Ukraine's Forgotten Children

'Ukraine got its independence from the Soviet Union in 1991.

'Under the Soviet system, a mother could abandon her newborn baby

'in the maternity ward by simply signing it over to the state.

'Today, the legacy of that system is that state care has become

'the norm for children with any kind of disability.

'There are ten times as many children in state care in Ukraine

'as in England.

'I have come to find out, after two decades of independence,

'how disabled children are cared for in institutions today.'

I can see from looking at her that she's in a very chronic condition.

You know, she could die.

'I also want to meet young people who have grown up in state care and hear their stories.

'Under the Charter of the United Nations, of which Ukraine is a founding member,

'everyone has basic rights, irrespective of sickness or disability.

'But, even when they grow up, many of Ukraine's orphans

'become trapped in the system, with no right of appeal

'and no right to have their voices heard.'

I don't understand what mentally incapacitated means.

She says, "They can take away your camera, get out as soon as possible."

'I want to know what life is like for the children of Ukraine

'who live and die in state care.'

It's so sad.

'As co-hosts of Euro 2012,

'Ukraine is keen to prove it deserves a place at the EU table.

'Around £9 billion, more than half of it public money,

'has been spent on stadiums, airports, trains and hotels.

'But, whilst money has been found for infrastructure in major cities,

'the budgets for the care of the weakest members of Ukraine's society have been under strain.

'In the last decade,

'the number of state-funded institutes caring for children

'has increased, as families have felt the strain of the country's economic collapse

'following independence from the Soviet Union.

'For the next six months I will be filming

'the lives of a group of children in an institute in southern Ukraine.

'I've filmed in orphanages before, in Bulgaria and in Greece,

'and witnessed distressing scenes of neglect and abuse.

'But it's all too easy to criticise individual carers.

'What I want to understand here in Ukraine is how the system as a whole treats disabled children,

'so I've come to an institute with caring staff.

'This home houses over 100 children of very mixed abilities

'from the age of five to adulthood.'

Davay ruki.

'Ten-year-old Lyosha is a bright and happy child.

'Though he has no hands or feet, Lyosha is fiercely independent.

'His mother gave him up to the care of the state when he was a baby

'and he has been at this institute for the last six years.

'This makes him what is called in Ukraine a social orphan.

'This means that, like so many of the children here,

'his parents are still alive but are unable or unwilling to care for him.

'Lyosha is proud of the fact he makes his own bed

'and won't allow the carers to help him.'

And he goes to the toilet himself.

Oh, it's Katya!

'Katya is another social orphan.

'She also has living parents

'who signed her over to state care as a baby.

'She's been here for 18 years.

'She grew up unable to walk.

'It is only in recent years that she's become mobile.'

Misha, the teddy bear.

'Nikolai is the institute's director.

'He is clearly very committed to those in his charge.

'The trouble is, chronically sick children are sent to the institute

'and he simply does not have the qualified staff or the medical facilities to look after them.

'Ukraine has the worst HIV/AIDS epidemic in Europe

'and one of the fastest-growing epidemics in the world.

'Among his children,

'Nikolai has the challenge of caring for an HIV-positive child

'who the carers are scared to look after.

'Ideally, Nikolai would like to see all his children growing up in a family,

'but so far not a single child has ever been adopted

'from this institute.'

-You see, this is formal and official.

-Yeah.

'Nikolai despairs that he is sent children who have multiple problems.

'Six-year-old Sasha is one of those children.

'His weight is dropping off him

'and Nikolai is at a loss as to what to do.'

He's so tiny, isn't he? He's so tiny.

Sasha's parents left him behind at the maternity hospital

-because he had so many problems.

-Uh-huh.

-So many health problems.

He doesn't like to be touched.

Also he's got something like hyperflexibility.

You know, when all the hips and joints can be twisted inside out.

I think you like being touched. Yes, I do.

You're a tiny thing.

'Olga is medically responsible for all the children here.

'It is hard to get qualified staff to work in remote institutes

'and she had retired when Nikolai asked if she would become the institute's doctor five years ago.

