Discrimination against people with mental disabilities in institutions
In 2008-2009, the BHC and the Bulgarian Institute for Relations between People (BIRP) conducted a monitoring of the conditions at the institutions for people with mental disabilities from the point of view of the opportunities for deinstitutionalization. The main deficiency of the system pointed out by the two organisations in their findings was the lack of a clear vision for systematic and harmonized policies for the deinstitutionalisation of social services. Although there were some steps towards a change, neither a “closure of the entrance” nor a “wide opening of the exit” of the institutions towards the community was established. Institutionalised care remains a major feature of the services delivered to the people placed in all surveyed specialised institutions.
According to Ministry of Labour and Social Policy data, by the end of 2009 there were 43 specialised institutions for adults with mental disabilities, with a total capacity of 3,742 beds; of these 15 were institutions for adults with mental disabilities with a total capacity of 1,266 beds, and 28 were institutions for adults with developmental disabilities with a total capacity of 2,476 beds. One should also add the institutions for adults with dementia, which were not included in the monitoring.
The monitoring identified several key problems that hinder reform:
- The problem with the centralised administrative procedure of placement
The existing centralised administrative procedure of placement in specialised institutions for adults with mental disabilities is an obstacle to the deinstitutionalisation of social services, as it creates conditions for arbitrary placement, which is in essence a deprivation of liberty and does not link local community needs to the existence of such institutions. Generally, the people with mental disabilities are placed in such institutions by the Social Assistance Agency in Sofia until the end of their lives, far away from their home towns, in municipalities, which are so small that they don’t need such institutions.
- Problems with the funding and management of social services
The dependency of the transformation on central budget financing is one of the greatest barriers to the enhancement of the social services. The current financial mechanism – single maintenance standards defined by the government on an annual basis – has an intrinsic contradiction faced by a series of public sectors, including the social sector: on the one hand, there is a need for effective management aimed at improving the quality of social care; on the other hand, the funding mechanisms preserve the status quo, as the funding is centralised, provided by formal criteria and independent of service quality. The remuneration of the specialists in the field of social services is among the lowest in the country, 350–390 BGN a month (180-200 EUR). The low remuneration for services provided by personal assistants – 240 BGN (123 BGN) – whom both users and experts regard as having the greatest social effect, hinders the development of alternatives. A 2009 example shows that out of 15 candidates for a position in the field of community social services in Smolyan, only five candidates remained when they found out what the remuneration was.
- Lack of control on social services
The BHC found examples of violations of even the framework criteria and standards for social services to adults at the institutions for adults with mental disabilities and developmental disabilities: abuse of the interdiction and placement in a social institution measure, property fraud, and mock-up reforms. In such cases the BHC most often finds a formalistic control on behalf of the Social Assistance Agency’s inspectors, whose checks don’t go beyond the numbers and the exceeded fuel budget, abdication of mayors and the bodies responsible for guardianship and custody from the responsibility to exercise control on guardians’ actions, lack of understanding by the prosecution of the graveness of the crimes against, and the abuse of, people with severe mental disabilities.
- Physical immobilization of people placed in social institutions and other types of inhuman treatment
The 2009 monitoring revealed examples of immobilisation and isolation of people placed in social institutions, in contradiction with the current legislation, which bans these practices in such institutions. At the institution in the village of Rovino, municipality of Smolyan, the BHC identified a practice that has been going on for years: 12 users were isolated as a punishment or “taming”, i.e. dealing with acute conditions at dark ground floors, premises under repair, a fenced and isolated court. The administration stated that the main reasons behind the isolations over the period from 1 February to 15 August 2008 were manifestations of aggression, psychomotor agitation, verbal aggression, pouring water on themselves. Four clients were most often accommodated in the isolation premises. This physical restriction was applied in total contradiction with the legislative provisions in the field of immobilization and isolation (not in a medical institution, without approval by a psychiatrist, without control and monitoring, more often during the night). Some cases of isolation were never recorded in the documentation.
