Down's Syndrome Associatiom

The Down's Syndrome Association - a society of parents of children with Down's syndrome - was registered in March 1993 in Moscow, comprising parents of children or adults with DownÒs syndrome.
The Association works to ensure the survival and continued development of these children and also to promote their integration into society as complete human beings with equal rights.
President of DSA is Sergei Koloskov.
Our photo album.

Numerous children and adults, which DSA unites and helps. (1997)

At present the Association represents and supports about 150 Moscow families (100 ones with DS children and 50 ones with DS adults) and about 450 families from other places in Russia and the 30 in CIS countries.
Above it DSA set up 13 groups of parents in different places of Russia and 1 Informational Centre on DownÒs syndrome for Siberia and Far East in Krasnoyarsk.
There are 90 mentally handicapped orphans in the group in the Moscow special institution, where DSA organise care of them.
At present there are 70.000 mentally handicapped children in special institutions in Russia. DSA helps them indirect by protecting their human rights.

Activity of DSA

 The Association translates, prepares for publication and distributes the latest literature on helping people with mental handicap. A total of 38 books and brochures is now available, generally free of charge. DSA translates and dubbing into Russian educational videos.
The Association works with maternity homes and children's homes in Moscow, and with genetic counseling centres and other organisations.
Since the summer of 1993 the Association has been providing information and social help for parents with Down's children. This includes answering their letters, providing relevant literature and video programs on modern methods of help and the potential of children and adults with DS.
DSA developed a system of medical, therapeutic and social assistance to children with the DownÒs syndrome and their parents from the time of the childÒs birth. This system includes help in maternity home, medical help, occupational therapy, phisiotherapy, speech and language development at home and at the Centre ÓSmall StepsÔ of the early interthantion and preparing to school as well as the childÒs integration into the kindergarten system organized by the Centre for Remedial Education and Education Committee of the Moscow government. About 40 children receive this help now.
The Association's Art Creative Centre for adults with Down's syndrome has been opened since October 1994, and gives lessons in decorative and applied arts, and piano and recorder lessons. About 15 DS adults take this lessons now. 5 DS musicians from the Centre play concerts.
In the fall of 1996 DSA launched a unique international project of care for and rehabilitation of handicapped orphans in a psychiatric internat. This is a joint project of the Association, Russian Orthodox Church and the psychiatric internat. It is supported by a number of influential charity organizations and specialists from France, Switzerland, Germany, Norway and Denmark. A department of mercy and rehabilitation for 90 b edridden children orphans in critical condition has been set up through the joint efforts. Now these children have returned to life! Many of them learned to play with toys, to feed herself, to walk and to communicate with children and adult.
Two cardiac surgery has been arranged for infants in difficult cases, in Boston (USA) in August 1995 ; in Bologna in May 1996.

How many people work in DSA?

9 emloyees work at the Consultation-Coordinating Centre, including president, translators, counters and so on.
12 employees work at the Centre ÓSmall StepsÔ, including a pediatrician, occupational therapists, phisiotherapists, speech and language therapists.
5 employees work at the Art Centre, including musical and art teachers and a social worker.
Over 40 employees of the Association including a pediatrist, neurologist, psychiatrist and more than 30 employees of the internat who also became volunteers of the Association -- are involved in the project of rehabilitation orphans with mentally handicap in the internat.
Many parents of DS children and adult work a little as volunteers.

Situation with the children with DownÒs syndrome in Russia

In Russia just like in the West 50-70 years ago children with DownÒs syndrome are considered ineducatable and not able to survival. The majority of children with DownÒs Syndrome are given up by their parents immediately after birth owing to conservative medical and social views.
The available data suggests that this is the fate of 50% of babies in the provinces and 90% in major towns. Figures further show that 40% of such babies die within the first year of life, and that very small numbers indeed survive to adulthood.
For example in Moscow only 100 DS children are living with their parents.
In MoscowÒs institutions there are only 122 DS children aged between 5 and 18 while with a total child population of 1,900,000 there should be - to play, to learn, to enjoy their lives - about 1,500 DS children in this agegroup.

The Down's Syndrome Association calls on members of parliament and other politicians, civil servants and the community in Russia and abroad, and businessmen and women to begin an international cooperative endeavour to help the thousands of handicapped children in Russia.