I was sitting in a café in northern Russia making phone calls to nearby government orphanages when the woman behind the counter asked what I was doing. I explained that I was researching conditions for children with disabilities living in state institutions. ‘I’m Elena,’ the woman said, ‘my three-year-old nephew Kostya has cerebral palsy. He lives there.’ She pointed in the direction of an orphanage I had just visited.

Elena told me that when Kostya was born, doctors falsely claimed that he would never walk, talk, or recognize his parents. They urged Elena’s sister to send Kostya to the orphanage. She did, thinking it was for the best. But what she didn’t realize was that her decision would effectively cut Kostya’s ties with his family. Buses to the institution were unreliable and the bus stop was miles away. Taxis were prohibitively expensive. ‘And you can never tell whether they will let you in,’ Elena added.

Managing Russia’s orphans

After two years of researching conditions for children with disabilities in Russian state institutions, I find Elena’s story tragically familiar. Children with disabilities are often placed in geographically isolated institutions, cut off from contact with their families and denied the variety of experiences available in their home communities. In some cases, they can’t even play with other children in the same institution.

As well as keeping them isolated, these institutions frequently use coercive measures to punish and manage their charges. In some institutions I visited, I heard about and saw physical and psychological abuse of children. Staff frequently injected children with sedatives to punish them for not following the institution’s ‘routine.’ Children talked about sleeping for extended periods – up to 24 hours in some cases – becoming lethargic and incapable of experiencing emotions, or losing their appetites for days on end, after being injected with strong sedatives.

Some children I interviewed told me that staff beat or poured cold water on them as punishment. I saw children tied to furniture to prevent them from leaving their rooms, or because there were no other strategies to calm or help children prone to head-banging. Some children without mental health conditions reported being sent to psychiatric hospitals for infractions as minor as roughhousing with their mates. Many staff members were apparently unaware of more positive approaches to child raising.

According to one international children’s rights group, well over 350,000 children live in Russia’s system of state orphanages. Nearly half have disabilities: cerebral palsy, blindness, deafness, physical disabilities or Down’s syndrome, among other conditions. Some have multiple disabilities. Children with disabilities are often placed in ‘specialized’ orphanages, where they receive less help, medical care, therapy and education than other children in care. .

Pseudo orphans

The vast majority of children in Russian state orphanages or various types of foster care have at least one living parent – indeed many have two. It isn’t that they are really orphans, but rather that the Russian government doesn’t provide the support parents need to raise children with disabilities. Instead, the government pressures parents to give up children with disabilities to state care, and often denies family visits, effectively turning these children into orphans.

Many children with disabilities enter these institutions as newborns because doctors insist that the children will not develop or that parents will be unable to care for them. Quite apart from the heartbreak for parents, inadequate access to information and government support services leads to violations of these children’s rights. International law prohibits discrimination on grounds of disability, and gives children with disabilities the right not to be separated from their parents.

In another Russian city, I interviewed Karina, whose son Stas, now 19, has a developmental disability. Over coffee, Karina explained that she turned Stas over to an orphanage when he was two after Stas’ pediatrician told Karina that the medication to regulate his behaviour was only available in state institutions. Faced with the difficulties of obtaining healthcare and pre-school education services for Stas while also holding down a job, Karina saw no choice but to do as the doctor advised.

The assessment

When Stas turned four, he went through a process that all children in state orphanages face at that age: he appeared before an official panel of teachers, psychologists, and doctors, who decide whether children should transfer to orphanages for older children, return to their families, or be adopted or placed in foster care. It was an oral exam, but Stas did not talk. The commission quickly concluded that he was ‘not suited for family life,’ and recommended his transfer to another orphanage.

Karina described the institution where Stas ended up as ‘the best possible orphanage,’ with decent material conditions and an absence of some of the worst abuse children can face in state institutions. Yet the commission’s recommendation meant that Stas found himself increasingly isolated form his mother.

‘Staff didn’t let me leave the grounds with Stas,’ Karina said. ‘They told me that visits home spoiled him.’ Karina started to cry. ‘I am nothing to my child. The institution is the parent. They can come up with a reason to bar me from seeing him at any time.’

The separation of children from their parents is not unique to Stas and Karina. Anna, a Moscow-based children’s rights activist who has worked for years to protect the rights of children with disabilities living in Russian orphanages told me: ‘I met children who could have developed “normally” if they had lived in families. But staff tell parents not to visit. Parents lose touch with children, and it becomes less likely they will take them home.’

I visited the orphanage where Stas spent his childhood, and the three-hour trip itself showed how isolated many children become, who have been turned over to the state. Bus drivers had never heard of the home, and the closest stop turned out to be a 30-minute walk from the orphanage gates.

