Improving the quality... of life for Russian children .. with Down syndrome ..
Downside Up Flat 187, Block B Colherne Court Redcliffe Gardens London SW5 0DU, UK Tel/fax +44 (0) 207 835 1110 Downside Up 115184 Moscow Ozerkovsky Pereulok 15, Russia Tel/fax +7 (095) 951 0079 Tel+7 (095) 959-4979 E-mail downsideup@downsideup.org www.downsideup.org
A Word from our Director
Russian Children with Down syndrome
2004: A year of growth for Downside Up
Exclusion and discrimination
The last year saw a considerable scaling up of Downside Up’s (DSU) activities within Moscow and across the Russian Federation. This year, DSU had the biggest rise yet in the number of children enrolled in our Early Intervention Programmes within the younger age group of twelve months and below. The increase in enrollment is testimony to the success of our Maternity Hospital Project, enabling us to work with children in the crucial first months of their lives that are so important to their future development.
Russian Down syndrome children are amongst some of the most disadvantaged and at-risk children in the world:
Our work in the regions involved training to Russian professionals and parents on child development and innovative methodological tools for Early Intervention. As part of this training, we disseminated training books on child development and the potential of children with Down syndrome (DS) across 45 regions of Russia for use in orphanages, kindergartens and schools. In addition, DSU undertook trainings and seminars in the Moscow region, Kaluga, Nizhniy Novgorod and Samara and participated in conferences and inter-regional seminars in Tomsk, Vladimir and Rostov-on-Don. Our regional operations have been crucial in working towards ensuring the best care for children with Down syndrome all over the country. Our work contributed, for example, to
a new early intervention centre being planned by local authorities in Nizhniy Novgorod, a positive step. Our trainings on Down syndrome and early child development with governmental service providers and future professionals at the Russian State Medical University also reached over 1500 participants, paving the way for a better understanding of and response to DS children’s specific needs for many years to come. Our fundraising team has been working hard and many thanks to all our supporters who helped us raise over £250,000 for the reconstruction of new premises for DSU. This will be crucial in expanding our services to meet a growing need and in ensuring a sustainable future for the organisation. Many thanks also to those who took part in the re-launched annual Charity Cross Country Ski Race and of-course the yearly Charity Red Square Bike Ride, which were great successes. With help from our patron, Cherie Booth QC, the year came to an exciting end when Dasha Mukhanova, a Russian girl with Down syndrome, lit the candles on the Christmas tree at 10 Downing Street. We continue our cooperation with the Russian government, regional and international partner organisations to develop new and innovative proposals to meet the needs of Russian children with Down syndrome and look forward to another year of growth. Anna Portugalova Director
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On average, 2,000 children with Down syndrome are born in Russia each year
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Children are routinely institutionalised, sometimes without ever seeing their parents, due to misperceptions about the nature and the cause of the disability
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Parents of Down syndrome children have little, if any, access to information about the disability and the choices available
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Russia’s institutions house 48,400 children (Amnesty International, 2003), a significant number who were born with disabilities
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Conditions in institutions can be shockingly bad and a number of recommendations from governmental officials have been issued for an urgent response
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Families with disabled children in Russia are among the poorest social groups in the country
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Few services exist to provide children with the education and support they need
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Social stigma surrounding the disability makes attempts at mainstream education or social integration particularly difficult.
‘In our village there are no provisions for us, here we are left on our own and nobody pays attention to our needs’ (Quote from a letter received by DSU from a mother of a DS child)
There is a real and desperate need for support and information services for parents, for vital services to meet the needs of DS children in their own home and community, and for tailored educational and social services to help these children fully develop their potential and become active members of society.
