Problem: What problem is this project trying to address?
UNICEF report Children and Disability in Transition in CEE/CIS and Baltic States (2005) suggests that the status of children with disabilities is evolving. Even though this group has received relatively little global attention until quite recently, its intensity is an expressive indicator of the progress of any nation in the pursuit of an open, democratic and rights-based society. The overall share of children with special needs in any given population is about 10%; however, at least one million children are ‘missing’ from national disability registers. Under the communistic era, disability was a source of shame and denial. The state took on the role of caretaker; many children spent their lives in large institutions or special schools, distant from family and isolated from community. ‘Special education’ in segregated facilities is still the overwhelming policy approach. Today, there has been significant progress in attitudes and, to a lesser degree, in action on integrating children with disabilities into mainstream schools. The 27 transition countries – like other high- and middle-development nations – still approach disability firstly as a medical issue and then as a social welfare demand.
Thinking in broader terms of Europe, several continental early childhood intervention (ECI) working groups concluded they face challenges when putting efforts to bring about stronger consistency of quality in ECI provision. Different cultures have different values and expectations. Diverse political systems have implications of differences in policy. Resources are not equally available to support ECI and the social commitment to young children, especially to vulnerable young children and their families. ECI is not represented in the European universities, hence there is lack of research and scientific output and the identity of experts is not enough strong. In many cases, interdisciplinary cooperation of professionals is not working properly. Lack of transparent communication and inefficient coordination between social, health, and educational sectors should be remedied. Besides models and temporary projects, every country needs a stable legal foundation of long term financing for interdisciplinary ECI services. Knowledge exchange is getting more and more substantial along with discussions of values and ethics in changing European societies. Additionally, enhancement of public relations is of a high importance to generate awareness for the need for ECI.
Solution: What is the proposed solution? Please be specific!
In 1991, Barbara introduced the former communist Europe’s first opportunity for families of children aged birth to six years with autism, delayed or impaired development and premature babies at risk to access therapeutic and developmental services at one place. Her center quickly became an example for countries like Czech Republic or Slovakia to follow when building up their national early childhood intervention systems as it clearly showcased how one can make the theoretical foundations of the field work on a practical level. Barbara changed the paradigm of care by developing new types of relationships with hospitals, doctors, parents, experts, teachers and all kinds of supporters and convinced them how important it is to intervene as early as possible to let children thrive and progress when their brain development is the most active.
The first milestone in her work was to integrate early childhood intervention provision into the state welfare systems under the aegis of public education law in 1993. However, throughout the years, she realized it is no longer enough to wait for policy makers to set direction or allow professionals to have full autocratic control over the child’s development. She empowered a movement of parents to support and meet the needs of their children much more actively, thus pushing governments, professional communities and the entire society towards better reflecting and enabling the participation of its diverse citizenry in keeping with their rights. Moreover, Barbara also built a movement of caregivers to collaborate with each other in a transdisciplinary way without losing their special disciplinary contribution and considering the final outcomes for children and families who do need holistic support.
She established a model for a center catering to all therapeutic requirements of a single child under one roof, providing extremely professional, high quality services for families and building on interdisciplinary team work addressing every type of special need, delayed development and risk factor. Barbara strongly capitalized on the wide interest of others in replicating her work or taking the learnings of her work to their own work. Thus, she took strategic efforts to spread her idea through mobilizing other changemakers in Europe - especially in countries in transition - and seeding a host of local variants around the original model in Ukraine, Serbia and Romania.