To understand the meaning of disability for children, parents and providers in Bulgaria, Latvia and Russia

Abstract

This research was commissioned by the UNICEF Innocenti Research Centre as part of a larger MONEE (Monitoring Eastern Europe) project covering countries in transition – the 27 nations of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS). The MONEE Social Report combines qualitative and quantitative material in the 2005 Publication 'Children and Disability in Transition' (www.unicef-icdc.org) This paper is concerned with analysing in depth the findings from the qualitative research as the basis for recommendations that keep the voices of children, young people, families and medical and social care providers at the heart of the policy process. This research was conducted in three countries – Russia, Latvia and Bulgaria. The reason for choosing these three countries in consultation with the networking group included the issue of children's rights for children with disabilities in Russia which has been widely reported (UNICEF 1999, 2003). As the largest CIS country, Russia's influence in policy and practice in other neighbouring countries is likely to be significant. Latvia was one of the CEE countries who joined the EU in May 2004 and Bulgaria hope to join the EU in 2007. Thus these three countries are in different stages of transition. The organisations and systems for supporting disabled children are likely to be influenced by political and market transitions and these three countries are interesting examples from which to explore the concept of transition as it relates to disabled children and their families. The theoretical model that informs this research is concerned with applying the social model of disability to families rather than individuals. The structures, policies and processes that cause frustration and disappointment affect the whole family not just the disabled child (Dowling and Dolan 2001). The social model applied in this context aims to combat the past medical and educational ideology of 'defectology' – seeing children with disabilities as defective models – which has been evidenced particularly in Russia but also all other former communist countries (Grigorenko 1998). Defectology as a professional discourse has isolated children from their families and created hostility between medical providers and parents who believe that their disabled children have been taken away from them because professionals believed it was in the best interests of their child to do so. Many of the challenges that are described by children, young people, parents and providers are challenges that need social policy not medical solutions. Medical solutions are also very important for these children. However equally important is the need for medical and social practitioners to work alongside each other, despite their professional and theoretical differences, to provide the best social, emotional and physical opportunities for children with disabilities