'She agreed, although she's actually a dentist.

'Nastya has been bedridden for years.'

Her rib cage is deformed

and it's impossible to feed her through a tube.

And her, basically, breathing channels

are very narrow and twisted.

Deformed from her birth. Oy.

Ahh, she's... Oh...

And she suffers from horrible bouts of epilepsy.

-How long has she been here for?

-Well, since she was five.

Does she have parents?

Yes, she is a social orphan.

Her parents have given up their rights and they've never visited.

'Nadia is ten.

'She has a large cyst on her head

'which means she cannot sit up or move around.

'She simply lies here, watching and listening.'

All her brain is in this cyst.

A zdyes v cherepye nakhoditsya...zhidkost.

And her skull...

Basically what is left in her skull is liquid, she says.

And just connective tissues,

but the whole of her brain is outside in this cyst.

She was seen by a consultant when she was still a baby.

Can you imagine being one of these children, Olga?

Can you imagine being him?

Just there all day every day, for maybe 20 years.

You know, or Sasha.

You know, Sasha's never going to get better because, you know,

at the end of the day, they are just left.

'When a baby is abandoned at birth,

'it's placed in a baby unit up to the age of three,

'then moved to a children's home until five, before being

'passed on to an institute like Nikolai's until adulthood.

'According to Nikolai, where you go as an orphan is a bit of a lottery.

'As a result, children who, with loving care, could have lived a normal life

'end up alongside those with quite severe disabilities

'and very different needs.

'How you get looked after is also pot luck.

'Most carers are untrained and, whilst some take an interest in the children they look after,

'others do the minimum their job requires, just washing and feeding the children.

'This institute has carers who do their best

'but, with a ratio of nine children per carer, it's not an easy job.

'Under the Soviet system,

'it was widely accepted that institutionalised care for disabled children

'was potentially better than parental care.

'Parents were considered ignorant in the field of raising children

'and, although it was accepted that parents had the right to bring up

'their own children, this was seen as the delegated right of the state.

'Today, disabled children like Lyosha

'invariably grow up with the state as their guardian.'

Da.

'Lyosha and Katya are the best of friends

'and spend a lot of time together.

'Their parents have never visited.

'The present government says it's in favour of deinstitutionalisation

'but, despite this, according to UNICEF,

'the number of children in institutions has doubled in the past ten years.

'Poverty, unemployment, alcoholism

'and drug use are the main reasons for children being abandoned.

'Around an hour's drive from the nearest town, this institute,

'like many in the former Eastern Bloc, feels hidden away.

'The living area for the orphans is divided into different buildings,

'separating the bedridden, the disabled and the adults.

'Nikolai has fought to secure extra funding for the children in his care

'and in fact this institute receives around 40% more per head than the average for the region.

'But when one of Nikolai's children has to go to hospital

'he must supply all the food, nappies and medication for the duration of their stay.

'Three very sick children recently arrived at the institute.'

No-one was hiding the fact that these kids were sent here to die.

Two of them have already died.

'Two quickly died but the remaining child, Margarita,

'is very unwell in the local hospital.

'We are on our way to see Margarita but we have to film secretly

'because Nikolai is anxious that she's not getting the treatment she needs.'

Basically the level of oxygen in her blood is very low.

This is the doctor.

He said that at the moment the state of this child is kind of...satisfactory.

If her temperature goes down, she will be sent in this condition back to the internat, which...

It's not a hospital. The internat is not a hospital.

I don't understand.

Why can't you have the responsibility

to try to keep the child in hospital until she improves,

with or without a temperature?

"I don't know. I don't decide."

MARGARITA SPLUTTERS

'A senior paediatrician joined us.'

I am not a doctor but I can see from looking at her

that she's in very chronic condition.

This child... You know, she could die.

So, whether she's got a temperature or not,

I cannot understand how two doctors could send her

out of the hospital to an institute where there's no medication.

Can you please try explaining this to me?

"This is not our level of solving problems."

So doctors don't make the decisions?

