Prayer Topic

Someone must be held responsible

The institutions for children with disabilities in Bulgaria: hundreds of deaths caused by hunger, cold and neglect, dozens poisoned by drugs, held tied up and physically abused – and no one held responsible.

by Yana Buhrer Tavanier*

Hope is born.

No, this is a different story. Hope is born disabled. She is placed in an institution. There, she is belt-fastened to her bed, or tied up in her wheelchair, or put in a straitjacket. She spends years in her bed and so she never grows up. She sits all day on the floor, rocking back and forth. Nothing happens to her there. She self-harms because she would rather feel something than feel nothing at all. She bangs her head repeatedly against the metal leg of the bed. She sucks on her finger for so long, that it becomes affected by gangrene, and the doctors have to amputate it. She scratches her arms until they start to bleed. Every day – until they bleed. She plays with stones. She eats stones. She cries with hunger. They stuff porridge into her mouth without giving her time to swallow it. She never gets hugged. She screams and howls. She gets stuffed with drugs for the wrong diagnosis. She is chemically restrained by drugs that crash her mind and her body. She gets scalded with hot water and her skin starts to peel off. She gets hit, and kicked, and punched, and suffocated, and bitten.

She is sexually abused.

And then Hope dies. She dies at three from malnutrition. She dies at four from her bedsores. She dies at six from infections caused by bad hygiene. She dies at seven from frostbite, at eight from drowning, at nine from suffocation, at ten from strangulation.

All this is the truth. And Hope is the face of the children with disabilities in Bulgaria.

“… The children spent their afternoon in doing nothing, howling, wondering around, and lying about on the floor.”

*) On 20 September, the Bulgarian Helsinki Committee (BHC) announced the results of inspections which were carried out in all of the county’s institutions for mentally disabled children. Such a large-scale

*)All citations are from the reports produced by BHC for the Prosecutor’s Office in the summer of 2010.

In 1o years, 238 children have died in 25 childcare institutions in Bulgaria. From them: 31 died of hunger 84 died from neglect 13 died from diseases 36 died of pneumonia 6 died from accidents 2 died from violence
inspection of children’s institutions in Bulgaria has never before been attempted, by anyone. The discoveries are diabolic.

During the period covered by the inspections – the last ten years – a terrifying number of child deaths has occurred. These deaths were never formally investigated. Most of them have been avoidable. The number of child deaths is

Two hundred and thirty-eight

(including 58 deaths that occurred in the last three years, following the discoveries made about the institution in Mogilino and the initial involvement of the government in dealing with these issues). Since the number of residents at children’s institutions across the country totals around 1,000, the death rates at these institutions appear monstrously high.

More importantly, the claim that was fed to the public for years, explaining these children’s high death rates as the natural consequence of their disabilities, is now finally disproved. Most of the children were killed, and this is evident from the records.

After going through tens of thousands of pages of medical and other records, about 30 visits to childcare institutions and hundreds of interviews, we can claim in all confidence that at least three quarters of all child deaths were avoidable.

Thirty-one children died of hunger, i.e. systematic malnutrition. This is the combined effect of unwholesome food, feeding methods that do not facilitate swallowing and digestion, and the side effects of drugs given in excess. As a result, Samir who is 103 cm tall weighs 14 kg, Todor who is 100 cm tall weighs 10 kg, Roussa who is 114 cm tall weighs 8 kg. Maria, resident of the Petrovo institution (near Stara Zagora), weighed 8 kg at the age of 12 and this condition led to her death. The records show that she was systematically underfed during 11 years of her life – in other words, throughout her entire life.

Thirty-one deaths of hunger, 84 from general neglect, 13 from epidemics of infectious diseases, caused by bad hygiene, six from accidents such as frostbite, drowning, and suffocation, 36 from pneumonia, caused by cold and immobility, two by violence. All of the above are the results of criminal negligence.

“D. died on 14 January 2006 in the hospital in Sandanski. The record on the cause of death reads “acute heart and lung failure.”

