Hello Ukraine and hello to the Ukrainian Down syndrome Organisation! You became a charity almost 10 years ago but you have been working with people with Down Syndrome for almost 20 years! Your main goal is to promote and improve the life of children and adults with Down syndrome and their family in Ukraine and at MANOA we can’t wait to hear more about you! Could you please tell us what were the main challenges people with Down Syndrome were facing in your country before the war?
Ukrainian Down syndrome Organisation: The main challenge before the war was socialization through access to preschool and school institutions, vocational education and further self-realization in the workplace. The law on inclusion in education has been adopted in Ukraine since 2017. However, one law is not enough for all the mechanisms to work on the ground
. Namely: there are not enough specialists who would have knowledge and methods of working with children with special educational needs, the state does not sufficiently stimulate the development of this direction, everything is done through the efforts of parents. There is a need to help people and specialists in this direction. After graduation, there is no general state program of assistance in the development and life of such people. Opportunities for young people with the syndrome must be created by their parents, for example, opening coffee shops where people with mental disabilities can work.
MANOA: What is the current situation of people with Down syndrome in Ukraine? What has been done to protect individuals since the beginning of the Russian aggression?
Ukrainian Down syndrome Organisation: The situation of people with Down syndrome in Ukraine is similar to the majority of people who needed social protection before the war.
This means that many do not have not only light, but also familiar things that we usually do not pay attention to: the washing machine does not work, you can not take a shower, wash the child, there is no telephone connection, the Internet, elevator does not work, it is cold in the apartments. In addition, an air alarm sounds 2-3 times a day. Imagine how difficult it is for families raising children with disabilities to live normally in such conditions.
In addition, many families have problems with earnings. Someone has lost his job, someone receives the minimum wage. Payments to people with disabilities in Ukraine have never been high. That is, it is not easy to meet your basic needs now.
Families with people with Down syndrome need more attention to health, systematic support in development, socialization and rehabilitation. A stressful situation affects parents and, accordingly, children. What we are doing now is the closure of basic needs: humanitarian aid, medicines, targeted financial assistance, psychological assistance to parents. Since the beginning of the war, our organization has helped about 1000 families. This is due to the support of European organizations.
Many families went abroad. There they are supported by local families and organizations.
Internally displaced families from Kherson, Luhansk, Donetsk and other regions found themselves in western Ukraine. There are additional needs: in the arrangement of life and the organization of children's education.
MANOA: We had a look at your website and what surprised us the most was that it is also available in English! Why did you choose to do so? Does your foundation work with others in Europe or around the world?
Ukrainian Down syndrome Organisation: The use of English as a second language (in particular, on official virtual platforms) is generally accepted in Ukraine, since English is the official language of the European Union, and Ukraine considers itself the part of Europe. We are members of the EDSA and DSI - two of the most famous associations of organizations of people with Down syndrome in the world. This allows us to attract experts from different countries to our events.
In recent years, we have been working on establishing partnerships with non-core donor organizations. In particular, in 2021, we won a grant from The BEARR Trust to strengthen our work to support young people and adults with Down syndrome.
It is important for us that our existing and potential international partners have the opportunity to learn about our activities, to see the result of their support.
MANOA: Your home page has all the basic, yet necessary, information about Down syndrome and we highly recommend our followers to have a look at it! It is visually attractive and most importantly, it defies stereotypes and promotes the full inclusion of people with Down syndrome in society. Why do you think it is important and why did you want to share that message?
Ukrainian Down syndrome Organisation: We consider information work with the audience to be very important. Every person who is looking for information about Down syndrome has the opportunity to see the most important information on our site. Readers of such information are often not only people whose lives are associated with Down syndrome. We work to inform a wide audience - anyone who has a curiosity or has "white spots" about what "Down syndrome" is - can get answers here. In addition, thanks to our colleagues, a Ukrainian-language page about Down syndrome on Wikipedia was finalized in 2020.
We believe that this is important because only understanding leads to the formation of acceptance. A society that accepts you for who you are will support and help you occupy your niche, get equal opportunities and rights.
A society that accepts you for who you are will support and help you occupy your niche, get equal opportunities and rights.
MANOA: I always say that people with Down syndrome can change your life and make you see things in a completely different way! What do you think someone with Down syndrome can teach others, either personally or even professionally?
Ukrainian Down syndrome Organisation: Often, people with Down syndrome are examples of extreme zeal. What is given to others with ease, for people with the syndrome, is the result of constant work. When you see their achievements, you should be ashamed to say that you have tried and could not, because it becomes obvious that you have not tried enough.
Professionally, first of all, we can talk about the thoroughness of the tasks. A person with the syndrome studies the algorithms of work and performs them perfectly, without deviations, does not look for ways to wave off - since this was not in the algorithm. This should command respect.
In their creative activities, they can teach a certain freedom.
In general, it sometimes comes to mind that such people come into the world to show everyone how much they already have just like that, from birth.
If you are tired of human vanity and cynicism – look in the eyes of people with Down syndrome. They love life unconditionally.
Have the courage if you want to change something. Be patient if something cannot be changed. And be wise to know when courage is needed and when patience is needed.
MANOA: In 2021 you also had workshops for potential employers and social organisations regarding the employment of people with Down syndrome. What issues are employers facing and how are you preparing young adults to the professional world?
