Russian language site:  

Education

You are here

CONFERENCE “ETHICS OF INTERACTION WITH A PERSON WITH MENTAL DISABILITIES AND HIS NEAREST. ROLE OF CHARITIES IN ORGANIZATION OF SUPPORT AND ACCOMPANIMENT: PROBLEMS AND WAYS OF THEIR SOLUTION”

Each year Downside Up strives to bring together representatives of charities, state bodies and other experts in supporting children and adults with mental disabilities in order to discuss all together the most up-to-date issues and problems related to improving life of people with Down syndrome. We are putting much unified effort in finding ways of solving these problems and issues, in elaboration of recommendations for further development of system of support for people with Down syndrome and other mental conditions and for their inclusion in social life.

This year the conference “Ethics of interaction with a person with mental disabilities and his nearest. Role of charities in organization of support and accompaniment: problems and ways of their solution” became the event which put the experts together. The All-Russian research/practice conference took place on June 17-18, 2021. This year the conference was held with face-to-face and virtual participation. It was organized conjointly with Charity foundation “Syndrome of Love”, Commission on development of charitable sector and support of socially oriented charities of the Public Chamber of Russian Federation. More than 30 professionals from Russia as well as from Germany and USA took part in the conference.

The audience was more than 300 people who watched online discussions on ethics in different areas of life of people with Down syndrome and their families. “We would like to move away from a stricter definition of “ethics” by broadening it. We believe that ethical standards in rendering services to people with mental disabilities should be based on high professionalism. This wider definition of “ethics” should become a must for every specialist, - stated Tatyana Nechaeva, Head of Family Support Center. – It is highly important what principles we are guided by when we are interacting with a person with mental condition and his relatives, in which way we use resources of this interaction and cooperation, what role a non-governmental organization plays in this interaction and what resources it may provide for parents, state authorities and each other.”
Elena Topoleva-Soldunova, head of the Commission on development of charitable sector and support of socially oriented charities of the Public Chamber of Russian Federation, in her welcoming speech underlined: “The topic of the conference is of high importance. There is much to discuss and to do. In these later days we significantly advanced in making people with mental disabilities feel more included in the society and making the society more inclusive. The more inclusion there is, the healthier is the society.”

“We shouldn’t concentrate on particularities, but on the unity of our society, no part of which should be segregated,” – told Aleksander Borovykh, head of Strategies department at Downside Up, while speaking about results of the poll on attitudes of Russian society to people with Down syndrome. Numbers disclosed by Aleksander prove the value of the topic chosen for the conference. In his opinion, a lot of problems in perception of people with Down syndrome by the society are caused by the fact that people rarely see them, especially in adulthood, and that is what must be changed.

The opening of the conference was presented by Downside Up director Anna Portugalova and Ivan Nastasov, a 22-years old participant of the foundation’s programmes for young adults with Down syndrome. Anna stressed out how important it is that people with Down syndrome take part in the conference alongside with experts. On the first day of the conference it is people with Down syndrome who became key speakers of the Public Talk. They talked about themselves, their lifestyles, possibilities and problems that they have. Stanislav Bogdanov, Nikita Panichev and Christina Kozik from Moscow, Evgeniya Dubrovskaya from Vologda and Varvara Chaplygina from Barnaul took part in the Public Talk, and for Varvara it was the first experience of talking in public. “I worried a lot, but I got it. And I’m proud of myself” – confessed Varvara after the meeting. Each of the participants can actually be proud of themselves: someone cooks all by himself, someone is successful in sports and arts, someone has a few qualifications, someone helps others, and everyone keeps on going further. “When I grew up and met other young people, I saw what they are aiming at, how they are developing, and it was so cool! I am an ordinary guy and I also want to develop, but sometimes people like me need some support”, - says Nikita Panichev. The conference became a very detailed and constructive discussion of colleagues and like-minded persons who had a chance to discuss various topics related to principles of ethical interaction: starting from medical genetic consulting and up to significance of ethics in creation of an inclusive jazz-band.

