Cheryl Warner
Both Ukraine and Russia have made great strides in recent years in educating and caring for children born with Down Syndrome. The Soviet practice of hiding people with disabilities, who were kept in institutions and not seen in society, is changing. Before, people with Down Syndrome were not considered educable and were therefore unable to reach their full potential.
Choosing Not to Institutionalize
In August 2003, Andrei and Arenda Vasylenko’s second child, Peter, was born with Down Syndrome at a state clinic in Kyiv. His parents were urged to relinquish him to an institution that would care for him, rather than take him home. That has been standard practice in a country where little practical help was available for parents wishing to raise children with Down Syndrome at home. Despite opposition, the Vasylenkos did take Peter home, who now is one of their four children, ages 2 to 13. Arenda is from the Netherlands and is trained as an occupational therapist, and Andrei is the Ukrainian manager of a Dutch company.
The Ukrainian Down Syndrome Organization
Active Christians, the Vasylenkos’ faith has played a vital role in their efforts to help families bring home children who have the same condition as Peter and to provide them with special education. They have joined with other parents in founding the Ukrainian Down Syndrome Organization (UDSO), an affiliate of the European Down Syndrome Association. UDSO operates an Early Development Center that provides professional consulting and educational assistance to children with Down Syndrome from birth to age 8. Many member families are Christians. The mission of the UDSO is to improve the quality of life and to create a new future for people with Down Syndrome in Ukraine. Under the leadership of President Sergei Kurianov, the organization provides information, advice, and early intervention services to families throughout Ukraine. It also campaigns to improve public awareness of the condition.
The Early Development Center “Down Syndrome” opened in November 2010, funded by charitable donations from private individuals and legal entities. A team including intervention specialists, speech therapists, and psychologists staff many programs, including comprehensive diagnostics, group support for families of children from birth to 12 months, specialized groups for children to age 8, private lessons and consultations, psychological informational support for families, and a parents’ club. Services are provided free of charge. (See the organization’s website at http://downsyndrome.org.ua/en/.) Research shows early intervention is critical. “As soon as a child with Down Syndrome is born, a group of parents goes within 24 hours to visit the new parents,” Arenda Vasylenko said. “When our child was born one or two of ten [Down Syndrome infants]were taken home. Now just one or two are not taken home.” Down Syndrome is a common genetic condition affecting approximately one in 700 infants worldwide, regardless of ethnicity or socioeconomic factors. In Ukraine, over 420 babies are born with Down Syndrome each year, and an estimated 15,000 people live with the condition in Ukraine.
Prespectiva 21/3
The Vasylenkos now head a special project for UDSO called Perspectiva 21/3, named for the condition in which a person is born with three copies of chromosome 21 instead of two. Perspectiva 21/3 targets three important areas: education, job coaching, and independent living. Operating from a Christian framework, the project also aims to provide perspective on eternal life. “By providing an education based on biblical principles, a unique way is opened for being salt and light and in this way to fulfill Jesus’ words in Matthew 25:40: ‘Whatever you did for one of the least of these brothers and sisters of mine, you did for me,’” the website explains. The Perspectiva 21/3 coordinator and teachers are Christians, and Bible lessons and prayer are integrated into the program. A July 2010 law in Ukraine stipulates that all special needs children have the right to an appropriate education. However, the educational system was not prepared to teach these children. This is where the UDSO and its Perspectiva 21/3 Project are helping.
A Special Needs Educational Experiment
Arenda Vasylenko describes the project as an educational experiment designed to produce methods and materials that are highly practical and useful in helping children with Down Syndrome learn and reach their potential. The Kyiv Pedagogical Institute “Hrenchenko” and the National Academic Institute on Special Pedagogies approved the inclusion of Down Syndrome children in classes with mild mentally disabled children as an official experiment, in fact the first such experiment in Ukraine. The first five-year stage, begun in 2010, called for Western educational programs and methods to be adapted and used in this special class, with applications for future use throughout Ukraine.
