Child disability in Albania – Disability prevalence, access to services and quality of services

In ethical terms, in any society caring about children is the primary responsibility of parents and society itself. In addition, pragmatic viewpoints suggest that care of children with disabilities increases their chances to be more prepared and active participants in the economic life of the country when reaching adulthood.
Accurate data on disability prevalence in children are missing not only in Albania, but also in other developed countries. Although studies indicate that approximately 85% of children with disabilities live in countries in development (WHO, 2011), verification of such data becomes a tremendous task, not only due to stigma, but also due to debates associated with the definition of disability itself, its identification instruments or disability assesment. This is the reason why the UNICEF (2013) world report views these worldwide data on disability as “essentially speculative”. International practice has demonstrated that including a series of questions on disability measurement in national censuses has historically been neither sufficient nor comparable. Moreover, studies involving key persons from the community to identify children with disabilities have shown that they have underestimated prevalence, hence up to date door-to-door interviews conducted by trained persons, who interview the parent of the child, remains the most effective approach.
Presently, there are contradictory data on disability prevalence in children and youth in Albania. Regardless of the urgent need, no specific study has been conducted to assess the scale of disability prevalence in Albanian children and the services available to support their needs. Furthermore, previous data collection on child disability in Albania has relied on models not in compliance with the requirements of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD). Nevertheless, such data on prevalence are considered imperative also because trustworthy data account for planning and expansion of more effective interventions and support with regard to both intervention cost and time.
Countries that have ratified the UNCRPD, such as Albania, pursuant to Article 31 of the Convention are required to “undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention.” Furthermore, the same article of the UNCRPD states that the state shall “identify and address the barriers faced by persons with disabilities in exercising their rights” (UN, 2006).
The present study marks the first national study on disability prevalence in children and youth in Albania. In terms of approach and conception, methodology and selected research instruments, this study represents a new era in this field. Moreover, it has been designed in compliance with the UNCRPD requirements regarding statistical data collection for persons with disabilities.
Apart from putting forth necessary quantitative statistical data, gathered through parents’ perceptions, this study provides a clear tableau of the situation with services for these groups of children and youth and their families.
Up to date, provision of services for children with disabilities and difficulties in certain areas has been, among others, significantly hindered due to the lack of such data. For this reason, the results of this study may be a reference point for all actors to facilitate planning and improvement of services provided to children at risk of developing a disability and to children with disability, as such services, among others, shall be based on accurate and comprehensive statistical data.

Child Disability in Albania