In Germany, people with Down syndrome are mostly happy and active members of society. Only a few thousand kilometers away, in Kosovo, people affected by Down syndrome often suffer from severe social exclusion. In our project “Down Syndrome Kosovo”, we want to help children with Down syndrome and their families in Kosovo by means of educational actions.
On-site research revealed these children face failing governmental aid and lacking special needs education. Moreover, they are often confronted by social hostility: fears are stimulated by the fact that people are not aware of what Down syndrome actually is. The possibility of inclusion of the disabled into society is not yet in the minds of a big share of the population. In consequence, the children are often confined to their domestic environment. Having to care for the children results in their families also being excluded from society or hiding the children.
Issues with the organization of the educational system add to these social problems. Usually, kids with Down syndrome are sent to local schools, but teachers there are often not trained in dealing with children with disabilities. Dedicated pedagogues, speech therapists and other specialists are often not available or too expensive. Sometimes, people are simply not aware of the positive impact special training can have on the mental development of the children.
In addition, financial pressure poses a big problem for many families. In many cases, the monthly pension that is granted a person with Down syndrome by law is not paid. Different reasons, including the shame the families often feel and the inaction of the responsible boards lead to the fact that the syndrome is not diagnosed and thus the pension cannot be paid. Families concerned and self-aid groups in Kosovo also report cases in which the pension is paid irregularly in spite of a valid diagnosis or in which repeated medical examinations are required by the relevant institutions.
These structural problems are best to be solved by the Kosovar institutions. However, without absolving the government from its responsibilities, we believe that we can make a lasting contribution to enhance the quality of life for people with Down syndrome in Kosovo: professional training for parents and teachers should diminish social barriers, which we believe to be mainly the result of lacking knowledge of Down syndrome. We therefore trust the transfer of information to lead to a durable improvement of the life situation for the people concerned.
In particular, we will organize a one-week workshop held by experts from the German info-center for Down syndrome (“Deutsches Down-Syndrom Infocenter”) and the “European Down Syndrome Association” in cooperation with local partners from “Down Syndrome Kosovo” and the Caritas in Prizren. This project pursues two objectives: First, to foster the competence of local professionals in how to deal with children with Down syndrome. And secondly, give parents a practical guide on how they can improve the life of their children with Down in daily life.