The main results of 2017
01 February 2018

The Deaf-blind Support Foundation So-edinenie (Con-nection) held the All-Russia Cultural and Rehabilitation Week for the Deafblind in Dagestan, which comprised over 200 participants from different regions of Russia. They have managed to establish and revive contacts, had a chance to visit various places of interest in Dagestan (with its Caucasian hospitality, customs and traditions) and take part in workshops and master-classes. We celebrated the 25th anniversary of Elvira – an organization of the deafblind, which also conducted its Congress there. 

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Dagestan was a deliberate choice - we wanted to show “different Russia” with the combination of different religions, with mountains and the Caspian Sea. Besides, the Foundation has a lot of activities in Dagestan – social clubs, center for teaching computer skills and the volunteer center at the local university.
In summer 2017 with the support of the Deaf-blind Support Foundation So-edinenie (Con-nection) the first bionic eye implantation in Russia was made. The technology was brought from the United States (Argus II project), but now it is available for the Russian patients. Doctors have been trained, the rehabilitation complex is ready, the government pledged to include it in the list of hi-tech surgeries paid by the state (after 5 successful operations). 

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Moreover, we contributed a lot to improving of the rehabilitation process and teach our deafblind patients how to use the implant. In December 2017 we conducted the second operation. And in January we signed MoU with Second Sight concerning our future plans to upgrade the device and to use different technologies (such as virtual reality) in facilitating the learning process. By the way, there are no more than five deafblind people with such implant around the world, so our surgeries were unique from this side as well.

In July the president of the Foundation Dmitry Polikanov participated in the meeting of NGOs with President Putin. He presented key projects of the Foundation – supported living, eye implant, training for interpreters, etc. As a result, the Government for the first time in 12 years decided to amend the Federal List of Devices for the Disabled and include Braille readers (displays) for the deafblind and screen reading software, as well as to increase the amount of hours of interpretation (from 40 per year to 240 for the totally deafblind and 84 for the general deafblind population). This was a pioneer experience for people with disabilities who have been fighting to have the List updated all these years.

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In December Dmitry Polikanov took part in another meeting with President Putin and the organizations of people with disabilities. The Con-nection held a small exhibition of various gadgets developed by Russian engineers and Dmitry presented them to Putin in person.
In December Con-nection together with Istok-Audio group launched the new plant for the localized production of the cochlear implant in Russia (with Danish Otikon company). Russia joined the exclusive club of hearing implant manufacturers and this was an outstanding event for the Russian assistive technologies industry.
In summer 2017 the Deaf-blind Support Foundation So-edinenie (Con-nection) signed an agreement with Perkins International, implying training for the Russian experts on deafblind education in accordance with the international standards. The program will run until 2021 and includes online and offline modules with three different levels of difficulty. The first training for 38 specialists from 15 regions started in Moscow in January 2018. The course was translated into Russian, adapted to the Russian realities and improved with the inclusion of our pedagogical techniques during the pilot program in November-December in the Perm University. By 2021 people from 40 regions should pass through all three phases (some will go through the ELP and Summer Institutes in Perkins) and become guru (leading consultants) in their regions.
In parallel the Foundation started the project to develop resource centers in the regions (where those gurus will actually work). Agreements were signed with the local ministries of education in 5 territories, another 20 are pending the signature.

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In December the Con-nection published a book by Prof Dr Alexander Suvorov, deafblind participant of the famous Zagorsk experiment. The book tells about the life and adaptation of the deafblind people, teaching methods and psychological techniques, as well as contains his recollections about the history of working with the deafblind in the Soviet Union.
In October and December the Foundation presented its international theater projects Touchables at the Royal National Theater in London and at the UNESCO headquarters in Paris. The project involved British and French deafblind and deaf people and helped not only to make the performances but to exchange experience in the sphere of creative and inclusive arts.

