Warehouses of Neglect: Violations of Health and Education Rights in Bulgaria's Institutions for Children and Young Adults with Mental Disabilities
Teenagers rocking rhythmically; Dzhurkovo social care home,
near Laki, Bulgaria, June 2006 © Elizabeth Stubbins
Warehouses of Neglect describes human rights violations in three social care homes under the authority of the Ministry of Labour and Social Policy (MLSP). The report describes the results of visits to the institutions at Dzhurkovo, Petrovo and Gorna Bania, undertaken by a small research team in June 2006, and analyzes factual findings against Bulgaria's treaty obligations and in the context of its bid to join the European Union (EU) in January 2007. The report closes with recommendations addressed to the MLSP, individual municipalities, European Union institutions and member states, and international donors.
The research mission was conceived as a result of the planned "restructuring" of the Dzhurkovo care home from a children's institution into a home for young adults, following a national scandal at the deaths of 13 children and one 18 year old in the winter of 1996-7. This "restructuring" took place from 30 November 2005, when Dzhurkovo's under-18-year-olds were moved to the homes at Petrovo and Gorna Bania. The goal of the research was not only to assess the material conditions, health and education rights available to the residents in all three homes, but also to monitor the human rights of the children transferred from Dzhurkovo to Petrovo and Gorna Bania. Conditions amounted to inhuman or degrading treatment for bedridden children and the so-called "severe cases" at Dzhurkovo, and arguably for bedridden children at Petrovo. Despite brighter scenery and plenty of facilities for occupational therapy at Petrovo, children's rights to the best attainable standard of health and to specialist education were still under threat. Gorna Bania stood out as the most advanced of the three social care homes in terms of health-care for severely disabled children, but none of the home's several articulate teenagers currently attended school.
Bulgaria is due to accede to the European Union in 2007, possibly with the imposition of "safeguard clauses" to combat judicial corruption and organized crime. While the conditions in social care homes for children and psychiatric hospitals for adults have been referred to with concern in the European Commission's Monitoring Report on Bulgaria, the plight of tens of thousands of children and adults detained in Bulgaria's institutions has never been mooted as a "make-or-break" issue for EU Accession. This report argues that Bulgarian authorities, the EU Commission and member states must work together immediately to dismantle Bulgaria's network of social care homes, and to fund alternative social services for Bulgaria's disabled children.2 Ongoing violations of health and education rights must cease, and reparations should be provided, in the form of compensation, rehabilitation, and remedial education to assist those children and young adults harmed by inhuman or degrading treatment in Bulgaria's institutions.
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 Bulgaria's international treaty commitments3. There are concerns that at least some of Dzhurkovo's residents may be arbitrarily detained,4 as theiy had not been subject to a guardianship procedure at the Regional Court in Plovdiv by June 2006.The disabled children seen by the research team have suffered violations of their rights to dignity, independence, social integration and participation in the life of the community,5 often in spite of the genuine efforts of individual staff members. The neglect experienced by the most severely disabled children and young adults, particularly those deemed "bedridden", may reach the threshold of inhuman or degrading treatment, prohibited by Article 3 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR).6 While material conditions and specialist facilities at children's social care homes have improved in recent years largely as a result of international donations, the conditions for the most severely disabled children do not provide a standard of living sufficient for their mental and physical well-being.7 The conditions in the home at Dzhurkovo, now a home for young adults, do not respect residents' rights to an adequate standard of living,8 and may themselves amount to inhuman or degrading treatment.
Diagnostic techniques were unscientific and diagnoses were inadequately, if ever, reviewed.9 All residents at these homes were diagnosed with mental disabilities (intellectual disabilities or psychiatric illnesses), but the researchers 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.
Staff members' statements indicated the assumption 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 Gorna Bania 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.
The researchers spoke of the "Dzhurkovo Disadvantage" to describe the worse condition of the current and past residents of the Dzhurkovo social care home, as compared to the children who had been at Petrovo or Gorna Bania long-term. There were noticeable differences in the physical size and behaviour of children who had been at Dzhurkovo compared to those who had not lived there. Bedridden children from Dzhurkovo who had been transferred to Gorna Bania made progress in interpersonal communication following the move; they ate more, experienced improved growth, and some learned to walk.
