Hell as an Institution

The Unit stands at the exit from the town of Lechaina in the direction of the village of Myrsini, facing the substation pylons of the Greek public power corporation. The building, which belongs to the episcopal see of Elis, is a four-storied, cross-shaped construction crowned by a dome. Its design could hardly be described as suitable for its intended use.

Perhaps that was the reason it was deemed necessary to restrain the seven-year-old blind girl who had been admitted to the institution at the age of three. Fully mobile yet blind, brimming with the energy of childhood, she would have needed someone to watch over her constantly. Lechaina has always been understaffed. “For her own good”, then, someone decided that she should be locked up in a cage. By the time she was sixteen, she could not even articulate her own name.

The Lechaina Unit was founded in 1987 as a “Child Care Centre”, or KEPEP, and began operating two years later, with the mandate of caring for disabled children between the ages of six and eighteen. In its initial conception, it was intended for the children of the Region of Elis and the wider Peloponnese. Progressively, disabled children from all over Greece were brought in, either following a request by their parents or a State Prosecutor‘s order. Formerly an independent institution, since 2013 it is one of the annexes of the Centre of Social Welfare of Western Greece, which is supervised by the Welfare General Secretariat of the Ministry of Labour. As a rule, the care workers at the Unit are unskilled and their numbers insufficient: five healthcare workers, seven assistants and five auxiliary contract staff for 44 residents, at present. The carpenter who fashioned the cages is also considered institution personnel.

Frozen in Time

In the Lechaina Unit, disabled children were strapped to their beds or kept inside cages for years, never being allowed to get up or walk, not even for an hour. These practices were hardly a secret.

In 2008, a group of European volunteers who spent some time at the Lechaina Centre, shocked by the manner in which a modern European state was treating disabled children, drafted a report which they distributed to various European officials and human rights organisations.

In September 2009, a delegation from the Children’s Ombudsman‘s office, comprised of the Ombudsman himself, Giorgos Moschos, the Ombudswoman for Health and Social Protection, two scientific experts and May Papoulia, a psychologist and wife of the then President of the Republic, visited the institution for the first time. In March 2011, the Ombudsman issued a damning report on the Unit’s inhuman conditions.

Shortly before the publication of the delegation’s findings, in February 2011, the cameras of ERT, the Greek public broadcaster, entered the institution. The news story aired in the main evening news and Andreas Loverdos, the Minister of Health at the time, intervened on air.

After lauding the work of the manager of Lechaina, the minister announced his intention to allow journalists inside all of the country’s institutions to report on the living conditions. When the newscaster observed that journalists should shed light on issues, but it was the Minister’s job to solve them, Loverdos promised that five more healthcare staff and an additional three workers would be hired by the end of the year, attributing the torture brought to light by the news report to understaffing. He also promised that new premises would be secured, so that minors could be separated from adults.

Three years later, pictures from Lechaina spread across the world, when the BBC published an article headlined The disabled children locked up in cages. A few days later, Katerina Papakosta, who by then had become Deputy Minister for Health in a new government formed by New Democracy, visited the institution in a move that seemed rather forced, after the outcry that followed the article’s publication.

In her statements to the media, she claimed that the Unit did not fall within her mandate but that of the Ministry of Welfare and stated: “I came here on my own initiative to examine (the situation), because I have been informed by scientific experts that the cots, where a number of children must be kept for their own protection, have been grossly misrepresented by others. I questioned the scientists, who are experts, and they told me that this is how children are protected in these circumstances, there is no alternative.”

Having normalised cages as “cots”, Papakosta, too, promised the recruitment of qualified personnel.

It should be noted that the widespread use of chemical suppression through medication, the practice of restraining children to their beds using straps, the use of cages and electronic surveillance, were already condemned in the 2011 report of Children’s Ombudsman as “practices constituting the violation of the human rights of the patients and highlighting the problems of the institutions.”

