Executive Summary
Purpose
The purpose of the present Situation Analysis of Children with Disabilities in Albania is to generate comprehensive knowledge about children with disabilities to inform concrete actions by the Albanian government and UNICEF Albania to address the most critical rights violations of children with disabilities. The findings of this study provide evidence for better understanding of the bottlenecks and suggest some critical formative adjustments to fully realize the intentions of the Albanian policy and legislative framework on children with disabilities.
Context
Albania ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2012 and became a state party to the Convention in 2013. In its initial State Party submission to the Committee on the Rights of Persons with Disabilities, Albania reported that the legislation has largely been aligned with the UNCRPD. The policy and legislative framework in support of children’s rights and the rights of children and adults with disabilities is dynamic and evolving. However, putting policy into practice is noted to be challenging. The most recent concluding observations of the UN Committee on the Rights of the Child in 2012 noted the limited capacity of Albania to implement child rights-related legislation and urged the government to invest in putting policy into practice through improved coordination and resource allocation.
The present study takes place against this background and that of the reform agenda established by the current government following the general elections of June 2017, anticipation of a date for opening of European Union (EU) accession talks and continued economic expansion. Recent reforms in public administration in late 2017 have seen a reduction in the number of ministries, from 21 to 14, contributing to a dynamic situation as departments are established, personnel reassigned and budgets allocated. Whilst this has in some instances contributed to deferrals in policy and legislative implementation it also offers opportunities for improved multi-sectoral cooperation through the amalgamation of two sectoral line ministries to create a new Ministry of Health and Social Protection (MoH&SP).
Method
The study enquiry concept considered the life-course of children 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 qualitative data from focus group discussions (FGDs) and key informant interviews (KIIs), and with quantitative secondary administrative and survey data analysis.
An initial desk review found that the voices of children with disabilities and their parents were largely missing from the extensive body of recent research in Albania. Primary data collection therefore focused on gathering the perspectives and experiences of children with disabilities and their parents, the specialists who work closely with them, parents of typically developing children, and the national and local authorities responsible for implementing policy and legislation. A total of 300 people took part in the study, from four countiesi of Albania, among whom 79 were children with disabilities, of age 10–17 years, 42 boys and 37 girls.
Synthesis of key findings
The rights of children with disabilities are increasingly at the forefront of a dynamic and evolving legislative and policy dialogue in Albania. This framework is largely in compliance with core global and EU human-rights instruments and is driving reforms in the development of inclusive services. However, implementation is lagging behind the intention and goals of this framework.
The definition of disability in the Albanian legal framework is largely aligned (with some exceptions) with the UNCRPD. In practice, however, a medical model of disability predominates, including an assessment for certification of disability to access disability allowances. This has consequent effects on access to services and inclusion. A multi-dimensional functional assessment based on the ICF has been tested in a few administrative units of Tirana however an evaluation and plans for the roll out were not available at the time of the present study.
Latest survey and administrative data indicate that 2.5- 4 percent of the child population in Albania has a disability that has been certified by the medical assessment commission.
The medical assessment of children with disabilities can be supplemented by an educational assessment to determine support requirements for inclusive education. However, there is no systemic connection between the procedures.
A focus on developmental milestones rather than definitive diagnosis has been shown to increase the chances for early intervention that will improve a child’s opportunities and minimise the effect of any developmental delay. However, standardised systems for early identification of developmental delay in children are currently insufficient.
Administrative data suggest that there has been an increase in the number of children with disabilities accessing services, from three percent in 2015 to eight percent in 2017. However, almost half of all social services are provided outside the public sector, and civil society organizations report a gradual withdrawal of external funds, a trend that is likely to continue.
There is no systematic provision or access to Albanian Sign Language, Braille or assistive devices and technology at affordable cost, significantly preventing the full inclusion of children with disabilities. The civil society sector has provided access on an ad hoc basis. Nevertheless, as noted above, its capacity to sustain the level of service cannot be guaranteed.
Around half of school-age children receiving disability allowance are in education, though many are not accessing education adapted to their individual learning needs. Integration into mainstream schools, has not necessarily resulted in inclusive education. Recent support for inclusive education may be contributing to more positive attitudes, but children with disabilities and their families still report stigma and discrimination in schools and in leisure and play activities, and in their communities.
Children with communication difficulties are particularly isolated.
Most children with disabilities in Albania live with their families. However, such children are also overrepresented in the public system of residential care. No matter where they are living, children with disabilities, including intellectual disabilities, have reported that they are leading busy ordinary lives and that they are enthusiastic about their futures. This is significantly different from the perceptions of their parents, who are less optimistic. Such parental anxiety can limit their ambitions for their children.
Finally, data on children with disabilities are subject to variations in sectoral reporting mechanisms and cannot be correlated. For example, education sector data on children with disabilities have different descriptors from those of State Social Services. Thus, it is not possible to compare prevalence data and access to service data. This places limits on effective strategic planning for broader inclusion of children with disabilities in current services and on planning for future services, in compliance with the existing legislation.
