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Serbia's horrific institutions a relic of the past

A generation ago, mentally disabled people were often quietly sent away to bleak  government institutions, left to live out their days on the isolated fringes of society. Halfway across the world in Serbia, the conditions haven't improved.

A generation ago, mentally disabled people were often quietly sent away to bleak  government institutions, left to live out their days on the isolated fringes of society.

But the scenes you are watching are not from that era, they're playing out now, day after day, halfway across the world.

Children and adults given up by their families. Languishing behind crumbling walls and rusted bars. 

Laurie Ahern: Those people are virtual prisoners, virtual prisoners there until they die.

Where a society's most helpless people are shunned and warehoused.

Ann Curry: She wasn't harming anyone, so why restrain her?

Tonight, an investigation that takes us inside a realm forgotten by time. To a country where being a mentally disabled child often means a life sentence in an institution: Serbia, once part of the eastern European country formerly known as Yugoslavia.

After a brutal civil war tore Yugoslavia apart in the 1990s, Serbia emerged and soon drew more international attention as its president, Slobodan Milosevic, presided over a deadly government campaign to purge ethnic Albanians from the region.

NATO bombing led to the eventual withdrawal of Serbian forces. Milosevic died in prison as he stood trial for crimes against humanity.

Today, a new Serbia is emerging from the shadows of its past. The capital, Belgrade, is a city of colorful markets, thriving  plazas, and rich history. It is a resilient country moving forward.

But as we travel through the cities and back roads of Serbia, we discover a remnant of the country's past ...unchanged, and unknown, for decades.

And we learn of the fateful choices many parents here are often forced to make about their disabled children. Parents Like Dusica.

Nine years ago, she was a radiant expectant mother.

Dusica: I took it really well, and felt wonderful at that time. That was actually the most beautiful time of my life.

Ann: I can see there are tears in your eyes when you think of it. Why?

Dusica: Because we had - I mean we were expecting - a baby, we had wonderful, big plans, that later on, well, vanished.

Vanished because complications during birth left her son, Stefan, with cerebral palsy and severe blindness.

Now there was an agonizing choice to make: keep him at home for the rest of his life, or let him live out his days in an institution.

It was also the choice Srdjan, a sturdy, tough-minded truck driver, was forced to make soon after he got word that his first child, Uros, had Down Syndrome. The news overwhelmed him.

Srdjan: My feeling at that moment, I was completely drained, didn't speak.

Though the diagnoses were different, the advice from both of their doctors was the same. The children, they said, would be better off in mental institutions.

Ann: When the doctor suggested you could give up your child, what was your reaction?

Dusica: I was dumbfounded.  I was stunned that someone could even come up with the idea that I would want something like that.

But her doctor's advice is common here in Serbia. It is among the countries where disabilities still cause deep shame, and parents are urged to put mentally disabled newborns in remote government institutions. And with money tight and little government help at home, most parents hope the institutions are the best option for their children.

It's a painful decision that, for parents like Srdjan, is hard to face.

Ann Curry: And when you looked at your boy, what did you see?

Srdjan: No. I couldn't.

He accepted/took a doctor's advice and gave up his son to the state without ever laying eyes on him.

Ann Curry: You didn't look at him?

Srdjan: No.

Ann Curry: You never saw him?

Srdjan: No, I couldn't.

He's lived with this inner conflict for eleven years now. A lingering love. An unseen son never far from his mind. Eleven years. Where is his boy now? What is life like for him and thousands of other disabled children?  To find out, we would have to travel to the far reaches of Serbia . Get beyond the gates ...  And inside wards that few outsiders have ever seen.

Ann Curry: I can hear the children.

Nothing could prepare us for what we would find.

A culture of shame surrounds people with mental disabilities here in Serbia. It's an unchanged remnant of the country's troubled past. The government offers little help to families with disabled children. So mothers like Dusica, who gave birth to a son with cerebral palsy, face an unimaginable choice: keep their children at home and risk financial ruin, or send them away to a remote state institution – for life.

Dusica: Every fate, every story is different. Every one of those parents carries their own pain.