Stage One: Classroom Education
“Our idea was to have only three classes from which to do these experiments, 10 children with Downs plus children with other mild handicaps,” Vasylenko said. “The teachers all have regular pedagogical diplomas and also special education.” They received further training in the Netherlands. The classroom experiments were designed to adapt the existing program for special needs children to the real abilities of the children. “In the fifth and sixth class there were children who couldn’t even read any letter,” Vasylenko said. She wanted to create a program that would really work.
Vasylenko brought in a methodologist who had previously worked with the Dutch and had taught in Christian schools in Ukraine. “For us it was very clear that God gave him to us for this project,” Vasylenko said. “He is completely remodeling the program based on observations of the children. Programs that are written behind a desk don’t work.” For the first time different levels of instruction were introduced. Every child’s development is recorded and a track is planned for each child to be able to progress. The team writes and prints books that are used in the program.
The team uses an internationally recognized course from the European Association for Behavior Analysis (EABA), focusing on observation of behavior. Team building and how to grow personally, which are not taught in Ukrainian universities, are also emphasized. “Our vision is that if you want to have good results with the children you have to have a strong team. We are aware that we have quite a high standard, and we maintain this standard.” The team of 11 includes teachers, a speech therapist, and a psychologist. The project organizes seminars and workshops for team members from their school and for interested teachers from other schools.
According to Vasylenko the first year was difficult, while the program was still developing and trust was being built between the Perspectiva 21/3 staff and the schools. But support for the program has grown. Now the schools “are behind us and really lobbying for us in the ministry [of education] if it is needed,” she said. The first five years of the experiment are nearly complete. The team is writing a book about what was accomplished in the first five years, showing scientific evidence that the program works when certain criteria are in place.
A Growing Movement
In other places in Ukraine parents have started similar classes. In 2012 the Perspectiva 21/3 Project organized a conference, with 160 specialists attending from all over Ukraine. The team shared its results to that point. It was sponsored by the “MATRA Project,” a charity program of the Dutch Ministry of Foreign Affairs. Representatives from the Kyiv city government, the National Scientific Institute on Special Pedagogues, and Hrenchenko University shared their positive impressions and the need for the project. “Other classes in Kyiv are using our materials,” Vasylenko said. Teachers who attended the conferences are using them with their students. Students from university classes sometimes come to observe in the classroom.
Parental Involvement
Close cooperation with parents is necessary for the success of the program, and the project regularly organizes seminars and round table meetings with parents. Themes such as future dreams and reality, learning possibilities, and behavioral topics are discussed. Perspectiva 21/3 is grateful for the support of Dutch special education schools. Also, exchange programs allowing Ukrainians to visit Dutch schools have been of great value in understanding how best to proceed.
Oksana is one young person the project has helped. In addition to Down Syndrome, “she had a whole bouquet of diagnoses,” Vasylenko said. “From a medical point of view she would never be able to speak because of the malformation of her mouth. But her parents were very positive people and open to advice. With speech therapy, this girl is reading and speaking--a very happy child. In the beginning her behavior was a problem. For me she is one of the best examples [of what can be achieved] if you do it systematically and with parents.” Oksana came to the program at age 8, and now at age 11 she is near the top of the class. In the beginning her parents had a hard time accepting Oksana’s condition, but now they understand that it is not something that can be taken away. “That is also what I like in this project,” Vasylenko said, “that we help parents in their expectations. You have to live with it. We see that parents are also changing their minds.”
Stage Two: Job Preparation
The second stage of the project, targeting the development of special skills for job preparation, began in September 2015. Classrooms have been renovated and equipped, and the program has adapted Dutch ideas to Ukrainian reality, Vasylenko said. The vision is to take children outside the school to obtain specialized education for such jobs as hotel cleaning, laundry, kitchen staff, waiter, hostess, light office jobs, etc. The project is building a network of interested companies which are willing to hire graduates of the Perspectiva 21/3 Project. “We want to create a working place where they can have practical skills where they can live with supervision,” she said. Andrei, Arenda’s husband, as a Ukrainian businessman managing a Dutch company in Ukraine, is well positioned to help develop this aspect of the project. He is considering a bakery or lunch room or a hostel where people with special needs can work in the future, making that a pilot model for Ukraine.
