On 1 and 2 December in the Public Chamber of the Russian Federation and the office of the company Mail.Ru Group hosted the international conference “People with down syndrome and other mental characteristics: the right to the future”, organized by the charity Fund “downside Up”, which this year celebrated 20 years. The purpose of the conference is to develop recommendations for the further development of support for people with down syndrome and other mental features and their inclusion in society. The two-day event was supported by the presidential grants of the Public Chamber of the Russian Federation (Commission for the development of the nonprofit sector), the public relations Committee of Moscow, the Ministry of economic development of the Russian Federation, the Charitable Foundation Elena and Gennady Timchenko and the company Mail.Ru Group. The conference was attended by more than 300 participants from 60 cities.
For the first time at the conference were people with down syndrome. The event was opened by the guest from the UK, Florence Garrett (the girl with down syndrome) and the Director of the Foundation “downside Up” Anna Subject. Florence made a welcoming speech in which he told about himself and about what down syndrome has not stopped her to grow up and become independent, professionally engaged in swimming, to education, and even have an own column in the newspaper. Maria Nefedova, Maria Bystrova and Grisha Danishevsky (young people with down syndrome) participated in the round tables and master classes. The guys talked about their lives, Hobbies and future plans, and Masha Nefedova told about his work in the charity “downside Up” as an assistant teacher.
During the conference were presented some results of the analytical work of the charity “downside Up”. According to the Fund, with a total annual birthrate of about 2 million children in Russia in 2015 was born about 2,200 children with down syndrome. Alexander Borovykh, Director of strategy Department of the DSU, shared problems faced by the Fund when planning their programs. It was noted that it is impossible to answer the question: how many parents refusing children with down syndrome. There is no General registry of data on the number of abortions and people with down syndrome living in institutions. Until 2011 such a registry existed, many regions of Russia have submitted data to it. Now, statistics are kept only on the basis of expert assessments.
Alexander Borovykh shared another interesting statistic, revealing problems in the social development of our country. Found that 59% of families with children with down syndrome encounter difficulties when trying to arrange your child in kindergarten; 9% children not attending any educational or leisure facilities*. If we talk about children with down syndrome of school age, most of them go to school (i.e. are homeschooled), many attend various additional classes; a number of families in house specialists, and only a small percentage does not go neither to school nor to classes, not specialists. Everything else, up to 90% of pupils with down syndrome attend special schools, 10% of them are studying in boarding schools and Tutors is only 9% of pupils in a third of cases is the mother**. And 37% of parents complain that the child is very tired in school that the volume of homework does not leave more time for anything**.
In the presentations of speakers was discussed that still preserves the relevance of the issue of creating conditions for the development of the potential of adult people with mental characteristics. Thus, according to the DSU, among 63 families raising adolescents with down syndrome (15 years), 47 do not use public transport; half have graduated from high school not go to College. Many parents from the regions point out that in their cities there are no conditions for vocational development of adolescents is just a hobby***.
The answers to the question “What is the future of people with down syndrome and other mental characteristics?” speakers and participants were looking for during the round tables. The participants recognized the necessity of creation of legislative acts regulating the issues of early intervention, employment and support to families of people with mental characteristics; noted the need to create conditions in medical institutions to obtain objective and timely information to future parents whom will have to make a conscious decision to have an abortion or take the child to the family. According to the participants, it is necessary to create conditions for normal life of people with down syndrome. For example, to equip the streets with special signs in accessible language for people with mental peculiarities, to inform the society and call on them to assist such people.
The conference was attended by:
Amy Allison, Executive Director of “the Guild of Down Syndrome” in the US, shared their experience in implementing programs to support people with down syndrome, noting the close collaboration of nonprofit organizations and government agencies;
Julia A. Razenkova, head of the laboratory of content and methods of early intervention for children with problems in development of FEDERAL state scientific institution “Institute of correctional pedagogy of the Russian Academy of education” in Moscow, presented the successful development of early intervention in the regions of Russia, particularly in the Mari El Republic and Samara;
Elena Borisovna Nikolaeva, head of GBUZ “Clinical diagnostic centre “health of the mother and child” in Yekaterinburg, described the practice of the system of perinatal parental support in case of risk of birth of children with special needs and introduction of such important procedures as the Protocol of the communication of the diagnosis;
Dennis Rosa, the Chairman of “Perspective” and other experts, spoke about the programs of vocational guidance and employment of people with disabilities, which have been successfully implemented in our country.
In discussions at the round tables brought together experts from Pskov (interregional public organization in support of people with mental disabilities and mental and physical disabilities “Equal opportunities”), Moscow (the Center of rehabilitation of disabled children “Sunny World”), Ekaterinburg (sroo “Sun children”), and many other professionals. Also was presented information about the system of state support to non-profit organizations and social initiatives (Laykovskaya Elena Eduardovna first Deputy Minister of social policy of the Sverdlovsk region).
The second day included sessions on “Effective practices” in which experts from different organizations presented their experiences of supporting people with down syndrome and other mental features. Participants learned new approaches and methods of work with such people and their families.
*Data for Russia obtained from the online survey of 294 families registered in the DSU (spring 2015); the age of the children 3-8 years old.
**These data are obtained by telephone survey of 167 families were registered in the DSU (winter 2015-2016). Geography: Moscow. Age 8-18 years.
***These data are obtained by telephone survey of 63 families registered in the DSU (fall 2016). Geography: Moscow. The age children 15+