Hers would be an agonizing decision.

Srdjan,  a hard-working truck driver, trusted the advice of his doctors 11 years ago and gave his first son to an institution. Still, he lives with a haunting love for a child he has never met.

Srdjan: As for the scars that are left in me and my wife, we'll always have them.

He wonders about the fate of his boy. So do we. Where is he and where are the thousands of others like him? In a wary country like this, it is not easy to get answers. But NBC news gained unprecedented access to some of serbia's most remote mental institutions.

This is the Kovin Institution in central Serbia. Behind the walls of the compound, a patient lies motionless on the ground ... A disturbing glimpse of what is to come.

Dr. Milan Milic is the director of this institution.

Ann Curry: So you have about 600 patients now?                             

Dr. Milan Milic: Right now about 600.

Ann Curry: Men and women?

Dr. Milan Milic: Men and women.

Across the grounds, we see women lined up for sedatives and other medication. The doctor says higher doses compensate for treatment they're unable to provide. Up dark staircases, we enter closed wards few outsiders have seen.

Ann Curry: So this is the room where the most severe cases are kept?

Residents here are locked inside from morning to night. Men sleep in crowded rooms on cots lined up one after another. The walls are crumbling. The windows' bars rusting.

We're struck by how open the director is as he shows us around. The reason he's willing to do it, he says, is his strong belief that conditions here must be exposed. But he asks us to protect the privacy of his patients.       

Dr. Milan Milic: I don't want to continue this way. 

Ann Curry: What do you wish – what do you wish you could give these patients that you cannot give them?

Dr. Milan Milic: Most - human living condition.  This is a - this is not the condition for humans to live in.

Ann Curry: You just said, "This is not conditions that human beings should live in."

Dr. Milan Milic: Yes, yes.

The conditions take their toll on the patients. A commotion soon breaks out in a hallway. And we see for ourselves what happens when stressed residents become aggressive. 

Attendants surround a woman.  She is quickly moved to a room and strapped to a bed with leather restraints.

Ann Curry: She wasn't harming anyone, so why restrain her?

Agitation, he says, is often the start of physical agression.

Dr. Milan Milic: This is the first step.

Ann Curry: How long will she be like this?

Dr. Milan Milic: Let's say about two to six hours -  not -  not more. 

Ann Curry: Do you think - do you think that the conditions here increase the aggression?

Dr. Milan Milic: Yes.

Ann Curry: So you have to restrain them more?

Dr. Milan Milic: Yes.

Ann Curry: Why are you willing to speak about this?

Dr. Milan Milic: Because I'm stupid.

Ann Curry: You think that you might get in trouble for speaking to us this way?

Dr. Milan Milic: It will not be the first time.

Ann Curry: You can't be silent.

Dr. Milan Milic: No, no, I can't be silent.

At another institution, in this locked ward, gaunt men and women wander through dim halls like ghosts. Walls are rotting. Flies are everywhere. Feet stick to filthy floors.

This is a shower room where groups of adults are hosed down. Many spend their entire adult lives here.

Laurie Ahern: Those people are virtual prisoners there until they die.  They'll never get out.

Laurie Ahern is Associate Director of Mental Disability Rights International, a Washington-based group that has been investigating Serbia's mental institutions for four years. She accompanies us to another institution in a rural part of Serbia, Stamnica.

Adults and children are put here. Some might say warehoused.

This is Ward Two.  Adult women here crowd on benches in the same small room, day after day.

When Ahern visited nine months before in the dead of winter, her team took this videotape showing the same people huddled together. Some appeared frightened and vulnerable. An overwhelmed and underpaid ¶attendant tries to manage amid the chaos. When we visited the children's ward across the street, we got a sense of what life might be like for Srdjan's son, and others like him.

The freshly painted walls belie the reality of what we see. Children languishing in crib after crib. And we discover something startling about some of these boys and girls: They have stopped growing.

Laurie Ahern: This child is so starved for attention and love.

Katarina is nine. She has Down Syndrome.

Ann Curry: You don't want to let go of my finger, do you?

