Bos/Hrv/SrpRomânăБългарскиShqipМакедонски 22 Dec 16

Past Still Haunts Bulgaria’s Disabled Children

Bulgaria has closed the crowded, isolated institutions that once housed its disabled children, but is still a long way from providing the care they need.

Maria Milkova Sofia, Botevgrad, Byala, Apeldoorn
Tsonka and Tenyo Tenevi with their daughter Teodora, six years after they were reunited under a programme to move disabled children out of isolated state institutions. Photo: Maria Milkova.

The residential home was new, the rooms clean and airy. But the lift to the second-floor bedrooms had not been working for months, so the children spent nights sleeping in their wheelchairs or on the sofa.

There were toys, too, but it was the television on the wall that captivated the children, while at the table, an elderly carer briefly, clumsily, held a child by the hair to keep her head steady as she fed her.

The carer was not rough or abusive. But there it was, in her untrained hand, in the broken elevator and the boredom, a reminder of the recent past, a period Bulgaria is trying to leave behind.

The house, in the Benkovski suburb of the capital Sofia, was one of almost 150 built in Bulgaria over the past six years to house up to 12 disabled children each, replacing the isolated, over-crowded and under-funded state institutions where such children were once held far from the wary eye of society.

Bulgaria closed the last of 24 communist-era institutions for disabled children this year, a process known as ‘deinstitutionalisation’ that some nations in Eastern Europe have already been through but which others have still to seriously tackle.

The process has won praise and the change is significant. But closer inspection reveals just how far Bulgaria has to go. It is a cautionary tale for others, such as neighbouring Serbia, which was criticised by Human Rights Watch this year for what it said was the “neglect and isolation” facing hundreds of children with disabilities.

For the Balkan Fellowship for Journalistic Excellence, this reporter gained access to the Benkovskifacility undercover, in the interests of presenting as true a picture as possible of the successes and failures of deinstitutionalisation in Bulgaria.

This reporter entered as a would-be volunteer helper, spent several hours in the home and later put the findings to authorities in charge. The picture, though improved, is still one of under-funding and under-staffing, a lack of training and lingering practices from the past.

“The government took a major step, and that should be recognised. But deinstitutionalisation started very well, and then stalled,” said social anthropologist Haralan Alexandrov of the Centre for Advanced Study in Sofia, who has studied the process since the start.

“Everybody loves to build,” he said, “but when the time comes for soft measures… that’s the difficult part.”

Staffing problems

Bulgaria launched the process of deinstitutionalisation in earnest in 2010, shamed into action by media reports and outrage in Europe over the horrific conditions endured by disabled children removed from society and wasting away in damp, grey, isolated buildings.

They were victims of a policy replicated across ex-communist Eastern Europe whereby parents of disabled children were advised to abandon them to the state, which then hid them away.

A total of 2,115 disabled children have been moved out of such institutions in Bulgaria over the past six years; the lucky ones, more than 400, have been adopted abroad or returned to their parents, some of whom believed their children had died.

The majority, 1,291, have been rehoused in small homes for up to 12 children, built with 85 million euros of EU money and located in communities around the country.

A new care home for disabled children in Botevgrad, 60 kilometres northeast of the Bulgarian capital, Sofia. Photo: Maria Milkova.

The homes are a vast improvement, bright, functional and often centred around the kitchen.

Experts say the move has yielded immediate results, with children already gaining height and weight. But other indicators are more worrying.

“The salary is too low and no one wants to work here,” said Dimitar Manolov, the director of two care homes in Botevgrad, a small town 60 kilometres northeast of Sofia.

“In the beginning, we had people coming who were simply unable to find jobs elsewhere.”

Manolov listed his other woes: the houses he runs have no specialised transport for disabled children, no cleaners and had experienced some delays in salary payments.

“Yesterday, we had to take two children to the dentist,” he said. “A nurse and care worker went with them and we were left with only one care worker. We have nine children here and a total of two care workers at any one time, working on shifts. It doesn’t always work out.”

At 250 euros per month, the salaries earned by such care workers are among the lowest in Bulgaria, the poorest country in the EU. The new houses receive 9,320 lev (4,758 euros) per child per year, rising to 14,700 lev for the severely disabled.

“Unfortunately, we have to admit we have a problem with hiring staff,” said Minka Yovcheva, the social welfare director in the Sofia municipality.

“Most people who had been trained left when the actual work started. It’s hard to convince someone to stay with a salary of 500 lev.”

The carers at the home BIRN accessed undercover complained that they had to cook meals for the children overnight because there was no designated cook and they had no time during the day.

Under the programme, the children are supposed to see specialists – speech and language therapists, physiotherapists and psychologists – at specially-created day centres, in order to get them out of their houses and into the community.

But Yovcheva and other interviewees conceded this was not yet working.

“All the children had to be moved to the new houses and by now they should have been attending community-based day centres,” Yovcheva told BIRN. “The problem with the reform is that this did not happen, and now the children are paying a high price.”

