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English Language Page 2.4.1.General information The Demir Kapija social care home is an institution for permanent placement of men and women with severe forms of developmental disabilities. These include severe and profound forms of mental retardation and, to a lesser extent, disabilities caused by epilepsy and other psychiatric conditions. Many residents had also physical disabilities. This is the only such institution in Macedonia and is under the authority of the Ministry of Labor and Social Policy. “Health”: it hosted people with the most serious conditions, including all bedridden, aggressive, incontinent and senior residents, altogether 187 persons; “Dependence”: this ward is some kilometers away from Demir Kapija and hosed 101 persons with severe and moderate mental retardation, i.e. relatively better-off residents who can, to a certain extent, take care of themselves. In addition, in a separate building on the premises of the institution functioned the “UNICEF project”, another “model” care providing unit. It involved some 20 children and was sponsored by UNICEF. 2.4.2. Staff The delegation was left with the impression that the Director is a dynamic and caring person who had to live and struggle with the constraints imposed by the system. During the initial discussion she admitted that the specialized staff is insufficient to organize appropriate care for all the residents. This was the reason why she was forced to constantly approach foreign donors. The orderlies in the “health” ward, with whom the delegation spoke, did not seem to understand and were not prepared at all to attend the needs, other than the basic ones, of the residents with whom they were in a daily contact. Several of them said that their clients have only very basic needs, such as food, sleep and body comfort and that offering any rehabilitation or entertainment is useless as they are not able to understand their meaning. The staff in the “new object” and in the “UNICEF project” had a different approach to their work and their clients. It was more individualized and centered on their complex needs. The delegation was particularly impressed by the staff in the “UNICEF project”. Although most of it was young and lacked experience, it was able to compensate this with patience and devotion. Remuneration of the staff was a problem. The delegation heard complaints that the salaries were low and that they were disproportionate to the difficult work in the institution. The staff in the “new object” and in the “UNICEF project” works on temporary contract with no social and health insurance payments. 2.4.3. Placement The Institution for Mentally Disabled Persons in Demir Kapija accepts persons with severe mental disabilities from all over Macedonia, who cannot live with their families or do not have families. Their placement in the institution appears to be quite informal and in violation of international standards on personal liberty and security. It starts with an initial contact of the family with the Municipal Center for Social Work. The center, on its part, files a request for placement to the Minister of Labor and Social Policy. The Minister orders an investigation into the personal and family circumstances of the person who is to be placed in the institution and upon the submission of the report from the investigation signs an agreement to place the person into a social care institution. Thus the person placed in the institution is, in effect, deprived of his/her liberty. However no court is involved at any stage of the procedure, in clear violation of Article 5 of the European Convention on Human Rights to which Macedonia is a party since 1997. In theory, the person who is placed in the institution should have his/her legal capacity withdrawn through a court procedure, especially in view of the fact that he/she suffers from serious mental disability. The delegation was told however that this normally does not happen as the court procedure is quite expensive for both the family and the institution. It costs between 25,000 and 30,000 Denars (410 - 490 Euro). Thus, most of the residents in the Demir Kapija institution were formally not deprived of their legal capacity. There were less than 10 residents over 18 years old under guardianship. If a person without family is placed under guardianship, a social worker from the respective Municipal Center for Social Work becomes a guardian, a weird situation since he/she is hardly able to exercise any guardianship duties, especially if he/she is from municipalities that are far away from Demir Kapija. Thus, in fact almost all decisions affecting the lives of the residents are taken by other people, who are not their guardians. This is a situation of lawlessness, which requires urgent action by the Macedonian authorities to adopt an appropriate legal framework for the protection of the rights of mentally disabled persons placed in a social care institution. Before placement the Municipal Center for Social Work undertakes categorization of the person’s disability, which is done by the local medical professionals. This certification apparently doesn’t have anything to do with the determination of needs as in most of the cases persons placed in Demir Kapija do not have individual programs designed to attend their needs. It has rather some relevance to the social welfare benefits the residents are entitled to. Thus, according to the social worker, the following documents are required for placement: Social anamnesis; Decision for placement; Certification of the category of developmental disability; Personal medical journal; Personal record of vaccinations; Decision for the deprivation of legal capacity. With the exception of the latter, all the residents of the social care institution in Demir Kapija have the above documents, which constitute their personal file upon admission. This file is filled with other documents produced during their stay at the institution and is kept and maintained by the social worker. 