Together We are Stronger: challenges of post-Soviet healthcare.

Abstract

Perceptions of disability in the late Soviet Union were mostly severe and inhumane. People with impairments were labelled ‘invalid’, institutionalized or confined to their homes by their families, and were isolated from ‘healthy’ society. Society in general did not understand disability; it was highly stigmatized. Childhood disability was categorized strictly according to medical impairments and social issues were neglected. All chronic disorders were thought to be curable and patients were overmedicated with many drugs. Since the fall of the Soviet system many positive changes have taken place. In 2000, a group of experts in Georgia (including the European Academy of Childhood Disability [EACD]) began discussing issues of disability and equality, and prepared a document that was recently approved by the Georgian Parliament. In parallel, the process of deinstitutionalization was very successful: over 5 years the number of institutionalized children dropped from 4000 to 50. The main challenge was changing from a medical to a social model. It was very difficult for everyone – parents, physicians, and stakeholders alike. Awareness about the multidisciplinary approach to disability was low, there was a lack of human resources, and many specialties did not exist or were not oriented towards evidence-based principles. But we moved on together with recently founded parents’ organizations, non-governmental organizations, and governmental support. With the cooperation of our European partners in disability, a first generation of occupational therapists were trained, physiotherapists were retrained, and the first multidisciplinary teams appeared. In 2009 to 2011, a nationwide campaign for increasing awareness about autism applied the multidisciplinary approach to neurodevelopmental disorders. Together with parents, the Rustaveli National Foundation, and our partners from the West, we trained the first applied behaviour analysis therapists, organized training of trainers, and developed a network not only in large cities, but also in some rural regions. With help from the Open Society Georgia Foundation, the next step forward was the development of a coalition of organizations working with preschool children with disabilities, and then preparing a strategic and action plan for an Early Childhood Intervention program, which was successfully implemented. There are now 13 organizations in the coalition – 25 services in 14 regions working with children at risk – and their number is progressively increasing. Initially there remained a gap in modern speech and language therapy, but with the help of European Speech and Language Organization we now have the first year of a master program set up at Ilia University in Tbilisi. Nowadays most children with disabilities receive inclusive education, and you can see more and more of these children in stadium watching football or rugby games, or in theatres and cinemas. Despite such rapid progress in thinking and action, we still face many problems, including under-diagnosis, late identification of children at risk, geographical disparities, funding and accessibility problems, lack of professional human resources, absence of continuing education, and often problems of quality of care. Stigma remains very important, but parent groups are very active in struggling for rights, and organizing problem-oriented groups with professionals and stakeholders. Since 2006 our association has been working closely with the EACD. We are proud that Georgia is hosting the 30th EACD Annual Meeting in Tbilisi on 28th to 31st May 2018. In addition to providing an update on many developments in the field and promoting international exchange, this meeting will raise regional awareness of childhood disability to an unprecedented scale, increase knowledge of professionals, and give local opinion makers the opportunity to share their experience and learn about progress in research and translation to practice. The International Alliance of Academies of Childhood Disability also decided to offer a two-day training program for local professionals and parents within the framework of the meeting. This will be the beginning of a big project of educational partnership. With the help of our partners and friends worldwide we can join in European advances in knowledge and experience, and help to extend it to our region. We can strengthen this team approach to disability and genuinely feel that together we are stronger.