As to the reassurances given to the Deputy Minister by “experts”, it should be noted that in the course of the Ombudsman’s investigation, which led to the aforementioned report, the Unit’s psychiatrist at the time, Dionysios Tsangos, was asked to submit a written reply. In it, he stated: “I clearly acknowledge that restraining a patient with straps largely violates individual human rights, but they are superseded by the right of life itself. Given the severity of the patients’ mental disability, it is absolutely necessary to restrain them with straps to avert any self-harming acts which the patient will naturally not become aware of due to their condition. The straps will continue to exist for as long as such severe, high-risk level cases continue to exist. As to the matter of the wooden enclosures, a proposal was submitted by the scientific team in April 2008 and a report by child psychologist Mrs Lolou will follow. Certainly, patient accommodation can be improved with the use of more suitable beds, successfully combining the goals of development and security.”

“The Authority believes that the practices chosen clearly fall outside the scope of legality and gravely contravene the duty to respect and protect the human rights of residents with serious mental disabilities.”

The Ombudsman’s report noted that the Unit’s psychiatrist had responded without submitting “any medical opinions on specific patient cases, nor any scientific evidence supporting the need for restraint”. It also pointed out that “the Recommendations of the European Committee for the Prevention of Torture under The Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment do not appear to justify physical restraint, with the exception of psychiatric units for adult patients and only under certain conditions. Confinement to beds/enclosures in particular, is considered an unsuitable psychiatric practice and constitutes degrading treatment.” As to the decision to “use means of ‘mechanical restraint’, such as straps, its appropriateness is decided on a case-by-case, mutatis mutandis basis and is used rarely and only when prescribed by a doctor (or following a doctor’s immediate notification and receipt of approval). Recourse to it should be made exceptionally, as a last resort and for the minimum duration necessary, while its long-term use has no therapeutic properties and is considered misuse in therapeutic terms. This practice cannot be excused by staff shortages, as every instance of restraint demands that a member of staff provide immediate personal assistance and constant supervision, while electronic surveillance cannot substitute the constant physical presence needed. At the same time, every such instance should be recorded in a special register and in the patient’s personal medical file with specific details, such as the start and end time of restraint, the doctor’s name etc. Staff must receive ongoing training in alternative, gentler methods of patient control and be educated in the effects the practice of physical restraint has on the patient.  The Authority believes that the practices chosen clearly fall outside the scope of legality and gravely contravene the duty to respect and protect the human rights of residents with serious mental disabilities.”

The situation in the Lechaina Unit, therefore, was not only fairly widely known, but also officially documented, by March 2011.

“From Asylum to Society”

Approximately a year after Deputy Minister Papakosta’s visit, the Emancipation Movement for the Disabled “Mideniki Anohi” (“Zero Tolerance”) occupied the Lechaina premises. The occupation, a protest against the abuse of disabled children taking place in the Unit, began on November 4, 2015, and lasted for four days.

We met with Antonis Rellas, a film director, disabled activist, and member of Zero Tolerance, in his apartment. He let us in himself and led us to his studio.

“We had done our research, observed what our fellow disabled had done abroad,” he told us. “In Great Britain, this process had been initiated by the disabled themselves. We based our actions on this pre-existing model. We said, ‘Let’s go do this, same as everyone else.’ We, on the outside, must make a stand for the lives of those on the inside. Institutions are where the most vulnerable of vulnerable disabled persons are kept, those who are unable to advocate for themselves, have no one else to advocate for their rights, neither the personnel working in that field nor their parents, should they still be present.”

A video can be found on Zero Tolerance’s youtube channel, entitled From Asylum to Society. Rellas put the footage together immediately after the occupation, to be screened for journalists during the press conference Zero Tolerance held upon its return to Athens.

“We arrived at Lechaina during mealtime,” he said, “nine people in four cars, with two cameras. We wanted to record what was happening and highlight those that society rejects by relegating them to an isolated building somewhere far away, turning a blind eye to these images. We wanted to highlight the horrors at the nucleus of disabilitisation, which is none other than institutionalised living. For us disabled activists, there is no such thing as a good institution. Even if Lechaina were the Hilton, it would remain a secure-type institution that violates every notion of human dignity. I have seen people restrained with ropes in other institutions too, not just Lechaina. Nonetheless, Lechaina is a case study in disablism. No matter how prepared we were, the reality exceeded our worst nightmares…”

“Who prescribed physical restraint? Who prescribed prolonged chemical suppression?  Not holding anyone accountable is like asking us to accept that the disabled residents are not worthy of living.”