2.4.4. Material conditions and hygiene Material conditions and hygiene differed between the “health” ward and the two other – the “new object” and the “UNICEF project”. The “health” ward is a big building the different floors and corridors of which hosted residents with different conditions. The IHF delegation was able to visit a number of such rooms and adjacent areas. Despite the fact that the staff did its best to clean, in expectation of the visit, the hygiene, especially in the toilets, left something to be desired. The living space per person in the ordinary rooms was between 2.5 and 6 sq. m., although in many cases it was hard for the residents, especially the bedridden ones, to use any space. The typical room in the “health ward” was 20-30 sq. m., with 5-8 beds, linoleum on the floor and a TV set. There were no lockers or other places to store personal belongings. When asked about this, the chief nurse explained, “the residents are not aware what the lockers serve for”. There was an access to daylight in all the rooms although in some it was not sufficient and they looked a bit dark. The electricity was turned on and off centrally. Most of the day rooms visited by the delegation in the “health” ward served also as sleeping rooms. There the residents who can move spend most of their day watching TV or just hanging around. E.g. a day room of 20 sq. m. with five beds would host during the day 12 residents. This will probably make it hard for the residents who sleep in that room to use their beds during the day. Many residents walked in the “health” ward in pajamas and some had their heads shaved, according to the staff, because of lice. The delegation visited several rooms for bedridden residents. One of them was 25 sq. m. with six beds, all occupied by residents, who spend in these beds most of their life. Apart from the beds, the room had only one table and a couple of chairs. Another room of 20 sq. m. hosted 8 bedridden juveniles and, in addition to their beds, had a cupboard, a wardrobe, a TV set and a couple of chairs. The ceiling was nicely decorated, which brought some joy in the cramped situation. “Dangerous” residents were put together in separate rooms in C2 ward, a rather unwise decision, probably taken because the institution did not have enough staff to ensure appropriate supervision in an integrated environment. The delegation visited two such rooms – one for juveniles and one for adults. The room for “dangerous” adults was the worst room the delegation saw in the institution. It had bars on the windows and was miserably furnished – there was nothing apart from the 11 beds of the residents and a heap of clean clothes on one of the beds. Another room for “dangerous” juveniles measured 30 sq. m. and had 10 persons, all of them in pajamas, guarded by an orderly. It had a TV, a wardrobe and nine chairs in addition to the beds. In contrast to the “health” ward, the “new object” had a rather advanced material environment, suitable for the needs of the residents accommodated there. The ward consists of six apartments, each having four bedrooms with three beds, a kitchen, a day room (which served also as a dining room) and a renovated bathroom (much cleaner than the once in the “health” ward). In addition to the apartments, the ward had several rooms for activities and entertainment. It had a sewing room, a room for physical therapy, a room for “creative activities” (painting, cutting decorative patterns from paper, producing toys) and a big hall with 72 chairs. Part of the sewing room was equipped with instruments and workbenches for carpentry but at the time of the visit this activity had not started yet. The small building of the “UNICEF project” consisted of several day rooms, in which the children were grouped and had activities together with the attending “defectologists”. There were four groups with five children in each group. The children were placed in groups according to their “mental age”. There were seven “defectologists” and two orderlies taking care of 20 children. The rooms were small but were nicely decorated and personalized. The building also had a clean kitchen. Compared to the material conditions in the “new object” and in the “UNICEF project” the “health” ward seemed all the more miserable. As the institution has many incontinent residents, washing on a daily basis is a must and it was organized in a separate unit with a huge task force. Drying in the hot summer day of the visit took place at a specially designated vast area in the yard of the institution. 