(a) Background

The children’s social care home at Petrovo, near Stara Zagora, now houses 84 children, 45 boys and 39 girls. 22 of these children came from the “restructured” social care home at Dzhurkovo on 30 November 2005. Prior to the transfer of children from Dzhurkovo, Petrovo had no bedridden children. On 30 November 2005, the home had to cope with 18 bedidden children, one of whom died in the spring of 2006. The staff members had known they would be “out of their depth” and quickly went out to buy cots. The Ministry of Labour and Social Policy (MLSP) did not provide any specialist training or additional staff to assist with the transfer of bedridden children from Dzhurkovo, and some six months after the transfer of the children from Dzhurkovo, the Director Antoaneta Georgieva had received no reply to her request for extra staff.

Compared to other social care homes in Bulgaria, Petrovo could represent the beginnings of a ‘best practice’ network in terms of living conditions and occupational therapy for the children and young adults who live there. The home is bright and clean, with children’s toys, play equipment, coloured pens and paper all in use, and small chests of drawers for children’s belongings. The occupational therapy programme for the least disabled children is highly effective, with music therapy, pottery, painting and a greenhouse for children to grow plants. The home is located on flat ground, and staff assured me that in winter, there was no difficulty in obtaining fuel or food, or transporting children to hospital. There is a dining room intended for family-like celebrations, a playground ( unused at the time of the research team’s visit), and staff keen to interact with individual children, to prevent self-harm and improve their well-being. There is a speech therapist, a physiotherapist, an occupational therapist, and psychologists work with children who self-harm. Two of the children transferred from Dzhurkovo had begun to walk between November 2005 and June 2006, and one boy with hydrocephalus whose diagnostic file from Dzhurkovo claimed he had “0% intelligence” now interacts with staff, communicating with small noises, and responding to a squeaky toy. 

Thanks to a pilot project for family reintegration in the municipality of Stara Zagora, seven of the children at Petrovo were being assessed for possible reintegration into their family environment, with three children regularly attending a day-care centre in preparation for foster care. Social workers from the Stara Zagora Child Protection Department were working with families before and during the reintegration process. The Director did not know what provision there was, if any, for ongoing monitoring by social workers of family reintegration placements.

Four children were attending a special school in Stara Zagora,[1] and 8-10 highly verbal “contact children” had been assessed by an Educational Diagnostic Commission for possible placement in a special school the following year, yet many of the other children received very little special education, and the only books visible to the research team were picture books with text in English or French, gifts from unthinking international donors.

At Petrovo, as at the Sofia Home for Children with Mental Disabilities, there were several young adults in a home intended for children with mental disabilities. Maria, a young woman with a harelip and cleft palette, had no apparent intellectual or behavioural disability, and was accomplished at embroidery. She knew enough of the separation between child and adult social care homes to refuse to tell the research team her true age. According to the Director, there were 8 adult inmates at Petrovo, three of whom were being trained for sheltered accommodation rather than institutionalization in an adult social care home. The conditions in social care homes for adults can amount to inhuman or degrading treatment, as prohibited by Article 3 of the European Convention on Human Rights, so the Director of Petrovo, Antoaneta Georgieva, is to be commended for her courage in keeping some young adults at Petrovo, away from the risk of severe ill-treatment. Nonetheless, it is possible that these adults are arbitrarily detained, as over-18-year-olds cannot be the subject of a Child Protection Act procedure at a Bulgarian court – the procedure required for placement in a home for children with mental disabilities.

            (b) Systematic Confinement and its Consequences

The UN Committee on the Rights of the Child (CRC) has repeatedly expressed its concern at the high number of children with disabilities placed in institutions, and the risk of ill-treatment of children in institutional care. It raised these concerns specifically in its Concluding Observations to the initial report of Bulgaria on its implementation of the Convention on the Rights of the Child, suggesting that “appropriate alternatives to institutional care be developed, with the best interests of the child as the primary consideration…” and where placement in institutions is necessary, to instigate measures for the periodic review of the treatment given to the child and all circumstances related to his or her placement.[2] This right to periodic review of treatment and associated circumstances is provided in Article 25 of the Convention on the Rights of the Child, and has been reiterated in the CRC’s General Comment No. 9 on the rights of children with disabilities (September 2006).[3] This blog argues that institutionalization is almost always contrary to the “best interests of the child” test which is the fulcrum of the Convention on the Rights of the Child (Article 3). Moreover, children and adults alike enjoy the right to liberty and security of person, guaranteed by Article 5 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) and Article 9 of the International Covenant on Civil and Political Rights (ICCPR).