Far left: The DSU team in Moscow consists of 29 expert staff Left: Dasha and her mother enjoy Christmas at number 10 Downing Street accompanied by Anna Portugalova
Above: DSU family support services enable parents to keep their children within the family Right: DSU experts provide children with individually tailored development programmes
www.downsideup.org
www.downsideup.org
Downside Up Programmes
The Early Intervention Centre
‘A mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community’ UN Convention on the Rights of the Child
Downside Up supports the only Early Intervention Centre in Russia offering direct services to children with Down syndrome on a daily basis. Number of children receiving direct services (all services are provided by DSU free of charge):
600 500 400 300 200 100 0
Children come to the Centre from Moscow, the Moscow region and nearly 50% come from other Russian regions. Downside Up offers a coordinated, person-centered approach in order to best meet the demands of individual children, which includes: ■
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1996 1997 1998 1999 2000 2001 2002
2003
Home visits (0-30 months): Support to parents and step-by-step practical advice on their child’s early development to prepare children for joining group work at the centre. Individual sessions with teachers, physiotherapists, psychologists, pediatricians and speech therapists according to the particular needs of the child.
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Group work: Group work includes a social adaptation group (18-36 months), a prekindergarten support group (30 - 42 months), a pre-school support group (4 -7 years) and regular ‘logorhythmic’ sessions (special teaching involving speech, movement and music).
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Written individual summer programmes for children, so that parents can ensure the ongoing development of their child.
In 2004, Downside Up provided families with: ■
180 group sessions
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1107 individual consultations
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166 doctor’s consultations
2004
From Left to Right: Group work at the Centre aids the transition from home to more formal education services by developing speech, language, fine and gross motor skills and cognitive development
www.downsideup.org
www.downsideup.org
Support to Parents and Carers
‘I want to thank you for the fact that you exist, that you bring warmth into our homes. When your newsletters arrive all members of our family read them from the beginning to the end. You can’t imagine how great it is to know that someone else remembers about your son.’ (Quote from a letter received by DSU) Left and Below: Support to parents and carers prevents child abandonment and institutionalisation and improves quality of life
Downside Up offers a variety of psychological, social and practical support to families to help them care for their children and prevent abandonment or institutionalisation.
Educational Integration
A key part of Downside Up’s work on inclusion involves advocating for the integration of children with DS into mainstream schooling. Through their work, 43% of all DSU children of pre-school age living in Moscow now have kindergarten placements in mainstream institutions. To ensure successful integration, Downside Up undertakes: ■
Training, master classes and seminars for kindergartens and orphanages to encourage the successful integration of DS children and help the professionals provide the high level services needed.
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Advocacy for placement of children. The Kindergarten Liaison Coordinator actively works on establishing and maintaining contact with pre-school institutions.
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Yearly monitoring of children, aged 7 and above, who have been integrated into mainstream schools.
Programmes include:
www.downsideup.org
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An Immediate Response Team that offers information and psychological support to mothers and families of newborn children in maternity hospitals.
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Information dissemination, including initial information packs for parents, the ‘Take a Step’ newsletter, brochures, leaflets and individual consultations.
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Formal training sessions and seminars on relevant topics.
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Psychological services and ongoing support via electronic, written and verbal communication.
In 2004, Downside Up: ■
Held family meetings with over 150 parents
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Social support including Parents Groups to offer peer-to-peer support, such as the ‘Time of Change’ family club.
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Targeted 12 families of newborn babies with Down syndrome through the Immediate Response Team
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Material help, including medicine, food and travel costs provided monthly to the neediest families.
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Involved 120 families in DSU events, including end of school year and Christmas celebrations
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Gave training and seminars for 180 parents of DS children
Above: Placement of children into mainstream kindergartens is crucial in ensuring their long-term social and educational inclusion
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Gave humanitarian aid and material help to approximately 50 families each month
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Coordinated distance support to approximately 400 non-Moscow families, including involving 20 families in a new regional email network
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Advocated for placements with 25 Moscow kindergartens, 14 of which agreed to accept DSU children for the first time
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Ensured an additional 16 kindergarten placements for children with DS, bringing the total to 63.
www.downsideup.org
Get Involved!
Reaching out to Russia’s regions Publications and training programmes are an excellent way to spread DSU knowledge and expertise across the country to ensure children in the far regions of Russia also benefit.
Service Development and Training Programmes DSU undertakes the following activities to improve service delivery within Moscow and across the Russian Federation: ■
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Networking with international organisations to develop new methods of therapy and good practice. DSU currently works with partner organisations from France, the Netherlands and the UK and is also involved with the European Down Syndrome Association Training, lectures and seminars offered to staff in state institutions, including kindergartens, orphanages, rehabilitation centres, regional education centres and maternity hospitals. Training is crucial in dispelling myths and providing information about Down syndrome Working with the Russian government to raise awareness and develop their capacity to better meet the needs of DS children. As such, DSU cooperates with a variety of Moscow Departments and Ministries to ensure positive change.
