BY THOMAS HELDMARK
The first time I had the opportunity to get a glimpse of the everyday life of Russian disabled children was 13 years ago. I and a photographer were on an assignment from a Swedish newspaper to report on the orphanages in St. Petersburg and to describe the benevolent forces that were working to change the system.
It was a time when the transition from communist dictatorship to more democratic processes gave hope to the people of Russia, but also brought them difficult and painful changes. Despite nascent economic growth, the tradition survived to place very young children, often with very small handicaps, in orphanages. This tradition seemed hard to change, even though nobody really wanted it. Dr. Elena Kozhevnikova, founder of the St. Petersburg Early Intervention Institute, one of the first organizations in Russia that worked to abolish orphanages, was our host and cicerone to this hidden world.
The orphanage was clean and smelled of bleach. Fifteen children lived in one room with curtains drawn during the daytime. They had diverse handicaps: some had physical disabilities; others were born with microcephaly or Down syndrome. Some had only a deformed foot or a hearing impairment. No children appeared to suffer material needs. But they were craving human contact -- nobody seemed to touch them or talk to them, and they withered away in their cribs.
As a Swede, I did not need to look far back in my own country’s history to find something similar. Until the late 1960s, there was a tradition in Sweden of hiding disabled children in institutions. It culminated when the mighty Nybodahemmet was built outside of Stockholm, in order to accommodate 2,000 children. This large prison-like building just outside the city became a symbol of the harsh and blind approach to children with special needs. Nybodahemmet was completed in 1968, but was never used. During the actual construction, there was a sea-change in opinion; partly thanks to the stubborn struggle by committed individuals, the Swedish official policy changed, and so did people’s attitudes.
Was the same shift possible in Russia? Elena Kozhevnikova seemed convinced of it. She took us to the St. Petersburg Early Intervention Institute's facilities at Tjajkovski street, where she and her colleagues conducted a highly developed clinical practice. With modern methods, they made reliable diagnoses and helped families to keep children at home instead of casting them out. They took on children with various disabilities, and there were no other criteria than that the family needed help. They trained the children to practice their communication skills -- children with disabilities often have difficulties with communication. They taught their parents to read their child's emotional and cognitive signals. They helped the parents to train children's motor skills and mobility. They worked from a perspective where the family was at the center, and so was the child's ability and needs. As one of the institute's staff put it, there were no hopeless cases. The institute's work branched out to other cities and other regions of the former Soviet Union, and although there was much left to do, the future had a silver lining, not only for the Early Intervention Institute, but for all the children with disabilities who were at risk for institutionalization.
So what has happened in 13 years? Has the situation for disabled children improved in Russia?
An international conference held in St. Petersburg, 1-3 July 2013, attempted to answer to that question. Called “Early Intervention to Promote Child Development and Mental Health: From Institutional Care to Family Environment,” the conference was arranged by the International Society of Early Intervention, and conference hosts were Dr. Rifkat Muhamedrahimov and Dr. Elena Kozhevnikova.
The conference took place at the St. Petersburg University psychology department, in the same building where early 20th century physiologist Ivan Pavlov conducted his dog experiments. Hundreds of clinicians, researchers, experts, and decision-makers from many parts of the world gathered there for a few days, to discuss new methods to help disabled children in the region, new diagnostics, and better support and assistance for families. New studies were presented on how children are faring, the numbers on hearing loss and other disabilities, and studies on how children understand the interventions. The conference aimed to broaden the concept of early intervention to incorporate mental health and social security. And the organizers hoped that the conference would not only be useful for researchers, but also for families and for the staff who work with children.