The staff told us that tiny Jasmina is actually a teenager.

Ann Curry: This is a 15-year old girl?

Dr. Charles Nelson: This is called growth retardation, or failure to thrive.

We showed some of our findings to Dr. Charles Nelson, a professor of pediatrics at Harvard Medical School who specializes in the effects of institutional life on children.

Dr. Charles Nelson:  For every two months they spend in a bad institution, they lose one month of linear growth.  So, you can imagine over the course of a year that a child who should be growing like this might be growing like this.

Ann Curry: Explain that to me.

Dr. Charles Nelson: The brain produces a hormone that allows you to grow.  And the brain doesn't produce that hormone when you're under such severe conditions of deprivation.  A classic sign of child neglect is kids who don't grow.

We found child after child suffering from growth retardation. But one patient stood out.

Ann Curry: This is a 21-year-old boy who's never been let out of the crib.

His body seems frozen. The staff tells us that after infrequent visits from his mother, Nico sheds tears.

Ann Curry: And when I touch him, I can tell he knows I'm touching him.

Laurie Ahern: Uh-huh.  Uh-huh.

Ann Curry: I blinked at him, and he blinked back at me.  Repeatedly, whenever I blinked at him.

Ann Curry: The horror is that there is someone in there--

Laurie Ahern: Inside.  They're abs--

Ann Curry: Who knows--

Laurie Ahern: Yes.  Yes, yes.

Ann Curry: - and who can't speak.

Laurie Ahern: Right, right.

Many parents like Srdjan have little idea about these conditions when they're urged to give up their disabled children.

Srdjan: Even the medical workers who worked in those institutions told me it is better to have those children where they're all the same.

And given the circumstances, Srdjan still trusts that an institution he has never seen is the best place for a son he has never met.

He tries not to question his decision.  Still, we wanted to see if we could find out what kind of life his son –  and so many others – lead.

Our investigation takes us many miles from Belgrade, past villages and farms, to one of the most notorious institutions in Serbia. This is the Kulina institution. The few human rights advocates who have been inside tell grim stories. We soon understand why.

Nearly 600 hundred children and adults live here. We find full-grown men crammed into cribs. A half-naked woman left alone in a tiny room. And stick-thin children alone, some with bodies contorted and atrophied from years of neglect.

There is one part-time physical therapist and no staff psychiatrist for all 600 patients. Meager pay and dismal conditions make it difficult to hire workers here – let alone well-trained workers. That may explain why early one morning, without an official escort, we find this: A little boy tied to his crib, and still tied later that afternoon.

Laurie Ahern found the same thing here and in other institutions, time and again, both children and adults. 

Laurie Ahern: We found people being tied up not for ten minutes, but hours. Four, five, six hours and day after day, after day.

Laurie Ahern: It's torture.

Laurie Ahern: Once you get into an institution, unless you're lucky enough to have someone come and take you out, you're there for life.

Ann Curry: ' Til death?

Laurie Ahern: 'Til death, exactly.

Day turns to night at Kulina ... Still, there is never really any peace.

A skeleton staff tends to a child struggling to breathe, and a boy who repeatedly punches his ears so hard they bleed. The same scenes play out week after week, year after year.

Is this what life is like for Uros, the son Srdjan gave up with the hope that he would be well cared for?

Srdjan: I want him to live life normally as much as he can.

And how does the government explain the treatment of thousands of its most vulnerable people?

Ann Curry: Are these conditions, in your mind, humane?

We're about to find out.

When Srdjan learned that his child had Down Syndrome, he felt he had little choice other than to send him to an unknown institution. He's never held him, never heard the sound of his voice, never met him. But knowing what we discovered about conditions in Serbia's mental institutions , we wanted to learn what life was like for his son.  We did. We find Srdjan's son, Uros, in what human rights advocates call one of the worst institutions in Serbia.

The conditions here have clearly taken their toll. He spends most of his days in a crib.  He is 11, but looks like he may be six. And he still needs help walking.

Ann Curry: I'm surprised at how small he is.

