Living in Albania with 47 chromosomes

Analysis based on the findings of Down Syndrome Albania Foundation

To have Down syndrome in Albania, it is a challenge in itself due to the social and infrastructure obstacles that this people face, more than a challenge that syndrome brings itself in the development of the person.

Children with Down syndrome needs an early therapeutic intervention, starting from the early infancy (0-3 years old). Early therapeutic intervention includes physical therapy, psychomotor skills, speech &language therapy, development and occupational therapy. Early therapeutic intervention it is necessary because helps to maximize the potential of the child, physical and mental wellness and also helps on developing a healthy, independent life (in his future) and inclusiveness. Early intervention system doesn’t include just the child but includes also environments where he’s participating, like, family and his preschool education system. Early intervention, consist on services which should be offered and supported by the state’s institution but in our country unfortunately the quality of these services it is not appropriate. These services are offered by many organizations and private centers without the subventions from the state institutions, also uncontrolled and without the appropriate standards. These services, followed privately, costs very much for the family (60 000 Lek per month) comparing with the fact that the monthly payment for disability is 9700 Lek.

Individuals with Down syndrome, because of their health complications, during their life they have to follow a check-up medical controls which are specific. In a survey done with the parents of our center next to DSA, we found out that they do not get the right information from the health professionals about the medical controls and periodic diagnosis, which have more probability to occur to a child or to an adult with Down syndrome. Another problem, especially in other cities in Albania, is the lack of the communication for the syndrome diagnosis and not just, also information about the health complications that accompany the syndrome like hearing congenital anomaly, which in most of the cases requests immediate intervention. Our country still doesn’t have the capacity to do these interventions or to do post-operator care for these congenital anomalies.

On February 2015, our Foundation organized the scientific conference “Health and Wellness for Individual with Down Syndrome”, in which participated foreign health professionals and were presented all health complications of the syndrome and their treatment. In this conference participated 150 health professionals (pediatrics, family doctors and obstetricians- gynecologist). As a result of this conference, which was supported by US Embassy, Down Syndrome Albania Foundation published in Albanian language “Healthcare Manual for Individuals with Down Syndrome”. This manual is a publication of European Down Syndrome Association, member of which it is our foundation too. On October 2015, a quantity of this manual will be given to the Health Ministry, in order to help spreading it more in many hospital centers.
DSA makes a constant effort, that children and adults with Down syndrome receive qualitative medical service within and outside Albania. For this reason DSA has done many agreements with private hospital in our country like Hygeia Hospital, American Hospital and Hospital Center “Zoja e Keshillit te Mire”. In these hospitals, for every individual with DS the examinations are free of charge and on every other service there’s 20-30% discount. Through the agreement with Hygeia Hospital, every baby born with DS that needs heart surgery intervention, which can’t be done in Albania, has the possibility to do it in Miteras Hospital, which is part of Hygeia Hospital in Greece.

Convention on the Rights of Persons with Disabilities constitutes inclusiveness of children with disabilities in the system of education. As one of its objective, Down Syndrome Albania Foundation organize trainings for educators and kindergarten psychologist of Tirana, focusing on the knowledge about the carefulness, the development and the education of children with DS. As a result of these trainings, in order to help and facilitate the work of every educator and psychologist, our Foundation has published a practice manual “Care, education and development of children with Down syndrome”, with its objective to provide an inclusiveness access.
The current situation in the context of inclusive education it is worse. Children with DS have difficulties to be accepted in the public schools, there’s no assistant teacher and there are many other problems in offering an appropriate support, and on being able to provide education and learning process in an inclusive environment. The situation is more dramatic and hopeless in the middle and the professional education system.
Many parents, as a consequence of inappropriate conditions in public schools like: high number of students in classroom, the absence of assistant teacher etc.., are oblige to not take their child to school or to take him in a private school, if they have good financial conditions. Very often child’s mother takes the role of assistant teacher during lessons in school.

Considering the non-acceptance in schools, the lack of support system after the school, which should ensure an active and inclusive life for an individual with Down Syndrome; it is considered already a fact that one of the parents, in most cases are mothers, become a companion for their child, becoming in this way a passive work force. Parents don’t receive any payment from the state, because according to the laws in our country there’s no payment for the caregiver of a child/adult with DS. This entire situation brings difficulties on the family system, with its social and economic consequences.

Considering the situation described above, talking about the employment of individuals with DS in Albania it may be seen as luxury, though, we have information that with the insistence of parents, there’s a case of employment of a youth with DS in our country.

Down Syndrome Albania Foundation in collaboration with State Social Services Department, for the first time, has made possible gathering all the data about individuals with DS in Albania. Based on Medical Commission of Work Ability data, currently in Albania lives 634 individual with DS. Cities that have the highest incidence of individuals with DS are: Tirana, Elbasani and Durresi. According to these statistics, in Albania there are 269 individuals with DS that have school age (basic education + secondary education) and 365 adults. We believe that the number of individuals with DS in Albania it is higher than that, because not all of them are part of the Medical Commission of Work Ability scheme, and this comes for two reasons: as many of the parents have no information about this scheme or they don’t want their children to be part of this scheme, due to non-accepting reality and the fear of stigmatization.