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04.12.2008

Children with Downs’ Syndrome in Ukraine

   

Around one in every 800 – 1,000 babies in Ukraine are born with Downs’ Syndrome, this being around 300 to 400 babies born with the condition each year. Almost one in three children is left in the maternity ward. 

Children with Downs’ Syndrome have a number of physiological specific features, paediatrician Natalya Davydova explains, and stresses that although they develop more slowly than other children their age, they can be taught to walk, speak, read and draw.

“They are really very sweet lovely children. They are never aggressive. However they are extremely dependent on others and those around them need to support them all the time so that their interest in the world is developed. Because they’re very open, they can clearly demonstrate their talents.

According to the association of parents of children with Downs’ Syndrome, in Kyiv each year up to 30 children are born with the condition. Over 5 months of this year mothers rejected 11 such children.

Natalya Zhdanova from Kyiv cave birth four years ago. The couple learned that their son had Downs’ Syndrome only after several months. Natalya says that even if she had learned of her son’s condition during pregnancy she would have kept the baby. Her son now attends a normal kindergarten.

“For us the kindergarten is important so that our child has the opportunity to be with children his own age. And special lessons can be individual. Many parents if they find out during pregnancy that the child will have this syndrome still decide to have the child. Because there is more information now, people know that such children grow up, develop and can be among others.”

Natalya says that she knows young people from Kyiv with Downs’ Syndrome who finished evening school and who are studying in colleges. Abroad it is normal practice to have work for people with special needs. The main thing for this is whether the person is able to adapt to society.

In Italy where around one baby in 800 is born with Downs’ Syndrome, children attend normal preschool institutions, but under the supervision of special teachers and a doctor. They usually spend a year longer at preschool level. After finishing secondary school, the young people are enrolled in vocational schools where professionals help the children with learning difficulties to adapt to the working environment.  However such conditions are not found everywhere in Italy due to the lack of trained personnel, and some parents have to send their children to normal lyceums.  About 80% of people with Downs’ Syndrome work in the service industry.

In Ukraine the problems of studying, development and employment of young people with Downs’ Syndrome remain the problem of the family. According to the Chair of the parliamentary subcommittee on the disabled Valery Sushkevych, the state is not interested in creating jobs for the disabled, and doctors most often give up on them.

According to the world concept of disability, as enshrined in the UN Convention on the Rights of the Disabled, disability is treated as one of the features of human beings, and not as a defect.  Children with genetic disorders develop their possibilities much better if they remain at home in an atmosphere of love, if they can study with special programmes and if society does not turn them away.

How would you react if in your surroundings, near you or your child, there was a person with special needs, for example, with Downs’ Syndrome?  (a question put to passers-by)

Zhanna (employed in commerce): “Why “they”, why “near us”.  They are us. We should accept one another as we are.”

Mykhailo (pensioner): It depends how other people perceive such children, people

Alisa Mykhailivna (pensioner):  A child like that is better off remaining as long as possible in the family. However society must provide them with normal conditions.

Anton (musician): They are people too, they have the same right to life, they can think.

Olena (student): Living with such people can be difficult. There can be aggression, inadequate behaviour in attitude to other people, particularly among children.

Abridged from a report at http://www.radiosvoboda.org/content/Article/1355826.html

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