'Margarita has parents, as too do most of the children

'and young adults living at Nikolai's institute.

'When a child reaches 18,

'it is the norm to be moved to an adult institute,

'but Nikolai tries to offer as many as he can a continued life here,

'rather than letting the authorities take charge,

'scattering them across the country

'into big, unfamiliar adult institutes or old people's homes.

'Whilst filming with these adults,

'I became aware of a status in Ukraine that appears to hold young people in the system

'even when they are capable of living in society.

'Some young people are officially given the status of "incapacitated" by the court.

'An individual may be categorised as incapacitated if they are

'judged to be unaware of their actions or not in control of them.

'Most of Nikolai's adults have this status and for many of them

'I would not have questioned their need for long-term care,

'but it seems this status is also given to some who are

'quite capable of being integrated into society.

'Tatyana Makarova, a Ukrainian businesswoman

'and leading expert in the gas supply industry,

'has been trying to help orphans in Ukraine for over a decade now.

'Her mobile telephone number is constantly passed around the inmates

'as someone who will listen and try and help.

'She focuses on helping the incapacitated orphans,

'young adults who are held by the state in psychic institutes and old people's homes.

'Tatyana phoned the mobiles of two incapacitated young men

'she has been trying to help who are being kept in an old people's home.

'She asked them if they would be willing to meet with us secretly,

'as she knew they would never get permission to talk to us officially,

'because they are regarded as not being responsible for their actions.

'They agreed, and so we met them

'in a maize field near the institute for old people where they now live.'

How old were you when you were diagnosed as mentally incapacitated?

'Now in his mid-30s, Lyonya was first sent to the old people's home 15 years ago.

'But conditions here are not as bad as in the Novosavitski psychiatric home

'where Lyonya was confined in 2007.

'He claims antipsychotic drugs were misused there as punishment.'

What kind of work did you have to do at the institute?

How many of your friends also suffered this punishment?

What was the worst thing you witnessed?

'It's one thing to be mentally unwell and to need to live in an environment with carers for life

'but it's another if you are capable of independent living

'and you are held by the system against your will.

'We were about to talk to Lyonya's friend, Slava,

'also an inmate at the same geriatric institute.'

Is that a long way away, that person's voice and dog?

'The institute's director had got wind that outsiders were in the area.'

We don't have any rights because he is incapacitated.

OK, we'd better get the camera and go.

-We'd better shift quickly because...

-Yeah, they called the police.

-Have they done it already?

-They might just threaten, but it's better for us to go.

-Exactly.

But, erm, what...

Tak, nam podozhdit za predelu oblasti nado vyekhat, vy schitaetye?

'We called Tatyana.'

She says they are capable of anything.

They can call the police and they can take away your camera.

So what does she think is the worst-case scenario?

Kak vy dumayetye? Oni seychas nas nashli?

Tatyana says that they can lock them up

in an institution for mentally disabled

and give them more injections of aminazine and haloperidol.

I'm asking what we can do actually to protect them,

what she can do or what we can do, because we are really worried what will happen to them.

But they have her telephone number,

so she's the first point of contact for them, right,

-so they will get in touch with her if anything changes, correct?

-It's unpredictable, she said.

Tatyana says that basically

when orphans graduate from orphanages there is nowhere to go for them.

Nowhere to go. And she says it's very easy to tuck them away

in these sorts of institutions because they are...free labour.

Tatyana says any resistance from the lads

has always resulted in them being punished.

What I don't understand is why she seems to be fighting this battle alone.

Where's the attention of the rest of the country?

Ministers, government, NGOs.

Where is everybody else when it comes to this?

Tatyana says that, "I have appealed to so many institutions and people,

"and basically...no response. They don't care."

Has Tatyana heard anything from the lads since we left?

She tried to get in touch with those lads but she couldn't,

they don't answer their mobile phones.

She will keep trying

but, as it is at the moment, she doesn't know what's happening to them

and she says, "I am praying to God that everything will end well."