During the occupation, four members of Zero Tolerance filed a complaint with the State Prosecutor’s office in Amaliada, denouncing the human rights violations against the disabled children and youths kept at the institution.

“To this day, since 2015, we have not been called to testify,” Rellas told us. In fact, the Prosecutor’s office archived the complaint in 2016.

“There are specific liabilities at stake,” Rellas said. “Who prescribed physical restraint? Who prescribed prolonged chemical suppression?  Not holding anyone accountable is like asking us to accept that the disabled residents are not worthy of living and therefore, no criminal liabilities arise. The UN, who saw the material we gathered during the occupation, says this is torture. As do we. That was what we witnessed. Torture is what we witnessed.”

On November 5, 2015, the UN Human Rights Committee publicised its concluding observations after examining Greece’s implementation of the International Covenant on Civil and Political Rights. Regarding the situation at Lechaina, the Committee stated that “the State party should take immediate measures to abolish the use of enclosed restraint beds and systematic sedation in psychiatric and related institutions. The State party should also establish an independent monitoring and reporting system and ensure that abuses are effectively investigated, those responsible are prosecuted, and redress is provided to the victims and their families.” Similar recommendations had been made three years earlier, with specific reference to the institution at Lechaina.

On November 13, 2015, a few days after the occupation staged by Zero Tolerance, the Greek Helsinki Monitor, an NGO human rights watchdog, filed a complaint at the State Prosecutor’s Office of the Supreme Court of Greece. “In view of the fact,” the complaint stated, “that the long-term torture of children took place with the knowledge of all authorities, from the Ministry down to the local prosecutor’s office, while the report of the Ministry’s Committee confirms that this is standard practice in psychiatric units across the country, the Prosecutor of the Supreme Court is asked to order the judicial investigation of the claims made here, instructing a public prosecutor in Athens to this end, and demanding that the Ministry of Labour immediately cease using these inhumane methods that amount to torture.”

None of this was enough to mobilise justice to pursue those responsible for the fact that disabled children and young people were being kept in confinement, physically restrained in cages of two by two by one metres, not being let outside even for an hour, medicated for psychiatric and other illnesses — despite the fact that, according to the study carried out by the Institute of Child Health, a research and clinical intervention centre overseen by the Ministry of Health, out of the 78 people that have resided in the Lechaina unit over the years, only five had been admitted to a psychiatric hospital for psychiatric disorders. 

“In Greece today,” Giorgos Nikolaidis, Director of the Department of Mental Health and Social Welfare of the Institute of Child Health, told us, “no court has the legal capacity to impose such a sentence on anyone. How is it possible to tolerate that a person be subjected to this confinement and not ask who ordered it and why? Which ministers, general secretaries, which of my colleagues gave instructions that these people be restrained? Who imposed this deprivation of their rights?”

Breaking the Cages

Shortly after the occupation by Zero Tolerance, the Institute of Child Health submitted an intervention plan to the Centre of Social Welfare of Western Greece, under whose jurisdiction falls the Lechaina Unit. In March 2016, the Institute, along with members of Lumos, the British charity founded by Harry Potter writer J. K. Rowling to promote and advocate for deinstitutionalisation, visited the premises.

At the meeting which followed at the Ministry of Labour, it was decided that Lumos would fund an emergency intervention, with an initial duration of six months. The intervention team would release the patients from their restraints, re-examine the use of medication, and prepare them through appropriate training, so that they could either return to their families, where possible, or otherwise move to smaller hostels, where the effects of institutionalisation would be alleviated. Meanwhile, the government was supposed to form a plan to radically restructure institutions, with the ultimate aim of deinstitutionalisation.

The emergency intervention was launched in July 2016, under the scientific supervision of Giorgos Nikolaidis. It was to last six months, because, according to Nikolaidis, “rather optimistically, we believed that by then, the government would do something to radically restructure these services, develop new facilities and permanently close this institution — how could they not?”

