Humans, null and void
Time stands still in residential institutions for adults with intellectual disabilities and mental health problems in Macedonia where the lack of care, abuse, filth and neglect are all miserably present
by Yana Buhrer Tavanier in Skopje, Demir Hisar, Demir Kapija, Negorci and Negotino
Your feet stick to the floor.
You walk the dimly lit, linoleum-covered corridors, and your feet stick to the floor, that is covered in urine, faeces, and soup. Tens of bedraggled, unwashed women are silently coming back from lunch, like a despondent herd, some carrying chunks of dry bread in their pale bony hands, several holding half-eaten cans of soup, some of which drips onto the floor as they shuffle by. There are barefoot women, the skin under their filthy feet making a gummy sound with each step they take. The women are all carrying spoons, not simply holding them but clutching their spoons, pressing them close to their chests, as if, or rather because, the spoons are their only personal belongings. One by one, they dissapear into their bedrooms. Some of their beds have pools of urine underneath.
The beds here in Demir Hisar, a Macedonian psychiatric hospital for 370 people, are typical for these types of institutions in this region – the vivid colours of the blankets standing out against the grey, revoltingly grimy, worn out sheets; with nothing that makes any of these beds look like they belong to anyone – no nightstands or lockers, no personal items, no photos, no clothes. These are the beds of people stripped of their identity and locked inside these grim institutional walls for years. They are people for whom their bed is also their coffin.
A similar investigation, conducted last year by the same author in institutions for adults with intellectual disabilities and mental health problems in Bulgaria, Romania and Serbia, uncovered evidence of human rights abuses, inhuman and degrading treatment and appalling neglect. It showed that reform in this field remains patchy and slow, and too often leaves the most vulnerable behind to continue to languish in the institutions.
The current investigation suggests that Macedonia is no different. The country is failing to meet international standards, and the problem is not so much the lack of funds, but the lack of genuine political will to make things better for its most vulnerable citizens. Residents are warehoused, not treated. Living conditions are dehumanising. Institutions are dramatically understaffed. And the process of deinstitutionalisation is so slow, and so fraught with bureaucratic barriers that it is almost nonexistent.
In principle, the conditions in the institutions for adults with intellectual disabilities and mental health problems should be closely and very strictly monitored by the European Commission (EC), as Macedonia is an EU candidate country, and respect for human rights is one of the main criteria for accession to the union. But, judging from the reaction by the EC to the questions the current investigation posed, this monitoring is not being done.
«Shit, shit, shit everywhere», murmurs one woman, her eyes fixed on the floor, as we pass each other at the entrance to the toilets of the locked women’s ward in Demir Hisar. Three steps forward and there it is – shit everywhere. The human excrement is spread in front of the run down, hole-in-the-ground toilets, on the tiles, on the doors, and on the walls inside. The sinks are dry, as there are no taps.
«We urgently need cleaners. We have just eleven cleaners for the whole hospital. But there is a government-imposed moratorium on the new hires, because of the financial crisis, so our hands are tied», says the director of Demir Hisar. «The hygiene is a big, big problem. We are doing the maximum we can do, but it’s the absolute minimum, that has to be done», he adds. The director complains about the lack of funds in general: «95% of our budget goes for salaries».
In 2006 the Council of Europe’s Commitee Against Torture and Inhuman and Degrading Treatment visited the Psychiatric Hospital in Demir Hisar and insisted on improvements to the “very poor material living conditions”. The Committee mentioned the need to increase living space per patient, to ensure a personal lockable space for everyone, to improve the sanitary facilities and to ensure hygiene at the hospital according to the standards that apply to all other health facilities. It also recommended that a multidisciplinary treatment approach is applied, ensuring greater possibilities for psychotherapy and occupational therapy. At this writing, none of these recommendations have been implemented. The Committee is about to visit Macedonia once again this year.
Both the directors in Negorci and Bardovci, the two other psychiatric hospitals in Macedonia, complain about the lack of money, and about the inability to hire new staff. «The money from the state is enough for salaries, food and medicine, and that’s it», says the director of Negorci, a hospital for 220 people. He needs doctors, social workers. The director of Bardovci, a hospital with 450 beds, claims that additional general practice doctors, psychiatrists, thirty nurses, and about twenty cleaners, would be crucial for the competent functioning of the institution.
Prisons or hospitals?
It is important to note that the three special psychiatric hospitals in Macedonia are not exactly “hospitals” where people are admitted, treated, and then released. They resemble social care homes and a great part of the “patients” end up in these places for life.