'Nikolai knows that many of his orphans are destined for

'the kind of institute that Lyonya and Slava live in.

'But for a small group of Nikolai's boys

'there is hope for a better life.

'Nikolai has selected some of his more capable

'as boys with the most potential to learn and to develop.

'He wants to prevent them from becoming

'yet more institutionalised adults, seen as incapable of learning,

'so he has plans to move a selected group into a house being renovated on the campus of the institute

'and educate them.

'Nikolai managed to get donations from Russia for the renovation.

'The Ukrainian government also contributed

'after Nikolai highlighted how things need to change.

'It's a huge responsibility to take on in such a remote place

'but Nikolai wants to start giving his children a better life

'and this is the first step.

'The boys will live and learn together side-by-side as an extended family.'

When you think about moving into the little house, what feelings do you get inside you?

Are you going to help when you're in the small house?

You'd like to help the staff?

'The boys will move into the group home in a few weeks

'but in the meantime life continues unchanged.

'Sergei is 15 and was handed over to the state by his parents as a small child.

'His notes say that he has been diagnosed with oligophrenia.

'This is a Soviet-era diagnosis, not recognised in the West.

'It translates as feeble-minded.

'Though his files also state that Sergei dreams of having a family

'and gets angry when he's ignored.

'He appears to be very capable

'and he has a real interest in anything technical.

'In the new group home,

'Sergei has been told that there will be a computer for him to use.

'Sasha is the leader of the boys moving into the group home

'and is very popular and caring.

'His file says that he suffers from hydrocephalus and a degree of idiocy

'but also notes that he is very cooperative and very helpful to the staff.

'With so many to look after and a lack of individual attention

'and stimulation, institutionalisation sets in,

'with the boys showing classic behaviour like rocking and self-harming.

'In 2006, when Ukraine ratified the UN Convention on Inhuman or Degrading Treatment,

'the government promised to create a system of independent monitoring of institutes within a year.

'But, six years later,

'human rights groups say that no effective system is in place.

'Around 80,000 children are thought to be in residential care in Ukraine,

'though official figures are unclear.

'Institutional life often lacks any real structure.

'There is little attempt to integrate the orphans into the local community.

'They tend to be hidden away from society, without education

'or developmental care and without sufficient stimulation.

'It's inevitable the children will go downhill.

'It's three months since we were last here

'and life at Nikolai's institute is particularly stressful

'because he has such very sick children to take care of,

'yet this is officially a non-medical establishment.

'Today, however, there's a good feeling around the campus,

'as Sergei, Sasha and the rest of the boys are rehearsing

'for the opening ceremony of the group home in a few weeks' time.

'Nikolai has just learned that a surprise educational assessment

'by the local authorities is taking place today

'and the children going into the group home have been named as those to be assessed.

'Everyone is worried that this assessment could jeopardise the move of some of the boys

'if they are categorised as not capable of learning.

'Sasha is the first and is very nervous.'

"Ahh."

Gromko, "Ahh."

-I yeshchye skazhi, "Aah."

-Ahh.

'Each of the rest of the boys is then assessed.'

What happens after these assessments have been made?

'The purpose of the assessment was not explained to Nikolai,

'nor was he told how the boys had performed,

'but hopefully all the boys will be allowed to move into the new group home as planned.

'Three months have passed since we were last in Ukraine

'and Tatyana has been continuing to fight for the freedom of the incapacitated.

'She has successfully managed to get a handful of young men

'out of the institutes where they were being held

'by arranging to transfer their guardianship.

'Tatyana has arranged for us to meet Boris.

'He is officially incapacitated

'but while he was living in an institute a worker, Zinaida, got to know him

'and, with Tatyana's help, was able to take over Boris's guardianship.'

-Zdravstvuytye.

-Dobriy dyen.

'Born in the Soviet era, Boris has never been happier

'than living here with Zinaida, who he calls Mother,

'and her mother, who he calls Grandmother.

'He is so very proud to have a family at last.

'His dream is to be rid of his incapacitated status

'so he can enjoy the basic rights of those living free in society.'

