Provision for disabled children and those with learning disabilities in Russia is thought by many experts to be 50-60 years behind that of the West. But stability under Putin’s government has seen a concerted attempt to modernise care standards, writes Howard Amos
Sasha Pilipenka is a tall boy with ears that stick out. He loves history and can talk at some length about the emperors of Rome, the battles of the Second World War or, his favourite topic, Ancient Greece.
Sasha turns eighteen this November and, like most of the children with whom he has grown up at the Belskoye Ustye Psycho-Neurological Orphanage in western Russia, he will go on to live in an “adult institution”, one of hundreds of such establishments сaring for those in Russian society unable to live independently – the institutionalised, those with mental illness and the very elderly.
Sasha is among the most articulate of the 63 children between the ages of seven and seventeen at the state-run Belskoye Ustye orphanage. All the children have diagnoses of mental or physical disability (to varying degrees of severity) and most have been in institutional care since infancy. Until 2008 when the federal government reclassified these children as no longer ‘unteachable’, they had received only the very rudiments of an education. Most remain illiterate.
Throwback to the 1950s
In terms of its dependence on institutional care, Ray Jones, professor of social work at Kingston University and St George’s, University of London, says that Russia’s system of social care today can be reasonably compared with Britain’s in the 1940s or 1950s.
Under the relative stability of the Putin era, however, the way in which Russia cares for its most vulnerable citizens has been changing.
‘There is a big push in government towards working with disabled people at the moment’ says Marina Kirilova, head of the local government Department for Families, Women, Children and Demography. ‘The ideal, of course, is that this institution [the Belskoye Ustye orphanage] be closed down completely.’
The Belskoye Ustye orphanage is in a small village 12 hours on the train from Moscow and about one hundred kilometres south of the old city of Pskov. The attendants in the village shop use an abacus and horse-drawn carts share the unpaved roads with dented Ladas. Like the other 143 such institutions for handicapped children scattered across the country the orphanage is well hidden from cosmopolitan Russia.
Until relatively recently, conditions were grim. Tatiana Kapustina, now the orphanage’s psychologist, first visited in 2000: ‘the children were in rags, dirty and covered in piss’ she recalls, ‘they threw themselves, literally threw themselves, at people’.
Social welfare collapse
The stagnation of the final years of the Soviet regime and the chaos of the Russian Federation’s early period underwrote the collapse of social welfare provision but over the past decade the material situation has improved and the number of children in the Belskoye Ustye orphanage has dropped from a high of around 130.
Alternatives to the ‘adult institutions’ in which most Belskoye Ustye ‘graduates’ have traditionally ended up are also being developed. Both charities involved with the orphanage – ROOF (the Russian Orphan Opportunity Fund) and Rostok – have set up ‘social hotels’ in the local town where five or six young people live with a supervisor.
Among the skills of independent living they are taught to cook, manage money, find and hold down a job. The social hotels also have small vegetable plots and livestock. Although the number of ‘graduates’ these centres can accommodate is limited, their dedicated staff and the houses themselves serve as important points of cohesion for ex-members of the orphanage living in the local area.
Pioneered by the charity Rostok using EU money, there have also been moves over the past two years towards the adoption and fostering of the orphanage’s children. The programme is currently frozen, waiting on regional legislation, but Tatiana Kapustina who is closely involved says she has been surprised by the level of interest in the scheme. There is a widespread belief in Russia, she says, that no one would want to foster disabled children when ‘normal’ children were also available.
Although there has been some state investment and much Russian charitable effort, foreign ideas, money and time have strongly influenced the systemic changes taking place. At Belskoye Ustye the involvement of ROOF and Rostok has been crucial. Both have strong links abroad – the director of ROOF, Georgia Williams, is, for example, from the US, and the former head of Rostok’s ‘Family-based care of disabled children’ project, Laure Trebsoc, is French. Since 2000, ROOF has put on an annual four week ‘Summer Camp’ in Belskoye Ustye where volunteers drawn from across Russia and Europe run an intensive course of activities for the children.
Speaking in front of a poster which reads ‘I believe in Russia’, Marina Kirilova explains that it was only after the fall of Communism that those driving social policy in Russia were able to understand how de-institutionalisation could be realised in practice. Since 1991 the management at the Belskoye Ustye orphanage has been able to see at first-hand how other European countries provide social care. Sweden and Germany are cited as models and the orphanage director, Gennady Filkin (whose background is in metalwork not social care), recounts with enthusiasm a trip to a factory in Bonn which runs a programme for disabled adults. Such experiences abroad were important components of a ground-breaking regional law in 2006 that expanded the scope of foster care in the area.
Foreign concepts, however, are not universally welcomed. Not only are different parts of Russia learning from different parts of the world – Japanese and Chinese models are influential in the East – but there is some resistance to Western ideas disseminated by Western charities. Wendy Tabuteau, director of The Promise, a charity of British origin which has pioneered the implementation of Portage (a scheme which develops the abilities of disabled children) in Russia, says that while they have been granted access to previously ‘closed’ institutions, there remains within Russian society ‘a level of fear that stops people moving forward’.
Whatever the politics of foreign aid, those in government leading the drive for change at Belskoye Ustye are clear about their goals: the transformation of the orphanage and establishments like it into multi-purpose rehabilitation centres and the closure of every adult institution. With a conviction that flies in the face of progress to date, Marina Kirilova maintains that this can be achieved in five years: ‘the state is really active and if everything’s changing, then change will happen a lot faster’ she says.
Nonetheless, there are huge obstacles. In the region where the Belskoye Ustye orphanage is located about 1,000 children are deprived of parental custody every year. Across Russia as a whole there are almost a quarter of a million children in institutional care.
The issue is not merely one of new legislation or administrative re-formulations, attitudes too would need to be altered. The children at Belskoye Ustye are still locked behind rusting metal grilles, threatened by their carers with being sent to the local mental hospital as a deterrent for bad behaviour, and it is almost solely boys who are offered places at the non-institutional centres once they turn 18. The changes which need to be made before talented young men like Sasha Pilipenka can be successfully integrated into the Russian community are only just beginning.