Facts
Approximately 2,500 children with Down syndrome are born in Russia every year. On the average 85% of the parents abandon their babies because of an old-fashioned, and incorrect, view that these children are unable to develop. In Russia early intervention services for children with DS are on the inception stage. There is no Federal Bill on special education in Russia. Families raising children with Down syndrome suffer from a lack of educational and social support, but most of all they suffer from society’s negative attitudes.
How Downside Up began
In 1993 in London Florence Garett was born. She was diagnosed Down Syndrome. Thanks to help and support she and her family received from professionals in Great Britain, Florence was able to go to an ordinary school, to learn and to speak English and French, to ride a bicycle, basically, to do all the things her ordinarily developing peers do.
Florence’s uncle, Jeremy Barnes, worked in Moscow when Florence was born. He was shocked to learn that in Russia the vast majority of parents abandon their newborns with Down Syndrome because they couldn’t get any appropriate help and support. So in 1996 Jeremy Barnes together with his sister Veronique Garrett and his friends Martin Thomas, Richard Brindle, Marlen Manasov and Kirill Gromov set up Downside Up foundation.
Testomonials:I would like to express satisfaction that in our Motherland there are people nowadays who do charitable work striving to provide support to children. I hope that with your help people with Down syndrome will be able to develop their abilities much better, feel the atmosphere of love and care, receive support they need from a very early age, have adequate education, that ensures their social adaptation.”
His Holiness Alexis II Patriarch of Moscow and All Russia"Downside Up helps children with Down syndrome to grow within families surrounded by love and care. They help parents to feel confident and socially integrated. They help specialists to be capable providing professional services to hundreds of families across Russia. During ten fruitful years DSU has developed from a local initiative to an internationally recognised organisation working together with the Russian government.”
Cherie Booth QC, Downside Up Patron"Downside Up continues to be an absolute inspiration to all … it’s fantastic that they are now widely seen as an internationally recognised organsiation."
Boris Johnson MP, Downside Up Patron
"Positive outcomes of the international experience in early intervention for children with Down syndrome gave an impetus to establishing Downside Up, a specialized service in our country. Its distinctive feature that intervention begins very early. An approach like this is innovative, and deserves meticulous attention".
V. Lebedinsky, PhD, senior lecturer of the Faculty of Psychology of the Moscow State University"I would consider the DSU Early Intervention services to be ‘state of the art’, clearly based on a knowledge of best practice, as identified in the current professional practice and research literature, and as good as the best services offered in the developed world."
Professor Sue Buckley OBE, BA (Hons) Reading, C Psychol. AFBPsS. Director for Research and Training at the Down Syndrome Educational Trust and Emeritus Professor of Developmental Disability, Psychology Department, University of Portsmouth."Downside Up makes life worth living - against all odds."
Kate Adie, BBC correspondent, Downside Up Patron