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Down Syndrome Ukrainian National Charity
Ivanna Vikhtynska
Member of the Board
Down Syndrome Ukrainian National Charity was founded in October 2003 on the initiative of parents with children affected by chromosomal diseases, teachers-defectologists, psychologists, geneticists, who deal with these problems.
The purpose of the organization activities is to develop and implement programs, aimed at encouraging development of the affected children’s abilities and social skills in order to integrate them into society as full citizens of Ukraine with equal rights.
According to the data of the Ukrainian Ministry of Health Medical Statistics, during 2002 there were born 331 children with Down syndrome in Ukraine, and during 2003 – 336 children (29 and 21 children in Kyiv respectively).
Such children need special attention, treatment, and education, special approach and help. Their parents are facing the problem - What is to be done? What to begin with? Who to ask for help? Thus, Down Syndrome Ukrainian National Charity was created to solve all these problems.
From the very onset, our organization offers consultations to parents with children, affected by chromosomal diseases (consultations by geneticist, psychologist, defectologist, social worker, and legal expert). Here you can get information about foreign centers, state and public organizations, that help families having children with abnormal psychophysiological development. You will have an opportunity to meet other families, which will share their experiences with you and support you. It is hard to deal face to face with the problem occurred. Using experience of other families, you will save your time and efforts, getting appropriate consultations, medical organizations’ and specialists’ addresses, and helpful pieces of advice concerning child upbringing and care. Please, contact us, and we will be glad to meet you, discuss your problems, admit you to our organization, offer our help, and give the needed information concerning our organization activities.
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Nowadays, the organization unites 50 families from Kyiv and 30 families from other regions of Ukraine. It is, however, a small part of target group, interests of which we represent. One of the basic tactical schemes of our organization now is to unite members, who want and can help their children. No doubt, each of us does a lot for his or her child individually: medical help, individual home correction work and lessons lead by specialists, organization of medical and health-improving recreation. This is a very important and hard work. But we should understand that some problems occur at certain stage of our children’s development. And it is often hard to solve them by ourselves. If we don’t want to solve the problems together, in civilized way, gradually changing people’s attitude, we will find ourselves behind the invisible wall, out of society. And that would be mainly our fault, because we didn’t want to and couldn’t. The organization invites specialists, who work in this area, state Ukrainian authorities, public organizations, foreign community, and parents of children with chromosomal abnormalities to cooperation in order to widen a circle of people not indifferent to this problem. Just parents are the motivating forces, initiators and executors of the measures aimed at improvement of their children’s different aspects of life. For one, two, even ten of us it is difficult at first to solve numerous problems: lobbying people with special needs interests through the state authorities, development and implementation of projects concerning rehabilitation and educational help to children, their integration into general education environment, kindergartens etc. This is a good chance to show yourself as a manager of strategical and tactical questions solution. Your talents will again serve your children!
Parents of children with chromosomal pathology are often recommended to leave their children for state support, claiming that they aren’t able to social adaptation and education, but that is not true. Thus, children lose chance not only to develop skills granted by nature but also to live. At the same time, practical domestic and foreign experience shows, that the children develop better in the family circle. They can acquire many skills, growing up in the circle of healthy coevals.
There are a lot of sportsmen among our children: participants of international sporting events, actors. They play different musical instruments, sing in chorus not only in Ukrainian and Russian but also in foreign languages. Our children can read, write, draw etc. They also like those people, who treat them kindly and sincerely. They aren’t able to offend people: they don’t have a gene of malice. Future trends of child social adaptation and rehabilitation are the most important issue of the first meetings with parents. The meetings are aimed at purposeful, directed to success work with the children. We will show you how much your child can do!
How the year of 2004 passed
- We established contacts with state organizations, which we have to work with as a juridical person.
- We also tried to establish contacts with international organizations and Kyiv public organizations, which are occupied with the problems of disabled children and reforming social sphere system.
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During the year of 2004, we have:
- prepared for printing, published, and distributed leaflets, booklets, application forms, questionnaires;
- translated the above-mentioned information materials into English and sent to foreign organizations;
- prepared and sent almost 150 letters to state and public organizations, sponsors, and profit-making organization with our appeal to help;
- helped in examining and consulting by defectologist, neuropathologist, and psychiatrist – 10 children, geneticist – 6 children, endocrinologist – 2; we have given legal assistance to 5 families from different cities of Ukraine.
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In order to support the “Down Syndrome” Organization existence, the managerial staff of the organization succeeded in receiving help from:
- Verhovna Rada deputy Y.M. Orobets for computer and office equipment purchasing (there was given 10,800.00 UAH from the city budget);
- legal expert V. Babenko and his team, who have given free services in registration of our organization and related paper work;
- Z.I. Matvienko, key specialist in publishing of the European University – free booklet and leaflet publishing;
- N.V. Zverkova, notary, who prepared for free all papers for account establishing in the the Treasury Office (pack of documents in the amount of 22 was attested);
- We received sponsor help from Kyiv businessmen and other private people who donated 1,150.00 UAH in order to cover current transaction costs.
