DESCRIPTORS: special education, models for the education and training of persons with disabilities, parental involvement, preparation for life in society, support for families, parents’ organization.
SYNOPSIS: Natalya Kitsul introduces the reader to The Rehabilitation Center for Children and Young Adults with Limited Abilities of Kurchatov, Russia, and to the parents’ organization, “Assistance.” She outlines the development of The Center, its functions, and problems and invites the reader to read the following three articles written by her colleagues about their experiences working with young people with limited abilities.

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In Soviet Times

For many years in Russia, the Soviet government’s treatment of people with limited abilities was determined by the necessity of providing their parents with the greatest freedom for the accomplishment of their labor functions. This position resulted in a state system of boarding institutions along with the various specialists that these children with limited abilities would need during the course of their lives. Authority over these institutions was divided among three departments depending on the complexities of the child’s limited abilities: education, medical, and social protection. The greatest successes were achieved in the educational sphere, in the system of special education. In this field, specialists relying on unique methods and treatments in their approach to each individual were able to help find a place in life for many children with moderate developmental disabilities. These children were able to acquire some simple work specializations and to master necessary life competencies. However, the former system never created a social service support network for help in solving complex, life situations that often lead to divergent behavior in these individuals.

Only with great difficulty can one discover those few work places that existed under the former system of government in Russia where persons of limited ability of any sort were permitted to be integrated into the regular occupational environment or find networks of specialized workplaces available to these individuals. Most people with severe disabilities were placed in an institution where they would be maintained, supervised, and in the case of behavioral problems, be made to conform by means of medication. Parents played no role at all under this system. Society in general lost all contact with persons with limited abilities. The nation’s educators lost their ability to deal with persons who did not conform to the norm. Social tolerance for divergence of any kind declined.

Perestroika

With the arrival of “perestroika” in Russia, a transformation took place in the final years of the 1980s. Persons with limited disabilities and their treatment began to be looked at in a new way. Educators began to search for more appropriate approaches to the problems of people with limited abilities of all kinds in an attempt to return them to the social environment. The education specialists and bureaucrats “suddenly” remembered that these individuals had parents and “endowed” their parents with the role of “the main responsible executors.” This was convenient, but the bureaucrats had forgotten about the connections lost during the “boarding institution” era as well as the absence, for a period of more than two generations, in the general population of social experience with people with limited abilities. Simultaneously, the bureaucrats had forgotten that an appeal to parental love is one thing, but it is also necessary to be concerned about the lack of parental knowledge regarding their own child’s disabilities.

What then is to be done for these young people? What needs to be done to educate parents and others close to the child? Can one hope that all parents will educate themselves about the needs, care, training, and education of their beloved children? Can parents make appropriate decisions for their limited abilities child based only on their perceptions and parental love?

What Do Families Want?

There are no simple solutions to the problems of families that have children with moderate limited disabilities and even more so, those with severe disabilities. Any ideal model ought to be a regional one because of the area’s special characteristics; be supported by appropriate legislation and by the regional education system; comply with all necessary requirements; and satisfy the needs of its potential users or “consumers,” in this case, meaning the children themselves and their families. The question for families, then, is whether to choose some prominent institution with high-tech assistance or a small, well-disposed place close to their home?  In an ideal model, the role of the latter should be to bring together everyone necessary for defining the child’s needs and planning an individual program of development; providing for basic daily assistance for the family; assessing the amount of help to be provided in the form of an aide; participating in the selection of the most suitable educational establishment for the child; and, in individual cases, providing a process of social and educational integration  for a child who has the skills necessary to fit the educational levels of a school that is willing to cooperate.

The Kurchatov Model

All of these conditions came together in the small city of Kurchatov in 1999 when two local organizations with the appropriate attitude and relationship were founded for the purpose of dealing “exclusively, in the interests of disabled children.” These organizations eventually became The Rehabilitation Center for Children and Young Adults with Limited Abilities and the Kurchatov community organization and parents club, “Assistance.”

The principles and positions of both The Rehabilitation Center and “Assistance,” based on the phrase, “exclusively, in the interests of disabled children,” guided their methods of organization, management, and activities. As a result, during the past ten years, the Rehabilitation Center has created innovative principles, projects, and activities that provide an appropriate amount of assistance for the instruction of children with psycho-neurological pathologies from their earliest years onward. The founding members of “Assistance,” themselves parents of children with limited disabilities, define their mission as that of securing and providing all possible support and help for children and young people with disabilities up to and including age 18 and to their families in the procurement of psychological, medical, and educational rehabilitation; vocational orientation; social adaptation and employment opportunities.
Without a doubt, these past ten years of difficult educational work and constant searching have provided positive and socially significant experiences to the many young people with severe mental and psychological disabilities not only because they were residing with their families but also because of their participation in the life of their community to the extent of that their abilities and competencies permit.