The conference was impeccably well arranged, with break-out seminars and with simultaneous interpretation from Russian to English and vice versa. One problem was choosing between the afternoon seminars, which could include four or more happening at the same time. They covered a wide array of topics and geographical regions. Sessions covered new methods for assessing and measuring the mental skills among children. They were about how to develop family-centered models for early intervention. Experiences and good examples came from China, Turkey, Spain and so forth. For me, as a foreign journalist, it was a privilege to be part of such a dedicated group of participants
And lot of things have changed for the better in 13 years. The situation in the institutions have improved and the proportion of children who end up there appears to be falling in the region as a whole. Many countries in Eastern Europe have developed methods and systems to support families. But progress is slow. Central and Eastern Europe and Central Asia are still the regions in the world with the highest number of institutionalized children. Over half a million children spend their upbringing in institutions, half of them in Russia. Quite regardless of how modern these orphanages have become, all available research shows that in most cases it is harmful for children to be separated from their families. This applies particularly to children under the age of three. Early intervention is not only about doing good and doing it early in life, but also about doing it in the right place, which most often is in the family environment. The level of knowledge about this matter has increased enormously during the last decade, but that knowledge is not always available where it is most needed. It is mainly resource-poor families who are hard to reach with good and early interventions.
We learned at the conference that the reasons why the structures are difficult to change are complex and intertwined. This is partly a legacy of the dictatorship years, to reflexively hide away people who are not considered perfect. A rough medical scholarly paradigm formed based on this idea, the so-called defectology, which defines what is “normal” and tries to correct everything that falls outside of this idea of “normal”. The idea was prevalent when Elena Kozhevnikova and the Early Intervention Institute advertised for children with Down syndrome who lived at home with their families. They wanted to find the children they could help. The problem was that almost no children with Down syndrome lived with their parents. This was the early 1990s. Defectology has long been rejected from universities as a scientific field, but the thinking lives on, in parts of the decision-making profession and sometimes the public. Furthermore, there is insufficient support for the parents themselves to take care of their children; young parents also learn to be helpless, and that they cannot take care of their children which is a misunderstanding with deep historical roots saying that the government can take better care of children than parents. All this needs to change.
One question asked during the conference was whether it is possible to change defectology to make it more humane, more holistic and useful in a modern clinical context. Another issue discussed was whether it is best to close the institutions or if in some cases, they could actually work if you changed them. As one participant pointed out, there will always be, in all countries, children living in institutions.
My own contribution was to lead a discussion about how the St. Petersburg Early Intervention Institute has emerged in the last 20 years and how it looks today. The discussion consisted of an interview with EII's founder Elena Kohzevnikova, in which she described EII's frequent contacts and knowledge exchange with Swedish and other international organizations, and how that improved their clinical work. She also told of how having external assessors was excellent. During our visit 13 years ago, a group of Swedish nannies were in residence. It was part of their training to take part of EII's clinical activities.
A panel discussion followed with some of the institute's employees over the years: Slava Dovbya, Natalia Baranova and Katya Klochkova. They also represent the palette of specialties included in the EII in its early years: Elena is a psychologist; Natalia, a special education teacher; Slava, pediatric neurologist and Katya physical therapist. None of them where a particularly strong advocate of reforming the institutions; rather, the institutions should be abolished, they felt. EII's activities also were featured in several other seminars, including one that Natasha Baranova and the institute’s current head, Larissa Samarina led.
EII has been working closely with Sweden and there is perhaps something to be learned for other organizations working with early intervention: to gain partners in other countries. Elena Kozhevnikova described how tentative efforts had been in the early 90s, and about the moral, intellectual and other support she and her colleagues had received from their Swedish partner organizations. Here she believes that other organizations and institutions may have something to learn.
In a rich conference such as this, much of the meat takes place between the seminars -- on coffee breaks, during the informal discussions. I especially remember the Ukrainian and Dutch team from SOFT Tulip/Socires, consisting of lobbyists, psychologists and special teachers who have tackled changing the system of orphanages in Ukraine and helping the children who end up there. They collaborate with local representatives, local orphanages and staff on site. But they also have lobbyists who seek influence on the political level, particularly at the ministerial level in order to open up the institutions that for decades have been closed for NGO:s as well as for the general public. Their efforts have so far been successful, according to Dr. Eric Bloemkolk and Dr. Natalja Dobrova-Krol from SOFT Tulip/Socires.
The aftermath of this conference is that there is a lot of knowledge and commitment, which gives cause for optimism. It became clear to me that the old system for treating children with disabilities is not to be viewed as a separate problem, but as something that needs the whole society to gather their good forces around. The system needs to be changed as well as people´s minds.