Just in the course of the past year, 770 patients (out of a total of 1125 for the three institutions) were hospitalised for more than 180 days each. In the Psychiatric Hospital Bardovci, for example, around a hundred patients are there “permanently”, some – for longer than twenty years. Out of the 370 people in Demir Hisar, about half have been resident for more than ten years. “Some 150-200 could easily leave immediately, if they had somewhere to go. But they are social cases”, says the director of Demir Hisar.
The thing is, they have nowhere to go. Macedonia has no network of community-based services (such as day-care centres, community housing, etc.) that could help people with mental health problems leave the institutions. There is also no government strategy for deinstitutionalisation of the psychiatric hospitals. The process of taking people out of institutions and placing them in the community exists (though fraught with problems) only for Demir Kapija, the country’s institution for people with intellectual disabilities, which falls under the responsibility of the Ministry of Labor and Social Welfare. The Ministry of Health, which is responsible for psychiatric hospitals, did not answer any of the questions posed by this investigation. Despite her promise, Daniela Aleksoska, the Public Relations staffer for the Minister of Health, never explained whether a government strategy for deinstitutionalisation is envisaged, and if so, when is it to start. The health ministry also did not comment on the inhumane living conditions, the appalling hygiene, the lack of staff – in spite of this investigator’s repeated requests by phone, email, and the prearranged in-person meeting that never happened.
“The price of 365 Macedonian Denars (around 6 Euro) per day for hospital treatment does not correspond to realistic costs, and is far from the expenditure necessary to treat these patients. The current situation in Macedonian psychiatric institutions is characterised not only by a lack of funding, but also by a reluctance to implementing changes and to introducing new methods, both on the organisational and individual levels”, says Toni Menkinoski, a lawyer with the Macedonian Helsinki Committee (MHC).
In it’s recent report on the human rights situation in the psychiatric hospitals, the MHC notes that “the general hygiene requirements for the building, are not fulfilled… The bed linen is in a very poor state. There is an alarming and urgent need for mattresses and bed sheets… The treatment at these institutions is still limited mainly to pharmacotherapy… The patients who are in the locked wards have no access to a phone… Their right to non-censured correspondence is not respected. The letters patients receive are often read by the staff… In some wards, personal lockers are non-existent”. In its report, the Macedonian Helsinki Committee recommends that the government should urgently begin deinstitutionalisation. In the meantime, the psychiatric hospitals must prepare individual treatment and rehabilitation plans for each patient, and inside the institutions, better and more humane living conditions need to be created, and various types of therapies to be introduced.
«The living conditions in the psychiatric hospitals are catastrophic. The process of deinstitutionalisation should be sped up», says the Ombudsman of Macedonia, Idzet Memeti.
But it is not even the appalling living conditions that are most depressing in psychiatric hospitals. It is the life reduced to the doling out of medication, the neglect, the days that have the meaning sucked out of them, the parallel universes – where minimal care is provided for some, but not for others.
In Demir Hisar for example, there are rooms for music therapy, art therapy, and ‘reading therapy’. But only thirty of the 370 patients visit these rooms. Most of the rest are locked inside the wards, behind the fenced windows of the grim, cold buildings, their daily route being between the filthy bedroom, the filthy bathroom, the filthy canteen and the filthy, empty day room; the stench being their constant companion, following them everywhere. The men and women look anaemic, their pale skin beaming in the dimly lit, damp corridors.
Locked wards numbers 4 and 5 in Bardovci, the psychiatric hospital at the edge of Skopje, the capital of Macedonia, is where the «most severe» cases are kept, housed in rotting old barracks. The main entrance is locked, the door to the common room in one of them is also locked from the outside, just to make sure nobody exits. Inside the open blue-tiled day room there are thirty ghosts – dressed in pyjamas, sitting still on benches or on the floor, or rocking back and forth to an internal rhythm. For some of these men and women, this daily routine has been the biting reality for more than twenty years.
Almost never let outside, the people in the locked wards of Macedonian psychiatric hospitals spend their lives either lying in their beds, or sitting in silence in the bare, boring day rooms. They are effectively prisoners. They are people serving an indefinite sentence for a non-existent crime, in inhumane and degrading conditions. And the government has no plan at all for changing this state of affairs.
