15 Ozerkovsky Perelouk
Downside Up is a UK registered charity and a registered Russian charitable fund dedicated to improving the quality of life for children with Down syndrome and their families in the Russian Federation. The charity was established in the first quarter of 1996 due to a void of social and educational services for children with Down syndrome. Downside Up provides effective and comprehensive special education programmes, which enrich children's learning and lives so that they may reach their individual potentials. The charity also works to increase social awareness of Down syndrome and to further opportunities for the inclusion of people with Down syndrome in society.
In Russia, 94% of children with Down syndrome are orphaned at birth to state institutions. 50% of these children die within their first year of life. Given only basic care and nutrition, the majority of children with Down syndrome suffer from a "failure to thrive" for they are not adequately stimulated or nurtured in the orphanages. State institutions do not have sufficient information, training or resources to properly attend to their needs.
Families of a child with Down syndrome are shunned, ostracised and isolated. They have virtually no access to community resources and are denied all but the very basic medical attention. Children with Down syndrome are diagnosed as "imbecile and idiot" by the medical establishment and are thought to be uneducable; therefore they are denied education. Downside Up has responded with a community-based alternative to institutionalisation. The DSU Children's Centre gives parents the opportunity to keep their children at home, where they can grow and learn in an atmosphere of love and support.
Similar to western social service organisations, the Downside Up Children's Centre provides early intervention educational programs, and shortly will begin day care services, for children between the ages of birth and seven years old. The unique and diverse needs of a child with Down syndrome including physical, social, emotional and cognitive development are addressed. As each child is part of a family, we also serve the needs of that family in a supportive and holistic manner. Support groups & information give parents confidence and skills in their parenting while offering a forum for their needs and interests.
The Downside Up Early Intervention program includes (1) Home visiting specialists who work with parents & children on developmental skills in a simple step by step fashion. (2) Playskills groups offer toddlers and older children opportunities for play and individual attention in weak areas. Special needs educators along with physiotherapists and speech and language therapists tailor treatment plans and sessions according to the particular needs and strengths of each child. (3) Downside Up co-sponsors Moscow's first integrated kindergarten where children with Down syndrome play and learn side by side children with no disability.
Downside Up is committed to programs and initiatives which inspire, educate, support, empower and actualise people and resources to give children with Down syndrome and their families a full life, and the best possible start in life. Downside Up supports a child to thrive not barely survive.
To receive the Downside Up newsletter and learn more about the important work taking place in Russia and the many programs of Downside Up please contact them at the address above or contact:
Down Syndrome International Fund, Inc.
Advancing Inclusion for Russian People with Down Syndrome
Claire Brown Lyons
Down Syndrome International Fund, Inc.
PO Box 340
Pawling, New York 12564
Tel/Fax: (845) 855-8178
Last updated: December 1999
A print version of much of the information contained in this NIS Third Sector Organizations section can be found in the The Post-Soviet Handbook (Seattle and London: University of Washington Press, 1999).