On 22 June 2005, D. had been prescribed chemodyalisis treatment. Until the child’s death, a whole six months later, the treatment had not started. The death was most probably the result of this failure. No autopsy was performed.” (Records from the institution in Petrovo)

The deaths tend to occur in the cold months. One hundred and forty nine deaths occurred at the institutions – and not in hospitals – this shows that the children were not hospitalized irrespective of their serious conditions. Instead, they were

Left to die

or released from hospital just before they died. Eleven children died after being taken to hospital too late. Like Victor from the notorious Mogilino institution who, after having spent eight months in his bed with a wound on his head, was taken to hospital only one day before he died of brain edema. The deaths, as a rule, were never investigated. No one was ever held responsible, and no protection was ever provided to the children. Some of the death certificates were filled with nonsense, recording as cause of death “other and unspecified anomalies” or diseases that do not on their own cause death, such as cerebral palsy. In most of the cases autopsies were not performed, or if they were - there were no records of it. Someone should be held responsible.

“…Tihomir and Ahmed were feeling unwell on the night of August 10 and 11 2000 – they had “high fever and blood in the stool”. On August 11, Dr. Cholakova was consulted over the phone and prescribed treatment without examination; the children were not isolated from the other residents and were not hospitalized. The next day, their conditions deteriorated, their fever reaching 39 C. On August 13, the institution director “called Dr. Cholakova in, who advised that the children should be hospitalised”. Tihomir and Ahmed were transported to the hospital in Kotel, where Tihomir, who was “in a very bad condition”, died in spite of the medical help. No autopsy or microbiological tests were performed. Ahmed survived the transportation to the Infectious Diseases Ward of the hospital in Sliven and died there later the same evening. His tests confirmed dysentery as the main cause of death. The two boys had been placed at the institution less than three weeks before their deaths.” (Records from the Medven institution)

“…Most of the deaths at the institution are usually established by the staff in the mornings, during the routine inspections. This means that
there is no supervision of the children at night and that no member of staff is present at the time of death. It appears that no one knows how these deaths occurred and no one is there to prevent them when they are avoidable.” (Records from the institution in Petrovo)

The institution inspections led by the BHC were carried out by teams of experts that included medical practitioners and child psychologists, and in collaboration with the Prosecutor’s Office. The final reports on the inspections are with the Prosecution now, and it is expected that formal investigation will be initiated on the basis of the evidence gathered. The forthcoming investigation will be looking not only into the child deaths and not only into events from the past. The prosecutors will also have to investigate the cases of 103 children and youngsters resident in the institutions who, at this very moment, are suffering from malnutrition and therefore are in

Grave danger of dying from hunger

Including the risk of dying from diseases because of their general state of physical exhaustion. Someone should be held responsible.

There is responsibility to be sought also for the seven cases of sexual abuse, and for the eight cases of physical violence. The relevant regional authorities charged with child protection have been informed of the above cases of violence, and so have the central state authorities. However, it is still unclear whether the above authorities have acted on this information. None of the children victims of violence have received any help or justice.

Someone should be held responsible for the 622 children affected by serious infectious diseases, some of whom died as a result. Inspection of the institutions in Medven, Gomotartsy and Sladak Kladenets revealed very poor levels of hygiene and a history of recurring outbursts of epidemics – fecal-oral infections, dysentery, and hepatitis. The public health control authorities (the Regional Inspections for Protection and Control of Public Health) are ineffective in dealing with the problem – they fail to penalize any violations of the law, as well as of formal recommendations.

As much as in eight of the institutions physical restraint is used as a means of control over children’s behaviour. They are tied up by their limbs or fastened to their beds, wheelchairs and other objects; straitjackets are also used. This is illegal. At times, some children may spend months at a time being tied up, and so the total time spent by them in physical immobilization may amount to several years. This is criminal and inhuman. Someone should be held responsible.

“…The inspection gathered evidence of physical restraint applied to seven children. Immobilization was carried out in a manner that was humiliating for the children and in violation of the relevant regulations that forbid the use of physical restraint in institutions. By law, under no circumstances may physical restraint be applied in an institution such as the inspected, because it does not qualify as a medical facility.” (Records from the institution in Medven)

“…Roussa had been immobilized to prevent her from sucking on her fingers, which she was doing to express feelings of loneliness and frustration. This traumatic and entirely unnecessary restraint was applied by the institution staff instead of trying to communicate with her – the girl would stop sucking on her fingers when she received attention, which was confirmed by the staff themselves. As a result of the forcible restraint as substitute for normal human attention, the girl suffered bodily injury – a complete necrosis of her finger.” (Records from the institution in Mogilino)

Ninety children were subjected to

“Chemical immobilization”

through the use of strong and damaging neuroleptic drugs. These drugs were prescribed to children diagnosed with developmental disabilities who did not suffer from any mental illness. Sometimes they were administered by the staff without consultation with a psychiatrist. And if physical restraint is damaging to the mind, the excessive administration of extremely strong drugs without good medical reason – simply for the purpose of enforcing obedience and control, is detrimental to the mind and the body. One hundred and sixty-seven children were given dangerous medications – often harmful and unnecessary, sometimes in excessive doses, and for unbelievably long periods of time. For example, the doctor at the institution in Gomotartsy has been prescribing the epilepsy drug Rivotril to several of the residents for years – a condition none of them have.