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"10 children cannot feel pain. Only at the Sofia Home for Children with Mental Disabilities in Gorna Bania do bedridden children have access to nursing care 24 hours a day, enabling some progress to be made in the communication skills of a dying boy with hydrocephalus since he was moved from Dzhurkovo.
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 Gorna Bania 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 speak in sign language to a deaf girl.
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 Gorna Bania should be commended for their efforts to gain expertise from international donors and conferences. The Sofia Home for Children with Mental Disabilities is the only home of the three which has knowledge of autism, and the Petrovo home should be commended for its efforts at community-building and provision of educational play for the children. While this report details horrors and suffering, it also points to the potential for a best practice network, which could allow the sharing of international expertise throughout Bulgaria.
Young boy at Petrovo with a gash on his
neck from self-harm, June 2006, © Elizabeth Stubbins
To the Bulgarian Government:
- Urgently dismantle the network of social care homes for children and adults with mental disabilities;
- Do not restrict deinstitutionalization to a prevention of future placement in social care homes;
- Extend the pilot programmes for day care centres for disabled children and adults;
- Create and finance a network for foster-care;
- Ensure that disabled children and young adults who are reintegrated into their family environments can be monitored closely for their safety, welfare and health;
- Urgently improve health care provision while deinstitutionalization is pending;
- Amend the law on guardianship so that the Director of a social care home can give informed consent to medical treatment for a disabled child;
- Finance and provide for a systematic review of the psychiatric diagnoses of children and adults placed in social care homes, genuinely to challenge the flawed assumption that all institutionalized children and adults have mental disabilities;
- Train experts in child-care, physiotherapy, occupational therapy and special education to care for disabled children and adults in the community - via home visits and work in day centres;
- Train health-care workers and rehabilitation specialists in a rights-based approach to the care of children and adults with mental disabilities;
- Combat the stigma and associated discrimination against children and adults with disabilities, as part of a programme of legal reform and community reintegration;
- Provide reparations in the form of compensation, rehabilitation, remedial education and vocational training for those children and adults who have suffered violations of their human rights while in social care homes.
To EU Institutions, member states and international donors:
- Share international expertise on diagnostics, rehabilitation and special education;
- Train specialist staff members in new methods of rehabilitation;
- Train doctors in their obligations to treat disabled children and adults from social care homes;
- Finance the training of a sufficient number of qualified special teachers for children with intellectual and psychiatric disabilities.
- Do not continue to fund social care homes which seek funding for material improvements: instead direct funding at alternative social services, and the training of specialist staff for community care and post-return monitoring.
The research for this report was conducted in Bulgaria in June 2006. One day was spent at each of the three social care homes: Dzhurkovo, Petrovo and Gorna Bania, with the essential assistance of a driver and interpreter. Each visit began with a lengthy interview with available staff at each home: a social worker and occupational therapist at Dzhurkovo, and the Directors of the homes at Petrovo and Gorna Bania. The research team spoke by telephone to the Director of the Dzhurkovo home several days after their visit to the home. Subsequently, the team was allowed supervised access to all areas of each home. The researchers tried to spend many minutes with each resident, communicating with them where this was possible, and asking staff members about the diagnosis, individual care plan, and institution of origin for each resident. The team asked questions about the availability of physiotherapy and special education for each child and young adult.
All visits to social care homes were unannounced, so that staff at the institutions did not have the opportunity to prepare especially for the visit. Following a meeting between the research team and officials at the MLSP on 5 June 2006, the Deputy Minister of Labour and Social Policy Ivanka Hristova telephoned the mayor of Laki municipality, alerting him of the likelihood that a team of human rights workers was likely to visit the social care home at Dzhurkovo. The following day when the research team arrived in Dzhurkovo, the Director of the Dzhurkovo social care home was allegedly on sick leave, and the research team interviewed her by telephone later that week. A meeting with the mayor of Laki municipality showed that he was unaware when the research team was due to visit, but he did confirm that Ivanka Hristova had alerted him to the possibility that human rights workers would visit the home. The Directors of the homes at Petrovo and Gorna Bania were completely unaware that researchers would visit them, yet were helpful and comprehensive in their approach to interview questions, and allowed the team supervised access to all parts of their respective institutions. At Gorna Bania, the Director did express irritation at the unannounced nature of the visit. At Dzhurkovo there was a delay of some fifteen minutes before the researchers were permitted to enter the home.
