Activities on March 21st, 2015 - World Down Syndrome Day

This year marks the 10th year since the adoption of March 21st as World Down Syndrome Day (WDSD) by the General Assembly of the United Nations. This particular date was chosen on purpose as the numbers 21.3 correspond to the tripling of chromosome 21, the genetic condition that causes Down syndrome.

 

The purpose for this day is to raise awareness, give out information on Down syndrome, and promote the rights and needs of individuals with Down syndrome to live an independent and inclusive life as valuable members of the society and community where they live.

As the global data shows that 1 in 700 births results in Down syndrome, their voice and the voice of their families, everywhere in the world, is being heard.

In Albania, the awareness about this syndrome, which takes part in the intellectual disability group, has only started in the last few years, and Down Syndrome Foundation Albania (DSA) has played a crucial role in helping families, institutions and the society at large pay attention to these wonderful individuals.

DSA is a non-profit organization, established in September 2013 and run by parents of children with Down syndrome. The objectives of this organization are to raise awareness and advocate for a more inclusive life for individuals with Down syndrome. As of June 2014, through the Performance and Development Center, DSA provides direct support for children with Down syndrome and their parents. In this center, which was set up by the help of local businesses, we offer free specialized therapy, which are needed to maximize the potential and autonomy of children with Down syndrome, to enable them have an independent and inclusive future. Through the parenting group established at DSA, this center also offers psychological support to parents of individuals with Down syndrome, as well as provides them with the needed information on Down syndrome.

The DSA Performance and Development Center offers services in the form of individual therapy (physical therapy, development therapy, occupational therapy and verbal and alternative communication therapy as well as assistance on specialized pedagogy) to 30 children, 10 of which come from other districts, while about 10 other children who also live in other districts, are supported by the DSA staff through monthly visits in their homes, since they are unable to attend therapy due to the long-distance travel or economic hardships that prevent them to travel to Tirana.

The Center is supported and is financially dependent on donations from businesses, individuals or funding projects that DSA applies to.
DSA works toward and lobbies that one day these services are provided by state structures in all districts throughout Albania, as they are necessary for the welfare and development of these children. These services are too costly and cannot be covered fully only through business donations.

DSA also works toward and lobbies for:

• • Children with Down syndrome to pursue inclusive education in classes with their own peers, but supported by assistant teachers and with their own instructional materials.
• • Young people with Down syndrome to be offered life skills therapy and professional training and employment, as an important step in ensuring an inclusive and independent life.
• • Individuals with Down syndrome to benefit from quality health services just as any other person and not be stigmatized and lack quality health care due to the physicians’ lack of information and knowledge on the life individuals with Down syndrome can live, as well as health aspects and diagnosis that may accompany the individual with Down syndrome in their lifetime.

The above requirements are based on the Convention on Human Rights and the Convention on the Rights of Persons with Disabilities that Albania has already ratified.

 

While in developed countries, individuals with Down syndrome have been able to enjoy these rights, to lead a semi or fully independent and inclusive life, in our country we still have many people that are not informed about individuals with this syndrome, who face stereotyping and stigmatization at a social and institutional level. We have substantial shortcomings in services and approach towards individuals with Down syndrome, leaving many of them in total isolation, uneducated and unintegrated.
Albania has no official data yet on how many individuals with Down syndrome live in Albania. Our foundation has identified and works with 100 individuals with Down syndrome.

The message of the Secretary General of United Nations Ban Ki-moon for the day is, “in the work environment, stereotypes against people with Down syndrome often show that they are denied opportunities for training and work. In the political and public spheres, individuals with Down syndrome and other persons with intellectual disabilities are often deprived of their right to vote and participate fully in the democratic process.”