Disseminating Information Resources Downside Up translates, writes and publishes a wide range of materials that describe and promote Downside Up’s original and unique approach to methods of psychological support and early child development in Russia. The DSU approach uses western methods of rehabilitation and integration and adapts them to a Russian context.
www.downsideup.org
In 2004, Downside Up organized: ■
The publication and dissemination of three new publications:
– ‘Communication skills in children with Down syndrome: a guide for parents’ – ‘Comprehensive development of children with Down syndrome (3-5 years old): Individual and group sessions’
Downside Up organises a variety of yearly events that are key to ensuring funds to continue our vital services. For more information on how to enter any of these events, please contact us. ■
– ‘Down syndrome: The Facts’ ■
29 seminars on early intervention for 2000 Russian professionals in Moscow and the Moscow region, Nizhniy Novgorod and Samara
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10 lectures to the Russian State Medical University involving 1500 participants
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5 seminars to 100 professionals from Moscow kindergartens
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3 seminars to 70 participants from Moscow maternity hospitals
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3 seminars to 110 professionals from Moscow orphanages
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With the European Down Syndrome Association, celebrations of the Day of People with DS with over 600 participants.
Below: Training, lectures and seminars improve service delivery across the country
Above: DSU’s wide range of published literature includes information for parents and professionals on Down syndrome and providing expert care
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Charity Red Square Bike Ride
The corporate sector plays a very important role in funding our programmes and we thank our many existing corporate sponsors who enable us to provide our ongoing programmes, especially JamilCo, Shell, Deloitte, TNT Express, Western Union and many others.
Each year Downside Up supporters of all ages from all over the world come together to ride 200 km around the outskirts of Moscow and finish in the heart of the capital – Red Square. The event in 2004 was enjoyed by 85 people and raised over £67,000.
If your business is interested in sponsoring an event, promotional materials, or one of our programmes it will provide you with an excellent opportunity for building the company’s public image and staff morale. Please contact us to find out more.
Charity Cross Country Ski Race
Grants and charity partnerships
Many thanks to the 87 participants who took part in Downside Up’s Ski Race held early in 2005. The Ski Race was a great event and raised over £12,000. ■
Corporate Sponsorship
Sponsor a Child The Downside Up Sponsor a Child Project is crucial in supporting children with Down syndrome who attend our early intervention programmes. You can sponsor a child for as little as £25 a month. Please visit our ‘Sponsor A Child’ page on www.downsideup.org to read individual stories of the sponsored children, or contact us to find out more.
New Building
Grants and partnerships with other charities help us build our capacity and provide new services. We are grateful to our existing supporters that include Action for Russia’s Children, The Parthenon Trust, Rotary Clubs, the BBC World Service Trust, FNR and Military Attache’ Bazaar. Please contact us if you are interested in building ongoing partnerships within Russia. Please check these websites for updates on news and events: www.downsideup.org, www.charitysports.ru Above: The 2005 Charity Cross Country Ski Race Below: The 2005 Charity Red Square Bike Ride
In 2004, DSU received a great deal of support in raising funds for the new Early Intervention Centre. Since the campaign started in Autumn 2003, we have raised over £250,000 thanks to the support from hundreds of private individuals and organisations. Major contributors included Fondation les Corbillettes, Vostok Nafta Investment Ltd., OAK Foundation, Elysium Foundation, The Earl and Countess of Wessex Charitable Trust, Pascal Clement, The Bernard Sunley Charitable Foundation, Aton, Orangetree overseas, Sportland Bar and the International Women’s Club.
www.downsideup.org
Financial Report
Our Trustees
Downside Up was established by five British colleagues following the birth of Florence Garrett with Down syndrome. Her family were keen to help other children with Down syndrome and through her uncle, Jeremy Barnes, who was working in Moscow, became aware of the plight of children with Down syndrome in Russia. Downside Up was registered in the UK in 1996 and in Russia as a non-profit charity in 1997. DSU UK has five trustees, who make up the Board of Trustees and currently undertake the core UK activities on a voluntary basis with support from volunteers and patrons. DSU UK supports the Moscow site in financial planning and management, networking and fundraising, media promotion, information dissemination and service development.
