About Downside Up
Downside Up, a Russian non-profit organization, provides support and advice for families raising children with Down syndrome, develops innovative children training and parents support methods, disseminates knowledge and experience among Russian professionals , and works towards raising public awareness about Down syndrome with the aim of changing attitudes. Downside Up provides all its programmes to families free of charge.
Downside Up is the operating name of Downside Up Limited, a registered UK charity no. 1146506, registered company no. 07447541, and of Russian Charitable Fund no. 7714011745
The centrepiece of Downside Up’s work is its Early Intervention Centre in Moscow
which provides support and advice for 2985 families from all over Russia raising children with Down syndrome. The Centre’s highly professional staff of special education teachers, speech therapists, psychologists, specialists in motor and cognitive development, and medical consultants work with children and parents to ensure that all aspects of a child’s development needs are met.
Specialists of the Centre work out their own innovative training methods and share their knowledge and expertise with colleagues. An important aspect of the Centre’s performance is its Resource Centre
’s knowledge dissemination activity through training and consulting of professionals and senior officers involved in social and health care for children with special needs, and non-government organizations in Russia and CIS countries. Downside Up actively publishes and disseminates free of charge awareness-raising, scientific, and methodological literature about Down syndrome.
In Russia, where old prejudices and misconceptions about the nature of Down syndrome and potential of people with Down syndrome survive to this day, the families raising children with Down syndrome often encounter unfriendliness and lack of understanding. This is why another essential feature of Downside Up’s work is its awareness raising
activities aimed at building a positive image of a person with Down syndrome in Russian society.
Downside Up keeps all its services free of charge and operates exclusively due to grants, private donations
and corporate sponsorship
. Downside Up prides not only its unique teachers’ stuff, but also its Fundraising Department
, which has shown rare excellence and creativity in providing Downside Up with necessary resources.
Downside Up’s mission is to improve the quality of life for Russian children with Down syndrome. Downside Up’s long-range goals include:
- to prevent social orphanhood among children with Down syndrome;
- to promote the development of the state early intervention system for children with Down syndrome in Russia;
- to promote social adaptation and integration of children with Down syndrome into Russian society
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.
In 1993 when Florence Garrett was born in London the doctors made a diagnosis of Down syndrome. Help and support given to Florence by British specialists in time made it possible for her to go to a mainstream school, speak English and French, ride a bicycle, in short, do everything that her typically developing peers do.
Jeremy Barnes, Florence’s uncle, who worked in Moscow was shocked when he found out that the vast majority of Russian parents abandon their children with Down syndrome because of the total lack of support. In 1996 together with his sister Veronique Garrett and a couple of friends, he established Downside Up.
“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