The Concept of Advocacy for people with Learning Disabilities in Ireland Author: Gina McNamara (BA Honours in Applied Social Studies in Social Care) Submitted to National University of Ireland, Galway on behalf of MA in Public Advocacy and Activism under The Huston School of Film and Digital Media Supervisor: Dr. Andrew Power August 2009 Table of contents Acknowledgements…………………………………………………..… 2 Abstract…………………………………………………………………… 3 Introduction to Dissertation…………………………………………… 4 Chapter 1: Types and Principles of Advocacy………………...…… 8 1 Introduction………………………………………………..….. 8 1.1 Components of advocacy……………………………….…… 8 1.2 Types of advocacy….………………………………………… 10 1.2.1. Self-advocacy………………………………………………. 11 1.2.2. Group advocacy…………………………………………… 13 1.2.3. Citizen advocacy…………………………………………… 13 1.3 Representative advocacy…………………………………...… 15 1.3.1. Peer advocacy……………………………………………… 15 1.3.2. Family advocacy……………………………………………. 16 1.3.3. Legal advocacy……………………………………………… 16 1.4 Principles………………………………………………………... 17 1.4.1. Empowerment……………………………………………….. 17 1.4.2.. Autonomy…………………………………………………….. 18 1.4.3. Inclusion………………………………………………………. 19 1.4.4. Citizenship……………………………………………………. 19 1.5 Conclusion……………………………………………….………. 20 Chapter 2: The Development of Advocacy from an international level to a national level……………………………….…………………………….…. 21 2 Introduction…………………………………………………….… 21 2.1 Independent Living movement………………………………… 21 2.1.1. International Perspective…………………………………… 21 2.1.2. National Perspective………………………………………… 25 2.2 Disability Rights Movement………………………………….… 27 2.2.1. Rights for people with learning disabilities………………… 28 2.2.2. Paradigm shift from the medical model to the social model of disability………………………………………………….… 29 ii 2.2.3. Self-advocacy and citizens advocacy……………………… 30 2.3 International Legislation………………………………………… 31 2.3.1. UN Convention on the Rights of Persons with Disabilities 2006…………………………………………………………… 31 2.4 Conclusion……………………………………………………..… 33 Chapter 3: The current situation of Advocacy in Ireland…………… 34 3 Introduction………………………………………………….…… 34 3.1 The development of advocacy through the CIB……………… 34 3.1.2. The three strands to develop advocacy services…….…… 37 3.1.3. Community and Voluntary Programme………………….…. 37 3.1.4. Personal Advocacy Service (PAS)…………………………. 38 3.1.5. Community Visitors Programme………………………….… 39 3.2. Organisations contribution to advocacy……………………….. 40 3.2.1. National Disability Authority (NDA)……………………….… 40 3.2.2. People with Disabilities Ireland (PwDI)………………..…… 41 3.2.3. Inclusion Ireland…………………………………………….… 42 3.2.4. National Federation of Voluntary Bodies…………………… 43 3.3 Best practice Guidelines for advocates……………………….. 44 3.4. Impact of the current economic crisis on Advocacy Provision 45 3.5 Conclusion……………………………………………………..… 46 Chapter 4: Overall findings of this Research ……………………….. 47 4. Introduction…………………………………………………….. 47 4.1. What is advocacy and what are the main purposes of advocacy? ………………………………………….………..… 47 4.2. What are the common challenges of accessing advocacy services from the viewpoint of a person with learning disabilities? ……………………………………….… 48 4.2.1. Paradigm shift from the medical model to the social model of disability……………………………………………………. 49 4.2.2. Lack of Support………………………………………….…… 50 4.2.3. Attitude Problems……………………………………….…… 50 4.2.4. Communication …………………………………………...… 51 4.2.5. Lack of Independent Services……………………………… 51 iii 4.3. What are the necessary actions required to enhance advocacy services for people with learning disabilities?.................... 52 4.3.1. Promote self-advocacy……………………………………… 52 4.3.2. Provide more resources………………………………….…. 53 4.3.3. Provide advocacy training………………………………..… 54 4.3.4. Ensuring advocacy services are completely independent from service providers……………………………………………… 54 4.4. Conclusion……………………………………………………………. 55 Chapter 5: Recommendations and Conclusions…………...…….… 56 5 Introduction……………………………………………………… 56 5.1. Recommendations for further research……………………… 56 5.2. Conclusions ……………………………………………………. 57 Bibliography………………………………………………………………..… 59 Appendix……………………………………………………………………… 64 iv Acknowledgements The author would like to thank all the participants of this dissertation for making this research project possible. A special thank you goes to my supervisor, Dr. Andrew Power for all the guidance and support which enabled the author to complete this dissertation. To all the library staff in NUI, Galway, appreciation and gratitude is given for their support in assisting the author on accessing all relevant literature for this project. Finally, a special thank you goes to my parents and friends for their continued support and advice. 2 Abstract Advocacy is a relatively new concept in the disability sector in Ireland. The sole aim of this dissertation is to explore the concept of advocacy for people with learning disabilities. In order to explore the concept of advocacy, we will identify and discuss some key definitions of advocacy and the main types and principles of advocacy. Following on from this, we will discuss the development of advocacy both nationally and internationally. This dissertation involved two inter-related methods that took the form of desk-based research and qualitative research. The first three chapters are based on the desk-based research, whereas the fourth chapter is based on the qualitative research and the final chapter consists of recommendations for further research and conclusions for this project. The qualitative research consisted of seven interviews and one focus group. The participants were mainly from the Brothers of Charity Services and the Citizens Information Board. The main finding from this research is that advocacy only began to develop since 2000 but there is still a lot of work to be done to ensure people with learning disabilities get their voices heard. 