Impact report — 2017 фондImpact «обнаженные report — 2017 сердца» table of contents table of contents foreword 4 who are we 6 2017 in the Foundation 8 Highlights of 2017 10 Every Child Deserves a Family programme 12 Early Intervention 18 School Project 26 Forum 32 Educational materials and training 38 Family Support Centre and Regional NGOs 42 Summer with Purpose 46 Advocacy 50 Play with Purpose programme 56 Financial report 68 How you can help 74 2 2 фондImpact «обнаженные report — 2017 сердца» foreword Natalia Vodianova The Naked Heart Foundation is continuing to introduce the Russian professional community and parents of children with autism to evidence-based support methods. We are delighted that leading international experts Another important event was the long-awaited pre- have been to share evidence-based methods of miere of the music video for “Angel of Faith” by working with people with special needs, and that Basta and Polina Gagarina, which focused on the the results are already being seen in practice, in the pressing issue of the abandonment of children with work of Russian specialists. special needs. This was a continuation of our #dont- besilent project. However, our work as a whole will only be effective if social attitudes towards people with special needs Tens of thousands of children with living parents live and their family members change. That is why advo- in orphanages around Russia. This “social orphan- cacy is one of the Foundation’s main activities. hood” can and must be eradicated. While I under- stand that all of these actions is a drop in the ocean, A striking example of such work was our inclusive it is drops like these that will gradually build a soci- House of Hearts festival, the first of its kind to be ety that is open to all people, of all abilities. Thank held in Russia, which covered the main aspects you for supporting our common cause! of contemporary culture: music, literature, theatre, architecture, fashion and science. The programme was adapted in such a way that it allowed people with special needs to take part, and each guest was able to contribute to the development of an inclusive society. 3 фондImpact «обнаженные report — 2017 сердца» foreword Anastasia Zalogina We are delighted that more and more people are supporting the Naked Heart Foundation every year. Four years of work on our education project in Nizhny Novgorod have produced impressive results. We started working with teachers from six spe- We’ve logged impressive numbers for the Summer cial schools in the city in 2013. A further four kin- with Purpose project, with more than 200 chil- dergartens joined the project in 2015, and in early dren with special needs visiting integrative camps 2016 we opened our Early Intervention Centre for in 2017. Most importantly, the Foundation trained young children with autism. The goal is to prepare staff from nine NGOs and funded camp sessions children with autism for school as early as possi- for seven organisations. 144 employees and volun- ble. The opportunity to regularly attend kindergarten teers gained knowledge about effective methods of with other children and to receive professional sup- working with children and young adults with autism, port allows children with ASD to feel more prepared which they will use in programmes to help children when they start school and to integrate more easily with special needs throughout the year. Further- into the new environment. more, we not only teach others, but we also con- tinue to learn ourselves. Last year our Early Intervention project was launched in collaboration with the Tula Centre for This year the sixth International “Every Child Children’s Psychoneurology, and it continues to Deserves a Family” Forum was devoted to evi- develop. The programme for the project was devel- dence-based support programmes. Over 700 par- oped by the Foundation and the project is curated ticipants from more than 80 cities and nine coun- by specialists from the Department of Neurol- tries (Russia, Ukraine, Belarus, USA, South Africa, ogy at the University of New Mexico, headed by Czech Republic, Finland, Estonia and Kazakhstan) Professor of Paediatric Neurology and Paediatrics attended our forum in Moscow. The speakers repre- John Phillips, and Naked Heart experts Svyatoslav sented six leading foreign universities, including the Dovbnya and Tatiana Morozova, who are also visit- University of New Mexico, the University of Utah and ing professors at the University’s faculty of neuro- the University of California. We are grateful to all the science. people who help us support children with special needs, and we appreciate any support that you are willing to give us, whether it is financial assistance or voluntary practical assistance. Let’s continue build- ing an inclusive society together! 4 4 Impact report — 2017 who we are We are the Naked Heart Foundation, a charity created by Natalia Vodianova in 2004. The charity was set up in order to support children with disabilities in Russia. We started by creating inclusive parks and playgrounds for children of all ages and abilities under our “Play with Purpose” programme. In 2011, we expanded our work and launched the “Every Child Deserves a Family” programme, which consists of a range of projects to support families of children with special needs. Our mission is to help create an inclusive society that is open to people with disabilities and special needs. We aim to ensure that no child with living parents ends up in an orphanage or a children’s home. We want to prevent parents from feeling that there is no other option but to place children with special needs in institutions, due to social pressures or failures in the health-care system. We also work with families who have made the difficult decision to keep their disabled child at home, making sure that they have access to a comprehensive range of free services and support from child development specialists who are trained in modern practices and methods. We want every child to have access to a vibrant, safe and stimulating place to play. Every neighbourhood, children’s hospital and school should offer a modern play area that is suitable for children of all physical, mental and sensory abilities. We are working on creating and developing a comprehensive support system that helps parents and professionals acquire new knowledge and improve existing skills relating to working with children with special needs. After all, effective support for such children starts with educating the adults taking care of them. There is still a pressing need to develop a community of experts and specialists who work with children with special needs in Russia. There is currently a lack of professionals working in essential fields such as physical and occupational therapy, applied behavioural analysis, alternative and augmentative communication, and feeding and nutrition for children with multiple disorders. This is a new and costly area of education. Crucially, all our programmes and workshops use evidence-based methods. This means that every decision relating to a support programme is based on clear evidence of the effectiveness and safety of existing methods, obtained through clinical trials. Only such an approach can enable the development of modern and effective programmes involving minimal cost and maximum benefit for children and their parents. We believe that we need to work systemat- ically, gradually developing existing infra- structure to improve the living conditions of each individual child. 5 who are we autism key facts Since 2004, we have: 1 in 160 children in the world has an autism spectrum disorder (ASD). In the US, the figure is estimated at 1 in 59. created 192 inclusive parks and According to the Ministry of Health, playgrounds in Russia and abroad; 1% of children in Russia have ASD. however, only 1 in 40 have been diagnosed. provided training on working with ASDs begin in childhood and tend children with autism to hundreds of to persist into adolescence and adulthood. child development specialists from all over the country and abroad; Worldwide, people with ASD are often subject to stigma, discrimination and human rights violations. Globally, access to services and arranged access to free professional support for people with ASD is inadequate. services and legal assistance for families raising children with special needs; launched educational projects for early intervention and support in schools; equipped six rooms with sensory integration and occupational therapy equipment; How we work held six annual international forums; Currently, the Foundation is working financed integrative summer camps in two main areas: for children with special needs; “Every Child Deserves a Family” programme helped over 10,000 children through A comprehensive programme to support our programmes! families raising children with special developmental needs (p.11) “Play with Purpose” programme Creation of inclusive play facilities (p. 55) We are very proud of the achievements of our small team! 6 фондImpact «обнаженные report — 2017 сердца» In 2017 the NHF: sponsored trained 112 specialists from 21 organisations across five regions to run Early intervention program- mes for 203 young children with autism and 54 children regional NGO projects with motor disorders; supporting hundreds of families; trained 145 specialists to run summer camps for over 200 children with special needs; made education accessible to 239children with special needs in five regions of Russia and trained 71 teachers;