“Unfortunately,” he said “the fact of the matter is that, after a lot of pressure, they simply gave an approval so that an initiative taken by other people and institutions, with the funding of others, could be implemented. A programme that enjoyed no jurisdictional backing vis-à-vis the unit in question, its personnel, the way it functions. The political leadership just said, ‘Great, you can go to the Unit and do what you think is best’.”

Two summers later, we visited the Department of Mental Health and Social Welfare of the Institute of Child Health for the first time. Giorgos Nikolaidis had just entered his office and was in the process of transferring a video from his phone to his PC. He invited us to view some of the material.

The first video was shot as the carpenter of the Lechaina Unit dismantled the wooden cage of a twenty-year-old man, who had been confined to it for years. The man’s initial disbelief subsides, as joy and relief burst forth in almost ecstatic laughter. The camera turns back to the carpenter and switches off.

In the second video, someone else is holding the psychiatrist’s phone. The scene takes place in the sea. Nikolaidis is holding a pool noodle, the buoyant foam tube used to teach very young children how to swim. He has passed the tube under the waist of another Lechaina resident, stretched him out on his back, and sways him gently from side to side. Another outburst of joy is heard, as a long-suffering body finds relief in the water.

Despite the admission by the political leadership that institutionalisation must end, and that the Lechaina Unit must be shut down, a decision to prohibit new admissions was never officially made.

Antonis Rellas decided to follow the course of events from Zero Tolerance’s occupation to the promised closure of the institution not just as an activist, but as the director of a documentary about Lechaina. Having visited the Unit over thirty times these past years, he explained: “I had the chance to watch how behaviours changed. How the residents I first met, who were uncommunicative, eyes vacant as they lay strapped to beds or locked inside cages, chemically suppressed to the point of being unable to hold up their head, began to blossom. To watch them leave the narrow confines of the bedroom and venture into the dining room, go to the floor above for an activity, to develop their skills. We heard them speak, utter words. Some began to express specific requests, ‘I want a bedside table’, ‘I want a remote control’, ‘I want my own clothes’. That’s a huge leap for someone who has been utterly dehumanised, who has been turned into a zombie by receiving ‘the prescribed treatment for their own good’.”

“I witnessed their fears and inhibitions,” he went on. “For them, normality was the bed, the cage, the straps. Even after the intervention team removed their restraints, do you know how they slept at night? In the sleeping position that they had been kept for years. For them, the most comfortable position was the position of torture. In other words, we made people feel comfortable being tortured.”

One of the many paradoxes of this story is that, despite the admission by the political leadership that institutionalisation must end, and more specifically that the Lechaina Unit must be shut down, a decision to prohibit new admissions to the institution was never officially made.

Rellas recalled such an incident: “A woman came to leave her child, accompanied by her mother and a friend.  The child was around twelve years old and high functioning. She was evidently being pressured to abandon the disabled child and focus on her ‘normal’ children. Her mother was even more adamant, saying the place looked great and the child would have a wonderful time there. Nikolaidis took her into his office, shut the door and they talked. He explained that in six months, the child would no longer be in the same state. She left his office in tears. She took her child and left.”

 “That was not the only incident where admission was averted,” explained Nikolaidis. “We had asked for admissions to be prohibited, everyone agreed, but that agreement never translated into a legal act. I used to arrive at Lechaina and be told that the Board of Directors had admitted a new child. Every time we had to rush to right things after the fact. I would meet the parents, explain the implications of such an admission, try to understand why the family was asking for this. Usually, there was a lot of hidden pain, the decision to leave their child at an institution was not sudden.  Therefore, we created the after-school clubs for many of them, activity clubs to occupy their children after special school. The aim was to offer families some respite so that the children did not end up in an institution.”

Most of the stories shared common ground. “These were children,” Nikolaidis told us, “with mental disabilities that the family had kept until their preadolescence- adolescence and then found harder to manage. They usually had other children with typical development too and struggled to look after them all. We set up this service at Lechaina and Patras so that the child could stay at a space with qualified personnel who would occupy them, train them, and then be able to return home at night.”

