Between 14 and 16 October, the VIII International «Every Child Deserves a Family» forum was held in Moscow. The forum is an annual event organised by the Naked Heart Foundation for families raising children and young people with special needs, foster parents, psychologists, teachers, preschool teachers, tutors, speech therapists, occupational therapists, medical professionals, social workers and other specialists. This year the forum focused on quality of life for people with special needs. The event attracted 517 participants from 66 cities in Russia and neighbouring countries. The opening ceremony was hosted by TV presenter Tatyana Lazareva and a member of the Board of Trustees of the «Sozidaniye» charitable foundation.
Over the course of three days, the participants and leading international and Russian experts discussed what quality of life means for people with special needs, and effective modern assistance programmes that can improve the lives of families raising children with mental and physical disabilities.
Since 2012, the forum has served as a platform not only for the development of Russia’s professional community, but also for raising public awareness of various developmental disorders such as autism, cerebral palsy, Down syndrome and others. In parallel to the forum’s main programme, Naked Heart founder Natalia Vodianova, along with Russian TV presenter Olga Ushakova, discussed various aspects of quality of life for people with developmental disabilities. «Quality of life for people with developmental disabilities is simply having the opportunity to live a normal life. We at the Naked Hearts Foundation help families raising children with autism and other developmental disabilities to realise this right to a normal life; to that end, we train specialists who provide qualified assistance programmes, educate parents and develop family support centres. One of the most important elements in that regard is the annual international «Every Child Deserves A Family» forum» commented Vodianova.
The forum speakers included representatives of the world’s leading universities: the University of New Mexico, Emory University and the University of Minnesota. Below are some comments from foreign experts participating in the forum. (not yet available)
Liezl Schlebusch, Centre for Autism Research in Africa (South Africa), discussed how individuals with special needs and their families can influence quality of life.
Stormi White, Marcus Autism Center, Emory University, emphasised the importance of a family-oriented approach to supporting families of children with special needs.
John Phillips, professor of neurology and paediatrics at the University of New Mexico, helped participants answer the forum’s key question — what does quality of life mean and how can it be ensured?
One of the forum’s key topics was the question of how to optimise the transition of children from orphanages to foster and adoptive families. Dana Johnson, PhD, professor of paediatrics in the Division of Neonatology, University of Minnesota, talked to parents about how to facilitate the transition of a child (including in relation to children with developmental disabilities) to a new family environment.
Mindy Scheithauer, PsyD, a certified behavioural analyst at the Markus Autism Center, Emory University, talked about how to deal with a child who runs away.
Cathy Binger, professor in the Department of Hearing and Speech, University of New Mexico, and speech therapist, discussed issues relating to quality of life and communication.
Well-known self-advocates also spoke about their experiences and what quality of life means to them: Ksenia Bezuglova, President of the «Everything is Possible» charity foundation and Miss World 2013 for women in wheelchairs; Dmitry Ignatov, a Paralympic athlete host and a winner of multiple swimming medals; Maria Bystrova, actress for the inclusive cinema and theatre project «Interaction»; Natalya Isaeva, mother of an artist with autism, Markus Martinovich; Yuri Kuznetsov, journalist and public figure; and many others.
Participants in Naked Heart projects implemented in Nizhny Novgorod, Moscow and Tula also shared their experiences with parents and specialists. During specially organised master classes, specialists presented best practices relating to improving self-care skills, using additional communication, feeding children safely with the help of special equipment, organising family-centred interdisciplinary assistance programmes.
All of the experts, including those from abroad, participated in the forum on a pro-bono basis, at the invitation of the Naked Heart Foundation.
The forum is held on an annual basis, allowing participants to get regular updates on best practices and contribute to the development of a professional community in Russia.
Since 2012, almost 5,000 people from 193 cities and 22 countries have attended lectures and seminars delivered by more than 500 speakers at the «Every Child Deserves a Family» forum.