EMPLOYMENT AND SUPORT OF ADULTS WITH MENTAL DISABILITIES

On the first day of the conference there were discussions on how business community supports people with mental disabilities led by charities and employers who had experience in employment of people with Down syndrome. These are Rocket Bank, café “Zhu-zhu”, modeling agency “Alium”, inclusive workshops “Simple Things”, inclusive café “Cucumbers” (Saint-Petersburg), charities “Downside Up”, “Syndrome of Love”, ‘Life Path”.

Ekaterina Denisova, head of modeling agency “Alium”: “Possibility of employment isn’t only about creating new additional work places for people with Down syndrome, but it’s about finding new possibilities in existing workplaces, in different professions, where they would be able to apply their skills. Sure, sometimes they are slow, they need instructions, but if we put it all together in advance and write it all down – there will be a very interesting mutually profitable story”.

People with Down syndrome can be and should be employed, but they need support, care, and help as well as elder people. These two groups were merged in one project implemented in Ryazan district in a very efficient way. Olga Krestyaninova, deputy manager of the teacher resource center for disabled persons and people with health limitations of Ryazan state medical university named after academician I.P. Pavlov, spoke about ways of integration of people with Down syndrome in system of care for elderly people. It is also important that the new project of Ryazan district doesn’t demand much expenditures and can be easily scaled on state level.
Alena Legostaeva, psychologist of the charitable foundation “Life Path” and Center for Curative Pedagogics, and Roza Lyubimova, a lawyer from Nizhniy Novgorod, also discussed issues of further life arrangements for young people with Down syndrome and other mental conditions. In her presentation “Relationship, love, a family: a privilege for “normal” people or an inherent right for everyone?”, the psychologist spoke about relationships between adults with Down syndrome. Roza Lyubimova spoke in a very open and sincere manner on what options people with mental disabilities have for their further life after their parents would pass away. She gave some practical advice for parents on actions that they might take right now and spoke about topic that worries many people – whether people with mental disabilities should be deprived of legal capacity.

EDUCATION

Ekaterina Lebedeva, speech therapist, main expert of Center for Curative Pedagogics “Special Childhood”, trainer of the Makaton programme, spoke about ways of building a communication and respectful dialogue with people experiencing speech problems. Her colleague Aleksandre Vodinskiy, leading specialist and psychologist at the Center for Curative Pedagogics, head of the jazz band “Moonberry Jam”, explained how music can help and what role ethics play in creating a successful integrative model for musicians with different disabilities when each voice matters.

Marya Zelenova, clinical and crisis psychologist at the charity “Small crane” and programme “Bullying.No”, raised a very important and sensitive topic. She told, that everyone who is somehow different from others can become a victim of bullying. Statistics show that 13% of all schoolchildren have experienced victim role, 20% - aggressor role. By UNESCO data, every third child in the world suffers from bullying. Marya showed what consequences for physical and psychological health bullying has, which forms it may take and how parents may find out that their child is suffering when he tells nothing about it. She also gave step-by-step instructions for parents, teachers, and children.

Adelya Vilshanskaya, Board member of Association of Inclusive Schools, also dedicated her presentation to ethical norms of building an educational process and of interaction of educational institution with families of special needs children. Marina Chaplyguina, director of regional charitable foundation “Circle of Sun” (Barnaul), also rose important questions of school education in her presentation such as what problems “advanced” children with Down syndrome who learn in accordance with correctional programme face and how they can be solved; practice of changing educational programme for Special Individual Programme for Development; how parents should act if a child went to school but later they saw that he hadn’t been ready for that, how to help such children in successful learning. Marina showed many practical cases and stories of children from Altay region’s correctional schools. Marina also presented her recommendations on building partnership relations with school which helps to move from simple integration to more profound inclusion.

Cora Halder, expert and board member of European Down syndrome Association (EDSA), founder of Information center on Down syndrome in Germany and mother of a girl with Down syndrome, also dedicated her speech to the importance of inclusion for realization of life perspectives of a person with Down syndrome. Speaking of inclusion, she told her story of moving from separation to inclusion in 1980s and changing her views on it. “And when they are adults, the fight is not over, we have to force them into good work situations and into inclusive home and living places. Of course that was not so easy, and still is not easy!”

Specialists from charitable foundation “Blagovest”, Vladimir Region, who have succefull experience in developing “special” soccer in their region, also spoke in the framework of this section and shared their experiences in building educational process for people with Down syndrome.