And more…

  • the Foundation  continue our census and the database now contains nearly 4,000 records, when each revealed deafblind person gets his or her individual development trajectory – a program of assistance accustomed to the personal needs.
  • 38 social clubs work in 26 regions of Russia and are visited by over 1,000 people.

  • Centers for computer training operate in 4 regions and have already helped over 250 deafblind people to adapt to the information society.

  • New profession was officially established in the legislation since January 2017 – an interpreter for the deafblind (typhlo-surdo-interpreter).

  • The Foundation designed and passed to the Ministry of Labor methodological guidelines for organizing the supported living programs for the deafblind.

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  • We held the first night show of our new performance “Anima Chroma” at the Cultural Forum in St Petersburg (and showed it in Moscow in January 2018). The performance involves 4 deafblind actors who work together with 3 professional actors and combines modern dance and animation by Oscar-winner Alexander Petrov. This is the first time in the world that all three components work together and the deafblind actors are not distinguished from their professional colleagues.

  • Association of the Deafblind Families now has 30 regional branches across Russia an held in autumn its first Leadership Course for the active parents from 10 regions (where they learned how to do PR, GR, fundraising and project management and started to implement their devised projects in their territories).

  • Two camps for deafblind families from all over Russia were organized in Nizhny Novgorod. It’s a complex event which brings together parents, children, volunteers, teachers and renowned experts (e.g. uses the same pattern as our Summer and Winter Schools). Our summer school in 2017 included the international module – the 3-day training from Kentalis.

  • 53 new “professional families” were trained and started to work across Russia within the framework of the Respite program. We also had a pilot project on expanding such care-giving from families with children to families with the adult deafblind people.

  • 187 people got medical consultations with the leading Russian institutions.

  • The international conference in May brought together nearly 350 participants and nearly 20 Russians were in the Russian delegation at the European DBI conference.


Plans for 2018

  • the Foundation  will continue the census and use new mechanisms for it – the Concept of Early Intervention approved by the government, the collaboration with the hearing and vision medical centers, genetic testing, etc.

  • 20 resource centers for the pedagogical gurus will be set up in the regions.

  • Professional standard of the interpreter will be included in the educational programs in the Russian colleges and universities.

  • We will establish the Association of the Deafblind, which should comprise all small NGOs of the deafblind and for the deafblind and should develop activism and advocacy within this community, should help the deafblind to abandon the selfish and passive approaches (“give me”) and become responsible members of the society. The initial congress will be held on February 20, 2018 in Moscow and will bring together 150 deafblind and hearing and seeing delegates.

  • We will expand supported living projects from “Quiet House” to other facilities – to Puchkovo, to training apartments in Lubertsy, to St Petersburg and Leningradskaya oblast, etc.

  • We will build a new rehabilitation center in Leningradskaya oblast (3 km from St Petersburg) for adults and children, which combine the experience of Puchkovo, Quiet House and Yaseneva Polyana and include accommodation for supported living, training for supported living, social skills and computer skills development, consultations and educational activities for the children and their parents.

  • Interpreter services in 5 regions will become more independent from the Foundation and will hopefully be funded and operated by the local authorities and NGOs.

  • In December we will hold the All-Russia Creative Arts Contest for the deafblind.

  • We will continue our research in the area of genetic therapy and optogenetics in consortium with the leading institutions of the Russian Academy of Sciences.

  • We will launch a project on new methods of eye implantation.

  • The gadgets within the Neurocommunication project will be ready (universal design device for speech and thoughts recognition, amplifying earphones and a communicator with numerous functions).

  • We will continue to promote in the regions our package-solution products, such as Respite or “Mother’s School”.

  • We will hold the international conference on April 3-4 and the Young Researchers Conference in fall.

  • We will publish a textbook for students on “Education for the Deafblind” and 7 brochures on new pedagogical methods. The publishing program will also include two books translated into Russian – the course from Kentalis and the selected articles by Jan van Dijk, as well as the Russian version of the DBI Review.

  • We will continue our efforts to promote the Lorm code in Russia.

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