The eighth international “Every Child Deserves a Family” forum, which is organised on an annual basis by the Naked Heart Foundation for leading experts from Russia and beyond, will be taking place in Moscow from 14 to 16 October 2019. This year’s forum will focus on the extremely important topic of quality of life for people with special developmental needs.
According to Russian statistics agency Rosstat, people with special needs represented just over 8% of the Russian population in 2018, while the number of people diagnosed with a mental disability last year came to 59,000. These people live among us, they have friends, families and people who support them. They are a very significant proportion of the population – millions of people – who have the right to a decent life, communication, leisure, education, personal interests and employment – all the same daily needs as the rest of us.
While the government and society are trying to increase resources and funding in this area, such resources are clearly insufficient and we must work together to address this. What else can the government and society offer to enhance aspects of life such as physical and mental health, social relationships and living environments? These issues will be presented at the forum by people with special needs, members of their families and leading international and Russian specialists.
Dmitry Ignatov, Paralympic athlete, TV host and multiple medal winner, Yury Kuznetsov, journalist, and other well-known self-advocates will talk about their experience and what quality of life means to them.
Doctor of psychology Liezl Schlebusch (South Africa) will discuss how individuals with special needs and their families can influence quality of life, while Dr John Phillips, professor of neurology, paediatrics and orthopaedics and Medical Director at the Mind Research Network, University of New Mexico, will help the forum participants answer the forum’s key question – what does quality of life mean and how can it be ensured? Professor Cathy Binger (University of New Mexico, USA) will talk about the importance of communication and how to give a voice to people who for various reasons are not able to use speech.
The Foundation has taken into account participant feedback from previous forums and is now offering even more practical expertise, in the form of practical workshops organised for parents and specialists (psychologists, teachers, special educational needs teachers, speech therapists, tutors, and doctors in various fields). Russian and foreign experts will also share their practical experience in various areas. For example, participants in a Naked Heart project in Tula will discuss how families can learn skills relating to feeding children with severe motor disorders, while Dr Mindy Scheithauer, a certified behavioural analyst from the Marcus Austism Centre in Atlanta, USA, will talk about how to deal with a child that runs away. Dana Johnson, Professor of Paediatrics in the Division of Neonatology, University of Minnesota, and Mary Jo Spencer, specialist from the Adoption Medicine Clinic, University of Minnesota, will talk to parents about how to facilitate the transition of a child (including in relation to children with developmental disabilities) to a new family environment. Issues relating to puberty, including safety and sexuality for people with disabilities, will be discussed by Marsha Stepensky, a specialist from the HSC Pediatric Center, Washington, USA.
All the experts, including those from other countries, will be participating in the event on a completely pro-bono basis, at the invitation of the Naked Heart Foundation.
Since 2012, more than 4,000 people from around 150 towns and 20 countries have attended the Every Child Deserves a Family forum, which has featured more than 500 speakers. The forum provides parents and specialists with the most up-to-date knowledge, which they can then apply in their everyday lives and work.
Participation in the forum, accommodation in Moscow and subsistence are absolutely free of charge for the specialists selected to take part in the forum. The specialists’ organisations will pay only for their travel to Moscow.
The forum will be held at the Renaissance Moscow Monarch Centre Hotel, 31A bld.1, Leningradsky Ave, Moscow.