The staff at each home had varying attitudes towards the researchers taking photographs. Staff at the Gorna Bania home prohibited all photography; staff at Petrovo permitted photographs of children in groups but not individually; and staff members at Dzhurkovo were content for the residents to be photographed without restrictions. The research team was aware of the delicate situation as regards the residents' capacity to consent to being photographed, and their lack of understanding in most but not all instances that their photograph might be published. Bedridden children in obvious distress were not photographed, in part because they were not able to express their willingness to be photographed. In order to respect the Bulgarian Data Protection Act, no identifying information will be published alongside a photograph of a child. The photographs in this report have been selected to highlight particular elements of neglect or of expertise in the homes visited.
The researchers would like to thank the staff members and residents of all three homes for their welcoming and open attitude to the research team. Many of these staff members should be commended for their caring attitude towards the welfare of the children and young adults in their care. Bulgaria's national and municipal authorities bear responsibility for the human rights violations detailed in this report.
I have continued my campaigning work for institutionalized children in Bulgaria since the end of the 2006 Helton Fellowship: providing advice on international law and standards, and on advocacy before international organizations, to the producer/director of a documentary on the same subject, Bulgaria's Abandoned Children, which was broadcast by the BBC in fall 2007, and led to the establishment of the Bulgarian Abandoned Children's Trust (www.tbact.org), demonstrations in Sofia, and petitions in Bulgarian and English. Children and young adults remain institutionalized at Dzhurkovo, Petrovo and the Sofia Home for Children with Mental Disabilities featured in my report, but campaigning is ongoing to create genuine policy change at the national and municipal levels.
I continued working as a Legal Adviser at Amnesty International's International Secretariat until December 2006. Throughout 2007, I have been a consultant lawyer with the Coalition to Stop the Use of Child Soldiers and the Program on Humanitarian Policy and Conflict Research at Harvard University (HPCR).
Footnotes1 Legal Adviser, Amnesty International; Helton Fellow, American Society of International Law; B.A. Hons (Oxon), LL.M. (Harvard). The author would like to thank Slavka Kukova, Aneta Mircheva and Milena Panayotova of the Bulgarian Helsinki Committee, Jan Fiala and Oliver Lewis of the Mental Disability Advocacy Center; Jill Heine of Amnesty International, for their substantive and logistical assistance during the research mission and for their comments on initial drafts. The research was funded by a Helton Fellowship from the American Society of International Law (ASIL), with MDAC as the sponsoring organization. Particular acknowledgement is due to Ivan Fiser, former researcher at Amnesty International, whose research on institutional care in Bulgaria and Romania persuaded the author of the urgent need for continued monitoring of the conditions at Dzhurkovo.
2 See inter alia the obligations of ?international cooperation, [and] the exchange of appropriate information? in the Convention on the Rights of the Child, Article 23 (4), and ?international assistance and cooperation? in Article 2(1) ICESCR.
3 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)
4 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)
5 Convention on the Rights of the Child, Article 23; European Social Charter (Revised), Article 15
6 The European Court of Human Rights has found violations of Article 3 of the ECHR in relation to conditions of detention (Dougoz v Greece, Application No. 40907/98/ Judgment 6 March 2001, paragraph 46). In Price v United Kingdom (Application No. 33394/96, Judgment 10 July 2001), the European Court of Human Rights affirmed that the absence of an intention on the part of the authorities to degrade the victim cannot rule out a violation of article 3 of the ECHR. Nonetheless, the conditions or treatment faced by an individual must reach a certain threshold of severity before a violation of Article 3 can be found (see inter alia, Ireland v UK, Series A, No. 25, Judgment 18 January 1978, paragraph 162).
7 Convention on the Rights of the Child, Article 27;
8 ICESCR, Article 11: the right to an adequate standard of living includes food, clothing, housing and the continuous improvement of living conditions.
9 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?.
10 ?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.