MEDICINE

One of the most sensitive issues in ethical interactions – issue of relationships between doctors and parents of children with Down syndrome. That is why it is so especially valuable that doctors-geneticists, pediatricians and other specialists interested in improving the situation in this area, took part in the conference.
So the audience had a chance to hear presentations of Elena Baranova, geneticist, Senior official of educational department of medical genetics faculty of Russian Medical University, who spoke about aims and tasks of medical genetics consulting of a family; Aleksandra Shasheleva, pediatrician, teacher at the Moscow First Medical University named after I.M. Sechenov, who share her opinion on building partnering relations between parents and a pediatrician.

Yulia Razenkova, Ph.D. in Education, director of the laboratory of complex research in early intervention of the Institute of Curative Pedagogics, dedicated her speech to phenomenon of trust burn-out from a parent to a specialist. Yulia outlined that the system in which a parent should unconditionally obey doctor’s advice and is in a position of a student, not a partner, is unable to function and leads to “burn-out” or “paralysis” of trust from a parent to a specialist. The expert showed poll results which prove that many professionals understand the problem and are trying to switch to partnering relations with parents. However, there are often pseudo-partnering relations between a doctor and a parent because doctors were never taught to build partner relationships.

In Yulia’s opinion, namely the Declaration of ethical principles prepared by Downside Up will allow to resist the phenomenon of trust burn-out of parents towards specialists. This might be reinforced by introducing issues related to interaction, building family relations in the mainstream of professional activities, into the system of training and retraining of psychological and pedagogical specialists in universities and the restructuring of the system of additional professional training of specialists in the psychological and pedagogical profile: to train not individual specialists, but a team that will work together. That is important for system of accompaniment of a child on every stage of life.

Anna Sonkina-Dormann, pediatrician, founder of medical school “Co-Operation”, manager of patients interaction of Chayka clinic, author of the book “Skills of communicating with patients”, agrees with her colleague. “We notice that many specialists are inclined towards partnership, but do not have the appropriate skill. Doctors do want to support parents, but they don’t know how. But there are appropriate tools, and we can learn them”.
There are three main principles in the communication of a doctor with a patient: preparation, dispensing and compassion, having learned to observe these principles, having acquired the practical skill of such communication with a patient, doctors will be able to avoid undesirable consequences, up to unsolicited advice and unprofessional personal judgments.
One more tool that may help to ease communication between parents and professionals is the Protocol of Announcing the Diagnosis at the birth of a baby with Down syndrome which has been implemented thanks to efforts of charities – partners of Downside Up – in 8 regions of Russia.

Charity foundation “Vladmama” is one of those who succeeded in implementing the document in its home region. Olga Siyanko, president of the foundation, shared her experience with colleagues. She described the steps taken by her organization to get the Protocol accepted and signed by relevant authorities and to be further implemented by doctors. Olga believes that one of key conditions of implementation of the Protocol is training for specialists. The trainings should be based on the principle of equality and organized by medical professionals.

Also for the Primorsky Territory, a personal dialogue with specialists became decisive in the implementation of the Protocol. The president of the Vladmama charitable foundation urged her colleagues not to be afraid to communicate with the medical community, even with the global resistance of specialists, to collect all possible objections, delusions, to work them out in a personal dialogue with local specialists.
Continuing the topic, the coordinator of family support, psychologist of the Downside Up charity Alla Kirtoki, spoke about her vision of how the interaction of a psychologist with medical specialists should be built, including at the stage of announcing news about the birth of a child with mental and other characteristics to parents.

Amy Alison, Vice President of Education and Advocacy, Down Syndrome Innovation, shared in her talk about how prenatal diagnosis works, what problems and what solutions to these problems exist in this area. At this stage, mothers often lack information, many of them do not understand how to interpret the diagnostic results and do not know where to get support. That is why a methodological guide was created on how to interpret the results of prenatal diagnostics for parents. In her speech, she also gave a lot of useful advice to relatives, loved ones, helping organizations on how best to support parents who are expecting a baby with Down syndrome.

