Comment on the statistics of 2018 for individuals with Down syndrome in Albania

Down Syndrome Albania Foundation, in cooperation with the Department of State Social Service, at the Ministry of Health and Social Welfare, have released new statistics of individuals with Down syndrome living in Albania and are part of the scheme of the Medical Commission for Assignment of Ability to Work (KMCAP). According to the latest report generated by the national electronic register issued on 30.01.2019, currently, in Albania, live 682 individuals with Down syndrome. The number of individuals with Down syndrome in Albania in 2006 was 643 individuals.
This year the DSA requested that the electronic register also identify the number of people with SD who have benefited from custody payment as a result of profound disability. There are 375 people (52% of the total population with SD) who have also benefited from the custody payment. Unfortunately this is an indication that the lack of therapeutic services for individuals with SD, is deepening the degree of their disability.
The largest number of SD population in Albania is 26-36 years old. Followed by the age group 19-25 years. The smallest number belongs to the age group 0-3 years.
Our foundation is lobbying for the right to custody payment to be legally recognized to individuals with SD, not as an indicator of their degree of disability but as a necessary financial tool that would help the families of these persons to access the necessary therapeutic services at the organizations that provide these services or at other private operators. This financial means is also needed for families, to pay privately for an assistant teacher for children of school or preschool age (kindergarten and kindergarten) until all classes with children with SD are equipped with assistant teachers on time. full.
Individuals with Down syndrome get sick more often than the rest of the population, as this genetic condition affects (weakens) their immune system. As a result, spending on medication is more frequent for them. This is another factor that makes it necessary to provide custody payment for people with SD.
After several years of battle, DSA has managed to convince the Albanian state and the Ministry of Health to reimburse the genetic analysis of babies with trisomy 21 (SD), as this analysis of 8 years could be performed by private clinics at a cost (starting from 300 euros) unaffordable for family members. The inability to perform the analysis prevented families from seeking commission from the KMCAP, thus preventing them from receiving payment as a result of their disability.
Disability payment for a person with SD is 10,140 ALL / month. While the guardianship payment in case it is received is also 10,140 ALL / month.