For a brief time every day, he sits at a table and plays with the same Lego blocks. His eyes are vacant. Attendants tell us he rarely shows emotion. He cries, rarely smiles and never laughs. The meager, overwhelmed staff tends to him and many others the best they can. On holidays and birthdays, they sometimes call the more aware children, posing as their mothers, offering words of comfort.

Ann Curry: You do that? You pretend to be their mother.

Nurse: Da. [nods head yes]

When we talk to Uros's father, Srdjan, 150 miles away, he says he hopes that he can someday rise above his anguish and do what we have done: Meet his son.

Ann Curry: I have several pictures here.

We ask if he would like to see some pictures we took.

Srdjan: OK, OK, yes.

Ann Curry: Of your boy.

It's almost too much for him.

Ann Curry:  I think to anyone listening - to any parent listening, it is very touching how much you care for this son you have never seen.

Srdjan: Da.

But what happens when parents are unwilling to put their mentally disabled children in institutions?

Remember Dusica? Like Srdjan, when she discovered her newborn son, Stefan, had cerebral palsy, she was urged to put him in an institution. But unlike most parents here she refused. She kept her son, and her decision cost her dearly. Many in her family shunned them. Her husband abandoned them.

Dusica: He didn't accept Stefan, saying his world had fallen apart. It probably did. He certainly couldn't be having a harder time now than me.

Stefan is nine now... A robust boy who likes Mcdonald's food. Dusica devotes nearly every waking hour to him.

Most days, he goes to a special school for two hours -- the only time dusica can work.  A van brings him home, where she wheels him up flights of stairs, into an elevator, down more stairs.. And into their modest one-bedroom apartment in Belgrade.

With little government help, each day is a struggle.  Still, from the day he was born, she never doubted her choice.

Ann Curry: What gave you strength?

Dusica: Stefan. Stefan ..  is my engine.

Ann Curry: He's enriched your life.

Dusica: A lot. A lot. In a sense, every movement of his gives me strength. Every smile of his, every new word of his is for me the most beautiful thing in the world.

Mental disability rights advocate Laurie Ahern says the Serbian government is responsible for the hardships faced by these families.  She says alternatives to crowded, understaffed institutions are vital.

Laurie Ahern: It's not like those children can walk out and leave. And if family can't keep a child then, you know, the next best thing would be a foster care situation or maybe a small, small group home. 

Ann Curry: How does Serbia compare to other nations where you've seen this sort of dilemma?

Laurie Ahern:  I have to say that the level of tying children down and confining people to cribs and confining adults to beds who can't walk, I've never seen it to this level.

Ann Curry: Anywhere in the world?

Laurie Ahern: No, no. The state is responsible for what they're doing to people. The state is absolutely responsible.

One of the government ministers in charge of the institutions is Rasim Ljajic. He told us at the time that he was new to the job and had not yet visited the institutions. So we showed him some of our footage.

Ann Curry: Are these conditions, in your mind, humane?

Minister: These conditions are far from humane. Far from humane, well below any acceptable level.

Ann Curry: So, you agree that it is hurting the children, hurting these people with disabilities to be in these institutions.

Minister: Of course, of course. Our general policy is to close down institutions like the ones you visited.  They should not be existing.

Ljajic says the current Serbian government inherited the problem and doesn't have the resources to fix it. But, he says his office is working with rights advocates to develop ways to assist families in need.

Ann Curry: How long is this going to take? Years?

Minister: Sadly, yes, yes.

Ann Curry: So, in the interim, should doctors be stopped from telling families to give up their children?

Minister: Absolutely.

Off a wooded path, on a hill overlooking a peaceful valley, stands a tattered, overgrown cemetery. This is where the Kulina institution buries those who die here, young and old. The town says there is not enough room in its cemetery.

Priests won't preside over funerals here because there is no money to pay them . Some graves are unmarked. No one knows how many are buried here. Alone in life, alone in death. They are the forgotten.

Laurie Ahern: The idea of being locked away and the idea that somehow these people, that their lives aren't valuable, that they are less than human, because they were born with a disability. It's horrendous.  And it's awful. And it shouldn't happen.