A Bulgarian care center for disabled children excels

A Bulgarian care center for disabled children excels

The New York Times

VARNA, Bulgaria — State institutions in Eastern Europe devoted to the care of children and the disadvantaged are most often the subject of negative news stories in Western media.

So after the British Broadcasting Corp. aired an upsetting documentary last year about conditions at a home for mentally impaired orphans, advocates for the disabled were relieved they could focus attention on good practices and all point to Karin Dom, a nonprofit day care center for children with mental and physical disabilities.

Located in a charming villa built in 1908 on Bulgaria’s Black Sea coast, with balconies overlooking the sea and surrounded by a shady park, the center offers care, and hope – rare in a country that is perhaps the poorest and most corrupt in the European Union.

“I get help here and I also feel at home,” said Mariana Atanasova, whose son Ioan, 4, gets physical therapy for legs deformed by the disease. “I have felt love, respect and attention here, and I’m not making compliments.”

International human rights campaigners say that neglect, rather than care, often characterize Bulgarian social institutions. The institutions are often tucked away in remote and poor regions, and the homes are seen as sources of jobs for locals rather than places for nurturing patients.

“The staff don’t see them as people, but as a substandard species who are fine with food and water,” said Judith Klein of the Open Society Foundation’s Mental Health Initiative in Budapest, a Karin Dom funder.

“Here it is fundamentally different from everywhere else,” said Lyuba Manolova, 55, a physical therapist who has worked at Karin Dom since it opened in 1996. “Everything here is centered around the free will of the child. Because if a person is never able to make choices, he has no hope of ever living a meaningful life.”

The center is the brainchild of Ivan Stancioff. Descended from a long line of diplomats, Stancioff, 79, returned to Bulgaria in 1990 after almost 50 years of exile and a career in business to serve as foreign minister, and then as ambassador to Britain and Ireland.

Stancioff donated his family’s restituted home to house Karin Dom, named after a cousin who had cerebral palsy. He was quick to attribute any achievement to the dedication of 20 staff specialists and “the fact that we insist on a lot of training, new ideas and moving ahead.” The specialists get the standard wages in the sector of about €200, or $280, a month.

On a recent visit, the center’s rooms appeared well organized and cheerful, stacked with thought-provoking toys and games, and physical therapy devices. Children’s names, pictures and artwork were posted on the walls along with task- and progress-markers.

Besides aiming to integrate disadvantaged children more fully into society, which is standard practice in the West but rare in the Balkans, Karin Dom also advises parents on how to care for children at home so they do not need to send them to institutions.

Training is also on offer for staff from state social homes, one of the only places in Bulgaria that teaches modern educational and therapeutic practices. Specialists from Karin Dom have also trained social home staff in Macedonia and Montenegro.

Places like Karin Dom are “extremely rare,” said Slavka Kukova, a human rights lawyer and researcher in Sofia.

“The fact that they really have an individual approach puts it on par with best practices anywhere,” said Kathy Sinnott, an Irish member of the European Parliament, mother of 16 children including an autistic son, and an activist on disability issues.

After 12 years of quiet results, the mission of Karin Dom got a boost from an unexpected source, the BBC film, which was first aired in November 2007 and was about a home for children with mental disabilities in the village of Mogilino.

The film, which has been broadcast on television in the Netherlands, Belgium, Ireland, Finland, Canada and Australia, inspired viewers to donate £200,000, or $290,000, to a foundation later established by the filmmaker, Kate Blewett. Part of that money is going to hire seven new full-time therapists at Karin Dom to form a mobile training unit for homes around Bulgaria.

The Bulgarian government is still scrambling to respond. “Now the government has admitted the problem, and is trying to do something to solve it,” said Mariana Nikolova, the executive director of Karin Dom. “But this will be a very slow process.”

On a recent afternoon, 10 specialists from Sofia social homes were observing rehabilitation, including speech and physical therapy, and psychology. They were the first of 50 who will receive three days of training. It was the first time the Sofia municipality had paid Karin Dom for training.

“Here it’s a bright child’s world,” said Tatyana Dimitrova, 56, from the Sofia group. In her home, which she wouldn’t name because she had no permission to speak, “it’s like a military barracks.”

Dimitrova said comparisons between state institutions and Karin Dom, or state institutions and Western countries, were unfair because of the poverty of the Bulgarian state. Karin Dom operates on private donations and also EU-funded projects. “We also work hard and care about our people,” Dimitrova said. “With the little we have, we try to create as much as possible.”

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