- During 2004 there was developed a project “Upbringing of children with Down syndrome under conditions of the integrated environment” in order to implement it in the “Montessori Kindergarten” (Darnytsky district). The project is not implemented at present because the school is overfull, but our organization presented to the Kyiv City Educational Department the official initiative to implement the project in Kyiv. The results of the work done include the project materials, annotations in English, and useful contacts with the City and Darnytsky District Educational Departments, Infant Schools authorities, the Ukrainian Fund “Step By Step”. The work with the project is determined to be one of the “Down Syndrome” Organization tasks for the year 2005.
Members of the Down Syndrome Ukrainian
National Charity at work
On November 20, 2004 there was hold the General Meeting of the “Down Syndrome” Organization members. The results of the year 2004 were summed up (see above), and the plans on 2005 were developed. Thus, in order to support the organization functioning, there was decided to create functional groups, which would be formed of the organization members for work in certain area. They are the following:
- Representative Group - contacts with government bodies, international and domestic donors, and different organizations, which “Down Syndrome” Organization need to collaborate with.
- Secretariat - administration of the organization’s documents circulation (documents’ preparation, their registration and keeping), business contacts with outer partners on behalf of the organization’s chiefs.
- Internal Informers - fulfillment of the commissions, concerning spreading of the information between the organization’s members (calls, material spreading, messenger commissions).
- External informers - consultations for people, who apply to our organization for the first time.
- Project Development Creative Group - development of projects according to established by donors application forms, which cover the main program goals of the organization.
- Legal Group - clarification of different legal issues, concerning the organization’s activities, and giving legal consultations to its members.
- Fund-Raising Group - searching for funding sources and information about different grants, projects; information processing and analysis; contacts with donors.
- Economic Group (reserve) - different economic tasks fulfillment (e.g. delivery of the products given for the organization).
- Educational Group - international experience introduction, creation of an internal model during receiving education with the help of existent educational institutions.
Which group would you like to join? Point it in your application form for the organization joining.
Priority activities in the year 2005:
- Practical realization of the project “Children with Down syndrome upbringing under conditions of the integrated environment” in Kyiv.
- Appeal to specific ministries of the Ukrainian Government with the purpose of human and children rights observance in the area of education, health care and social adaptation of people with chromosomal abnormalities.
- Establishment of the effective collaboration with Russian partners – “Downside-Up” organization and Russian Association “Down Syndrome” in order to interchange methodical materials, literature, pedagogical experience, and create common informational space for similar organizations in the countries of the former Soviet Union. Neonila Tkachenko was appointed the leader of this direction.
- Implementation of the project on preparation and replication of the methodical and informational materials for families with Down syndrome children (material searching and editing, funding sources searching).
- Realization of the complex program of early help to children with chromosomal abnormalities in the form of two projects (multifunctional groups of specialists for consultations at home and creation of the resource basis for education).
- Opening of the organization representative offices in Kyiv and other regions of Ukraine.
- Collaboration with the Ukrainian Ministry of Health within the Program of Further Improvement of Medical Genetic Services to Citizens of Ukraine in 2004-2008.
- Lobbying of the “Down Syndrome” Organization inclusion into the system of state municipal and national funding of social programs.
- Finding of the available permanent channels of spreading information about the organization for the purpose of new members attracting.
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- We have no minimal stabilized funding to pay the organization operational costs (accountant salary, notarial services, printing services etc.). The costs are obligatory for a juridical person. Occasional sponsorship and volunteer public donations save the situation so far. But instability of such resources does not allow to fill confidence in the future.
- We have no constant office, which we could use at least for meetings (in future – for Children Care Center).
We appeal to everybody, who can contribute to support the “Down Syndrome” Organization activities: business corporations, private individuals. Please, help us!
Down Syndrome Ukrainian National Charity
04208, Radyanska Ukraina Pr., 7, 135, Kyiv, Ukraine.
Ph.: (+38) 044-433-36-39 - Hanna Gubar (President, teacher-defectologist)
(+38) 044-572-75-54 - Ivanna Vikhtynska (e-mail – ivikhtinskaya@blitz.kiev.ua)
(+38) 044-412-79-88 - Oksana Lenkova (e-mail - oksalen@ukr.net)
Account information:
Account #26000303016001
in Commercial Joint-Stock Bank “Tas-Komertsbank”,
MFO 300164, Identification Code 26437941.
The power of our organization lies in the unity of parents, who have big will to guarantee their children bright future, not stopping before any barriers; and they will go towards their aim hard. Big wish and persistence break unassailable walls!
We appeal to everybody not indifferent, to join our work and help those who need help. Together we can change our children’s life for the better!
Reviewed by: Serhiy Lapchenko