Resistance

The emergency intervention that was intended to last six months ended up lasting for almost three years, after repeated extensions. Experts have pointed out that reintroducing people who had been subjected to extreme and prolonged abuse into humane conditions was always going to be difficult, but their task was continually complicated by the resistance that they met.

“If we had seen a child with typical development inside a cage in those news reports, the reaction would have been different. In the case of disabled children, both the system itself and, unfortunately, a large section of society accept all too willingly that there is no alternative.”

During one of our visits to the Lechaina Unit, we met Patty Sotiropoulou, special needs educator and member of the emergency intervention team. As introductions were made, we witnessed the following incident: one of the centre’s residents had undergone surgery following self-injury to his eye. The surgeon had recommended forty-five days of bed restraint to protect the wound. Our arrival at the centre coincided with the end of his confinement and the intervention team was asking staff to transfer him to a bed. The staff resisted this move, claiming that it could be dangerous because the resident had chewed on his mattress… ten years ago!

 “One day, members of the team took a girl outside for a walk in the courtyard,” an exasperated Sotiropoulou told us. “The girl fell down and needed two stitches on her chin. Not only did the staff overreact due to their reigning fear of accountability, but the doctor who put in the stitches also instructed that she be kept inside a cage for ten days. Ten days confinement for two stitches! And when you point out the absurdity, you just get told: ‘doctor’s orders’.

Sotiropoulou said she had been exhausted by the constant battle over matters that should be self-evident. “No culture has been fostered,” she said, “that it is unacceptable to keep children inside cages in an institution. If we had seen a child with typical development inside a cage in those news reports, the reaction would have been different. In the case of disabled children, both the system itself and, unfortunately, a large section of society accepts all too willingly that ‘there is no alternative’, that ‘the specialists say they need to be physically restrained so they must be right’, and ‘thank goodness there is an institution to house them’.”

The battle over matters that should be self-evident, as Sotiropoulou put it, rages at the Lechaina Unit even when the proposed changes are also intended to benefit the workers themselves. 

“During the intervention,” Sotiropoulou told us, “we trained staff in the use of a small crane to lift people from the bed. It is essential that the residents change positions. It might not sound like that big of a deal, but there is a world of difference between spending twenty-four hours a day confined to a bed and getting up, both physically and in terms of receiving some stimulation. At the end of the day, only our team and the volunteers use the crane.”

“It’s a small example of the resistance here,” she said. “You have a goal, to get people out of bed. And it can’t be achieved. You give them a tool that can help the carers, too. And I say this being fully aware that just changing the sheets and diapers of so many people is extremely taxing physically. And yet, they will not use it. So, on the one hand, you see a resistance to change, even when the change is beneficial to them, and on the other hand, you realise that they cannot appreciate the importance of people being out of bed.”

The deinstitutionalisation that never was

In December 2017, the Greek Government announced that it would allocate fifteen million euro from the super-surplus to be shared between the deinstitutionalisation of the Lechaina Unit and the Centre of Social Welfare of Attica, with the promise that a detailed plan would follow in the immediate future, setting out the transition process, the facilities to be developed, the timetable, etc.

 “Incidentally,” Nikolaidis told us, “I should mention that we had already drafted such a detailed plan and submitted it to the government, as well as the board of directors of the Centre of Social Welfare, and the relevant services of the Commission and other bodies both within Greece and abroad. We had also discussed it with the permanent personnel of the Unit. I’m not saying that this was the best plan and should be adopted as the final detailed plan. I’m just saying that the commitment made by the government to form such a plan never materialised. The most disheartening aspect is that this time the funds are there, so that’s not the impediment.”

“Having drawn up a plan for deinstitutionalisation and secured a budget for that purpose, and seeing that no steps were being taken in that direction, we had no intention of remaining at Lechaina to window-dress the perpetuation of institutionalisation.”