How elections can break bones
«This is where the bone is broken» – explains Dr. Oliver Nedev, the former director of Demir Kapija, the special institution for people with intellectual disabilities in Macedonia. He points to an x-ray of a child. We are sitting in a café at the center of the small village of Demir Kapija. Residents of the institution pass and greet Dr. Nedev heartily. One of the men comes to our table. We saw each other the day before, when I visited Demir Kapija. The man says that it was great that we came, because curtains were hung on the windows. «The yellow curtains are not there all the time?», I ask. «Nooo», he says, «come again some time». He laughs and leaves.
«Yesterday morning I was called by friends who work in the institution, who said – new sheets were put on the beds, curtains were hung, everybody’s dressed». Oliver Nedev smiles, then turns back to the x-rays. «Here, again you see a fracture. There were ten fractures cases in Demir Kapija in the last couple of months. But these here are the x-rays of two immobile children. They can’t fall by themseleves, they can’t move by themselves. So, what could be the reason for these fractures? Inadequate care. If they were held the wrong way – by the hand or by the leg, or were thrown back into bed, a fracture can occur. These children are fragile».
According to Oliver Nedev – who resigned as director in 2008, but until recently was the doctor in Demir Kapija, the reason for this inadequate care is the inadequate, unqualified staff. «Last year we had presidential and local elections. Demir Kapija is a small village, and 150 people were employed on temporary contracts in the institution – so that they and their families would support the party of the mayor. These are unqualified people, taken from the street, literally, picked simply according to their political alliances. And they are supposed to provide special care to people with disabilities? They are harmful».
Dr. Nedev claims that around last year’s elections «everything was stolen from the institution – the meat, the cheese, the marmalade – and was redistributed to certain people in the villages nearby». He says that this practice continues – «the current director gives the products, that should feed the residents to local restaurants so he can go there anytime and eat with his guests». According to Nedev, the residents of Demir Kapija eat bread with tea twice a day, and just once a day they have lentils, peas, or cabbage. He also claims that the fuel for heating the institution is being stolen, and it is bitter cold in the winter inside the buildings.
This spring, Dr. Nedev was fired as the institution’s doctor, because he decided to share some of his suspicions of wrongdoing with the local press.
Petre Nikolov, the current director of Demir Kapija, does not want to comment in detail on these accusations. «This is pure speculation», was the only thing he would say.
There are about 280 people with intellectual disabilities in Demir Kapija, women and men, adults and children. The director denies that the institution has financial problems, and states that it does not need additional staff. However, after Dr. Nedev was fired, medications are administered by a ‘defectologist’, an archaic term for ‘special education teacher’ who has no qualifications to administer pharmaceuticals. This is a particularly dangerous, life threatening practice as most clients are administered a ‘cocktail’ of numerous hard core neuroleptic and other drugs every single day.
«There is no individualized therapy. We’ve been saying for some time now that it needs to be developed. But in this institution there is a lack of qualified staff, and way too many unqualified staff», says Slobodanka Zdravkovska, the head of the social welfare ministry’s department that is responsible for monitoring Demir Kapija.
Beyond the newly hung curtains and the neatly made up beds, covered in ‘cute’ stuffed toys, there are things you can’t fake or hide about the reality of an institution. Like the people tightly packed into Demir Kapija’s common rooms, where the holes in the corroded walls are in fact dug by human fingers. Like the ‘frozen’ children, forgotten in their cribs, or the others, left lying on the floor all day long.
In Demir Kapija, I meet Ilcho. Ilcho is 28, and until not so long ago, he was chained like a dog, in the yard of his father’s house in Angelci, a small Macedonian village. The story received a lot of media attention. The journalist Suzana Taseva, who was first to report the case, won the country’s 2008 prize for investigative journalism. Mrs. Taseva described how, after Ilcho’s mother died, his father had to take care of him alone, and decided to keep him on a chain, “so the cars won’t run him over”. After the story was out, Ilcho’s problem – or rather his father’s problem – was “solved” by the Ministry of Labor and Social Welfare, which placed him in Demir Kapija, despite the fact that deinstitutionalization of people from Demir Kapija had already begun, and he could have been offered a place in a community home. «Ilcho suceeded [in getting the help he needs]. But will the rest suceed?», asked the journalist in one of her last pieces on the subject. However, when I search for Ilcho in Demir Kapija a year and a half after he was placed there, I find him curled up in his bed, lying on one side, his knees almost touching his chin. «This is what he does, all day. Because that’s the position he was in, when he was chained in the yard, by his father», one of the workers explains. Ilcho does not undergo any special therapy. His bed has become his new yard.