Manolov, too, said that for over a year the children whose care he oversees had no access to the day centre, and that they still faced problems because of a lack of suitable transport and the fact he can rarely spare carers to accompany the children.

At the Benkovski house BIRN entered undercover, physical and speech therapists began visiting in May thanks to funding from a local non-governmental organisation called the Bulgarian Mothers’ Movement, its chairwoman Rositsa Bukova told BIRN.

Force feeding

In a study published this year, Lumos, a charity founded by Harry Potter author J.K. Rowling to encourage deinstitutionalisation, said most of the children were still not attending support services in the community.

“This leads to a situation similar to the institutional approach where the residents are forced to spend all their time in one place,” it said.

The Lumos study was conducted in cooperation with state authorities between October and December 2015.

The report noted improvements in height and weight, communication and independence skills and eating practices.

However, the report said Lumos experts had also observed continued practices of force feeding and of feeding children lying in their cots.

With two carers usually on duty for up to 12 children, the report said: “There is a tendency for meals to be reduced simply to the intake of a set amount of food in a set period of time.”

“You need a lot of meaningful care to allow a child to develop an active desire to chew food,” child psychologist Vesela Banova told BIRN. “Caregivers without the proper education are not capable of doing so, regardless of how well-intentioned they are.”

Banova took part in the process of rehousing children from Bulgaria’s Mogilino institution, which was the focus of the 2007 film Bulgaria’s Abandoned Children by documentary filmmaker Kate Blewett that triggered an international outcry.

 “The magic word is time. Time and a normal environment”

– Freddie Wools, Dutch expert in disability care

Noting that care workers had no specialist knowledge of how to deal with challenging behaviour, the Lumos study said it was possible that in some cases they were giving children medication in order to manage their behaviour.

It said that double the number of children diagnosed with epilepsy or schizophrenia were being given anti-convulsants, and that the use of neuroleptics – used to manage psychosis – “had increased significantly since deinstitutionalisation”.

The study also lamented the lack of equipment such as wheelchairs and walkers and of alternative methods of communication, such as picture boards or pictograms. Some children, it said, are left “in a non-stimulating environment where communication is entirely absent or is reduced to a minimum”.

Long shadow

The old institutions continue to cast a shadow over Bulgaria.

In a 2010 report, the Bulgarian Helsinki Committee said that 238 children had died in such institutions between 2000 and 2010. It suggested that at least three-quarters of the deaths were preventable.

In June 2013, the European Court of Human Rights found the Bulgarian government responsible for the deaths of 15 children and young adults at an isolated institution over the course of three winter months between 1996-97, when the government failed to heed warnings from the director over dwindling reserves of food and fuel.

More recently, however, the court in July 2016 ruled inadmissible a case brought by the Bulgarian Helsinki Committee over the deaths of two disabled girls, aged 15 and 19, in 2006 and 2007.

The court said the committee could not be considered an indirect victim or representative of the two children, raising doubts among rights groups over the continued search for justice for other victims.

Freddie Wools, a Dutch expert on care for people with disabilities, said that for those who survived, the legacy of the former institutions would be hard to reverse.

“All the children deinstitutionalised in Bulgaria, they are starting now already damaged so it will take a long time before they slowly develop to a relatively normal life,” Wools told BIRN in the central Dutch city of Apeldoorn, where he works for disability care experts De Passerel.

“The magic word is time. Time and a normal environment.”

A new care home in the town of Botevgrad, 60 kilometres northeast of the capital, Sofia. Photo: Maria Milkova.

De Passerel has trained Bulgarian care workers and provided advice on the process of deinstitutionalisation. The state-of-the-art De Passerel care facilities, where some residents staff a supermarket and bakery, provided the inspiration for the kitchens at the heart of the new homes in Bulgaria.

“It’s a family house, and what’s the heart of the house? The kitchen and eating together,” Wools said. “One of the basic principles we try to apply is that people feel at home.”

“A way to make people feel useful is to include them all kind of activities.

But Wools lamented that in Bulgaria’s case, there is “not enough experienced staff”.

“What was the purpose of deinstitutionalisation? To close down the institutions?” he asked. “Or was the purpose getting people the opportunity to have a better life? That was the purpose.  Building is an important condition, but just a condition. So now the process starts.”

Shortage of social workers and nurses

Denitsa Sacheva, Bulgaria’s outgoing Deputy Minister of Labour and Social Policy, said the process of deinstitutionalisation marked “a big step forward” but conceded that the standard of care varied across the country.

There was an “acute shortage” of social workers and nurses, she said, and some carers had been kept over from the old institutions, bringing with them old practices.

In an interview, BIRN asked Sacheva about the problems at the house this reporter gained access to and about the findings in the Lumos report. Sacheva said her ministry would develop a plan to ensure equal access to community-based services for the children, that it was considering paying social workers overtime from 2018 and that funding for the new homes for disabled children would increase.

Sacheva said the government was about to launch a 28-million lev (14.3 million euro) project to improve the care provided by social workers.