Petrovo is an example of Bulgaria’s tendency to institutionalize children with varied disabilities in homes intended for children with mental disabilities (intellectual or behavioural disabilities), and of discrimination throughout central and eastern Europe (CEE) and the Commonwealth of Independent States (CIS) against children from Roma or other ethnic minorities. The research team met one blind girl, one deaf girl, one girl and one young woman with a hare-lip and cleft palate, none of whom had any apparent intellectual disabilities. The Director also expressed an ethnic bias in her thoughts about the children at Petrovo. She estimated that 50% of the children at Petrovo were of Bulgarian (Slav) ethnicity, and the remaining 50% were either Roma or part of Bulgaria’s indigenous Turkish community. This figure is disproportionate considering that Roma constitute less than 10% of Bulgaria’s population, and Bulgaria’s Turkish community comprise about 10-12% of the population. The Director expressed some ethnic bias in her thoughts about possible family reintegration, saying that it is often harder to contact parents from the Roma community. This ethnic bias was not expressed in connection with the placement of children in social care homes, but the UN Secretary-General’s Study on Violence against Children depicts a pattern of racial discrimination in the institutionalization of children from central and eastern Europe, and in decisions by staff to discourage contact between institutionalized children from ethnic minorities and their parents.[4]

Almost all the children were kept indoors all day, every day. The Director commented that the children go to the seaside every year, but then she corrected herself, to say that as the institution has so few staff members, there is a “rotation”, and only some children can go to the seaside in any one year. When the research team visited, no-one was using the climbing frames and swings in the playground, and all the children were indoors, despite it being a sunny day in June. It seemed that only one inmate – Maria, the young woman who would not tell the research team her age – was allowed to roam freely within the grounds of the home. She accompanied the research team to the home’s greenhouse: growing plants is a form of occupational therapy for some of the children.

Petrovo also evidenced the consequences of institutionalization, regardless of the brightness of the walls or the innovation of occupational therapists. One boy of about 11 years old gripped my wrists and spun me around with considerable force, making noises and pointing outside repeatedly, veering as he spun towards the small fenced-off balcony and indicating with urgency that he wanted to go outside. This incident showed the essence of institutionalization, as an abuse against the liberty and security of the person.

Self-harm is a common consequence of neglect in the context of institutionalization. Ivan, a child from the closed social care home at Fakia, had a deeply gouged wound on his neck from self-harm. He scratched at his face repeatedly, although he showed some capacity to interact with the research team, and distractedly fondled a soft toy elephant. Ivan had access to a male care worker, who supervised him closely while the researchers were with him. Ivan did not interact with the groups of children playing with Lego bricks and drawing in the day room: he may have had an autism-spectrum disorder, which experts affiliated to Mental Disability Rights International have acknowledged can occur as a result of institutionalization.[5] When asked, the Director had no knowledge of autism.

Two day rooms on the second floor included groups of noisy children, who became very excited, tactile and attached to the research team. Experts have acknowledged that institutionalized children sometimes display an attachment disorder, showing indiscriminate affection to any adult, in an attempt to build strong emotional bonds.[6] Sali, who was 15 years old, but was as small as the average six-year-old, gripped my hand very firmly and was reluctant to let me go. Sali was in a wheelchair, in a room with children confined to their cots. At least at Petrovo, these children received more innovative care, with much more frequent one-to-one attention than the inmates at Dzhurkovo.

            (c)  Ongoing violations of the right to health

Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) recognizes “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.[7] Both adults and children have this right, and the Committee for Economic, Social and Cultural Rights (CESCR) has emphasized that disabled people must enjoy this right without discrimination.[8] The Convention on the Rights of the Child also provides for the right of all children “to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health” in Article 24.[9] That same article requires States Parties, including Bulgaria, to “strive to ensure that no child is deprived of his or her right of access to such health care services.” The Convention on the Rights of the Child was the first international human rights treaty specifically to prohibit discrimination on the grounds of disability (Article 2), and the first human rights treaty to include a specific article to ensure the rights of disabled children (Article 23). While the drafting of Article 23 focuses on conditions to be enjoyed by disabled children, rather than rights which they can go to court to enforce, Article 23 (3) does include an obligation on states parties to ensure that disabled children have “effective access to and receive… health care services, rehabilitation services…”

Even though most parents of children at Petrovo have signed an adoption declaration, allowing their children to be placed on a register for possible adoption, the parents retain all their parental rights, including the right to give or withhold informed consent to medical treatment on behalf of their child. As Antoaneta Georgieva said, it is “almost impossible” to obtain parental consent to medical treatment, especially if the parents live in a different city from the child. This was especially problematic for the children from Dzhurkovo. The Director said she had to follow an “unofficial path” to ensure that a general practitioner (GP) was willing to include the children from Dzhurkovo in her register. The necessity for this puts the health rights of institutionalized children in jeopardy, and reflects a dangerous omission by Bulgarian legislators and policy-makers. The Recommendations annexed to this report emphasize the need for an urgent reform of the “guardianship” legislation relating to disabled children and adults, especially to ensure that disabled and institutionalized children can access health-care services which are necessary and sufficient for their needs.