“We have to pull them out”
The Open Society Mental Health Initiative (OSMHI) signed a Memorandum of understanding with the Macedonian government, regarding the deinstitutionalisation of Demir Kapija in September of 2008.
The OSMHI agreed to support the entire process (through providing funding for housing, establishing community living and other support services, providing training, as well as paying the salaries of the new housing service staff for one year after the establishment of the service, and covering a portion of the living expenses of the clients). The Macedonian government approved the project at the highest level and agreed to the plan of taking people out of the institution and relocating them to decent housing in the community. This all sounds like a simple solution to a major human rights problem, but for some reason it isn’t. According to the government approved implementation plan for establishing community-based services, over a period of three years 192 people should leave the institution – or 64 people per year, as of 2008. But the process has been incredibly slow, and so far only about 40 people have left Demir Kapija.
“Look, with the Macedonian government, we have papers and lots of promises. The fact is that we have 40 people who left Demir Kapija who are now completely new people, living in the community like dignified human beings. The problem is that there seem to be so many excuses to delay real progress on this project, and we are already so far behind”, Judith Klein, the director of the OSMHI, says. “If there are elections, we lose half a year. Then there are many bureaucratic hurdles that have to be jumped, and in all of this, it is difficult to understand why those responsible do not recognize that now is the time that a committed donor is offering this partnership, making the transformation of one of their worst institutions absolutely doable – and with a result that will not only be an enormous human rights victory, but a major success for the government”, Ms. Klein explains.
When in March this year I spoke to the director of Demir Kapija, Mr. Petre Nikolov, he said that not more than 30 more people are capable of leaving the institution. “34 are already deinstitutionalised. That is about how many more could leave. According to the plan the number should be 190, but that’s unrealistic. It can’t be done. We have people who are bedridden. We have people with the most severe mental retardation. They can’t leave, that’s impossible. So, by the summer we should be finished with the process of deinstitutionalisation of our facility. We’ll stop at 60 people».
“That’s normal, I think. Everything new is scary, and meets resistance. People in instititions are afraid of losing their jobs, once many residents start being taken out”, says Snezhana Mihajlova from the Macedonian Ministry of Labour and Social Welfare. Ms. Mihajlova is the head of a small department of just four people, responsible for the coordination and implementation of the government’s deinstitutionalisation strategy. “Our priority for 2010 is to open 6 more apartments in Skopje, and then to take an additional 132 people out of Demir Kapija, leaving only the people with the most severe retardation, and those that need medical support. These would be around 150 people”, Snezhana Mihajlova says. According to her “the most severe cases could also be deinstitutionalized and moved to places with a much smaller capacity, with medical support, not left in such gigantic institutions – but that would need a lot of funding, and is something to be considered for the future”. She points out that at the moment, the process is being financed by an international donor, the OSMHI, but after 2011 it will become entirely the responsibility of the government, and that she is worried about that moment.
Judith Klein from the OSMHI insists that in order to implement coherent and economically efficient social welfare reform, one must close the institution completely and develop the alternatives for all of the residents. “In any country, the number of people needing additional specialized support to live in a community-based setting is about one third – this is also true for Demir Kapija. Services for these people will be more expensive as they need specialised care, but these costs balance out once the institution is closed with the costs of providing services to the other two thirds of the population, as their support needs are significantly less, particularly as they adapt to life in society”, she says. “This is not to mention that the most disabled people are the most vulnerable and need the most assistance, not the least assistance, and that they can never be provided a decent quality of life in an institutional setting. It is economically inefficient to keep part of the institution operating as well as operate the alternative system in the long term. Eventually there will need to be a complete shift to the community-based system. This is what had to happen in other countries, and investments in attempting to ‘improve the conditions’ for the most disabled people in the institutions were clearly poor investments. In the Macedonian context, we have the benefit of hindsight- the experience and the evidence from other countries that have been through this, but that does not seem to count for much here ”, OSMHI’s Judith Klein adds.
Gordana Trajkovska, a mother of a child with an intellectual disability, is the director of Poraka Negotino – the NGO that provides community-based housing and other support services to people who have come out of Demir Kapija through the OSMHI programme. “We managed to take very few people out of the institution. We literally have to pull people out. We agree on something with the director of Demir Kapija during meetings at the ministry, but when we go to the institution to take the people out, it’s like the conversation never took place. The institution resists people leaving because it receives funding on a per capita basis”, she says.