Polina Zhiyanova, a defectologist, a specialist in early development of Downside Up Charitable Foundation, continued the topic of support, and spoke about the interaction of early assistance specialists with parents of young and preschool children. She drew attention to how important it is to build fruitful cooperation with close relatives of children, because the experience of parents, in the development of a child, is interesting and valuable, it can, should and is useful to be included in the work. The specialist shared examples of how parents become co-authors of specialists.

***
An important topic for all participants that is directly related to the ethics of providing services - "Evidence-based approach in the field of child protection" - was covered in detail during the conference by Elvira Garifulina, Ph.D. in social sciences, programmes manager at Charitable foundation of Elena and Gennady Timchenko, and Olga Zavodilkina, chief expert of the charity providing social help to children "Spread your wings!".
As the organizers and participants of the conference noted, for those non-profit organizations that work in the field of child protection, the evidence-based approach is another step towards professionalization and improving the quality of their services. According to Elvira Garifulina, the evidence-based approach allows us to overcome many barriers: between science and practice, specialists and service recipients, adults and children, etc. This approach consists of three components: the level of training and position of the specialist himself, reliance on science and taking into account the needs target audience. She spoke about the development of the "Practice Evidence Standard", which allows for a comprehensive, high-quality, evidence-based assessment of the activities of various organizations.
Olga Zavodilkina emphasized that when her colleagues began to use this tool in practice, they changed the focus of assessing their activities, adding another emphasis: not only on what results the beneficiaries achieve, but also on what happens with the help itself.
Also, the subject of discussion during the conference was new digital, informational, methodological and educational projects. They were seen as a tool to engage and support people with mental disabilities, their parents and loved ones.

The charity “Syndrome of Love” presented the recently created Informational and Educational Telegram Bot, and Downside Up presented two of its new digital products: the digital Child Development Diary and the Logobank online resource.
This large-scale forum ended with a round table "Discussion of the implementation of documents related to security and ethics of receiving services." The roundtable participants discussed on what ethical principles documents regulating the activities of specialists in various fields should be based on, and what kind of documents they should be. The discussion was also about the Protocol for communicating the diagnosis at the birth of a child with disabilities, and about the Declaration of Ethical Principles for the Provision of Services to People with Mental Disabilities, recently developed by the foundations Downside Up and Syndrome of Love, as well as other documents, procedures and protocols, the development and implementation of which, in the opinion of the participants of this meeting, is now urgently needed.
Tatyana Nechaeva, head of the Family Support Centre Downside Up, noted that “Each of these documents should be "live", open to amendments and discussions, they are not necessary at all in order to limit the freedom of those who will be guided by them, but, on the contrary, so that any specialist feels less constrained and better prepared when interacting with a person with mental disabilities.”
***
The All-Russian research/practice conference “Ethics of interaction with a person with mental disabilities and his nearest. Role of charities in organization of support and accompaniment: problems and ways of their solution” allowed to carry out joint large and purposeful work aimed at raising the ethical standards of interaction with special needs people. Both the participants and the organizers understand that this is only the beginning of the journey. By combining their efforts and experience, in the future they will continue to work to ensure that people with Down syndrome have more opportunities for development, education, self-realization and employment, and less reason to talk about unethical treatment, both by them and their loved ones. And each participant of the conference will be able to apply the experience of colleagues and implement the ideas discussed during the conference in their own places.
“One head it's good, but two better, and thirty-three is just perfect!” - says Olga Siyanko, President of the Vladmama Foundation, answering a question about the value of the meeting. - This is a classic: you take the experience of some, the experience of others, you combine them, you build your path and walk along it.”
At the end of the large-scale meeting, the director of the Downside Up Foundation Anna Portugalova thanked everyone who took part in it: “We are very pleased that our conference brought together so many excellent experts from various fields, people with Down syndrome and their parents, to discuss a very important topic and together to understand what needs to be done in order to improve the situation with the ethics of interaction with people with mental disabilities, with the ethics of providing services to such people and their loved ones. We want to say a huge thank you to those who made this conference possible - all the participants, speakers, those who helped in the organization, special thanks to the Presidential Grants Fund, which supports many Downside Up and Love Syndrome projects, supported this conference, and also to the Public Chamber of the Russian Federation."