The lying-down rooms

Isolation within institutions can also be severe. In addition to the arbitrary restrictions on family visits, children whom staff deem to be too ‘ill’ to develop, or whose behaviour displeases staff, are sent to ‘lying-down’ rooms, ‘isolation wards,’ or psychiatric hospitals.

Inside the sprawling concrete building where Stas had lived, the administrator showed me classrooms where some children were singing songs or reading with teachers. He then showed me the ‘lying-down’ rooms. Children who can neither walk nor talk, or whom staff have deemed ‘too severely disabled’ to benefit from social interaction, are housed in these rooms, condemned to spending their days in their cots.

They receive minimal attention from staff, except for nappy changes or adjustment of their feeding tubes. Many of the children I met in these rooms were emaciated and severely underdeveloped, with ribs protruding through their torsos and extremely thin arms and legs.

A pediatrician specializing in the health of children with disabilities examined photographs of several of these children, and concluded that their small size most likely resulted from lack of stimulation, and inadequate nutrition and health care. For many children, growing up in a ‘lying-down’ room exacerbates or creates additional disabilities. Relegating children with certain types of disabilities to ‘lying-down’ rooms is discriminatory and violates their right to health and development. No child should have to live this way.

‘Isolation wards’ are another type of separate ward where children are confined for up to a month after their transfer from another institution or return from a home visit. Although their ostensible purpose is to monitor children for signs of contagious diseases, there is no public health need for such wards. Children should be immunized and monitored for colds or flu, as any other child would be.

In one orphanage, I met 16-year-old Sveta, who stared down at the desk where she sat colouring, and would not speak. A staff member explained, ‘Sveta has just returned from a few days in the isolation ward, after a visit home. Children are sometimes shut down when they come back from the isolation ward.’ She added: ‘children come back wild from home visits, so the isolation ward is a good way for them to readjust to life in a group.’ She apparently saw little contradiction in her justifications for this kind of treatment.

In the isolation wards, children neither learn nor play. The children I met in these wards sat on beds in their underwear and stared into space. When several children in one institution’s isolation ward approached me, doctors shouted at them not to move. Had Stas had been allowed to visit Karina at home, he would have faced the same conditions when he got back to the orphanage.

But overall, material conditions for Stas and the other children in that particular orphanage were better than in some of the others that I had visited. I learned that in recent years, some institutions have been kitted out with more equipment and toys, and freshly painted walls. Staff showed me rooms with new rehabilitation equipment, dance studios, and classrooms where some children drew and played with teachers.

The problem is that children seldom benefit from these resources. Often therapy facilities and play areas were empty, as if for display only, and staff in several institutions told me that children in ‘lying-down’ rooms were not given the opportunity to use these facilities anyway.

Lifers

This lack of education and development has long-term consequences for children. Once children in orphanages reach 18, they have the right to housing and other entitlements. However, children with disabilities face almost no prospects for social integration because they have been denied both education and information about their right to live in the community. Many administrators at specialized orphanages automatically transfer 18-year-olds to adult institutions.

For teenagers who resist transfer to adult institutions, the costs can be high. Nineteen-year-old Nastia, who has a developmental disability, told me that after her 17th birthday, an orphanage administrator ordered her to sign a document agreeing to enter an adult institution. When Nastia insisted that she wanted to live in a flat in the city instead, the orphanage administrator hit her. Nastia was among the few young people I interviewed whom a local organization helped transfer to its assisted living center nearby.

In Stas’ case, orphanage staff simply told him and Karina that he would be transferred to an adult institution. Lacking the resources available to Nastia, Karina could not protest.

Taking back the children

In the midst of these many challenges, I saw some signs of positive change. In several cities, local NGOs, sometimes with government support, provide information to parents of newborns with disabilities, about community-based support services, so that parents can resist the pressure to send their children to orphanages.

I also met parents who have managed to raise children with disabilities in their communities. In Moscow, Anastasia, the mother of 14-year-old Dasha, who has Downs Syndrome, took her daughter back from an orphanage after Dasha’s first birthday. Today, Dasha attends an ordinary school and helps the family care for her grandmother.

There is much that could be done. Russia could allow children with disabilities to remain with their families, partly by providing accurate information on disabilities and children’s rights. The government could provide desperately needed health care, transportation, and inclusive education, to facilitate life at home for children.

For children in state institutions, the authorities could ensure that relatives and others involved in the children’s care can visit them, without punishing the children. This needs to be part of a plan to end the institutionalization of children.

For their part, Russia’s international and local funders of orphanages should support organizations whose purpose is to help children leave orphanages and live with their families or in foster homes.

The journeys children make each day should start and end in the family home. Children with disabilities should be free to move about their communities, and attend school, and play in parks, and visit relatives just like other children. If more families like Dasha’s were to receive the information and resources necessary to keep their children, then what is currently an abusive orphanage system could finally fade into history, where it belongs.