2.4.6. Food Food in the institution is provided on the basis of the national standards for nutrition in state institutions. These standards establish daily caloric values of the food for three different categories of residents: those who can consume only liquid food, those who are bedridden and those who can walk on their own. The respective daily caloric values of the food for these three categories are: 1,500 cal., 2,000 cal. and 2,300 cal. 2.4.7. Medical care Medical care in the institution was provided by the medical personnel on the staff of the institution and by several medical practitioners hired on a temporary contract basis. The institution had one physician specialized in general medicine and 11 medical nurses on staff. In addition, it had contracts with five more specialists: a psychiatrist, a pulmologist, a pediatrician, an X-Ray specialist and a dentist. The doctors were available only during the day but they could be called during weekends and holidays. The dentist visits the institution once in two weeks or when urgently needed. The nurses work on shifts. The first day shift was of two nurses and 25 orderlies and the second day shift – only with 22 orderlies. At night there is only one nurse and 11 orderlies on duty. Hospital care, including in cases of emergency, is provided by the hospitals in Kavadarci, Veles and Skopje. About one half of the residents on the day of the visit were on psychotropic drugs (including anti-epileptics). Around 50 of them took neuroleptics, for the most part Chlorpromazine and Haloperidol. The staff admitted that in the past frequent use of these drugs lead to extra-pyramidal side effects, such as tardive dyskinesia. The delegation saw some, although not many, residents that exhibited such symptoms. According to the staff this problem is less prevalent now that the neuroleptics are normally indicated with appropriate correctors, such as Mendilex (Akineton). The institution buys all the medicines from its budget. None of the residents can benefit from the so-called “positive list”, i.e. the list of medicines patients can get for free. The staff said that, despite this, they have enough funds to buy the necessary medicines. When asked whether the staff used seclusion or restraint the Director said that they normally don’t and that they try to calm the agitated residents with words. Only in rare occasions they would isolate the resident and administer an injection. There is no special room for isolation in such cases however. The only isolator the institution had was a room for isolation of people who had contracted infectious diseases, such as tuberculosis. On the day of the visit the institution had three such persons who were under the care of the Skopje Institute for Lung Diseases. The number of deaths in the institution was on a decrease for the past four years. The trend was as follows: 2002 – 13 cases (3.3% of the residents); 2003 – 10 cases (3.7% of the residents); No autopsy was performed in any of the cases for the past four years. 2.4.8. Rehabilitation and activities The “new object” and the “UNESCO projects” were organized to serve as “models” and they differed from the “health” ward not only in material conditions but also in the scope of activities offered to the residents. The “health” ward offered very little in terms of rehabilitation and activities. For the most part the residents were maundering about in their bedrooms or in the day rooms or watching TV. In several rooms the delegation saw residents just lying on mattresses on the floor with an orderly staying or sitting besides and not doing anything. In the rooms for “dangerous” residents the orderlies were serving as guards constantly watching around residents who were standing or sitting idle, not engaged in any meaningful activity. The “health” ward had a “creative workshop”. There one of the “defectologists” was organizing painting and producing toys and textile products (shawls, serviettes), some of which were for sale. When visited by the delegation, however, there were only two residents there and the operation was rather small-scale to be able to offer activities for a significant number of residents. In contrast, the “new object” and the “UNICEF project” offered a variety of activities involving all their residents. Every apartment in the “new object” had an educational specialist engaged with 10-12 residents in a variety of activities related to their daily life – preparing food, cleaning, making-up the beds and the rooms, listening to music, playing games etc. In addition, residents used the facilities in the sawing room, the physical therapy and the creative workshop in shifts under the supervision of the respective specialists. The “new object” had also a theatrical group. 40 residents took part in the Special Olympic Games for people with disabilities and won medals in football and table tennis. In a similar manner, the children in the “UNICEF project” were taken care of in groups of 4-5 by qualified educationalists. They were offered a variety of activities – games, painting, music, walk in the open air. There was some training into basic skills. The children had individual programs and the educators had to file daily reports on their development. Some children were taught to read and write. The staff, although young and inexperienced, made a very good impression on the delegation with its patience and emotional involvement with the children. Since the institution serves as the only social care institution for people with severe developmental disabilities for the entire Macedonia, family visits are a serious problem. Families, especially from Northern Macedonia have to travel big distances and to spend a lot of money in order to visit a relative in Demir Kapija. The institution itself does not offer facilities for accommodation of families and they would find it hard to find anything in the small town. This, combined with the fact that many residents were abandoned by their families, some at a very early age, explains why family visits in the institution were so rare. According to the staff, there were only 2-3 family visits per month. Only one mother came to visit her son every week. |
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