This blog summarizes the results of a research mission to three institutions or "social care homes" run by Bulgaria's Ministry of Labour and Social Policy (MLSP) - a fraction of the 27 homes under the auspices of the MLSP, and the more than 10,500 children and young adults housed in institutions run by either the MLSP, the Ministry of Education or the Ministry of Health. I visited Dzhurkovo, a home for young adults with mental disabilities in the Rodopi Mountains; Petrovo, a home for children with mental disabilities near Stara Zagora; and the Sofia Home for Children with Mental Disabilities. Some six months before the research mission, Dzhurkovo's under-18-year-olds were transferred from that home to the institutions at Petrovo and Sofia, following a decision by a monitoring group of the State Agency for Child Protection (SACP) that the remote location, cold climate and violence between inmates at Dzhurkovo made it unsuitable for children.
At all three institutions, the state had failed to respect and ensure residents’ rights to education and to the best attainable standard of physical and mental health, as mandated by
Diagnostic techniques were unscientific and diagnoses were inadequately, if ever, reviewed.[7] All residents at these homes were diagnosed with mental disabilities (intellectual disabilities or psychiatric illnesses), but I found children with untreated tumours, facial deformities, physical illnesses and sensory disabilities, all of whom were assumed without apparent evidence also to have intellectual or psychiatric impairments.
The institutions' staff indicated that all behaviours demonstrated by the children were as a result of a mental disability. One boy at Petrovo who grasped the author’s hand and spun her around, gesticulating desperately at the door to a balcony, was deemed ‘disruptive.’ There was little or no awareness that his desperate craving to go outside might result from his confinement within the walls of the home. Only at the Sofia Home for Children with Mental Disabilities did staff have a systematic programme to recognize, prevent and remedy the behavioural consequences of institutionalization: such as repetitive rocking and self-harm.
Although facilities and staff training varied dramatically between the three institutions visited, most children and young adults seen by the researchers did not have access to specialist care or rehabilitation: their disabilities were compounded by neglect and a lack of specialist care. At Dzhurkovo, one physiotherapist asked if she was "allowed" to innovate, to interact with the residents lying listlessly in a dry pool of plastic balls. Specialist equipment offered a change of scene for children and young adults, but the staff were not trained to use it to maximize its therapeutic possibilities. At all three homes, specialist physiotherapy equipment remained in locked rooms unused at the time the research team visited.
While individual staff members expressed verbal kindness and physical affection to the residents in their care, non-verbal young adults at Dzhurkovo experienced great neglect. Staff members left them unattended to rock rhythmically and bite parts of their clothing, perhaps assuming that as they were either unable or had not been taught to speak, they did not need to be spoken to. The young adults in a day room were left to rock to and fro, biting their clothing and tissues from their underwear. They wore odd socks and threadbare clothing - none wore shoes. The staff said that shoes were put on only for 'excursions', yet very few of the residents went on 'excursions' in case they 'escaped'. Specialist rehabilitation equipment was used as a bright play space - a change of scenery for the residents. There was no innovation to promote physiotherapy or special education, and the researchers saw only one small set of drawings in the entire folder held by the occupational therapist. The walls were grimly undecorated, and despite the smell of disinfectant and some fresh paint, researchers saw faeces in a shower and a young woman being led to defecate in a bucket, in full view of the other residents.
Bedridden children and young adults faced the worst neglect. At Dzhurkovo, bedridden residents are left all day in soiled sheets and clothes, without company, affection, physiotherapy or visual stimulation. Staff members did not intervene to help a distressed young woman who screamed, bit her hand until it bled, and hit her head repeatedly on the hard wood of her cot. One young woman smiled wordlessly despite an untreated facial tumour which spanned half of her face and restricted her vision. One 17-year-old with cerebral palsy could stand unaided, but her wasted legs indicated she had not received the physiotherapy required to help her to walk. At Petrovo, well-meaning staff members said that children dying and in evident pain did not need pain relief, as ‘“Oligophrenic”[8] children cannot feel pain’. Only at the
The Bulgarian law on “guardianship” of those with mental disabilities leaves a life-threatening gap in health care provision. The forms completed by a parent abandoning a disabled child leave most parental rights to the biological parents, including the right to give informed consent to that child’s medical treatment. Where parents cannot be traced, the law does not permit medical treatment to be given to the child, and institution staff members must risk sanction by using unofficial networks and personal relationships in order to secure health care for the children in their care.
Most of the institutionalized children were assumed to be “uneducable” regardless of their diagnosis. None of the young adults at Dzhurkovo receive special or vocational education, because they are supposed to be 18 years of age or over. Only a handful of children at the three homes had received or were receiving any specialist education at the special schools run by the Ministry of Education for children with mental disabilities. One teenager from Sofia who could speak and write Bulgarian, basic Spanish and English was sent back to the Sofia Home after only two years at the local special school. Staff at the special school had said her disabilities were too profound to permit her to learn. At Petrovo, there is no minibus to take physically disabled children to school, and no-one to communicate in sign language to a deaf girl. The only "education" that I saw at Petrovo was supervised play with lego bricks and crayons, and yet I visited on a Wednesday during the school year.
Many staff members have not received the specialist training which is urgently required. This reflects the low status and stigma attached to working in institutions for disabled children and adults. Without exception, the health care and education given to children and young adults at the three homes is insufficient for their needs and must be improved. However, both the Directors of the homes at Petrovo and at Sofia should be commended for their efforts to gain expertise from international donors and conferences. The
[1] International Covenant on Economic, Social and Cultural Rights (ICESCR), Articles 12 and 13; Convention on the Rights of the Child, Articles 23(3), 24, 28; European Social Charter (Revised), Article 11 and 17(2)
[2] International Covenant on Civil and Political Rights (1CCPR), Article 9; ECHR Article 5. UN Convention on the Rights of the Child, Article 37(b). All UN Conventions cited in this article are available at: http://www.ohchr.org/english/law/index.htm and the ECHR is available at: http://conventions.coe.int/Treaty/Commun/ListeTraites.asp?MA=3&CM=7&CL=ENG The UN Working Group on Arbitrary Detention (WGAD) has noted its concern at the deprivation of liberty of vulnerable persons. In its report to the 60th session of the UN Commission on Human Rights, the WGAD noted that locations for the detention of inter alia persons with disabilities are ‘incompatible with their state of health’ and that they are detained ‘sometimes without treatment and without it having been established that their detention is justified on medical or public health grounds.’ The WGAD was ‘concerned above all because often such administrative detention is not subject to judicial supervision.’ (UN Doc E/CN.4/2004/3, page 21)
[3] Convention on the Rights of the Child, Article 23; European Social Charter (Revised), Article 15
[4] The European Court of Human Rights has found violations of Article 3 of the ECHR in relation to conditions of detention (Dougoz v
[5] Convention on the Rights of the Child, Article 27;
[6]ICESCR, Article 11: the right to an adequate standard of living includes food, clothing, housing and the continuous improvement of living conditions.
[7] The Convention on the Rights of the Child, Article 25, confers on institutionalized children the right to ‘periodic review of the treatment’ she or he receives, and of ‘all other circumstances relevant to his or her placement’.
[8] “Oligophrenia” is a term used indiscriminately and without logical reasoning to denote intellectual disability. Although it remains in the Bulgarian translation of the International Classification of Diseases (ICD-10), it is not a medical diagnosis. The research team found some evidence that the term “Oligophrenia” is applied with circular logic: once a child is placed in a social care home, the diagnosis tends to include “Oligophrenia” or “Idiocy”, which helps to justify the continued placement of a child in that social care home.