 “…Eleven children have been taking the harmful drug Thioridazin. Seven of them were given it for the purpose of controlling their behaviour (states of agitation, self-harm, with no psychiatric prescription). Drug treatment as a method of control constitutes chemical “immobilization” – a form of violence, and therefore a criminal offense.” (Records from the institution in Petrovo, Blagoevgrad region)

Most of the institutions lack basic practices of social care for the children. The residents are simply being stored. There is no consideration of encouraging their development or giving meaning to their lives. The children’s development has been arrested to a large extent because of this neglect. All the inspected institutions lacked qualified members of staff, some even lacked a doctor. Individualized care, which is essential for the maintenance of the residents’ needs, is non-existent. The children are expected to die. The ones that move with difficulty and the bedridden ones – whose needs for care and attention are most acute, have been abandoned in their cribs or left on the floor where they lie motionless, or rock their bodies back and forth.

There are at least 86 documented grave accidents that could have been avoided if the institution had in employment professional and enthusiastic members of staff. Some injuries were never treated; others were tended to after long delays. Three residents of the institution in Gomotartsy – Verginia, Krassimir and Miroslav – spent 7 to 10 days with fractured thighs, with no proper treatment but compresses. Fifty-eight of the children are prone to self-harm, a condition encouraged by the lack of proper care.

“… Vasko, aged 7, diagnosed with “hypotrophy II-III degree” and “severe mental retardation”, was standing up in his crib. His face was smeared with nasal secretions which were not cleaned up during the whole time of the inspection. Vasko’s hands showed scratch sores, which he kept on scratching.” (Records from the institution in Rudnik)

“… In 2008, it was established that 14 children required the help of a psychologist for the treatment of autistic, aggressive and self-harming behaviour, and for dealing with motor automatism. At the time of the inspection, the help of a psychologist had still not been provided, and the children remained without any psychological care.” (Records from the institution in Rudnik)

Somebody must be held responsible. Responsibility must be sought for present and past failures - from the staff of the institutions, from the medical personnel, from the mayors who are in charge of these institutions; from the Ministers of Labour and Social Policy, including the local child protection and social assistance authorities. Responsibility must be sought from all who stand in the way of deinstitutionalization, and who thus prolong the unfunded and unqualified functioning of the institutions. Responsibility must be also sought from the regional public health control authorities and the State Agency for Child Protection. All of them must answer for their acts and failures to act that have led to hunger, violence, forcible immobilization, mass epidemics, deaths and lives robbed of meaning.

Now the ball is in the Prosecution’s court.

I was part of the team that inspected the childcare institutions this summer. Russe was one of the cities we visited – we had to go through the records of the Mogilino institution and gather evidence of the crimes committed there before the institution’s closure. Mogilino is the leader among the heavy offending institutions, followed by the institutions in Medven, Krushary, Petrovo (near Blagoevgrad) and Rudnik (see additional information below). We also paid a visit to one of the care centers where some of the former Mogilino residents were living in improved conditions. I’ve made several notes in my journal:

Todor has started walking. Krassy can now sit up in a chair. Dessy has stopped biting herself. Semir’s epileptic fits have decreased. This is what happens under care. Which brings us back to our point – someone must be held responsible. We ask you to share this information. Instead of donating clothes or goody bags, please send a letter to the Office of the Prosecutor General at the following address: 2 Vitosha Blvd., Sofia 1000, Bulgaria Email: office_gp@prb.bg and encourage the authorities to take action and to start investigations into the crimes committed in the institutions for children with disabilities. Now.

* Yana Buhrer Tavanier is Campaigns Director of the Bulgarian Helsinki Committee. ---

For more information about this campaign see http://forsakenchildren.bghelsinki.org/