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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

Maria Bystrova took part in the project "Russian Woman"

Maria Bystrova, an actress with an additional chromosome, took part in the project of the singer Manizhi "Russian Woman" @manizha_russianwoman

Eurovision participant Manizha launched an instagram project, offering to tell who a Russian woman is. The project is named the same as her song, with which she represented Russia at a well-known European competition.

Maria Bystrova formulated her definition as follows: "A Russian woman is the most beautiful and fearless, capable of achieving any set goals!"

Maria appeared in the final of Manizha's performance at Eurovision on the screen in the company of Nyuta Federmesser, Chulpan Khamatova, Katerina Gordeeva and many other Russian women who sang the song "Russian Woman".

“The largest country in the world cannot be homogeneous. We are all different in Russia. And this is the power if you accept and use these differences for the good” - writes the singer about the project on her Instagram page.

Everything is like in business

Downside Up Charitable Foundation has survived two crises in twenty-two years and has helped ten thousand three hundred families with teenagers and young people with Down syndrome. The director manages the Downside Up Charitable Foundation as a company. Maybe that's why the organization survived all the crises?
- Sometimes it is believed that non-profit foundations and organizations exist according to their own laws. And in general: "Hey, they have grants!" - says Anna Portugalova, director of Downside Up CF. She quickly found time to communicate with the journalist - she extended the schedule.
- Of course, NPO have powerful specifics. We always think about the social results we are producing. The rest is based on business logic: clear goal setting, clear plan and constant analysis.
FROM THE STOCK TO THE FUND
By the beginning of the 2000, Anna, a stock market specialist, was tired of traders and stocks. She devoted six years to the capital world. On the seventh, I saw an ad: a charitable foundation was looking for a financial director. Anna knew little about Down syndrome, but her old job was boring to the point of gnashing teeth, and here people with burning eyes. Since then, together with the foundation, she has been going through every difficult period. For the first time, the skills of a crisis manager were needed in 2009.
- Before that crisis, every year we watched more and more families turn to us for help. In 2008 there were one thousand ninety, the next year - already one and a half times more. We conducted group and individual classes, went online, provided psychological, pedagogical, social support - and everything is absolutely free. We have our own building. We hired new teachers. There were about forty people in the staff - they were going to expand directions. And then the crisis has come. Our budget dropped by twenty percent at once.
On the eve of the perfect storm, Downside Up hosts a sacred ceremony. The strategic core of the fund (people who make decisions) are closed in the office and think. What has already changed in the world and what will change soon? This is the first thing. Second: what is important to preserve and what can be discarded for now? If they argue about what to put on the back burner, then they always retain the team, competencies.
- The topic of supporting people with Down syndrome is still underdeveloped in our country, -explains Anna. - And twelve years ago it was unrealistic to find qualified personnel. For example, only a specialist who has worked in the foundation for at least five years will be able to advise on the Downside Up forum. - There will be no these people - there will be no support for families with special children. Therefore, in order not to lay off employees, we have mothballed expenses and slowed down the expansion of in-person services, - says Anna in a calm voice of a financier who temporarily defeated a quivering benefactor. - Then we thought: what will we offer in return? The question hung in the air: how to support more families and spend less money? Face-to-face classes are expensive and are designed for small groups. Educators began to develop an Internet forum for remote assistance. It worked like this: one topic - one family. Private problems were discussed on the network, where there were no delicate nuances. The recommendations of the experts were in the public domain. Families read them, plus colleagues from other NPO learned from Downside Up. Selected topics have received thousands of views. This confirmed that the foundation has stepped right into the Internet. Early departure to virtual is bearing fruit so far. In self-isolation, its "yield" has grown even more: Downside Up has completely switched to online. Various remote formats have appeared: parents with children with Down syndrome perform tasks at home, record the process on video and send them to a curator. Fund employees are in touch with families in Whatsapp and Zoom every day - the crisis is coming, the process does not stop.
A SEARCH IS UNDERWAY