3 Introduction to Dissertation The term Advocacy comes from the Latin word ‘ad voce’ meaning ‘towards a voice.’ Advocacy is a relatively new concept in the disability sector in Ireland since 2000. Hence, the key interpretation of advocacy is empowering a person to have a voice. Advocacy tends to be widely misunderstood by many professionals among the multidisciplinary team in the disability sector in Ireland. This tends to be due to a lack of information and awareness regarding the process of advocacy. Advocacy is made up of two components: self-advocacy and representative advocacy. Self-advocacy occurs when a group or an individual are capable of speaking up for themselves whereas representative advocacy involves an advocate speaking up on behalf of a group or individual. Both of these components are reiterated in the following three definitions below: 1. “Advocacy is actively supporting a cause or issue; speaking up in favour of; recommending; supporting or defending; arguing on behalf of oneself or on behalf of another.”1 2. “Advocacy is a means of supporting or speaking up for someone, their needs and rights. It can involve pleading their case on behalf of the person with a disability, or supporting them to speak up for themselves.”2 3. “Advocacy is about making sure that everyone has an equal voice. Advocacy is also about speaking up and getting someone to listen to you.”3 The importance of advocacy in terms of having a voice and creating the opportunity to speak up whether people are self-advocates or representative advocates are emphasised in the above definitions. However, the meaning of advocacy covers a broad spectrum. The National Disability Authority (NDA) 1 Birmingham, D. (2001). Forum for People with Disabilities. 2.2 pg. 9 2 Comhairle (2004). Goodbody Economic Consultants Report. Vol 1. pg. 12. 3 NDA (2001) pg. 6 and 7 4 definition differs from the definitions put forward by the Goodbody report (2004) Vol.1 and Birmingham (2001) in that it does not mention the two main components. This dissertation will endeavour to provide a clearer understanding of the concept of advocacy. Aims: • To investigate the concepts and challenges of advocacy from the perspective of people with learning disabilities and to explore recommendations to enhance advocacy services in Ireland from the perspective of people with learning disabilities. Objectives: • To explore the development of advocacy provision at an international and national level by looking at the law, policy and practice. • To identify the common challenges and the necessary actions to enhance advocacy services for people with learning disabilities. Research Questions: 1. What is advocacy and what are the main purposes of advocacy? 2. What are the common challenges of accessing advocacy services from the viewpoint of a person with a learning disability? 3. What are the necessary actions required to enhance advocacy services for people with learning disabilities? Methodology: This research involved two inter-related methods that took the form of desk- based research and qualitative research. 5 The desk-based research was the initial phase of this dissertation. This involved a comprehensive review of national and international advocacy materials in order to provide an analysis of the concept of advocacy locally, nationally and internationally in order to provide a clearer understanding of advocacy. This research will focus on advocacy for people with learning disabilities, as they tend to be the most vulnerable group in the disability sector in Ireland. There is a great need to conduct research in this area, as it has not been done to this extent in Ireland up to this point. This dissertation will use the term ‘learning disability’ as this is the preferred terminology expressed by participants who took part in this research. The qualitative method consisted of seven interviews and one focus group. All these interviews were recorded with permission from participants with the exception of the focus group due to the sensitive nature of the issues for the members involved. The participants of this research included the following: Research Participants Participants code Staff member – Brothers of Charity Galway P1 Staff member – Brothers of Charity Waterford P2 Galway Advocacy Service – Independent Advocate P3 National Federation of Voluntary Bodies P4 Self-advocate – Brothers of Charity Galway P5 Service Users Council – Focus group Brothers of P6 Charity Galway Area Executive Officer – Citizens Information P7 Board Galway Advocacy Officer – Citizens Information Board P8 Dublin Table 1: Codes for participants referred to in the text. 6 Structure of Dissertation: Chapter one in this dissertation will identify and discuss the main types and principles of advocacy with reference to the two components of advocacy. Chapter two will examine the international and national developments of advocacy by discussing the independent living movement, disability rights movement and the UN Convention on the Rights for Persons with Disabilities. Chapter three will explore the development of advocacy in Ireland up to this point since the establishment of the Citizens Information Board (CIB). Chapter four will discuss the main findings from the qualitative research. Finally, chapter five will identify some key recommendations for further research and will outline the conclusions to this dissertation. 7