Support from Charitable Contributions
Shortly before Peter was born, Andrei was negotiating a job contract with a Dutch start-up company. “He wanted to show how you can work honestly,” Arenda said. The stipulation was made that when the company became profitable, a certain percentage would be donated to charity. “They fixed it in the contract,” she said. “They thought maybe in 10 years it would be profitable. But in the second year the company became profitable, and two weeks after he signed the contract, our son was born. Then we understood why it was.” This company supports the salaries for the ten staff employed by the Perspectiva 21/3 Project, and Arenda volunteers as the project manager. “The company also supports another group, providing specialists for handicapped, speech therapy, etc.,” she said. “They pay, for example, for plane tickets for people to go abroad to study. You can see that you can practically support families and children. There have been several moments in this project where we have clearly seen that this is really God’s way for Ukraine.”
The Kyiv Lions Club and a former ambassador also supported a project for the classroom. In addition, the Radisson Hotel has provided assistance, with a chef coming to the school to teach special needs children. The students also take excursions. “We see God provides what you need in your situation,” Arenda said. To raise public awareness, the project invited the Jostiband Orchestra, a Dutch orchestra composed of people with mental disabilities, to play in Kyiv. It was organized in cooperation with the Embassy of the Netherlands and created a lot of media attention in Ukraine, Vasylenko said. Two large concerts were given—one for diplomats and Dutch business interests with the Kyiv Philharmonic, and a second concert for 2,000 people in the October Palace of Ukraine, which was broadcast on Ukrainian television.
Downside Up
In Moscow, since 1997 the charity fund, Downside Up, has been “a leader in the field of early psychopedagogical and social assistance for children with Down Syndrome and their families in Russia,” its website says (https://downsideup.org/ru/). The organization works with families, not just the children, and services are provided free of charge. Yulia Kolesnichenko, head of the press service of Downside Up, said that in Russia, in areas where foundations are working with parents to help them raise children with Down Syndrome, the number of children given up when they are born is much lower. Also, in Russia, actress and TV personality Evelina Bledans and her son, Semyon, born with Down Syndrome in 2012, are in the public eye in advertising campaigns and have helped raise awareness and acceptance of the condition.
Up with Down Center
In Voronezh, Russia, children with Down Syndrome are being helped at the Up with Down Center, founded by Frank Baxter of Tulsa, Oklahoma. The center aims to teach children with Down Syndrome in a Christian school, introducing them to the Bible and how to have a personal relationship with God. “It is the goal of the center to foster an attitude of love and understanding towards these children,” according to its website (http://www. upwithdownschool.org/).
Ukrainian Church Involvement
How have churches in Ukraine been involved in assisting with disability ministries? “There are a few churches which are now working with the handicapped,” according to Vasylenko. “They have special services adapted to them. But in the big picture it’s not yet so common. Some churches were almost repenting, saying, ‘We never thought about these people.’” Misconceptions about the cause of the condition need to be addressed. “My husband went to churches to explain that it has nothing to do with punishment,” she said. “When our son was born we knew in two weeks after tests it was definite. We told our church it was definite. But still some were praying it would change. That is the discussion people have to get used to.”
In Ukraine acceptance of people with Down Syndrome is growing because now more families are keeping their Down Syndrome children and are bringing them to church. The Vasylenkos’ church started a club for children with disabilities and their parents. Meeting once a month on Saturdays, club members are able to reach out especially to nonChristians. “These parents normally don’t attend any church,” she said. “But now they come. The church has a key role in society showing that we give care and serve others, not merely preaching to them, but we serve them with attention and love.”
Cheryl Warner, Wheaton, Illinois, is a missionary with Barnabas International. She previously served in Odessa, Ukraine, and Vienna, Austria.