ΙΔΟΥ ΟΙ ΝΕΕΣ ΑΠΟΚΑΛΥΨΕΙΣ ΓΙΑ ΤΟ ΚΟΛΑΣΤΗΡΙΟ ΤΟΥ ΚΕΠΕΠ ΛΕΧΑΙΝΩΝ

ΠΕΝΤΕ ΕΥΡΩΠΑΙΟΙ ΕΘΕΛΟΝΤΕΣ ΚΑΤΕΓΡΑΨΑΝ , ΒΙΩΣΑΝ ΚΑΙ ΕΙΔΑΝ ΣΤΟ ΙΔΡΥΜΑ - ΚΟΛΑΣΤΗΡΙΟ , ΕΚΕΙΝΑ ΠΟΥ ΟΙ ΤΟΠΙΚΟΙ ΠΑΡΑΓΟΝΤΕΣ, ΠΟΛΙΤΕΥΤΕΣ ΚΑΙ ΛΟΙΠΟΙ ΠΑΡΑΤΡΕΧΑΜΕΝΟΙ ΔΕΝ ΕΙΔΑΝ ΠΟΤΕ...

Η ΑΝΑΦΟΡΑ ΤΟΥΣ ΞΕΧΑΣΜΕΝΗ ΣΤΑ ΣΥΡΤΑΡΙΑ ΤΩΝ ΑΡΜΟΔΙΩΝ ΔΕΝ ΠΡΟΒΛΗΜΑΤΙΣΕ ΠΟΤΕ ΚΑΝΕΝΑΝ ΚΑΙ ΘΑΦΤΗΚΕ ΚΑΝΟΝΙΚΑ... 

ΙΔΟΥ Η ΥΠΟΚΡΙΣΙΑ ΣΑΣ ΚΥΡΙΟΙ ΥΠΕΥΘΥΝΟΙ ΤΗΣ ΗΛΕΙΑΣ ΚΑΙ ΟΧΙ ΜΟΝΟ

Working with people with compromised development and their rights to access a full and rewarding life.

Report about the children’s human rights inside KEPEP Lechainon, Illias Prefecture, Greece.

INTRODUCTION

1.1 Who we are and what we are doing.

The following report has been constructed by a group of five volunteers of diverse nationalities, each of whom are deeply worried by the situation that Greek children with disabilities face. We approach you to ask for your support and advice about the issues that we have observed during our work on the project at KEPEP.

All of us arrived in Greece as part of the Youth in Action Program-European Voluntary Service for seven months or more. Our project is located in Lechaina, Ilias prefecture, one hour from Patra, the most important city of Peloponnese. Our activities focus on offering emotional support to the children who live in the Children’s centre KEPEP Lechainon, and is achieved through recreational play activities and taking them to the therapy room. The name and the number of our project is: To “Hug-e” work: special smiling AT kids”, 2007-GR.

We have reached the conclusion that KEPEP, Lechainon does not manage to promote basic human rights that ensure that these children with disabilities can live a worthy life in optimum conditions, developing their own abilities and some amount of self care.

We would like to think that the subhuman conditions that these children live currently in will change someday. At the same time, we feel a great ethical responsibility to bring their plight to the attention of somebody who has the ability to make changes. We are calling for a commitment and strategic action from the Greek state with respect to the population with special needs and in particular to Greek children with disabilities.

1.2 What KEPEP is.

1.2.1 What we are told.

According to the institutional information that is given to the incoming volunteers before arrival, we present to you the following passage:

‘KEPEP Child Care Centre was established in 1987. It is a Centre specialised in the care and housing of seriously disabled children and young people, aged 6 to 28 years old1 and coming from families that lack financial means or abandon them. The majority of the institution inmates are severely handicapped mentally and physically. The institution occupies sufficient number of nursing staff, compromising around 85 nursing staff. KEPEP provides the following scientific services: medical diagnosis, occupational therapy, physiotherapy, psychological and speech therapy. The inmates participate in a daily programme that aims to improve their abilities as well as their life conditions. However this programme needs to be more effective; the perfect way to achieve this is by involving an active group of volunteers that could help nursing and scientific staff with their daily programme either by organising creative and fun activities for the inmates or generally by assisting running the programme. Therefore the assistance that volunteers provide for both staff and inmates, mainly because above all, children really need good humour and positive attitude from people around them.’

1 The italics try to emphasis the points that we wish to correct in the passage above. These are discussed one by one in the next point.

1.2.2 What we have seen of the reality.

The passage contains a lot of false information, and is a perfect example to reflect the ignorance KEPEP seems to have; it functions every day without too much worry about the concerning situation within the institute. The passage is full of contradictions, ignorance for reality and lack of respect towards to the rights of the children.

Each letter below relates to a correction of the information represented in the passage, to tell you some truths of KEPEP:

A. For the oldest person to be 28 years of age they must have been born in 1981. The oldest person on our records was actually born in 1969 which makes him 40 years old. 38 people living in KEPEP are over 28 years of age, and the majority are adults. For most the future looks dim as their life will remain in KEPEP for ever.