Downside Up will hold a scientific and practical conference on the ethics of communication

On June 17 and 18, the All-Russian Scientific and Practical Conference “Ethics of Interaction with a Person with Mental Disabilities and His Relatives. The role of NGOs in organizing support and maintenance: problems and solutions”. The conference will be held in face-to-face and distance format.

The event organizers, Downside Up Charitable Foundation, together with the Syndrome of Love Charitable Foundation, the Commission for the Development of the Non-Profit Sector and Support of Socially Oriented NGOs and the Commission on Charity and Social Work of the Public Chamber of the Russian Federation, will bring together representatives of regional organizations from all over Russia on one platform , experts who support people with Down syndrome and their loved ones, people with Down syndrome, as well as representatives of parenting communities and government agencies.

Today in Russia there is no adequate systematic support for adolescents and young people with Down syndrome, which complicates their active participation in the life of society. Adults with Down syndrome have far fewer opportunities for development, education, fulfillment, and employment than their normatively developing peers.

The conference participants will discuss possible ways to change the situation: topical issues of ethics, education, development, self-realization and employment of people with mental disabilities and will consider positive examples of their integration into the life of society.

Within the framework of the conference, the results of a study on attitudes towards people with Down syndrome and the needs of families will be announced, experts will raise the topic of communication with patients with mental disabilities and accompanying families at the prenatal stage, talk about such a phenomenon as "burnout of parental trust in a specialist", discuss the meaning inclusion for the realization of the life perspectives of a person with Down syndrome and successful employment practices for people with mental disabilities.

Together with parents and public organizations and teachers, they will talk about the ethical standards of building the educational process, about bullying, ways to support schoolchildren and adults with mental disabilities. And much more.

People with Down syndrome from different regions of Russia will talk about what it means to live active lifestyle, about their prospects, life aspirations and difficulties.

At the end of the conference, all participants will discuss the implementation of documents related to safety and ethics of receiving services by people with mental disabilities.

You can get acquainted with the Conference Program here

Anyone interested in the topic of ethics of interaction with a person with mental disabilities and his relatives can join as a spectator and ask their questions to the speakers.

The conference will be broadcast live on YouTube - the Downside Up Foundation's channel on June 17 and 18 from 10: 00-18: 00 (Moscow time)

* The event is supported by the Presidential Grants Fund

Downside spoke about clear language at the "TRANSLATOR 2030" scientific-practical conference MGIMO

From May 27 to May 29, the Odintsovo branch of MGIMO hosted an international scientific and practical conference "TRANSLATOR 2030: teaching professionally oriented translation in a changing world." Within the framework of the meeting, on May 28, the international forum "Clear Language Day" was held, during which clear language specialists from Kazakhstan, Finland, Germany, Sweden and Russia exchanged experiences in the use, development and dissemination of clear language in society.

Lada Talyzina, teacher of the Downside Up Foundation, took part in the panel discussion for the forum, making a presentation on the role of clear language in the activities of Downside Up and Syndrome of Love charitable foundations.

The presentation of the fund's specialist was devoted to the developments in creating a library of materials in a clear language for people with mental disabilities. Today, such materials can already be seen on the foundation's website in the section “To a person with Down syndrome”. Lada also spoke about the project "In Simple Words", which started on March 21 this year and gathered around itself a large number of partners, commercial organizations who were ready to post materials in a clear language on their Internet resources.

Clear language is an easy-to-understand form of our standard language, with content, words and structure adapted to make it accessible and understandable to people with mental disabilities and beyond. In a clear language with the help of text, pictures, you can read, speak, teach and learn, receive important information. You can, for example, sign up for a vaccination or get a bank card.

Clear language can be used in both oral and written speech: it is printed and online texts, videos, slides, audio texts and much more. In Finland and a number of other countries there are specialized media outlets that publish materials in clear language.

In Russia, interest in clear language is growing, due to the years of efforts of enthusiasts. Among them are Downside Up Charitable Foundation, GAOORDI - Association of Parents of Disabled Children, public organization "Perspective" and the Fund "Best Friends" Best Buddies Russia, Center for Curative Pedagogy "Special Childhood".