Jeremy Barnes lived in Moscow from 1993 to 1998 working for Brunswick UBS, an investment bank. He currently lives in London.
Richard Brindle works in the insurance industry in London.
Veronique Garrett is the mother of five
Above: Patrons and trustees of DSU provide a variety of crucial support to the Moscow site
Our Patrons Kate Adie Bob Ayling Christopher Balfour Cherie Booth QC Ralph Feinnes
Princess Katya Galitzine Boris Johnson MP Jeremy Lancaster The Lady Levene of Portsoken Rosa Monckton
Mathew Taylor MP
Marlen D. Manassov is based in Moscow and
Philip Marsden
Martin Thomas is a senior official of the Bank of England currently on secondment to the European Commission.
Full fiscal year 2004 GBP
Full fiscal year 2003 GBP
452,091 42,977 495,068
264,886 47,744 312,630
(176,431) (44,949) (38,933) (260,313) 234,755 0 162,012 396,767
(176,099) (43,198) (31,246) (250,543) 62,087 0 99,925 162,012
31.12.2004 GBP
31.12.2003 GBP
0 34,305
80,852 27,544
80,852 293,975
0 59,464
(12,361) 362,466 396,771 396,771
(5,844) 53,620 162,016 162,016
INCOMING RESOURCES (see diagram below) Total donations Investment income Total incoming resources RESOURCES EXPENDED (see diagram below) Early Intervention Programme Fundraising and Marketing Finance and Administration Total resources expended Net incoming resources before revaluations of investment assets Gains and (losses) on revaluations and disposal investment assets Total funds brought forward Total funds carried forward
Nial Fergusson
children, including Florence Garrett, who has Down syndrome. This has given her invaluable first hand knowledge of the benefits of early intervention. is Chairman of Brunswick UBS investment bank.
Statement of financial activities
Cherry Moore
FIXED ASSETS Investments Building CURRENT ASSETS Investments Cash at bank and in hand LIABILITIES Creditors: amounts falling due within one year Net current assets Total assets less current liabilities TOTAL FUNDS
Where the money comes from Individual donations 12%
Where the money goes
Corporate donations 18%
Administration 9% Fundraising and Marketing 17%
Other charity events 5%
Maternity Hospitals Project 4% Early Interventions programmes 18%
Home visits 8%
New Centre 8%
Charity Red Square Bike Ride 28%
Grants 37%
Awareness Raising Events 10%
Parent Support Programme 9%
Knowledge Disseminations 17%
Most of the UK based functions of Downside Up are performed on a voluntary basis by trustees and friends of the charity. This represents a significant saving to the charity. www.downsideup.org
www.downsideup.org
How to help Your support helps those parents who are doing everything they can to allow their child to reach his/her full potential. Your donation will also contribute to the quality of life of those children with Down syndrome who will be born in Russia in the future. Please make your contribution by: ■
Cheque to Downside Up Limited, Flat 187, Block B, Colherne Court, Redcliffe Gardens, London SW5 0DU
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Banker’s order (if you have a bank or building society account you can make a gift by completing the form below)
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On-line donation via www.downsideup.org (tax effective for UK and US tax payers)
Please send us the Donation Form so that we can thank you for your contribution and keep you informed about Downside Up’s progress. If you are UK Tax payer and would like to make all your donations (from 6th April, 2000 onwards) worth a third more to Downside Up, then please tick the box below and we’ll do the rest. Please make sure your address details are correct. Name Address
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confirm that I am a UK Tax Payer and that DSU can claim the tax on all my gifts.
Please return form to Downside Up’s postal address: TNT Int’l Mail, MOW/MOW/10012/242, P.O. Box 66, HOUNSLOW, TW5 9RT, UK
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Please pay to Downside Up Limited at NatWest Bank, Holborn Circus, 1 Hatton Garden, London EC1P 1DU