In business, they say: crisis is a time of opportunity. In the sense that the weak leave the market, and those who do not give up and find their bearings in the new situation, live and prosper. Since 2009, Downside Up has been engaged in what businessmen call diversification of funding sources, and the foundation has been looking for new donors. We decided to develop private fundraising. Previously, it was approached in so far as. - Our topic is not clear to society, - says Anna. - It is difficult to compare it with acute targeted assistance. The child needs surgery. We need to raise funds, otherwise he will die, and if I give money, he will survive. In the case of Down syndrome, it is not easy even to explain why you should help at all. It's not a disease, it's for life. Downside Up has been looking for major corporate donors for a long time. Finding a common language with several companies is easier than with a thousand people. But companies also have difficult times during a crisis. They cut expenses through charity.
In 2009, the question of private donors came to the fore. We searched for them on different sites, among different audiences. We carried out a joint campaign with Sberbank and covered its clients. We opened a blog in the then popular “LiveJournal” - caught the eye of the network community. We attracted public people, with them - their fans. Downside Up used every opportunity to flash and draw attention to their topic. As a result, the flow of funds increased even amid the crisis. The NPO is going this way in 2020 as well.
- Even symbolic amounts in significant amounts are a more reliable support than a corporate donor. When you count on a large donation, and the company gets into a crisis and can't give anything, you suddenly lose everything at once, - explains Anna. Investors and businessmen in such cases say: "Don't put your eggs in one basket".
DO NOT SILENCE
According to Anna Portugalova, the main skill of a director of a charitable organization is communicative, the ability to negotiate and persuade. During a crisis, you will have to talk a lot and immediately with everyone: donors, employees, parents and society. The sooner the interaction starts, the better. Then everyone is paralyzed by the fear of what is happening. - When the situation is just developing, I quickly call and write to the trustees of the fund and large long-term donors: “We are, we continue and need help more than ever. If not with money, how else can you support us?”. Now it is difficult to attract new benefactors. You go to warm, close partners. They are loyal, already yours.
And how can you prove to donors that the fund's relevance during the crisis is growing? In 2009, the director of Downside Up turned to her parents for arguments. The most initiative created an asset that communicated with the media, talked about the fund, and participated in fundraising events. Donors saw the faces of the people they help live. Downside Up has found a new voice - the beneficiary.
Eleven years later, this tool has not become obsolete. Now the management has convinced teachers to join fundraising. They collect feedback from families with whom they communicate online, asking to remove the video thank you. Materials confirming the need for the fund are distributed through social networks, a website, mailing lists.
“In a crisis, it is necessary to powerfully tell people what the foundation continues to do, how it reacts to changes and what it needs”, Anna convinces. And again, like in business: advertise yourself, when others have their ears flattened, go in the opposite direction - and people will reach out to you.
TOGETHER
- Twelve years ago it was tight, a strong decline was in donations. Two thousand twelve and thirteen were also difficult years. Two thousand fifteen was not easy for us. For the last few years, too, when you listen to Anna Portugalova, you get the feeling that Downside Up Charitable Foundation is not getting out of crises. On the other hand, it has existed for twenty-two years, has helped ten thousand families and has overcome everything.
- I learned how to build management processes and activities, relationships in a team, manage finances in the stock market, - says Anna. - If we compare NPO with business, we win: people with non-commercial motivation come to us. We make sure that everyone who is on the team is burning with the mission. We help families and children with Down syndrome.
In crises, people unite around this goal. Non-working days have been announced now. Any employee has the right to say: "I cannot work, and you are paying me a salary". But in our team, no one did that. I just turned to everyone: “Friends, this is the situation. As you know, it is harder for families than for us. They still need our help. I continue to work and I urge you. And yes, we will face tough times, but we hope we will survive. We will fight for this".
Source: “Magazine for specialists in the field of family arrangement and prevention of social orphanhood " № 2 (10) June 2020
Authors: Anna Guryanova, editor, journalist \ Elena Maksimova, journalist

Downside Up working hours and how to make an appointment with us

Dear parents!
Our specialists are ready to provide you remote support, regardless of where you live!
Contact us - the free fund number is 8 (800) 550-54-97 (from 10 to 18 Moscow time on weekdays) or write to us at info@downsideup.org, we will give feedback definitely .
From May 1 to May 5 and from May 9 to 11, 2020, the fund has days off.
From May 6 to 8, Downside Up works on a regular schedule. These days we will hold consultations.
If you have questions about how:
- Organize daily activity of a child / teenager / adult with Down syndrome
- Organize classes at home;
- Build communication and interaction with a child / teenager / adult
- Help a child / teenager / adult regulate behavior
- Help the child / teenager / adult to be independent
- Get psychological support
- Any other requests
We will be happy to support you and your family members!
Services are provided to families free of charge.

