A seminar called Special Family - Specific Needs - addressing the problems of orphans and children with special needs was organized by the Social Information Agency (SIA) and held on May 22 in the Central House of Journalists in Moscow.

The SIA is an independent agency that provides information and support for civil initiatives. The agency issues daily reports about non-commercial organizations, important social events and people´s lives, and works with civil organizations on socially significant projects.

The seminar provided an opportunity for non-governmental, non-profit organizations to meet state representatives. and discuss ways of interacting and working towards shared goals.

The seminar was attended by Valentina Chekanova, deputy director of the Department of Medicine and Social Problems of Maternity and Childhood of the Health Ministry of Health; Natalya Uryadnitskaya, the senior research officer of the Laboratory of Diagnostic Methods and a specialist in helping children of a young age with developmental deviations; representatives of the non-governmental organizations Doroga v Mir (Way to the World, a national organization assisting children with delayed psychological and verbal development) and Takiye Zhe Kak Vy (Just as You Are, a Moscow regional charity for those disabled from birth); Assistance to Russian Orphans program representatives; the Triada non-governmental organization dedicated to helping challenged children and their families; and a number of others.

Chekanova outlined the major governmental policies in the sphere of support to troubled families. She revealed statistics about children disabled from birth and described the social benefits that such families may be awarded by the state and programs of integrated rehabilitation.

As of Jan. 1, 2001, Russia had 675,300 registered children with developmental delays. Chekanova said they turn to the state for financial support.

"The leading pathologies in children´s health are now as follows: Number one is neuropsychological disorders - 52.45 cases out of 10,000 (including cerebral palsy, which accounts for 19.4 cases in 10,000), second is psychological disorders (31.02 cases out of 10,000, and number three is inborn anomalies (genetic pathologies), 28.2 out of 10,000," Chekanova said.

The discussion was rather heated from the very beginning. Voices were raised and uncomfortable questions asked. Obviously, it was a matter of personal concern for most people present.

Not only do the people involved work with such children, but some have faced the challenge in their own families.

One of the major hindrances (as one of the participants pointed out and everyone agreed) is that it is extremely difficult to obtain statistics on how many children need specialized treatment and rehabilitation in a particular region. For instance, statistics on how many children are in need of a rehabilitation center must be supplied before a center can be opened.

The problem here lies in the fact that not all parents of such children are willing to have them diagnosed with some kind of mental disorder. They are afraid that their children will be taken to an asylum.

Taras Krosovsky, chairman of Takiye Zhe Kak Vy, outlined the stereotypes people hold against children with developmental delays: "There are several misconceptions that are widespread and lead to a distorted and biased attitude toward these children. One of them is that they are all the same, and that they do not perceive their environment or what is going on around them. They may be all alike, but this alikeness is the alikeness of loneliness and fear and separation from the rest of the world.

"If taken care of properly, these children develop much more quickly and even the phenotype [features attributed to mentally troubled people] becomes less prominent and finally disappears altogether. The more attention is given to a child, the more likeness he/she will bear with his or her parents and siblings. It is not true that they do not recognize anyone. Any mother of such a child will tell you that she is recognized by him from the child´s earliest days.

"Another myth is that, if the mother doesn´t put the disturbed child into a special institution, her husband will leave her. According to our statistics, out of 18 children, seven were kept by their families, and 11 were given to state orphanages. Out of the seven families that kept their children, none has split.

"As for the other 11, we have two divorces, one family is on the brink of it and the trend is disheartening.

"It is definitely a test for the parents´ feelings. But if a family refuses a child, it is a betrayal, and not many can do it and stay together afterwards.

"Yet another stereotype is that, if the family keeps the troubled child, they will become social outcasts and have to live in isolation. Other children in the family are said to be ashamed of their disabled sibling; they cannot invite anyone in or lead a normal young person´s life.It all depends on the attitude of the parents - if they succeed in persuading people that their child is just different, neither better nor worse then any other kid, then we can see a normal family that leads a normal life.

"We even know cases in which healthy children have invited their friends to see their unusual siblings on purpose, just in order to see their reaction and what their friends are really like. One girl even did it with her husband-to-be, just because she wanted to be positive that he was the right kind of person for her… It is most important to really accept your child, and then the people around you will react accordingly in their turn."

The most dramatic part of the meeting was a film presentation made by Takiye Zhe Kak Vy. The video showed a regular, government-owned institution for children with developmental delays: skinny bodies, scared or withdrawn faces, children tied to wooden benches or put into cages. They all wore only linen shirts and no pants.

When personnel were asked why this was the case, the answer was that they do not have facilities for sufficient washing of clothes.

Krosovsky said, commenting on the video, that "the final stereotype is that there are some government institutions where such children are kept together and live happily. I do not think any words are needed on that one."

The most important task, as outlined by Krosovsky, was to change the social thinking: "You see how many false problems there are in this sphere. I am not trying to say that there are no real problems at all. But we must turn to the real problems, we have to change the attitude of the families and the social attitude in general."

Chekanova, who is also director of the integration kindergarten in the organization Doroga v Mir, shared her experience of teaching children that have been labeled as "unteachable."

"After lengthy talks with officials from the Education Ministry, the specialized classes for children with psychological and verbal deviations were granted the official status of a school. Thus, now, the children that would have been sent into closed institutions (where they would hardly be getting any personal attention) receive specialized education…

"Great attention is given to correction and development techniques. We have children with serious psychological and psychiatric disorders, children that lag in their verbal development and almost can´t talk.

"We work in close cooperation with highly trained specialists and medical pedagogues that have had internships in Europe in the leading institutions in this field. We practice music therapy, art therapy, labor therapy; we try to integrate our children into the surrounding environment as much as possible. Each kid receives an individualized program, but we teach them in groups, since communication is vital for them."

"We now face the question of what happens when the children reach the age of 18; we definitely have to work out a plan according to which such people must be helped. But the major problem is the social attitude, and we must strive to change it," she added.

It goes without saying that developmental delays set a definite limit on what a special child can learn. But, in things as sawing or carving or handicrafts, or in hairdressing skills, such children may be quite able.

"We conducted a contest in hairdressing, and the winners were children that have been identified as being retarded," said Irina Safronova from Triada. "Now, we are dealing with organizing relaxation and travel for our children. We are establishing contacts with the Ural Region, Tatarstan and France. Integration is the most important form of therapy for such children.

"We invite everyone to join our program of creating special settlements in rural areas where the labor of such people can be implemented. We are now working with another organization that helps orphans. This integration is sure to bring a lot.

"Though the problems from both sides are considerable, the children try to help each other to overcome them. We are now planning on purchasing land in Kostromskaya Oblast and creating a settlement there."

Safronova proposed banishing government children´s homes and creating a special program that will take care of children in all stages of their lives, starting with maternity hospitals and going through specialized schools to settlements in rural areas.