I AM LIKE YOU An investigation into the position of children with disabilities in Albania A Consultancy Report for “Save the Children, Albania Programme” Alison Closs MA MEd (SEN) Virxhil Nano PhD (Spec. Psych.) Senior Lecturer/Researcher Assistant Professor and in Equity Studies &Special Education Head of Qualifications Department Department of Educational Studies Institute of Pedagogical Research Moray House Institute of Education Rr. Naim Frasheri, 37 University of Edinburgh Tirana Holyrood Road Albania Edinburgh EH8 8AQ Tel. (work~direct line): 00 44 131 651 6443 Tel./Fax 00 355 4 256 441 Tel. & Fax. (home): 00 44 131 667 2086 Email alison.closs@ ed.ac.uk Email virxhil_nano@ yahoo.com Estevan Ikonomi, MPA: Programme Coordinator, Disability Save the Children, Rr. "Komuna e Parisit", L. 8, P. 1 Maji, Vila “Lami” P.O. Box 8185 Tirana, Albania Tel. +355 4 261840, 261929, 266227 Fax: +355 4 263428 Email: estevanikonomi@ savealbania.org April 2003 (edited in March 2005) - 2 - Acknowledgements Ge would like to thank warmly all the very many people who received our research team in visits or responded to our numerous questions in other ways. They included personnel from Government Ministries, Governmental and Non-Governmental Organisations, individual professional people with an interest in disability, including some with disabilities, and – above all – children and young people with disabilities and their families. They were unfailingly courteous and patient despite their own busy lives and multiple responsibilities. We hope that they feel that we have done justice to their views and that the report will be a positive contribution to improving the position of children with disabilities within Albanian society. The title of our report is an extract from a statement made to us during our research by a boy with physical and mental disabilities. He had been mocked in the street about his appearance and wanted to protest to the other children that they should not tease him because, ‘I am like you’ (see Section 2 of the report for his full statement). We also believe that children with disabilities are children first, with very much in common with all other children, and we share this boy's feelings of frustration that this commonality and all children's equal value and rights are not always recognised in the positive ways that they should be. The photographs on our inner title page are of Eduard and Zhuliana in the midst of their families. They are now young adults, who have been fortunate enough to spend their childhood in families who love them and who work hard to ensure the best life possible for them. We are grateful to them and their families for allowing us to use their photographs. We have deliberately not included an executive summary. Readers who cannot afford sufficient time to read the report in its entirety should read the collated recommendations at the end of the report to realise the extent of work still to be undertaken for Albania's children with disabilities. Finally we must issue the usual disclaimer, that this report records the findings and interpretations of the researchers themselves. It does not necessarily reflect the position of Save the Children (Albania), which funded the research, and the publication of the report. Alison Closs Virxhil Nano Estevan Ikonomi April 2003 Created by Estevan Ikonomi - 3 - I Am Like You An investigation into the position of children with disabilities in Albania A Consultancy Report for "Save the Children, Albania Programme” by Alison Closs and Virxhil Nano with Estevan Ikonomi Created by Estevan Ikonomi - 4 - Index of contents 1. Introduction 2. Albanian society and disability 3. Ethnic and linguistic minority issues 4. The Albanian Government and disabled children 5. The role of Non-Governmental Organisations 6. Efficient cover of work to be done: gaps and ‘overlap’ in activities and roles 7. Numbers of children with disabilities and data collection 8. ‘Invisible’ children 9. Families of children with disabilities 10. Siblings 11. After childhood – adult occupation and care 12. Financial support for families 13. Social services and social support at critical times 14. Residential Development Centres & Day Centres 15. Education 16. Inclusive schools 17. Special classes and schools 18. Educational early intervention 19. Health services 20. Professional roles and training Conclusions Collated Recommendations References / Bibliography Appendix 1: The research team, research methodology and organisation of the report Appendix 2: Visits and meetings undertaken by the research team Appendix 3: Tables of Governmental Institutions with numbers of pupils special schools and Classes), residents (Residential Development Centres and State Orphanages) and clients (Day Centres) with disabilities Appendix 4: Questionnaire for NGOs Appendix 5: List of Acronyms in English and Albanian Created by Estevan Ikonomi - 5 - <I Am Like You’ An investigation into the position of children with disabilities in Albania “W e saw that he had become suddenly dangerously ill. I carried him wrapped in blankets during the night across the hills for six hours to reach help. In the hospital they wanted to take fluid from his spine but I wouldn’t allow it at first because I thought the big needle could kill or paralyse him. M aybe I was wrong in that, but they gave him antibiotics anyway – we had to pay for these. It was meningitis. He had a high temperature for twenty days and was in a deep coma. Some people said it was the evil eye but I didn’t believe that, it was God or the temperature from his illness. Then he began to recover very, very slowly, first he moved his limbs a little then eventually he became conscious. Later we realised that he was deaf. He did not learn to talk and maybe he is not completely all right in other ways. W e took him to a holy place . who knows?” “W e decided to leave the village for the sake of our children (they have two other children) – we were so isolated and we wanted a better life for them but it is hard here in Tirana, very hard. W ell, there’s no real work, just what you can do from time to time, housing isn’t good, but the (extended) family sometimes helps. I hadn’t heard before about this school (school for deaf children) but when we came to Tirana we heard about it and I brought him here - they have been good to us. I am happy for him to be here with other deaf children, but I really want him to be normal. I used to hope for a cure, but now, well . My son uses signs and I can’t understand him although my wife does a little because she learned in the school. The other two (children) feel frustrated too but sometimes they all play and laugh together. Sometimes he is very unreasonable and loses his temper when we can’t understand something he wants, and then I get angry too. But he is small and I am large, so I must try to be patient. The future? W ell, he is still a small boy. He likes technical things like computers. There will probably be more worries about him later. W e can only stay here and hope, although we miss our village. But you cannot live in distant places and have a child with problems. Help is only in the centre, here in Tirana.” (Father of a boy aged 8 who had meningitis at nine months old and became deaf – see Section 2 of this report) Created by Estevan Ikonomi - 6 - Section 1: Introduction “Save the Children” commissioned us as a team of three people to undertake a widespread and intensive investigation into the current situation of children with disabilities in Albania. It involved visits to Ministries, GOs and NGOs and Associations of various kinds, primarily for discussions with key personnel but also, where practicable, to see services in action, speak with personnel at other levels and with service users. We participated in a number of meetings with parents’ associations and met families within their own homes across Albania, speaking with children and young adults with disabilities, their parents and siblings. Only the far north-east of the country and the extreme southern coast were not covered although both Albanian team members were aware to some extent of the situation of children with disabilities in these more distant areas. The research took place mainly throughout February 2003 but some follow-up meetings and discussions took place during March conducted by the Albanian members of the team. We also drew on relevant publications from previous investigations and on NGO and other reports (see References at the end of the report). We have used these with caution as some are possibly out of date in a fast changing area of work, although only a few years old. Occasionally we have questioned some of their findings or conclusions and would hope that our own work would also be scrutinised critically! Our research was largely qualitative rather than quantitative although we provide lists of GOs and current numbers of their pupils/clients. (See Appendix 1 for a more detailed account of the research team, the process of the research, including methodology and data analysis, and of the structure of the report, Appendix 2 for a list of meetings, and Appendix 3 for tables of GOs' locations and numbers of pupils/clients/residents.) We were asked to write an informative report outlining the situation of disabled children, giving recommendations for action by Government and Non-Government agencies, suggesting funding priorities for donors and identifying some projects appropriate for Save the Children itself to undertake in Albania. Recommendations are included in the text and then collated and in some cases elaborated, Section by Section, at the end of the report.