Downside Up Media Lab film “Jokers and Jokes. Ku-ku, my boy ”- recognized as one of the best comedy films at the International Film Festival in St. Petersburg

Short film “Jokers and Jokes. Ku-ku, my boy ”, created by the participants of the Downside Up media laboratory, received the 3rd degree Laureate Diploma in the nomination “Best Comedy Movie”at the III International Cinema Kids Film Festival.
The festival's motto is "Children make movies for children!” - it involves films that children and teenagers create for their peers, trying themselves as screenwriters, actors, directors. This year, the festival jury evaluated about 450 children's works created in St. Petersburg, Moscow, Novosibirsk, Yoshkar-Ola, Belarus, Kazakhstan, Estonia and the United States.
The Downside Up media laboratory film is the second part of the “Jokers and Jokes” movie project. “Jokers and jokes. Ku-ku, my boy” is a humorous sketch in the silent movie genre about how schoolchildren can help each other out of a difficult situation with humor. Students of the media laboratory themselves invented and developed a script. The team of the media laboratory led by its presenters - Anastasia Kaleusheva and Nina Ivanova - helped them realize their plan and remove the plot invented by the guys with the authors of the script in the title role.
Anastasia Kaleusheva, leading Downside Up media Lab:
“I would like to note that the festival had a very competitive environment. This is not an inclusive festival, which is also important, the cinema made by our laboratory assistants competed with the very strong works of children and teen-agers from all over Russia and the world. And for us, teachers of the media laboratory, and for our children, such an assessment of activity - outside the framework - is doubly valuable and important. This diploma can only be obtained for a professional approach to working on a film, without any discounts. ”
The media laboratory team continues to work on the film project "Jokers and Jokes." In the nearest future a new short film "Jokers and jokes. Circus” is preparing to be released.

Read "Take a Step"

Dear friends!
The next issue of Downside Up’s magazine “Take a Step” is available for reading on our website.
The regular sections “Doctor's Tips”, “Teacher's Look”, “Psychologists about Children and Parents”, “Parent Tribune” and others are waiting for you. The current issue of the magazine differs from the previous ones – parents of special children were very actively involved: mothers of many children Anna Kryuchkova and Irina Plotnikova, adoptive mother Valentina Yakovleva, blogger and mother of the “sunny” Pasha Oksana Safaryan. And even an article in the section “Doctor’s Tips” was written by the mother of a boy with Down Syndrome - pediatrician Alexandra Shasheleva. Parents also sent photos to be published in the magazine and actively participated in the survey, which was described in an interview by the head of Downside Up Strategy Department Alexander Borovykh.
Other materials of the issue are aimed at practical support for parents.
So, in an interview with dietarian Natalia Taran, readers will find specific recommendations on how to draw up a diet for children with food allergies and overweight.
Speech therapist Esmir Kazimova, who has practice in Azerbaijan and Turkey, writes about the need for speech therapy work with children in their first year of life.
In an article, psychologist Ilya Muzyukin raises an important topic. He writes about what autostimulation is, how it affects the development of the child, and how parents should respond to autostimulating behavior.
Another psychologist working in Downside Up - Vera Stepanova - recommends an interesting book to readers, which will be interesting for all parents to read.
Two materials in this issue are devoted to the physical development of children with Down syndrome. One of them is about adaptive physical education classes organized in Moscow, and the other is about the section on adaptive karate from Naberezhnye Chelny.
The magazine also published useful articles about the first books for independent reading and about the American experience in teaching teenagers and adults with Down syndrome digital literacy.
Thanks to everyone who sends us letters, photos and reviews! We are always glad to cooperate with you!
We hope that the restrictive measures related to the spread of coronavirus infection and forcing us to switch to a remote format of work will soon be lifted. And then we can send out a printed version of the magazine to all its subscribers.
Do not be sick and be in touch!