The emergency intervention ended in February 2019. When we asked Nikolaidis why the Institute of Child Health did not continue with the intervention, as well as why the collaboration between the Institute and Lumos was not renewed, he replied: “Because in February 2019, the representatives of Lumos visiting Greece met with the Minister for Social Solidarity Theano Fotiou and were informed that for as long as they cooperated with us, any cooperation with the Greek government was out of the question. So Lumos interrupted its cooperation with us and began working with NGO SOS Children’s Villages, which was recommended to them.”

We went on ask why in Nikolaidis’s opinion the government, through its minister, would do this. 

“I think,” Nikolaidis told us, “it was because we kept raising the need to close down the unit, and for a number of real actions, not PR, leading to the residents’ psychosocial rehabilitation and deinstitutionalisation to be taken. Ms Fotiou had probably decided that she wanted to adopt ostensible rather than true actions. The timing also coincided with the completion of a phase of our actions in Lechaina, with the gradual and progressive transfer of all the residents out of confinement, be it cages, or straps or any of the other inventive methods used by the institution. Our task had been to provide interim emergency relief geared towards the abolition of confinement, pending the implementation of a deinstitutionalisation scheme. Having completed that work, having drawn up a plan for deinstitutionalisation and secured a budget for that purpose, and seeing that no steps were being taken in that direction, we had no intention of remaining at Lechaina to window-dress the perpetuation of institutionalisation.”

Former Minister Fotiou did not comment on these statements by Nikolaidis, despite our repeated requests. Lumos likewise did not reply to our request for comment. SOS Children’s Villages, which signed a cooperation agreement with Lumos in May 2019, replied that “after a request by Lumos and the Ministry, we agreed to become the organisation responsible for dispensing salaries to personnel that was hired for three months, without participating in any way in the scientific work, or observing its implementation on location”. 

In the event, personnel to staff the action team that would implement a three-year deinstitutionalisation programme was hired in June 2019 on twelve-month contracts. Selected by competition, team members have no work experience in matters of deinstitutionalisation. This move provoked the strong reaction of the institution’s staff, who once again reiterated their longstanding request for the recruitment of permanent personnel.

While time was again grinding to a halt in Lechaina, the Ministry of Labour and Social Solidarity came under increasing pressure to submit a long overdue general deinstitutionalisation strategy proposal, which was an obligation under the terms of 2014-2020 NSRF funding, and should in fact have been submitted since 2014. The Ministry asked for technical assistance from the European Commission and the Structural Reform Support Services (SRSS). A Brussels-based NGO, the European Association for People with Disabilities (EASPD), was awarded a 200.000 contract by SRSS to draw up a deinstitutionalisation plan for Greece.

In July 2019, national elections were called, SYRIZA lost power, and New Democracy found itself in government. Domna Michailidou became the new Minister. 

EASPD presented a draft paper on a national deinstitutionalisation strategy to the Ministry, as well as several experts, in January 2020. Presumably, somewhere at the end of this process, the promise made to the Lechaina residents through the emergency intervention, that they may have a chance to leave institutionalised living behind, might eventually be fulfilled. For the time being, though, they have to wait and endure – again.

When asked about the feelings their experiences at Lechaina have left them with, everyone we spoke to gave the same reply: frustration. Antonis Rellas’ response, when asked about his hopes at the start of filming the documentary, was riveting: “I was hoping that the final frame would be Lechaina closing. Yes, I feel frustrated. I had hoped that the announcement of the deinstitutionalisation scheme would be the turning point, that the moment was finally upon us. That it would start with Lechaina and spark the desire to do the same everywhere. That all institutions would be shut down and that no unprotected child would have to go through this again. That even the child’s hospital stay would be short-term, and it would be fast-tracked into foster care. That the conditions allowing the biological family to care for the child with the help of a welfare state would be created. That someone would explain that having a disabled child is not the end of the world.”

Frustration, then, and sadness. “For us,” Rellas said, “the residents of Lechaina have a face, a name, a history. We got to know them; we became friends. I feel sad because we did not get to see them live in different circumstances. At least not yet, because we hope that someday we will. But we need the help of civil society for that to happen and sadly, it is not mobilising.  That is the heart of the matter. It would be a great step forward for society as a whole if we released the disabled from institutions.”