This is where Boris sleeps.

He is growing seeds here, you see.

'Boris has a friend, Misha, who is also incapacitated.

'They were in an institute together and Tatyana also found him a guardian,

'who has allowed him to come and stay with Boris.

'Boris had no idea he was incapacitated

'until Zinaida tried to become his guardian.

'Boris was an inmate of the same old people's home

'that Lyonya and Slava from the maize field still live in.

'Nikolai hopes that by giving some of his children the chance to live in a group home

'they may escape the kind of life in an adult institute

'that Boris had to endure.

'Today, the boys selected for the group home are moving in.

'It is a day of mixed emotions for Lyosha.

'He is starting a new life in a small group home just a few hundred yards away

'but he is leaving his best friend, Katya, behind.'

Poshli. Natashye, do svidaniya.

THEY SPEAK IN RUSSIAN

HE GASPS

HE SPEAKS IN RUSSIAN

'For the first time in their lives,

'all these boys will get regular schooling.'

DOG BARKS

'According to an independent sociological institute,

'at least 20% of those labelled as incapacitated

'are perfectly capable of independent living.

'While Boris waits for his next court date,

'he is enjoying sharing some time with Misha in the local community.'

Takiye dela.

'Tatyana feels that the fate of the incapacitated

'reflects a system that sees them as worthless throwaway people.

'It's been three months since we last saw Sasha.

'He is weaker now.'

He eats well but he's losing weight and they can't explain why.

I just find it astounding that a professional would look at him

and the state of him, and say, "You're fine.

"You can go back to the institute. You're fine."

MISHA LAUGHS

BANGING

'Regardless of the growing cyst on Nadia's head,

'she still manages to stay cheerful.

'Two of Nikolai's bedridden, Nastya and Margarita,

'are both back in hospital, having had a short spell in the institute.

'Nastya is due to be discharged in the next day or two

'but is in need of more nappies, so we head to the hospital with her supplies.'

Doesn't seem like too many doctors in here!

-Yes, doesn't seem like there's anybody here at all.

-No!

Ghost town.

'When we arrive, we can't find any staff.'

Have we lost her?

No, no, she's trying to find someone from the medical staff.

-Can you smell her, Olga?

-Mm-hm.

Just smells like sort of rotting skin.

Yeah.

Bless her.

She's due back to Nikolai's on Monday. So that's three days.

Nastya.

Nastya.

SHE BREATHES WITH DIFFICULTY Nastya.

She just can't breathe. Nastya.

I don't understand how she's alone, without anybody around.

I mean, we've just walked straight in here from outside.

-I just don't understand.

-Oy, Bozhe, Bozhe.

-Inna, she's a daughter of one of the nurses.

-OK.

And she said that they all left the building

and went to a different building to have a staff meeting.

-Right.

-So she's looking after the premises at the moment.

Nyet.

And Inna is an accountant. She's not a doctor.

How many children are on the corridor?

-15.

-Right.

'While we're at the hospital,

'Nikolai calls with some very bad news.

'One of the bedridden boys, who shared the same room as Nastya back at the institute, has died.

'He was just 11 years old.

'He was given up by his parents to the state,

'so Nikolai's job now is to bury him.'

What diagnosis do they give at the hospital as to the cause of death?

-He suffered from...hydrocephalia.

-OK, yeah.

Hydrocephalia, you know, it's swelling of the brain, yes.

And that's the official diagnosis.

But it's kind of strange because... Olga, for example, the doctor,

she told me that on Thursday they were able to play with him,

and this is not a child who looked like he was about to die.

He was not considered really sick.

'It is normal in Ukraine for an institute to have its own cemetery,

'but it feels less normal that it's not just the old who are buried,

'but so many young children, whilst in state care, are also buried.'

-More than 400 children are buried...

-From the institute?

-From the institute.

-Good grief, Nikolai.

-Three children died this year.

He was born on the 7th December 2000, and only on Thursday,

just a few days ago, they played with him, and one of the nurses,

she liked to play with him because he responded very well.

