Family Club Hope Rehabilitation Services for Cerebral Palsy Youth
About the Organization
Club Hope is a nonprofit, nongovernmental, social service organization located in Yekaterinburg, Russia. The club was started nearly 20 years ago by Irina Polovodova after she was told by the medical community that there was no assistance available for her and son, Andre, who was born with cerebral palsy. Serving as director, Polovodova is assisted by a small but dedicated team of staff and volunteers.
Club Hope serves children and families affected by cerebral palsy and other physical and mental disabilities. The aim of the club is to provide parents and children with the skills, resources and support needed to keep the children in their homes as an alternative to being institutionalized in Russia’s state-run orphanages (where educational and rehabilitation services are not offered) and to help children achieve their optimal level of intelligence and function. The club provides rehabilitative, psychological and educational programs and activities not otherwise available to these children. The remaining children in the city who need but are not receiving such services are either housed in state-run institutions or are cared for in their homes by parents lacking training and support.
Programs of Club Hope incorporate physical rehabilitation activities and support the development of the physical condition of the children. Programs also provide psychological care for children and their families and prepare children for being mainstreamed into the community and public school.
United Methodist Women has continuously funded Club Hope from 2007 to 2011. Support received is used for three main purposes:
- Provide rehabilitation to children with disabilities.
- Provide support to the children’s families.
- Provide support to the teachers who work with the children and their families.
For the children, Club Hope provides an alternative to institutionalization (called orphanages, as these children become “social orphans,” meaning children with parents that are turned over to the state for care and raising). Nearly 30,000 children stay in Russia’s orphanage system. Life for children in these orphanages holds no opportunity for structured physical rehabilitation or education. Children are essentially “warehoused” and isolated from the community, and families are encouraged to limit interaction with their children and resume life without the burden of a disabled child. Abuse and neglect are common. These institutionalized children receive no upbringing, education or rehabilitation services.
In 2012, Yekaterinburg reported that 3,375 disabled children are residents of the city. The area of the city surrounding Club Hope’s location has 518 such children. Club Hope serves approximately 25 percent of the disabled children and families in Yekaterinburg, helping to overcome social stereotypes in the community and prove that these children can live a normal life. Club Hope also serves to prove that these children can study at mainstream schools and that handicapped children are not a burden to society but are useful citizens.
Rehabilitation Services for Disabled Children, Parents and Families
In 2011, Club Hope provided services to 215 families and educational opportunities for 122 disabled children. Services provided were:
- Rehabilitation/therapy through art: training in theater, puppets, music, sculpting, and crafts, working with beads, paper and natural materials.
- Physical rehabilitation/therapy: therapeutic exercise, swimming and water therapy, and therapeutic horseback riding.
- Psychological care to parents and children: group and individual counseling sessions, home visits by a psychologist for more difficult children, and training classes for parents and families on how to keep and care for disabled children in the home.
- Preparation for school: assistance in providing skills for the children to adapt to the situation and conditions of regular school.
- Recreation and social activities: throughout the year recreational activities and social outings are planned to celebrate birthdays and holidays.
Club Hope has begun to use new technologies such as Skype and other Internet resources to work with the newest generation of children and their parents. Most of these children have never been inside a school because of their conditions. While progress is being made, the culture in Russia still is not fully open to accepting and incorporating children with disabilities into mainstream educational facilities or society. Through the education and support provided by this program, parents and children will understand that they are special but not outcasts and that having a disability does not mean leading a less full life.
Teacher Training Program
Russian public schools are not designed or structured to accommodate disabled children, and in 2007 only 20 children were able to successfully complete their education in a normal secondary school. In 2008, Club Hope started to design and implement a program to educate public school teachers and administrators on the special needs of children with cerebral palsy and other disabilities. Since then, each year, teachers and volunteers from Club Hope conduct a training session in public schools to provide 15-20 teachers with increased knowledge and skills to better equip them to incorporate disabled children into their classes. As of 2011, 1 in 3 children participating in Club Hope of preschool and primary school age are enrolled in public schools.
Prior to the educational program aimed at public school teachers, disabled children were not allowed to attend public school. Currently, one-third of the children participating in Club Hope attend public school.
Annya lives with her parents in a two-room apartment on the 11th floor of her building in Ekaterinburg. She has never been inside a school building, but she attends classes twice a week from a school in Moscow. How is this possible? Annya and her Moscow teacher use Skype! Using this technology has opened Annya’s world and allows her to interact with other students in a class setting. This interaction is completely new to Annya and others stricken with cerebral palsy and other disabilities and would not be available without the use of Skype and current technology methods.
Club Hope has made Annya’s parents aware of the many possibilities for their daughter that in past years were not imaginable. The technology to educate their daughter is supplemented by Club Hope’s home therapy program and the social and supportive activities provided to the children and families of youth challenged with disabilities.
My daughter Kate is now 13 years old. Due to the fact that she has one leg shorter than the other and she has very short arms, she was embarrassed of her appearance and shortcomings. Therefore, from the first to the third grade, she did not go to school and studied at home. But I knew that my daughter had to communicate with other children. I learned that there is a club in Yekaterinburg, “Hope,” which helps children with disabilities. I persuaded my daughter to go there to play music, as she loves to sing.
I was very surprised, because no one at the club paid any attention to the legs and arms of my daughter. After a while, my daughter was no longer ashamed of her arms and legs but only talked about the joy of her new friends, her success in the classroom, and she and I both felt like a different people. The club convinced me that my daughter found it easy to come into contact with different people and she needs to take classes in a regular school and not at home.
Teachers at the club helped involve the known Elizarova Hospital, where my daughter did two sessions and significantly strengthened her short leg. Now my Katusha [Russian nickname for Kate] goes to a regular school with healthy children. She has many friends in the class. She sings in the school choir. We do not go to the club as often as before because my daughter has already adapted well to the school. But we will always remember the teachers and children and all those who gave Kate assistance and support and helped her get comfortable in this world.
Letter From Parents
Can a child with disabilities become a great joy for parents? Of course he or she can! Earlier we were face to face with a problem—a child who was disabled. The club “Hope” has become our common home and has completely changed our lives. We are the parents who have attended the club with our children since 2010. Today, our children are 5 to 9 years old. Some of our children have been at the club training for school and hoping not go to a special (correctional) school but to a normal school. The club “Hope” provides highly professional teachers and the perfect atmosphere. It is here to help children and parents to believe in themselves and a brighter future.