Internship at Downside Up

Speech therapists of the Sverdlovsk regional public organization "Sunny Children" were trained at the Downside Up Fund. SRPO “Sunny children” helps people with mental disabilities from birth to adulthood to live full social life. Specialists from Yekaterinburg learned how classes and counseling were organized for children of different ages and discussed a number of organizational issues regarding the work of the Family Support Center.
During the internship, they took part in group classes for kids of social adaptation groups, got acquainted with the way consultations were held for children aged 0 to 3 years and attended classes of supportive learning groups and daytime employment groups. Specialists got an idea of how individual lessons on game interaction and consultations of a speech therapist and speech pathologist of the Downside Up Fund were held.
Irina Kushkova, speech therapist SRPO "Sunny children":
“We are very pleased with the results of the internship. We managed to observe the work of the fund’s professionals working with children of all age groups: from infants to adults.
Since 2010, an early-warning service has been working in our public organization, and in 2011 our specialists came for an internship in Downside Up. Even then, we got an idea of how properly build interactions with parents, and what approach the Downside Up Fund professionals use in their work. Today, more than 300 families receive our help. ”
Anastasia Kaygorodova, speech therapist SRPO "Sunny children":
“The public organization “Sunny Children” is developing, new specialists come to us and they want to work using correct and up-to-date methods, based on many years of experience and working methods of Downside Up specialists. The main goal of this internship was to learn about best practices. After the internship, we will make changes to individual, group classes of children with speech therapists. We will play more using everyday situations. We draw parents' particular attention to the importance of completing homework on topics covered in real, everyday life.
For many years, the Downside Up Fund has been helping our organization in resolving not only pedagogical issues, but also in raising funds for the organization and implementation of various projects.
Our organization strives to ensure that people with mental disabilities have the opportunity to receive services for their development freely in any city or village in the Sverdlovsk Region, can develop unhindered, to interact equally with all people and benefit society.”
Pole Elena, director of the educational center Downside Up:
“Periodically the Downside Up Fund provides internships for specialists from various organizations who work with families with children with Down syndrome. Despite the fact that these internships are, as a rule, short-term and allow us to cover only part of our practical activities, after such meetings we remain in touch and are ready to continue methodological interaction with colleagues. To do this, we use distance forms: we include colleagues in our database of specialists, send them newsletters, be sure to invite them to participate in our webinars, join broadcasts of lecture and seminars, and take advantage of the opportunities of an advisory forum.
And, of course, Downside Up passes to our guests sets of methodological publications for specialists and parents, which colleagues can use in their workplace.”
The development and dissemination of best practices is one of the main strategic directions of Downside Up. In 2015, the fund received a license from the Ministry of Education for educational activities.
Get information about the possibilities and conditions of the internship at the Downside Up Education Center you can here.

“The Golden Standard of the Annual Report”. Downside Up Fund received an award in the competition of annual public reports of the NPO “Point of Reference”

The starting point is the All-Russian competition of public annual reports of socially oriented non-profit organizations, which the Donors Forum holds in partnership with the Social Information Agency and “Blagosphere” Center and with the support of the Ministry of Economic Development of the Russian Federation and the Presidential Grants Fund.
E.A. Topoleva-Soldunova - Director of ASI, A. E. Borovykh - Head of Strategies Department, Downside Up, A.B. Boldyreva - Executive Director of the Forum of Donors
343 organizations from all over Russia have applied for participation this year. The Downside Up Fund's annual report received the highest rating from an expert jury. “The Gold Standard” is awarded to the annual reports of NPO, which provide unambiguous, understandable, and complete information about the organization’s activities.
Downside Up Fund Annual Report is an open document that can be read by any interested person https://downsideup.org/sites/default/files/inline/files/report_2019_bloc....
The Downside Up Fund's annual public report includes information on what the organization’s work is all about, key events held during the year and their results, success stories, as well as important news and changes in working with people with the syndrome Down, occurred over the year. All information on the activities of the fund over the past year in the report is conveniently structured and contains statistics, numbers, infographics and much more, which gives the most complete and understandable idea for the external observer about the organization’s work.