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!

Downside Up took 14th place in Russia's first charity fund rating

The RAEX rating agency (RAEX-Analytics) together with the Association of Rating Compilers (ARC) prepared a pilot rating of charitable non-profit organizations (NPO). The rating characterizes the level of partnership potential of charitable organizations: their financial, organizational, methodological, media opportunities, as well as their authority regarding other comparable organizations.
The rating included 293 NPOs, the total amount of receipts in which in 2018 amounted to 44.8 billion rubles (the rating of fundraising charitable NPOs was 213 NPOs and 19.2 billion rubles, the rating of corporate and private charitable NPOs was 80 NPOs and 25.6 billion rubles respectively). According to RAEX, this is about 90% of total donations to organized charity in Russia.
“The rating may become one of the factors contributing to the development of this sector, which is extremely important for Russian society,” comments Dmitry Grishankov, CEO of RAEX. - This is the most convenient positioning tool for leading charities. It will also help make rational decisions for both donors and potential partners of a charitable NPO. Finally, it will contribute to increasing the transparency of the sector and solving the problem of “toxic” charity. ”
The rating included Russian NPOs, the proceeds of which in 2018 exceeded 10 million rubles, carrying out charitable activities in one or more of the following areas:
- charity medical care;
- support and adaptation of socially vulnerable groups of citizens;
- education and science;
- ecology and animal protection;
- sport;
- art and culture.
Due to the specifics of the activities, the rating did not include funds, NPOs associated with religious organizations and law enforcement agencies, local community foundations, and organizations that position themselves as structural units of international charitable foundations and use their public names. Also, the rating did not include charitable foundations created exclusively to finance individual projects or programs.
The rating was based on three groups of indicators: the scale of the activities of NPO, information transparency of the activities of NPO, public recognition and activity of NPO in the media and social networks.
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Time to present oranges: online promotion for the world day of the person with down syndrome

We at “Love Syndrome” Fund love oranges and good traditions very much. Our fund’s annual good tradition is to plant an orange grove by March 21, World Day for Down Syndrome.
Taking part in an online charity action # wevethoughtoforange is very simple:
1. Select the green orange with the desired donation amount and click on it.
2. Fill in the fields on the payment page.
3. After payment, your chosen orange will turn orange, and you will help children with Down syndrome and their families.
4. You can make more than one gift - there are enough oranges for everyone!