“In general, for a long time the public in Bulgaria looked down on social work, underestimating how important this profession is,” she said.

Following publication of the Lumos report, Sacheva said authorities had since made a number of checks on houses and issued recommendations.

“Deinstitutionalisation is not just a process of building housing units but also providing new quality formal care,” Sacheva said. “There is no way all this can happen at the same time. There is no option to invest in people, in infrastructure, and in improving formal care all at once. These things happen in stages.”

“For a long time the public in Bulgaria looked down on social work”

– outgoing Deputy Minister of Labour and Social Policy Denitsa Sacheva

Bulgaria’s experience may provide lessons for other countries in the Balkan region yet to embark on deinstitutionalisation – countries such as Serbia, for instance, which aspires to join the European Union.

Human Rights Watch, in a June report on Serbian institutions for disabled children, cited cases of segregation, neglect, lack of privacy, use of inappropriate medication, lack of access to education and limited freedom of movement.

Moving to harmonise its legal framework with that of the EU, Serbia has in recent years introduced a number of new legal measures to safeguard the rights of all children. But despite the progress, Human Rights Watch said, children with disabilities were still being placed in institutions. The Serbian government disputed many of the report’s findings.

Reunited

The difference that specialised or family care can make is enormous.

More than 300 of Bulgaria’s disabled children have been adopted, mainly by parents in the United States, Italy, France, Germany, Spain and the Netherlands.

Seventy-eight children were returned to their biological parents, some of whom were unaware their children were still alive.

Tenyo and Tsonka Tenevi were living in Greece when, in October 2010, a letter arrived from Bulgarian authorities informing them that their daughter, whom they assumed had died, was being moved to a new institution. They returned to Bulgaria, determined to take her back.

In their home in the eastern Bulgarian mountain village of Byala, Tenyo recalled the day they were reunited.

“As soon as we entered the building, the director warned us – ‘don’t get scared of what you’re about to see,’” he said. Tenyo described an emaciated child with a swollen head “staring at a single point”.

“My heart broke when we saw her.”

Teodora was born in 2003 with severe disabilities including Spina bifida, a birth defect in which the backbone does not fully close.

“The doctor told me that I wouldn’t be able to take care of the baby at home and it wouldn’t make sense to take her home anyway,” Tsonka said.

Tenyo never saw his newborn daughter. “All they gave us was a birth certificate and then we had to sign several documents giving up our parental rights,” he said.

Tsonka Teneva with her daughter Teodora when they were reunited in 2010 under a programme to move disabled children out of isolated state institutions. Photo courtesy of Tsonka Teneva

The couple tried in vain to track down their daughter in the months that followed but eventually gave up and spent the next seven years believing she had died.

Reunited, Tenyo said Teodora hugged her mother. “She clutched her tight and did not let go. She couldn’t move her body, only her hands. And she hugged her as if she could feel it was her mother she was hugging.”

Teodora has since improved significantly, putting on weight and gaining height. But her parents struggle to make ends meet on an income of 300 euros per month, just under half of which comes from Teodora’s state disability allowance.

The state covers the cost of ten days of physiotherapy per month, but Tsonka said they can only afford to go three times a year due to the cost of accommodation and the long drive through the mountains.

Pace of change

Prejudices, too, endure.

According to a 2014 report by the Bulgarian Helsinki Committee, not one of the severely disabled children moved out of the old institutions since 2010 was adopted by a Bulgarian family.

Worryingly, too, the practice of doctors telling parents to abandon disabled children continues.

“It seems like this has been going on for years,” said Tony Marinova, who heads the Association of Parents of Children with Down’s syndrome in Bulgaria. “I’m in touch with parents across the country. Almost every month a new family reaches out to our association.”

Marinova said progress was being made. “It is not significant, but things are slowly changing for the better.”

“People change, but one of the problems when it comes to abandoning these children is not only the attitude of doctors but also the attitude of the family and relatives who grew up with prejudices… towards the syndrome.”

At the new care home in Sofia that BIRN gained access to, the two carers struggled to cope. One of them tried in vain to feed a child who appeared locked in a foetal position, motionless.

“She spent all her time in this position at the institution where she lived,” the carer said. “When she came here she could not walk. It took us several months to teach her but we couldn’t convince her not to fold up like that.”

Wools, of De Passerel, said Bulgaria was at the start of a long road.

“Deinstitutionalisation is not bringing children into a small group home and thinking, ‘now we’ve finished.’ No, then starts the process of deinstitutionalisation here,” he said, pointing to his head.

“Ten years ago I said I think ten years must be enough. Now, ten years later, I say okay, twenty years must be enough… Actually, you need almost a generation.”

Maria Milkova is a journalist working for the Bulgarian broadcaster NOVA TV. This article was produced as part of the Balkan Fellowship for Journalistic Excellence, supported by the ERSTE Foundation and Open Society Foundations, in cooperation with the Balkan Investigative Reporting Network

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