Gordana Trajkovska’s organisation is based in Negotino, a small town very close to Demir Kapija. Poraka operates a day center for people with intellectual disabilities, and takes care of the houses for organised community living, where the people from Demir Kapija have relocated to start their new lives. The houses are rented from the local population, there is full time support provided by assistants, which is reduced over time according to individual needs. “At first the people in the town were against us, but now we have 20 applications from homeowners who want to rent them out to us. People saw that there is nothing to be afraid of», says Gordana Trajkovska.
Snezhana Mihajlova from the Ministry of Labor and Social Welfare says that the government plans to include the staff from Demir Kapija in the deinstitutionalisation process – “so they still provide care, but in new, better circumstances in the community”. But Poraka’s Gordana Trajkovska couldn’t agree less. «We have to ensure the quality of the services. I started working with staff from Demir Kapija, but at a certain point I had to spend more time training them rather than working with the residents. The institution’s staff is used to only satisfying the most basic needs, their work hasn’t got any substance. It is difficult to introduce a paradigm shift in thinking with staff who have worked for 20 to 30 years in a social care home. They have a completely different attitude and mentality. In the institution one assistant has to take care of 30 people. He cannot manage to dress and undress residents, let alone give meaning to their time».
Hear no evil, see no evil
The European Comission spokesperson for Enlargement and Neighbourhood Policy, Angela Filote, did not provide answers to a list of basic questions, such as how the Commission monitors psychiatric hospitals and social care homes in Macedonia – and whether it looks at living conditions, standards of care and human rights abuses. This investigation also did not get an answer to the question as to whether there are any recent EC documents on the subject, other than the annual progress reports, which say close to nothing about the matter. Most importantly, the Commission could not say what the accession criteria for Macedonia are in terms of care for people with mental disabilities and psychiatric problems inside the specialized institutions, as well as what it expects of the deinstitutionalisation process. Angela Filote’s office suggested that the press officer of the EC delegation in Skopje, Mr. Konstantin Jovanovski should answer these questions.
However, Mr. Jovanovski said only that “the institutions you mention are fully subject to subsidiarity. The only reason de-institutionalisation is mentioned [in the EC reports] is in relation to social inclusion of people with disabilities, not because the EC has any kind of mandate to monitor the situation in psychiatric hospitals. Still, even though the institutions that you mention are not subject of direct monitoring by the EC in the country, their work is in the scope of the protection of human rights and freedoms. Therefore, we do our best to encourage the country to fulfill the highest European standards in this, as well as in every other sphere, so that it can sooner join the EU family”.
Many experts insist, however, that the EU should require better track records on human rights from candidate countries, since one of the Copenhagen criteria for accession is respect for human rights.
Last year the report on institutions by this author, covering Bulgaria, Romania and Serbia, discovered horrendous human rights abuses in the three countries. At that time, the European Commission stated that it was “fully aware of the current problems in Bulgarian and Romanian institutions […] substantial progress has been made, but the Commission is aware that still more remains to be done”. In the spring of 2009 the EC warned Greece that if it does not come up with a road map for psychiatric reform, EU funding will be cut for its social projects across the board. To the question of whether this could happen to Bulgaria and Romania, the answer was that “there is always a possibility of payments being suspended under the European Social Fund”. In the case of Macedonia one could only hope that the EC would learn from its mistakes.
I meet Verche in one of the community-based homes, operated by Poraka – Negotino. We pass each other at the door, Verche dashes outside to throw away the garbage, but she stops for a second to greet us with a smile and the promise that when she’s back in a minute, she’ll make us coffee. Verche is 31, she has spent her entire life, since she was months old, in Demir Kapija, before being taken out a year ago. «I remember her very well, this specific face», says Toni Menkinoski from the Macedonian Helsinki Committee, with whom I travelled to Negotino – «I saw her a couple of years ago, when I was in Demir Kapija. She was strolling the yard like a ghost, dressed in filthy grey rags, not wanting, or not being able, to communicate with anyone. Being here, even for this very short time, has done wonders for this girl. Before she had absolutely no human dignity».
It’s not just the striking lack of care, the human rights abuses, the inhuman and degrading treatment, the stench, the filth. One of the fundamental things an institution does to you is to rob you of your identity, to erase who you are, to deprive you of substance, to crush you and leave you a hollow shell, to take away your face and replace it with a mask, the same one worn by everyone around you. Even worse, institutions also make the concept of time cease to exist. A permanent hell. Humans, null and void.