3
8	Family	Parents of adults 18+ years	Severe intellectual disability	Sligo	5^th March	8
9	Self- advocates	25-40 years	Mix	Cork	8^th March	4
10	Advocates	Mix	n/a	Sligo	5^th March	9
11	Frontline service staff	Mix	Day services	Galway	4^th March	9
12	Frontline service staff	Mix	Community services	Tullamore	18^th March	7
13	Intellectual	18-30 years	Moderate learning and intellectual	Dublin	10^th March	4
14	Intellectual	31-45 years	Moderate learning, autism intellectual	Cork	8^th March	6
15	Intellectual	45-65 years	Moderate learning, and intellectual	Galway	11^th March	9

A primary concern of the consultation process was that it would be undertaken in a professional and ethical manner, in accordance with best practice guidelines endorsed by the NDA (National Disability Authority, 2004). The key elements of the consultation process are described 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 (Appendix B).
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. The groups with people with intellectual disabilities were spread over two one hour sessions.
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, in the event they would be required to support an individual who became upset. 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. While support persons did attend the groups, their assistance was not required or requested.
8. Recording	The groups were recorded with the permission of the participants.
9. Report	A detailed report was compiled and presented to the NDA

The focus groups were recorded with the written permission of all participants. This process facilitated the liberal use of verbatim comments in this report, thereby giving priority to the 'voice' of stakeholders in this report. Following a detailed discussion on independent living, community participation, and quality of life options for people with disabilities in the Republic of Ireland, the participants were asked to give their initial reactions and opinions of two vignette^[3]³, which corresponded with policy proposals being considered by the Department of Health and Children.

Vignette 1: (Greater control through individualised funding).

Do you like the idea of having more say in what supports you get and who provides these supports? One idea is to have "the money follow the person". This means the person and their family will have a much bigger say in what supports are provided and who provides them. One example is that you can get your house or flat from a housing provider. Supports you get to live in this house or flat, like a personal assistant, may be provided by a service provider. This means you will have your own place to live but can use different supports and different providers depending on what you need. You can choose if you want a housemate or not, and you can choose who that person might be.

Vignette 2: (mainstreaming and individualised supports instead of segregated, group services).

Do you like the idea of being able to choose your own GP and being supported to do that? Do you like the idea of being able to use the same transport and housing as everyone else and being supported to do that? One idea is that services will not be segregated or provided separately to people with disabilities. Supports will be available so that you can access the same mainstream services as everyone else. This means that when you want to go to a training course, you can be supported to go to the local college or to local classes to get that training. You can also be supported to do other things you want to do and to choose who to do them with.

Alternative formats, designed by the NDA, were used to present the vignettes to persons with intellectual disabilities. The material comprised of four different scenarios, which related to accommodation, work, doctor, and transport to cover the focus of the vignettes (Appendix A).

Structure of the Report

Following this introductory chapter the views of the different stakeholders on individualised supports and mainstreaming will be outlined in chapters two and three, respectively. The chapters are divided into separate sections relating to the different stakeholders, as follows: service users - physical/sensory, self-advocates, and intellectual disability; parents of children with disabilities; frontline staff; and advocates employed in the community and voluntary sector for people with disabilities. Some concluding comments are briefly recorded in chapter four.

^[2] A focus group is a particular form of qualitative research, 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, C. & FLEMING, D. 2003. Marketing Research in Ireland. Theory and Practice., Dublin, Gill and Macmillan.

^[3] The Department of Health and Children provided the wording for the two vignettes.