The whole of his short life, Nikolai says, was spent around a bed,

and outside, just a little bit of outside.

But otherwise he lived and died from his bed, didn't he?

-Because he was bedridden and stayed there for the majority of the time.

-Yeah.

-Yeah.

-Ohh.

It's so sad.

'Ukraine is minus 20 degrees in the depths of winter.'

DOG BARKS

'Tatyana has arranged for us to meet with Dennis,

'another young incapacitated man, who Tatyana is helping with

'the legal challenge of trying to get his status reviewed.

'Dennis hopes he may soon be categorised as normal

'and maybe recognised by the courts as somebody who can be responsible for his actions.

'Dennis has cerebral palsy

'and has been in and out of different institutes,

'running away several times, and he ended up

'living on the streets as a preference to life in an institute.

'Like Lyonya, Dennis was sent to Novosavitski psychiatric institute.

'An inquiry found that one inmate was beaten to death

'and the institute is now under new management.

'The institute insists that sedatives are no longer used as punishment,

'that there is no more forced labour

'and no deaths as a result of sedative misuse.

'They say there's no physical punishment and patients take no part in burials,

'but human-rights activists claim that there were many more

'unexplained deaths which have never been investigated.

'Tatyana has worked relentlessly to get both Dennis and Boris

'into the courts to fight for their official freedom.

'Until now, the incapacitated status has effectively imprisoned

'many young men and women in the system for life,

'but an inmate in an institution in the east of Ukraine

'has just had her incapacitated label removed by the court.

'This is the first time ever that an inmate of an institute

'has had this status revoked.

'If Tatyana can realise this for Dennis and Boris,

'it will be an extraordinary achievement.

'Dennis was one of those she rescued from an old people's home.

'The roads to Nikolai's institute are perilous in the winter.

'A journey that took one hour in the summer now takes six.

'The winter brings big problems for Nikolai,

'as he finds it difficult to get out of the institute and onto the main road

'to provide any of his hospitalised children with their supplies of food, nappies and medication.

'All this makes Dr Olga's job even more difficult.'

Margarita is very unwell. She's taken to district hospital, Olga says.

-She's very worried.

-Where did she go?

-Nastya and Margarita.

-Nastya's gone as well?

Yeah, and she says, you know, she is in a very bad state.

'Nikolai arrived with more bad news.

'Nadia's been suffering a lot of discomfort with her head cyst.'

Ahh, she's... Ohh.

Nanichka, skazhi, "Rita."

-Rita.

-"Rita." Umnichka.

Privyet. Da. Privyet.

'But Nikolai does have some good news to share with us.

'Sasha is being adopted by a family from abroad.

'He is the first child ever to be adopted from this institute.

'Plans are beginning for a second group home,

'so that Katya and Larisa can benefit, too.

'But it all boils down to getting enough money,

'not just to set it up, but to sustain it for years to come.

'Nikolai took three years to fundraise for the boys' house.

'He is keen to show us how the boys are getting along.

'It is quite extraordinary to witness their progress.

'For the first time, these boys are attending daily classes

'and learning skills that will hopefully one day help them to live independently.'

-TEACHER:

-Plyus odin.

Odin, dva, tri.

Tri.

Pokushay.

And then?

'Whilst the group home gives the boys a much better life for now,

it is worrying that all of this could be in vain,

'should they end up in adult institutes like those described by Lyonya, Boris and Dennis.

'As for the disabled orphans, unless institutes like Nikolai's

'are given suitably qualified medical personnel and facilities,

'then it seems Ukraine's weakest members will continue to move in and out of hospital

'before coming to rest in the institutes' cemeteries.

'Nikolai received a home movie of Sasha from his new parents overseas

'and we had shown it to the staff earlier on.

'But just as we were preparing to leave

'three more carers approached us and asked if they could also

'see the movie of Sasha, as we had a copy on our laptop.

'Sasha is the lucky one.

'He has a family of his own now

'and he has a chance of having a fulfilling life.'

Subtitles by Red Bee Media Ltd