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The Education of Multiple Disabled Children and Adults in Greece: the Voices and Experiences of Parents and Parent Associations

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The Education of Multiple Disabled Children and Adults in Greece: the Voices and Experiences of Parents and Parent Associations THE EDUCATION OF MULTIPLE DISABLED CHILDREN AND ADULTS IN GREECE: THE VOICES AND EXPERIENCES OF PARENTS AND PARENT ASSOCIATIONS by KONSTANTINA LAMPROPOULOU A thesis submitted to the University of Birmingham For the degree of Doctor of Philosophy School of Education University of Birmingham April 2012 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. ABSTRACT The aim of this research is to take a first step towards shedding some light in the education of MD students in Greece by focusing on the experiences of parents as they accompany their children through their journey and also to reinforce the role of parents in the educational procedure as a valuable source of information. In line with hermeneutic epistemology principles, the study focuses both on the individual and collective experiences and efforts of parents of MD children. In the first phase of the study semi structured interviews conducted with parents provided a more personal account of parent experiences. In the second phase, the same topic was approached through a survey addressed to the representatives of all parents associations for children and adults with multiple and severe disabilities in Greece, which provided the collective perspective and the efforts of the disability movement in promoting the rights of multiple disabled children and adults. During the course of the study it became evident that the parents had a lot more to say that went beyond education and this was manifested both through the interviews with the parents but also through the answers in the questionnaires provided by the members of the PAs. Hence even though the study started with a strict educational focus during its progression more issues emerged concerning the societal exclusion/inclusion for MD children and adults and their families. The data was analysed using thematic content analysis and statistical analysis for social research. The first phase revealed that parents perceived systemic, pedagogical, financial and cultural barriers in education, and it was evident that the education of MD children and adults is viewed as a personal case and responsibility of the families. Furthermore, parents described the steps and approaches that they used to cope with challenges and to secure an educational placement for their child. The findings from the second phase indicate that the parent associations have ideologically adopted a more social perspective concerning the rights and barriers of MD children and young people in education and struggle towards the educational and social inclusion of their children. However, often they are forced to assume the role of filling the gaps of the non-existent public social provision, thus focusing most of their actions towards the construction of separated settings to accommodate disabled children, and the construction of independent or semi-independent structures. The inclusion of MD children and adults into the Greek educational system, not merely as presence but as equal participators, requires the total change and reform of the social, and by extension the educational system. By examining the educational reality of MD children and adults, the study yielded the conclusion that maybe we need to return and remember the fundamental principles of education and inclusion. It is crucial to take under consideration that there still is a group of students, who are placed on the margin of policies, of the educational and social life, and often of our thoughts and consideration. Key words: multiple disabilities, education, parental involvement and participation, disability movement, social model of disability 1 ACKNOWLEDGEMENTS The writing of this dissertation has been a personal true challenge. It is true that writing a thesis is as much a journey as it is a lonely task. It was indeed a journey, but to me it didn’t feel lonely because I had people around me, kind and caring people who supported me unconditionally. First of all, I am heartily thankful to my supervisors, Christopher Robertson and Ann Lewis whose encouragement in difficult and confusing times, continuous support, guidance and patience lead me to the completion of this thesis. Academically they are an inspiration and personally I have been extremely lucky to have supervisors who care so much. I am indebted to all my colleagues at the Centre for Research and Evaluation of Inclusive Educational Programs, University of Athens for their valuable inputs and for being there whenever I reached dead ends to show me a way out. I owe my deepest gratitude to all the parents who participated in this research and agreed to share their stories and insights. To all my friends and family and most of all my husband, thank you for standing by me in all my ups and down, for your limitless encouragement and for keeping your faith in me when I had lost mine. Finally, I would like to thank the Greek Scholarship Foundation (IKY) for providing the funding which allowed me to complete my studies and to undertake this research. 2 Table of Contents CHAPTER 1: INTRODUCTION 1.1 INTRODUCTION .......................................................................................................................... 10 1.2 AIM OF THE STUDY ................................................................................................................... 11 1.3 THE POPULATION OF MULTIPLE DISABLED STUDENTS IN GREECE ....................... 14 1.4 TERMINOLOGY AND THE SEARCH FOR DEFINITIONS .................................................. 16 1.4.1 MULTIPLE DISABILITIES ............................................................................................................. 16 1.4.1.1 Terminology ................................................................................................................................................... 16 1.4.1.2 Definitions ...................................................................................................................................................... 18 1.4.2 PARENTS-FAMILY ................................................................................................................... 21 1.4.3 PARENT ASSOCIATIONS .............................................................................................................. 23 1.4.4 SPECIAL EDUCATION .................................................................................................................. 23 1.4.5 INCLUSIVE EDUCATION .............................................................................................................. 24 1.6 OUTLINE OF THE THESIS ........................................................................................................ 26 CHAPTER 2: LITERATURE REVIEW 2.1 INTRODUCTION .......................................................................................................................... 28 2.2 THEORETICAL FRAMEWORK ................................................................................................ 30 2.2.1 MODELS OF DISABILITY- THE DEBATE BETWEEN THE INDIVIDUAL/MEDICAL AND SOCIAL APPROACH OF DISABILITY AND THEIR IMPLICATIONS ON DISABILITY ISSUES ....................................... 30 2.2.2 THE HUMAN RIGHTS APPROACH ................................................................................................. 39 2.3 MULTIPLE DISABILITY IN THE GREEK CONTEXT. ......................................................... 42 2.3.1 POLICY BACKGROUND TO THE STUDY-INTERNATIONAL LEVEL .................................................. 42 2.3.2 POLICY BACKGROUND TO THE STUDY-NATIONAL LEVEL ........................................................... 44 2.3.3 A SCHOOL WITHOUT WALLS ....................................................................................................... 46 2.4 THE EDUCATION OF MULTIPLE DISABLED STUDENTS: BARRIERS AND OPPORTUNITIES-THEORIES AND PRACTICES IN AN INTERNATIONAL LEVEL .................................................................................... 52 2.5 THE EDUCATION OF MULTIPLE DISABLED STUDENTS: LEGISLATION AND PRACTICES ON A NATIONAL LEVEL ................................................................................................................................ 58 2.5 PARENTS OF DISABLED CHILDREN IN THEIR DUAL ROLE: CARE GIVERS/ EDUCATORS AND ADVOCATORS OF THEIR CHILDREN’S RIGHTS IN EDUCATION ... 61 2.5.1 PARENTS AS CARE GIVERS: ......................................................................................................... 61 2.5.2 PARENTS AS EDUCATORS AND ADVOCATORS OF THEIR CHILDREN’S RIGHTS IN EDUCATION ....... 64 3 2.6 THE ROLE AND PARTICIPATION OF PARENTS WITH DISABLED CHILDREN IN THE EDUCATION OF THEIR CHILDREN IN GREECE-CURRENT POLICY AND LEGISLATION. ................................................................................................................................... 68 2.7 THE DISABILITY MOVEMENT ................................................................................................ 71 2.8 THE DEMAND FOR INDEPENDENT
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