Some Results

More than 400 families made the independent and difficult decision to reject help for their limited ability children from some well-known institutions. They were single-mindedly convinced of the need to create their own system of assistance that would continually provide: social support to their children with limited abilities up to and including the age of 18; help for strengthening the prestige and role of families having children with limited abilities; protection for disabled persons, motherhood, fatherhood, and childhood everywhere in society.
At the present time, The Rehabilitation Center is attempting to introduce a step-by-step model for the adaptation of adult students to life in society. We have prepared two apartments in our city and bring together selected students there after work or on days off to prepare meals, dine together, and simply converse with one another. Before our very eyes, under the influence of his “other home,” (which is not controlled by his parents) the student’s condition is transformed and he appears wiser. What was once lost reappears. His interests grow, social links strengthen, and adaptation skills increase. Of course, this is still only a speck of progress in the wide expanse of the mosaic, but the different elements are now coming together in a specific schematic model. We are reassured as to the correctness of our selected model. As of now, we are not making any further practical or theoretical changes. We, nevertheless, recognize that the model that we selected is the correct one. We plan to develop and perfect it.

What Needs to Be Done?

Summing up, we must once again emphasize that there are still factors within the contemporary phase of our national life that prove to be problematic for the establishment of a complex system of rehabilitation for individuals with limited abilities. The nation needs to provide for:

• The formation of new socio-cultural conceptions in its treatment of persons with limited abilities ( by all sectors of the population);
• The necessary resources including a financial base;
• A comprehensive legislative foundation which would include the development of an independent agency with a uniform criteria for the evaluation of services to persons with limited abilities;
• The recruitment of enthusiastic specialists who are prepared to take upon themselves the difficult work of finding new and more successful ways of teaching and developing people with limited abilities of all ages.

The search must continue for successful models of regional and municipal systems of assistance to persons with mental disabilities. These programs and institutions must be critically analyzed, evaluated and adequately publicized so that others may learn from their valuable experiences.

For further understanding of our work, please read the following three articles written by my colleagues from The Rehabilitation Center in Kurchatov in which they describe personal experiences in working with their students.

Bibliography

Basilova, T.A. “An American Program of Skill Instruction for the Daily Life of Children with Complex Sensory Problems,” The Journal of Defectology, Russia, 1994, No. 4, pp. 91-97.
Bgazhnokova, I.M. “Recommendations for a Developmental Work Plan in a Boarding Institution for Children,” The Journal of Defectology, Russia, 1996, No. 1, pp. 29-36.
Voronkovoi, V.V., editor, The Development and Instruction of Children in an Auxiliary (ranked below a regular school in Russia) School, Moscow, Russia: School Press, 1994.
The “Children of Russia” Presidential Program, The Complex Rehabilitation of Children with Psychological Illnesses: Recommended Methodologies, St. Petersburg, 2000.
Yalpaevoi, N.V., editor, Correctional Assistance for Persons with Limited Disabilities Living in a Small City Rehabilitation Center, (textbook) Kursk, Russia: Publishing House of Kursk State University, 2003.
Maller, A.R., The Social Formation and Instruction of Children with Divergent Development: A Practical Guide, Moscow: The Publishing House “АРКТИ,” 2003.
Malofeyev, N.N.; Shmatko, N.D., Domestic Models of Integrated Instruction of Children with Developmental Deviations and the Dangers of the Mechanical Transfer of Western Models of Integration: Actual Problems of Integrated Instruction, Moscow, 2001, pp.8-13.
Shipitsyna, L.M., editor, Psychological-Educational Advice and Support for the Development of a Child: A Textbook for Special Education Teachers, Moscow: The Humanities Publishing Center “ВЛАДОС,”2003.
Belichevoi, S.A., editor, The Pscychological and Educational Rehabilitation of Children with Limited Abilities: A Textbook for Rehabilitational Center Social Workers, Psychologists, and Teachers, Moscow: Consortium “The Social Health of Russia,” 1997.
Shipitsina, L.M., “The Untrained Child in the Family and Society”; “The Socialization of Children with Intellectual Disabilities,” St. Petersburg, 2005.