Acknowledgements Acknowledgements Authors: Joanna Rogers and Elayn M. Sammon Data Collection Team: National coordinator / Blerta Çani Drenofci, National Senior Researcher / Rudina Rama, National Researchers / Florida Kalemi and Narbys Ballhysa, Data Collectors / Ilda Bozo, Juliana Shllaku, Enron Seiti, Mirela Juka, Daklea Kalaja, Sopot Bogdani, Rovena Rojba, Anisa Hysesani, Adriana Sinoruka. Editing: Ian F Wilson Photography: Jutta Benzenberg Graphic Design: REC Design Special thanks to Ms.Oreada Kita, Founder and Director of Jonathan Center Albania, which offers free professional daily services to children, for providing support and access to children’s voices and their images. The authors of the report extend special thanks to the children with disabilities, their families and caregivers who openly shared their views and opinions for this report. The authors are indebted to the representatives of the Government of Albania at national and sub-national levels for their commitment, inputs and support. In particular, the Ministry of Health and Social Protection and Ministry of Education, Sports and Youth provided support and guidance in the design and implementation of the study. Sincere thanks are particularly extended to the collaborating partner the Albanian Disability Rights Foundation (ADRF) for their thorough approach to the primary data collection and overall support throughout the process. Sincere thanks to David Gvineria, Child Protection Specialist, and Elda Hallkaj, Child Rights Monitoring Specialist, for driving the process and for their commitment, consistent and reliable support. The UNICEF Albania team as a whole were particularly helpful in sharing their experience and in diligently supporting this exercise. This publication became possible thanks to the EU funded multi-country project on ‘Protecting children from violence and promoting social inclusion of children with disabilities in Western Balkans and Turkey’. We All Matter! Situation Analysis of Children with Disabilities in Albania Situation Analysis on Children with Disabilities in Albania 1 Disclaimer Foreword The findings, interpretations and conclusions expressed Dr. Roberto De Bernardi in this document are those of the authors and do not UNICEF Representative in Albania necessarily reflect the policies or views of UNICEF. As long as our environment remains conducive to our needs, we Readers are encouraged to use material from this report rarely consider how much our abilities depend upon it. Reading the for their own publications. As copyright holder, UNICEF in Situation Analysis of Children with Disabilities in Albania has made Albania requests due acknowledgement and a copy of the me reflect greatly on this matter. publication. It is no surprise that, in Albania, the majority of children with disabilities and their caregivers experience survival challenges each and every day, For further information, please contact: let alone those of a meaningful personal life, quality education, health care and participation in the life of the community. Nevertheless, what UNICEF Albania Country Office struck me as remarkable is how resilient such children are despite Skenderbej Street., UN House Bld, 3rd floor the odds stacked against them and how optimistically they view their Tirana, Albania Telephone: +355 4 45 48 400 futures, in marked contrast to adults. Email: [email protected] Not only does this report make a major contribution to our understanding of child disability in Albania and its impact on individual children, their families and society, but it also highlights the barriers that such children face in the health-care, education, social protection and other critical domains. The uniqueness of this study is that, for the first time, it brings children’s and parents’ voices together directly into the report. UNICEF has a mandate and moral duty to address barriers to the active participation of children in every issue that affects them, and more so when they are discriminated against. In a situation in which many children with disabilities do not access quality health care, rehabilitation, education, protection and family support services, they will never get the chance to lead decent and productive lives. This report proposes interventions that are required at different levels and will serve as a valuable tool to policy makers, researchers, professionals, child rights advocates, civil society groups, parents and all others involved in addressing disability-related matters in the country. Situation Analysis on Children with Disabilities in Albania Executive Summary 2 3 general elections of June 2017, anticipation of a date for opening Executive Summary of European Union (EU) accession talks and continued economic expansion.4 Recent reforms in public administration in late 2017 have seen a reduction in the number of ministries, from 21 to 14, 300 Purpose contributing to a dynamic situation as departments are established, people took personnel reassigned and budgets allocated. Whilst this has in part in the The purpose of the present Situation Analysis of Children with some instances contributed to deferrals in policy and legislative study in Disabilities in Albania is to generate comprehensive knowledge about implementation it also offers opportunities for improved multi-sectoral children with disabilities to inform concrete actions by the Albanian cooperation through the amalgamation of two sectoral line ministries government and UNICEF Albania to address the most critical rights to create a new Ministry of Health and Social Protection (MoH&SP). 4 violations of children with disabilities. regions of Albania The findings of this study provide evidence for better understanding of whom of the bottlenecks and suggest some critical formative adjustments Method to fully realize the intentions of the Albanian policy and legislative framework on children with disabilities. The study enquiry concept considered the life-course of children 79 with disabilities within the context of the socio-ecological framework of human development. A mixed methods approach was applied, with the collection, analysis and integration of Context qualitative data from focus group discussions (FGDs) and key children informant interviews (KIIs), and with quantitative secondary with Albania ratified the United Nations Convention on the Rights of administrative and survey data analysis. disabilities Persons with Disabilities (UNCRPD) in 2012 and became a state party aged to the Convention in 2013. In its initial State Party submission to the An initial desk review found that the voices of children with 10-17 Committee on the Rights of Persons with Disabilities, Albania reported disabilities and their parents were largely missing from the that the legislation has largely been aligned with the UNCRPD. 1 The extensive body of recent research in Albania. Primary data policy and legislative framework in support of children’s rights and the collection therefore focused on gathering the perspectives and rights of children and adults with disabilities is dynamic and evolving. experiences of children with disabilities and their parents, the However, putting policy into practice is noted to be challenging. 2 The specialists who work closely with them, parents of typically most recent concluding observations of the UN Committee on the developing children, and the national and local authorities Rights of the Child in 2012 3 noted the limited capacity of Albania to responsible for implementing policy and legislation. A total of 300 implement child rights-related legislation and urged the government to people took part in the study, from four countiesi of Albania, among invest in putting policy into practice through improved coordination and whom 79 were children with disabilities, of age 10–17 years, 42 resource allocation. boys and 37 girls. The present study takes place against this background and that of the reform agenda established by the current government following the i Tirana, Kukes, Gramsh, Berat Situation Analysis on Children with Disabilities in Albania Executive Summary 4 5 Synthesis of key findings the effect of any developmental delay. However, standardised systems for early identification of developmental delay The rights of children with disabilities are increasingly in children are currently insufficient. at the forefront of a dynamic and evolving legislative and policy dialogue in Albania. This framework is largely in Administrative data suggest that there has been an compliance with core global and EU human-rights instruments increase in the number of children with disabilities and is driving reforms in the development of inclusive services. accessing services, from three percent in 2015 to eight However, implementation is lagging behind the intention and goals percent in 2017. However, almost half of all social services are of this framework. provided outside the public sector, and civil society organizations report a gradual withdrawal of external funds, a trend that is likely 3% 8% The definition of disability in the Albanian legal framework to continue. 5 is largely aligned (with some exceptions) with the UNCRPD. 2015 2018 In practice, however, a medical model of disability There is no systematic provision or access to Albanian predominates, including an assessment for certification of Sign Language, Braille or assistive devices and disability to access disability allowances. This has consequent technology at affordable cost, significantly preventing effects on access to