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The Moscow charity Downside Up is celebrating its 10th Anniversary this year and I recently had the privilege of visiting their Centre and meeting the staff and many of the children and families using their services. In Russia, on average only 15% of children with Down syndrome live with their families. The rest (85%) are orphaned at birth and go straight to state institutions. In Moscow, thanks to the work of Downside Up, some 45% of new babies are now being taken home.

Downside Up provides services to families with children with Down syndrome from birth to 7 years old and at present they are serving just under 1,000 families, of whom almost 300 live in Moscow, a further 117 in the Moscow region and the rest come from other parts of Russia and neighbouring Russian speaking countries. Families who live near can attend the centre regularly, while those further away may visit one or more times a year depending on their ability to travel.

For families and children in Moscow, the Downside Up staff offer a home-visiting support and education service and from 18 months of age the children can also join weekly Social Adaptation groups at the Centre. The children are provided with a comprehensive developmental service, covering advice on health care and feeding, activities to promote social-emotional, motor, speech, language and cognitive development plus independence and self-help skills. The multi-disciplinary staff team includes the range of expertise needed to deliver this range of support and I was very impressed with their knowledge and commitment to delivering the highest quality services.

The Moscow families and their children are receiving services that are as good as any they might receive in other countries. This is a tremendous achievement as, when Downside Up started, they had to bring in staff trained in other countries in order to find and train a Russian staff team. The staff are now all Russians, which is important for developing services across the country and also for understanding the cultures and local needs.

During my visit, the families I talked with wanted to know what work I did and what services were like in the UK. They also wanted me to talk about my experience as a parent, as my daughter with Down syndrome, Roberta, is now 37 years old. Talking with these families and the staff of Downside Up took me back to thinking about what life was like for children with Down syndrome and their families in the UK 40 years ago. It was clear as we talked that the journey that they are on is not so different from the journey we have been on. When Roberta was born in 1969, she had no right to any educational provision � just day care if she was lucky. There were no services for families who kept their children at home in the UK � no early intervention until some 10 years later when the first projects started. Community attitudes were not positive and a common view was that the child with Down syndrome would be a burden for the family. In this climate, Roberta's parents felt unable to take her home and she was placed in an institution, a hospital for the 'severely subnormal'. I found her there, aged 9 months, when I went to work in the hospital and she came to live in our family as a foster child at 16 months of age. The care she received in the hospital was poor; poor hygiene and barren surroundings, poor food, poor clothes and no appropriate play or stimulation.

In the UK we have tackled, like most other countries, the same challenges to change attitudes, develop education, raise expectations and fight for full citizenship for children and adults with Down syndrome that face those working in Russia. I visited a 'Baby House', the state provision for orphaned babies, during my visit and the conditions and care were much better than those Roberta received in the UK, though the babies still lacked enough individual attention and attachment figures as there was one carer to 6 babies. Downside Up staff have started working with the staff at this Baby House, who are eager to learn more about Down syndrome and do the very best for the children in their care. Some families of babies living in the Baby House are now in touch with Downside Up and some have been reunited with their families. Hopefully more families will begin to feel able to take their babies home as the training and publishing work of Downside Up continues to change the public and professional attitudes in Moscow.

The first challenge in 1996 was to set up a direct service for families but now Downside Up is involved in training, in working with maternity staff and medical and educational professionals in Moscow to begin to build early intervention, good healthcare and education provision for all the children with Down syndrome. They are working with the school system now as so many of the children they have supported are reaching school age. Downside Up is also increasingly developing outreach services and offering training and support to the governments and services in other areas of Russia. They have been successful in securing EU and other funding to expand this work. They are also publishing an increasing range of material and information in Russia for both professional and parents.

Downside Up have just adopted their strategic vision for the next years and, from what I saw of the staff skills, professionalism and vision during my visit, they are going to have a very significant impact on the lives of children with Down syndrome across the Russian speaking world during the next 10 years.

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Sue Buckley is at Down Syndrome Education International, Portsmouth, Hampshire, UK.

doi:10.3104/news.2047