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Video: Kids hurt by institutionalization

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NBC News
updated 8/29/2008 6:54:56 PM ET 2008-08-29T22:54:56
Reporter’s Notebook

As the geopolitical struggle over the independence of Kosovo from Serbia continues, with war never far from the minds of many, there is an unseen class of people in Serbia whose lives are at risk regardless of the outcome.

They are the estimated 17,000 mentally disabled children and adults who for decades have been systematically warehoused in remote, government-run mental institutions. They are facilities that are unknown to most Serbs, let alone the rest of the world — and perhaps for good reason.

In the course of a yearlong investigation, we gained unprecedented access to institutions across Serbia and found alarming, sometimes life-threatening, conditions. Adults and children — some with only mild symptoms of Down syndrome or cerebral palsy — were crammed into fetid rooms and metal cribs, their bodies often emaciated, atrophied or disfigured. Some had been confined to cribs for years, their bodies conforming to the small space inside the railings.

In some cases, residents who appeared to be children were actually young adults whose growth had been stunted by years of institutionalization, a telltale sign of extreme neglect, experts say. (See Ann Curry’s interview with Dr. Charles Nelson (on this page) , a Harvard Medical School professor who explains his research into growth stunting in institutions.)

But perhaps our most disturbing discovery came after staying overnight at one of Serbia’s most overcrowded institutions, in rural Kulina. There, tucked away in the woods, we saw first-hand how children are routinely tied to their bed railings for long stretches of time. It’s a widespread practice in Serbia, according to Laurie Ahern, associate director of Mental Disability Rights International (MDRI). The Washington-based group has been investigating conditions in Serbia’s mental institutions for four years.

“People are just prisoners in these cribs, in these beds,” Ahern says. “We found people being tied up not for ten minutes, but hours.  Four, five, six hours — and day after day after day.”

The institutions’ rationale for tying down children, Ahern says,  is a lack of staff and resources. And without being exposed to any meaningful stimulation, many of the children are prone to hurting themselves when they’re unattended.  “They are hitting themselves. They are biting themselves. I've seen children gouge out their eyes, rip off pieces of their ears, punch themselves till they're black and blue.”

'Children need human touch'
We saw a disturbing example during our overnight stay at the Kulina institute, where a young boy, maybe 12 years old (though it’s tough to tell), was punching his ears so hard that they bled. His metal crib rattled with each blow.

There is a simple biological explanation for this kind of self-abuse, Ahern explains. “Children need touch. Children need human touch.  Food isn't enough.  A child needs stimulation, a child needs love, a child needs to be touched.  And when they're not they would rather feel pain than feel nothing.”

It’s a gruesome cycle: isolation leading to self-abuse leading to restraint and more isolation. 

The horrors of life inside these institutions are chronicled in MDRI’s recent report, Torment not Treatment: Serbia’s Segregation and Abuse of Children and Adults with Disabilities. What sets Serbia apart from the way most other governments treat the mentally disabled, MDRI notes, is the shear number of children and adults who are tied up. Under international law, the group argues, the practice fits the legal definition of torture.

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“Tying a child and leaving them indefinitely in a crib, tied in a crib, is inhumane and degrading treatment and torture,” Ahern says. 

A culture of shame
Serbia was once a part of the former Yugoslavia, which began breaking apart in 1991. The mental institutions are remnants of the country’s communist past and symbols of a deeply ingrained prejudice against the mentally disabled and their families.

It’s a culture of shame that has changed little from one generation to another. Serbia’s medical establishment continues to advise parents to put their mentally disabled newborns into institutions, and the government provides virtually no support for those who choose not to. As a result, parents are left with an agonizing choice: Keep their children at home and face financial ruin or give them up to live out their days in government-run institutions. Few families know about the severe conditions in most facilities.

Once parents make this fateful decision, Ahern says, a disabled child’s fate is sealed.

“These children are there for life,” she says. “Once you get into an institution, unless you're lucky enough to have someone come and take you out, you're there for life.”

The staff in these institutions, overworked and underpaid, told us that families rarely visit. Professional training for the attendants is rare. Even so, many do what they can to add a modicum of meaning to the children’s lives. Attendants at the Kulina institution, for instance, told us that on holidays and birthdays they sometimes call the more aware children and, posing as their mothers, offer words of comfort.

One dedicated and highly frustrated director of an adult institution in the town of Kovin, Dr. Milan Milic, risked government retribution by showing us what he acknowledged were “inhumane” living conditions at his facility. Hundreds of residents are crowded into crumbling, moldy buildings constructed in 1912. To compensate for lack of treatment, he says, patients are given higher doses of sedatives and other medications.

“I don’t want to continue this way,” he said as he guided us through the decrepit buildings, where the smell of urine and cigarette smoke can be overwhelming.

Feeling the pressure
The government is being called to account for these conditions. Though MDRI credits the Serbian government for adopting progressive policy goals for caring for the mentally disabled, its report states that “actual practice violates Serbia’s own law and policy on a large scale.” It concludes: “The government of Serbia has no plan or program to end the improper detention of thousands of people with disabilities – or to end the abusive treatment within its institutions.”

A handful of groups in Belgrade are trying to make changes in the way the government and Serb society treats the mentally disabled. Among them is a group called Familia, which is advancing the idea of foster care replacing institutions for mentally disabled children. There’s good reason. Evidence clearly shows that disabled children improve dramatically when they are taken out of institutions and placed with families. But, says Familia’s Dr. Maida Stefanovic, the foster family concept is still foreign to Serb society.

“It is very difficult to find a foster family for children with disabilities,” she laments.   “And the most difficult is to find [a] foster family for children with conduct disorder[s].  And I don't know why, but people are very scared about that. And I think even professionals.” The government, she says, needs to make community integration of disabled people a priority.

When we sat down in Belgrade to interview the Serbian Minister of Labour and Social Policy, Rasim Ljajic, he was new to the job and said he had not yet visited the institutions. When we showed him video of a child tied up and others, bone thin, left alone cribs, he didn’t attempt to defend the practices.

“These conditions are far from humane, far from humane,” he said through a translator. “Well below any acceptable level. Our general policy is to close down institutions like the ones you visited.  They should not be existing.”

He told us that his office is working with rights advocates to develop ways to assist families in need but that the Serbian government lacks the necessary resources to fundamentally change the system. That, he said grimly, could take years.

But mental disability advocates like Ahern don’t accept a lack of resources as a reasonable excuse when it comes to protecting mentally disabled adults and children.

“Lack of money is not a reason not to protect a person's human rights,” she said,   “The state has an obligation.  They took those children.  It's not like those children can walk out and leave.  They're prisoners in those institutions and the state is responsible for what they're doing to people.”

Note: Our initial reports on conditions in Serbian mental institutions and the release of MDRI’s report appeared on NBC Nightly News and the TODAY show last November. The government immediately announced its own investigation, though from the start it took issue with MDRI’s use of the word “torture.”  Days later, representatives from the European Committee for the Prevention of Torture flew into Belgrade to begin their own investigation. The committee has not yet reported its findings.

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