Ukrainian Down syndrome Organisation: According to a study by the EDSA (European Down Syndrome Association), the percentage of young people with Down syndrome working in the open labor market in different European countries is quite low - up to 10-15% in several countries, on average - 3-4%. This indicates the complexity of this task. In Ukraine, there are very few working people with Down syndrome - perhaps up to two dozen will be recruited. We helped 5 young people gain a foothold in the workplace. However, little by little, new success stories appear. As a rule, thanks to the enormous efforts of parents who create mini-businesses to attract their children to the cause.
Employers who have decided to accept a person with Down syndrome into their team need help, mentoring in this matter. Because such a person requires special support during the adaptation period. And at this point a job couch (social worker) becomes a key figure in the process. This specialist establishes communication between an employee with Down syndrome and the team, helps to master the operational processes that will be included in his duties, helps to learn the schedule and orientation in the production space. The main challenge for tolerant employers is partly that they underestimate potential problems, overestimate their capabilities in matters of adaptation of the worker with Down syndrome. That is, they start in "rose-colored glasses".
We are proud of families and small parent organizations that continue to work, develop children and create new projects no matter what.
The task of job couch is to enlighten the team on how to properly build relationships with such an employee. The main thing is to avoid making unmotivated preferences like it is still a person with a disability. From the start it is better to agree on important things - a shortened work schedule, breaks every hour, a mentor within the team. It is important in a calm but persistent manner demand the performance of work duties. After all, a person came to work, and not to a circle. And any systematic excessive laxing is an emphasis on the fact that something is wrong with this person. That is, understanding the situation, getting into a position and letting yourself sit on your neck is not the same thing.
Young people with Down syndrome, before going to work, undergo some training in the development of communication skills, management of the emotional-volitional sphere, diagnosis for motivation in relation to work. The key figure is the same job couch. The main task at this stage is to form a system of rules of conduct in the head of a candidate for employment in the workforce. Subordination in the "boss-subordinate" system, appropriate appearance, emotion management and acceptable dose of interpersonal contacts with colleagues. That's what the basic training is all about. The fact that a young person is able to perform certain operations that will form the basis of his functional duties - is the base that should be laid in pre-professional training at school or at home. We don't teach that. Possession of these skills and self-service skills, and the absence of obstacles to health are prerequisites for employment. Although so far there are a little amount of young people with Down syndrome who work in supermarkets, coffee shops, they fulfill a very important social mission. People see them, learn to accept them, and in the future, an employer who is not tolerant today will consider the emergence of a new employee in his team – an employee with Down syndrome.
War destroys. Everything we create at any moment can be destroyed.
MANOA: If you had to list three things that people should keep in mind to be involved in attracting people with Down syndrome, what words would that be?
Ukrainian Down syndrome Organisation:
1. People with Down syndrome are very gullible. This is their most vulnerable point. Teach them what is possible to protect unkind people from bad intentions.
2. They experience resentment and betrayal very hard. It can break their hearts. It takes longer for people with Down syndrome to move on.
3. It is vital to teach the rules so that behavior in different life situations is appropriate - working relationships, subordination, acquaintances / friends / family. Understanding one's own and others' boundaries is very important for successful socialization.
MANOA: How is the war affecting all your projects and what can be done to help you move forward and leave nobody behind?
Ukrainian Down syndrome Organisation: War destroys. Everything we create at any moment can be destroyed. The worst thing is the death. The death of little Lisa in Vinnitsa is an example of this. What's the point of doing something - if there's no one for whom it is done? We are proud of families and small parent organizations that continue to work, develop children and create new projects no matter what.
Unfortunately, we cannot stop this war on our own. We believe in the Armed Forces of Ukraine and do for our beneficiaries what is in our power. We are working on creating projects to support new families who have recently learned about their child's diagnosis, advocating for the rights of people with the syndrome (the right to inclusive education, simplifying the procedure for obtaining disability before and after 18 years), and are also working to scale up efforts to support families throughout Ukraine. To do this, we are developing cooperation with smaller regional parent organizations - they often need additional information support, trainings in the intricacies of the work of public sector organizations, etc.
Funding has always been important for our activities - as we have a full-time team of professional managers who support their families. Previously, we held various promotions and financial meetings with the involvement of business partners. Now this has all become impossible. Partnership support decreased by 95%, and it is dangerous to hold promotions. Therefore, in order to support statutory activities, we are looking for donors abroad or writing grant projects. So far, we cannot say that all the financial needs of the Organization are met. Our team still does not have full funding for all planned activities and remuneration of colleagues and contractors.
MANOA: Last but not least, we saw on your website that each member of your team has published a motto. What would you say to everyone reading this interview?
Ukrainian Down syndrome Organisation: Have the courage if you want to change something. Be patient if something cannot be changed. And be wise to know when courage is needed and when patience is needed.
Uniting around the goal and supporting each other can influence conditions and change reality.
It is not enough to hope that someone else will come and do everything for you (for example, the state). Government is us and our actions. This is proved by Ukrainians who do everything in their power to fight the enemy. The military - on the front line, volunteers - support the state and promptly provide the military with the necessary consumables, and the state apparatus, which provides the military with weapons, high-tech equipment and receives support from other states.
And we, as representatives of the community sector, must also work for change.
MANOA: Thank you so much for the interview, for your time and for all the hard work you are doing for a better inclusion of people with Down syndrome! Please stay safe and we hope to hear from you very soon! Slava Ukraini!
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