Three dozen specialists finished courses of advanced studies "Development of speech and thinking in children with Down syndrome"

Downside Up Fund gave a course of advanced studies. Thirty speech therapists, speech pathologists, educators, teachers and other specialists working with children with Down syndrome and other mental disorders, discussed the developmental features of a child with Down syndrome, learned to draw up a comprehensive development program using the "Child Development Diary", and received answers to questions regarding "Competency-based approach."
Also during this course specialists learned what games and toys can become assistants in development, how to form and develop primary mathematical representations and concepts in children with the help of the manual "Numicon "and got acquainted with the kinesiological technique “brain Gymnastics". This part of the course was held in an interactive format - students themselves tried to complete tasks and exercises that their students encountered in the classroom.
Thirty specialists, both beginners and those who already work with children with Down syndrome, attended the course in person. Some of them are representatives of the professional community from the regions: Smolensk, Elista, Obninsk, Moscow and Moscow Oblast. All of them received training certificates.
Three hundred thirty-two people registered at the Downside Up webinar to listen to seminars remotely. Online broadcasts were conducted from each lesson. We recall that you can get acquainted with all the topics of the continuing education course online. To do this, you need to register for the webinar you are interested in on the calendar.

Downside Up experts gave a training seminar “Social Performance Management for NGOs, supporting families with children with Down syndrome”

32 representatives from 17 regional parent organizations (NPO) took part in the seminar. During the training on planning and results management, Alexander Borovykh, Director of the Downside Up Strategy Department, told the participants about the place of the social results management plan in the overall strategy of the organization, about the development of indicators and indicators for measuring results. Zoya Talitskaya, Head of the analytical group of the Downside Up Strategy Department, introduced the participants to methods for getting feed-back from people with mental disabilities. Tatyana Nechayeva, Head of the Downside Up Family Support Center, told about the methods used in the Foundation for diagnosing children.
Representatives of regional NGOs had the opportunity to practice using new techniques and shared their experience and best practices on these issues.
Downside Up specialists and representatives of regional NGOs discussed the implementation of the Protocol of delivering the diagnosis of Down syndrome to parents of a newborn and congratulated representatives of two regions - the Republic of Udmurtia and the Krasnoyarsk Territory. In these regions, thanks to the efforts of NCO participating in the workshop, such Protocols were adopted just the day before.
At the end of the meeting, a discussion was held on ethics of providing services to people with Down syndrome and mental disabilities.

New issue of the scientific and practical magazine “Down Syndrome. XXI Century "published

Dear readers!
We are glad to present to you the next issue of the scientific and practical journal Down Syndrome. XXI Century". It is gratifying to note that in it the balance is clearly biased towards practical materials describing Russian and foreign methods, realities, approaches in the field of assistance and support for people with Down syndrome and their families. Moreover, this experience covers almost all age groups and categories of citizens with trisomy-21.
So, on the pages of the magazine, leading Downside Up experts talk about the project of remote expert support and training for parents of young children with Down syndrome and practitioners working with them that they have developed and implemented.
New fund project, a media laboratory, focused on helping special teen-agers and young people, their speech and emotional and personal development. There the guys study as an unusual profession for them as a journalist, improve their communication skills, master the methods of interviewing and comprehend themselves.
The problems faced by adults with Down syndrome and their families, are covered in the material that describes the various forms of accompanying accommodation performed in Finland, including criteria for evaluating such practices and examples of the best of them.
Interesting and useful to any reader, the material covers the problems of all ages, created on the basis of the speeches of the famous American geneticist and specialist in Down Syndrome B. Skotko, who summarized a variety of knowledge and practices related to the prevention of Alzheimer's disease.
In an interview with N. Yu. Ivanova with S. V. Beylezon, “The right to work: the opportunity to be busy and necessary” talks about the problem of employment of adults with intellectual disabilities and the experience of organizing socially useful daily labor employment using the example of the inclusive “Chest” workshops.
And also, Downside Up experts share their experience in long-term planning for the development of NCO, development of project activities and principles for evaluating the effectiveness of programs implemented by the organization. Measuring results and evaluating are the necessary conditions for the development of social agents, which make it possible to improve the lives of those whom they help.
Besides experience and practical approaches, we present to your attention scientific materials on medical and psychological problems, talk about current cultural events and the creative achievements of people with Down syndrome, and help you navigate the specialized literature and current events in this area.
The electronic version of the magazine can be found now by clicking on the link: https://downsideup.org/ru/catalog/doc/zhurnal-sindrom-dauna-xxi-vek-no2-...
It is expected that a fresh issue from the printing house will be received soon and distribution to specialists will be organized.

Pages