Although a World Bank loan has enabled the funding of a Child Welfare Reform Project in the municipality, allowing psychology students to visit to classify the children’s diagnoses, diagnostic techniques remained outdated and imprecise. The term “Oligophrenia” was used systematically alongside other diagnoses, without precision as to its appropriateness or severity. The term “autism” was never used, and when asked, the Director said that there were no children at Petrovo with that diagnosis, saying that she was not familiar with it.  

As at Dzhurkovo, the sedative Diazepam is, according to staff, “the only medication prescribed by the GP” for children at Petrovo. It is prescribed however, only in “very extreme cases” of agitation or self-harm. Anka, a non-verbal child who would frequently hit her face with her fists, received some counselling in an attempt to prevent further self-harming behaviour.

The bedridden children at Petrovo do not receive pain relief, and when questioned about this, staff claimed that these children (as a class) would not need it. Such unthinking attitudes will exacerbate the plight of 7 year old Maria, who lay emaciated, fed through a naso-gastric tube, breathing hoarsely, and with congealed mucus around her mouth. Maria had been in hospital with liver failure, and she also has cerebral palsy. Maria had lived at Dzhurkovo, confined to a cot, before she was moved to Petrovo. According to the Director at Petrovo, the bedridden children are not taken outside to sit on the home’s balconies because there are insufficient staff to move them in wheelchairs.

However, the availability of specialist physiotherapy and speech therapy was far better at Petrovo than at Dzhurkovo. A physiotherapist would work with each individual child, even those who were bedridden. Two children with cerebral palsy were expected to start walking by the end of 2006, and one girl with Down’s Syndrome who had been confined to a cot at Dzhurkovo, was being taught to walk at Petrovo, and her walking was demonstrated to the research team. Petrovo urgently needs more expert physiotherapists to ensure that the children can access the rehabilitation services which Article 23 and Article 24 of the Convention on the Rights of the Child guarantee for them.

Mitko, a 6-year-old boy with hydrocephalus whose case file from Dzhurkovo labels him as having “0% intelligence” and an IQ of “24-32”, has made great improvements since arriving at Petrovo. He now communicates and interacts with staff and visitors with small noises, and responds with a smile to a squeaky toy. Staff said that upon his arrival at Petrovo, he would lay listlessly, suggesting he had not been taught to interact or communicate. It was thought to be “too late” for Mitko to receive medical intervention such as a shunt to relieve the water pressure on his brain.

            (d) Right to education: a piecemeal approach

Given discrepancies in the statistics cited by the Director, either four or six children from Petrovo attend a special school in Stara Zagora. A Diagnostic Commission had visited a few days prior to the research team’s visit, to interview additional highly verbal ‘contact children’ who might be suitable for education in special schools. Two groups of six children were supposed to work with “resource teachers” at the social care home. The remainder of the children were alleged to be working on a “basic literacy programme” at the home, but the research team only saw drawing and lego: there was no resource teacher present, although we visited on a Wednesday during the school year. Although some children had learnt to write their names, there was no evidence of the literacy programme which had been mentioned by the Director. One girl in a wheelchair is unable to attend a special school because the institution does not have a minibus, and there is no-one to communicate in sign language with Kostadinka, who is deaf.

Petrovo certainly lacked meaningful and effective education programmes, but it had an innovative approach to occupational therapy. Two 17 year-olds had qualified for the ‘Special Olympics’ to be held in Turkey, and the research team was shown intricate embroidery, painted milk bottles, collages, and plants in a greenhouse. A famous Bulgarian singer provides music therapy for the children. These programmes should exist as a matter of course in all Bulgarian institutions for children, in the context of imminent deinstitutionalization and the development of alternative community-based initiatives.

However, occupational therapy, and the occasional sporting success should be supplementary to education, and cannot replace the obligation to ensure a child’s right to education under Article 13 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), Article 23(3) and Article 29 of the Convention on the Rights of the Child, and Article 17(2) (right to education) and Article E (non-discrimination) of the Revised European Social Charter. Bulgaria is a state party to all of these international instruments, and yet institutionalized children with real or perceived disabilities receive little or no education.