At the institution for adults with mental disabilities in the village of Goren Chilfik, municipality of Dolen Chiflik, the monitors encountered a picturesque illustration of the “parallel worlds” in the system of care for people with disabilities. In the immediate proximity to the newly open modern protected home for eight of the institution’s clients and to the transitional space under construction, designed to accommodate 45 people, there is a one-storey housing pavilion – former mews and courtyard surrounded by a fence, with a metal door. This is the section for the people with the most severe disabilities in the institution and it stays locked throughout most of the day. During the first monitoring in the spring of 2009, the ongoing construction of the transitional space had resulted in the accommodation of 45 users in the section for people with severe conditions. Some of them slept on mattresses on the floor, others either lied or sat on the ground in the courtyard; they looked neglected and some of them were in affectus. In some premises there were traces of feces on the walls, the floors and the bed linen, with flies all over them. The judgment of the BHC and BIRP monitors was that five of the women needed to be urgently hospitalised. Prof. Toma Tomov, a long-time national mental health consultant and an expert in the project team, regarded their stay at the social home as a risk to their life. During the third monitoring on 4 August 2009, a partial change was registered: some of the female users were accommodated at the newly built pavilion. However, 25 users continued to live in “the horror corner.”
- Inadequate medicinal therapy
The problem of medicinal abuse and with the neglecting of the informed consent requirement with regard to the treatment of people with mental disabilities was observed in its most pure form at the institution for adults with mental disabilities in the village of Radovets, municipality of Topolovgrad. With one exception, all users at the institution were on the same medicine, haloperidol. The monitoring found out that the movements and the reactions of the people in the institution were visibly slower, their limbs were trembling and eating required great efforts.
Cases of inadequate medicinal therapy were also observed at the institution for adults with developmental disabilities in the village of Oborishte and the in the institution for adults with mental disabilities in the village of Pastra. At the Oborishte institution, region of Varna, the monitoring team observed users manifest serious side effects from their medicinal therapy – dyskinesia. The conversation with the treating physician made it clear that their daily dosage was much higher in order “to keep the aggressive impulses of some users under control.” The medical records revealed that the treatment had remained unchanged for years.
Heavy medication in order to contain aggression that goes on through the whole life is an unacceptable manifestation of inhuman keeping in “the cell of blurred conscience,” which impedes the ability of the affected persons to think and develop and leads to additional physical disabilities.
- Abuse of interdiction
Monitoring data indicate that more than 80% of the people placed in institutions are incapacitated. In most cases they are under total legal incapacitation, which in reality means a civic death: inability of the person under guardianship to independently participate in civic life, as well as in any meaningful actions for his/her reintegration. Having people under guardianship is a widely used practice even at protected homes. In reality this means that the state is trying to “reintegrate” people deprived by law of the ability to make independent decisions, for whom the protected home is just a smaller and a better home. However, they have no opportunities to participate adequately in resocialisation activities.
- Institutionalisation of people whose identity is unknown
At the institution for adults with developmental disabilities in the village of Tserova Koriya and at the institution in the village of Prisovo, region of Veliko Tarnovo, the monitors found cases of people placed by prosecutor’s order, without identity papers; given their condition, their identity cannot be established by verbal contact. These people were found helpless and placed in the closest institution under procedures unknown in our laws. In the case at Tserova Koriya, there is a file dating back to 1998; at the time of the BHC visit (March 2009) no result has been achieved. The Supreme Cassation Prosecutor’s Office was notified about these cases.
- Lack of judiciary control on placement in institutions
Such control is necessary due to the fact the placement in a social institution for people with mental disabilities who have been placed under guardianship incapacitated constitutes a deprivation of liberty, as well as with regard to the widely used practice to institutionalise people who have been cheated and robbed by their relatives, using the institute of guardianship as a tool in support of such intentions. The lack of judicial control makes it possible to place people in the institutions without exploring any other opportunity for the provision of care for them within the community, only noting formally that such opportunities do not exist.
- Lack of education and work opportunities
Given the legal status of people under guardianship, a person placed in an institution doesn’t have opportunities for education and work. The fact that the monitoring found that only one protected home provided mainstream education indicates the ineffectiveness of the legislation and the practice in the field of education for adults with mental disabilities. The same holds true for the right to work. The labour market is closed for the people under guardianship, as their will in signing any labour contract is considered null and void. The labour market is also closed for the people who are not under guardianship, but live in institutions, as institution managements are not interested in attracting employers to hire their clients. There is no regulation defining the meaning and the role of employment consultants and the programmes pertaining to the creation of adequate workplaces, with support to both the worker and the employer.