New Year 2020 in Downside Up

Bright Christmas costumes, a tree that was magically lit every day of the festive week, fairy performances, New Year's tea parties, round dances, gifts presented by Ded Moroz and Snegurochka. New Year's holidays at Downside Up Fund are for all participants of the fund's programs: from toddlers attending adaptation groups, older children from supportive education and school preparation groups, and children who come to us for occupational classes passed all week.
New Year is a family holiday, so mothers, fathers, grandparents, brothers and sisters also took an active part in all the activities of the fund: together with their children they worried about the characters in the performances, helped to go round dances, called Ded Moroz, New Year's costumes deserve special attention, which they prepared for the holiday.
Artists of the theater "Miracles under the umbrella" presented to young spectators the first tale. Their puppet show about a trip to the North Pole with a bear cub Umka and his friends is an interactive story, in which children became full participants. During the performance they were covered by a snowstorm, they saved a frozen bird, warming it with their breath, and together with puppet friends they decorated the Christmas tree.
Vladimir Fateev, actor of the “Miracles under the Umbrella” theater: - This is not the first year that we have been visiting Downside Up with our performances, because this is the most grateful audience, the kindest, and most wonderful. The guys, of course, are great fellows, they amazingly joined the play, it is simply amazing how sincerely they perceive everything that happens on the stage: they respond to our heroes, talk to them, rejoice at their successes, or are upset when they have trouble.
Lyubov Rumyantseva, actor of the “Miracles under an umbrella” theater: - The most favorite moment in the performance for us is the gratitude of the audience when they thank and hug not us, but our puppet heroes - it's great. So, we were able to help them believe in a miracle, the main artists for them are our puppet characters.
The real winter detective story was prepared for children by Downside Up teachers. Teachers are the most sensitive actors, they tried to arrange a bright and emotional show for their viewers. They helped the children look for the nose lost by the snowman in the forest. The search was accompanied by hide and seek under a multi-colored tent, a game of soft snowballs, dancing, spell “The Christmas Tree Burn!” and meeting with Ded Moroz. The New Year story for the children who will go to school next year was no less exciting.
One of the favorite components of all the matinees of the fund is a photo session with the main magician of the holiday. Understanding what children like best: talking with Ded Moroz, hugging him or receiving a gift from his hands is not easy.
For the first time this year, young members of the theater workshop of the fund, employees of the two Funds “Love Syndrome” and Downside Up and their friends performed on the same stage. New Year's skit was more like a big gala concert. The musical group “Russian Souvenir” from boarding school No. 31 opened it. Musical numbers prepared by the participants of the theater studio were replaced by poetic, dance and stage. A separate place in the concert was taken by a joint theatrical performance. The performance, based on the fairy tale “The Snow Queen”, in which the main roles were played by teenagers-studio theater workers and fund employees, was accompanied by ovation and was really liked by all the guests of the holiday. Rehearsals lasted a month, costumes, decorations - the work of a large and friendly team.
This year's New Year's theatrical skit took place on the stage of the Russian State Social University (RSSU). University staff are good friends, partners and colleagues of Downside Up and fund “Love Syndrome ”, helping to make the lives of people with Down syndrome better.
Anna Portugalova, director of the Downside Up Fund: - I want to say a big thank you to the Russian State Social University. We are doing so much good and wonderful together with the Russian State Social University. In particular, this year, colleagues made a huge contribution to the first large-scale football competitions for teams with people with Down syndrome. Now the RSSU has a training program for trainers and we wrote a book together. The university helps us all the time, we are very glad for such a fruitful cooperation.
Oksana Savkina, Deputy Head of the Organization and Admission Office of the Russian State Social University: - I watched your holiday. It is very cool, you are so happy and very talented. I would like to wish you a Happy New Year and wish you new success! We are always glad to see you.
Also, Oksana Savkina presented a kind of New Year's gift to the audience and participants - she invited the children and their parents to meet with the dean of the university, where they will talk in detail about the professions that can be obtained at the university, as well as get to know potential employers.
At the end of the holiday week, a New Year's party was held for teenagers attending daytime groups, during which the guys not only received gifts, but also created their own, played New Year's games and danced to the disco from the heart.
A busy holiday week charged everyone with a good mood and faith in miracles for the next year.
The Charitable Fund Downside Up and “Love Syndrome” Fund express special gratitude for the gifts given to the companies: Amway, Mattel, Talos Construction LLC, “Iceberry TD” company for a sweet treat to all participants of the New Year trees, Qiwi Company for a perfectly organized holiday for children and their parents and Orica CIS for creating a New Year’s atmosphere in the fund.

DOWNSIDE UP HAS BECOME FINALIST OF RUNET AWARD IN THE NOMINATION “FACEBOOK COMMUNITY”

On December 12, 2019 a festive ceremony of XVI National award prize distribution for contribution to the development of Russian segment of Internet “Runet Award” took place in the Pashkov’s House on Vozdvizhenka street. Downside Up was competing in nomination “Facebook community of the year” and became one of top-10 internet projects. Downside Up took the 2nd place by the results of experts’ council vote.
“Runet Award” is the most important award in Internet in Russia. It is a national award in the area of high technologies and Internet which is conferred to the leading companies for their prominent merits.

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