Turkiye Down Syndrome Association

  TÜRKİYE DOWN SYNDROME ASSOCIATION 

Türkiye Down Syndrome Association (TDSD) works to ensure that individuals with Down syndrome (DS) have an independent, productive, and socially integrated life and have a voice over their own lives.​ It is a fully registered and audited NGO working to change the perception of disability, to follow the research on DS and to create & implement projects that lead to integration and, to create a more harmonious society for all. TDSD has been implementing several programs covering the whole country; conducting trainings for individuals with DS, their parents and experts; providing consultancy; working on lobbying and, organizing awareness projects since 2009. TDSD serves as the Vice Chairman of the Board of the European Down Syndrome Association, and it is Türkiye Representative of Down Syndrome International. It is in contact with the Down syndrome associations of 35 countries in Europe and 136 countries in the world, has been invited to the UN twice for as speaker and follows the scientific and social developments closely. The distinguishing feature of the association is it has a scientific committee, a consultancy committee (members are doctors and health experts, special education professors, lawyer etc.), a social committee (responsible from fundraising) and an accessibility committee of people with Down syndrome. The accessibility committee is responsible to give advice about materials and tools produced by education department.  The transparency is very important for the board. TDSD is the member of “Açık Açık” platform which acts like an independent auditor and monitors financial records, legal documents of associations and to force members to announce a donor’s rights policy . In addition to independent audit, the association has check-up once a year from a private company for all legal books that has to be booked. Besides these, as it is registered as NGO, it reports financial records, data like numbers of workers, volunteers, members, list of board members, annual activities, donations, and other incomes to the Ministry of Internal Affairs annually. As the decision made by the board of the association, all these information are open to public on the website. 

We are a non-governmental organization that closely follows current developments on DS in the world and in Turkey, works continuously to publicize Down syndrome, to raise social awareness, to provide support to families and experts throughout the country and to guide them on how to reach the support organizations in that region and thus undertakes a mission that aims to work in cooperation with all institutions, that is, we are a non-governmental organization that aims to provide equal opportunities and to strengthen their indispensable place in society by combating the discrimination faced by individuals with Down Syndrome at every age and position from infancy by carrying out projects that mainly affect the perception of disability in society. As Down Turkey working group, we were established as a platform in 2009. In 2011, we completed our association procedures and started to continue our activities as "Turkiye Down Syndrome Association". Our headquarters is in Istanbul. We have representative offices and branches in Ankara, Adana, Tokat, Adıyaman, Eskişehir, İzmir and Kastamonu. In addition to the brand of Turkey Down Syndrome Association, the right to use the brand of Down Syndrome Association also belongs to our association. 

We are a non-governmental organization that serves as the Vice Chairman of the Board of Directors of the European Down Syndrome Association and Turkey Representative of Down Syndrome International and we have access to Down syndrome associations in 35 countries in Europe and 136 countries in the world. As a Founding Secretariat Member of the Disabled Children's Rights Network, Founding Member of the Platform for Equal Rights in Education and Advisory Board Member of the Rare Diseases Network, we continue to work in the field of disabled children's rights together with nearly a hundred non-governmental organizations working in the field of disability in Turkey. 

We serve for all individuals with Down Syndrome from birth to death. Our main programs for children and adults with down syndrome, their families, caregivers and experts in the field are as follows. you can follow our detailed annual activities in our annual reports at https://www.downturkiye.org/icerik/84-faaliyet-raporlari 

• Psycho-social support program 
• Qualified parent NEB program, Natural teaching methods DÖDEM family education program  
• KOZA family-to-family support program  
• ART +1, TECHNOLOGY +1, TASTE +1 workshops for people with Down syndrome  
• INDEPENDENT LIFE PROGRAM for people with Down syndrome  
• FAMILY +1 webinars enabling expert family meetings  
• DOWN TURKEY ACADEMY +1online training platform for individual or collective trainings (such as physiotherapy, language therapy, small steps program, self-advocacy) 
• JOB COACH SUPPORTED EMPLOYMENT PROGRAM 

Within the scope of the Job Coach Supported Employment Program, we have partnerships with brands such as Hilton, KFC, Big Chefs and Levis for the employment of individuals with down syndrome in the catering and reception sector of these brands. We have a dance class with Hilton Bomonti and also Hilton, IGA (İstanbul International Airport), UNO which supported our campaigns with their employees to a great extent during the marathons.  

Our headquarters is in Istanbul. We have representative offices and branches in Ankara, Adana, Tokat, Adıyaman, Eskişehir, İzmir and Kastamonu. In addition to the brand of Turkiye Down Syndrome Association, the right to use the brand of Down Syndrome Association also belongs to our Association. As an association, we have member families from every region and province of Turkey and we offer our services to every region of the country. 

The monitoring and evaluation of the programs we provide for individuals with Down syndrome and their families through the Association is carried out by our expert staff. During the programs, each individual with Down syndrome is observed individually, they are given a pre-test before starting the programs and a post-test after the program. In addition to the pre-test and post-test method, daily observation notes and video recordings of the individuals involved in the trainings are also used to monitor their progress in the program. In addition to the trainings, in our program for the employment of individuals with Down syndrome, our job coach supervises the individual with Down syndrome who is hired for 1.5 months at a workplace and organizes seminars with colleagues. The families of children and young people who benefit from our programs are also interviewed and feedback is received from them regarding the development of their children. All work is carried out with psychologists and special educators in our team. Before each program to be implemented, the monitoring and evaluation method to be applied for that program is determined. 

Memberships:  

• EDSA Vice Chairman of the Board (European Down Syndrome Association)​ 
• DSI Member (Down Syndrome International)​ 
• ENIL Member (European Network on Independent Living)​ 
• WASE Member (World Association for supported)​ 
• TR21RS Member (Trisomy 21 Research Society)​ 
• DSMIG Member (Down Syndrome Medical Interest Group)​ 
• EÇHA Secretariat Founding Member (Network for the Rights of Children with Disabilities)​ 
• Member of the Partnership Network to Prevent Violence against Children​ 
• ACURARE Advisory Board Member (Acıbadem University Rare Diseases and Orphan Drugs Research and Application Center) ​ 
• EEHP Equal Rights in Education Platform Founding Member​ 

EARTHQUAKE ZONE WORKS 

After the February 6th earthquake disaster centered in Kahramanmaraş, which affected 11 provinces, we took immediate action to heal our wounds. As soon as we received the news of the earthquake we reached out to our contacts in the earthquake zone we two of our provincial representatives were also located. We have been in contact with nearly 1000 families since the first day.  

Our effects are especially focused on the needs of children with Down syndrome and special needs and their families. 

We are currently working on container education centers for individuals with special needs to be established in 4 provinces in the earthquake zone. 

TDSD Trainings to be provided with that container centers; 

• Phycho -social Support Program 
• Qualified Parent Program 
• DÖDEM Family Education Program 
• KOZA Family to Family Support Program 
• ART +1 , TECHNOLOGY +1 , TEST +1 workshops for individuals with Down Syndrome 
• INDEPENDENT LIVING PROGRAM for individuals with Down Syndrome 
• FAMILY +1 webinars enabling expert family meetings. 
• DOWM TURKIYE +1 ACADEMY offers individual or collective trainings (physiotherapy, language therapy, Small Steps Program, self advocacy) 
• Play and activity workshops for children.