B. There is no set rule within the Greek law for the number of nurses there must be to look after the children; ideally many of the staff would like at least one nurse: 4-6 children, from our observations there seems to be about a maximum of 10 staff a day for all 75 children. The job of a nurse at KEPEP is the hardest with such long hours and little staff to share the jobs between the procedures end up being rushed without little respect for the children. A lot of the staff seem unhappy with the working conditions and are physically suffering from such a manual job.

C. The care staff are referred to as nurses but in fact only 7 of the total number are actually qualified trained nurses. For the rest they are officially assistances that have had no experience or training in this field. The nurses are responsible for administering medication, even though most are unaware of the meaning of their patient’s pathologies and needs.

D. At present (November 2009) there is no psychological therapy available and it has been like this since December (2008) .The physiotherapists do not have a specific room within KEPEP, so even though there are 2 hired and paid physiotherapists they do not actively work and provide this service. The therapy sessions are mainly lead by the Occupational therapist but she has to work with little resources and motivation. From what we have seen of the sessions, there is little production and the small tasks that take place are simple for even an unqualified person to administer. There is only one doctor present in KEPEP to diagnoses and administer prescriptions. She is newly qualified and has little experience in such an extreme care centre.

E. When the passage refers to the ‘inmates’ receiving therapy, in actuality only a very small percentage really do. All the inmates have some form of disability and therefore should be eligible for therapy. Only 14 get the opportunity to attend therapy, and unfortunately these are not the children most in need of this service.

Calling the children “Inmates” doesn’t promote an image of free, happy, life full people that a care centre should promote, but instead images of criminals in cages, looked away in prison. Therefore this observation may actually me the only truth in the whole passage, because in fact the children and young people are treated like criminals; being deprived of their luxuries and freedom of choice. In fact there are many cages that these children have to live in day in day out, and in fact the place feels like a prison, with a life sentence for all, but only for the crime that these children where born disabled with unfortunate social situations. We ask the law and state is this fair and justified?

1.3 What the report aims to achieve.

Below we clearly describe the aims of this report. The individual reports that follow express many emotions and takes you through journeys of the reality of KEPEP; however we want to make sure the effect of the report is clear. We do not want you just to feel sad for the moments you are reading. We don’t want the effect of this report just to act as an after-thought at the back of your minds that makes you grateful for your lucky life. Reading this report must follow productivity and action. Therefore the main aims of this report are:

•        To fulfil our ethical responsibility that any human would feel if they where to spend moments in KEPEP. We all feel strongly that it would be tragic to return to our lives without attempting to bring about some basic and essential changes.

•        To raise awareness and transmit the information we know. There seems little awareness even with in the local village of what lies within KEPEP. There seems a wider need to raise awareness of disability in Greece generally and this can be promoted through awareness of KEPEP.

•        Get more money, resources and changes to KEPEP. The limited play resource that the children have to play with is evidence of this need.

•        The core of this report is that through basic and simple interventions the lives of the children and staff of KEPEP can be raised to a good standard of care and a working environment that is full of rewards and successes. By creating this report our desire is to gain support and understanding for the necessary changes in order to make KEPEP the place it has the potential to be.

Share with us our experiences and help us to make this a more positive situation for all.

Name: Jess Rose Simms. Nationality: English. Year of birth: 1987. Period of project: July 26th to December 18th 2009.

My name is Jess and I am an English physiotherapy graduate (Cardiff University UK 2009). In July this year I began working as a volunteer for the KEPEP project. As a newly qualified physiotherapist, I consider myself lucky to have had some experience of working with children with disabilities during university training. Working on a similar voluntary project with a Cardiff charity called BACCUP in an orphanage in Belarus during my summer break in 2007, I experienced first hand, the challenges faced by severely disabled children and their carers in the Belarusian system. This encounter highlighted the existence of under developed care centres, lacking resources, knowledge and education in basic care routines commonly used in the UK. I also came to appreciate how physical and mental problems can progress without effective intervention systems in place. During my time on the KEPEP project in Greece, I have been shocked by the degree of suffering that I believe is preventable in a 21st century European country.

KEPEP has 3 floors dedicated to the children, ground floor for the most mobile and the other 2 floors are designated for either caged or bedbound children.

The daily routine on the ground floor in the morning for the children is an undignified strip in the corridor followed by a brisk shower down (sometimes three times a week only); the rest of the morning is spent in the communal living room. This is a large area, carpeted with bland walls and one television, without any seating, toys or anything offering an enriched and stimulating environment. Each day the changing of the nappies is carried out in the main area without any privacy.

On the other 2 floors is a combination of disabilities ranging from autism to Downs syndrome, brain damage, birth defects and paralysis. The children that are more physically able on these floors are in wooden cages with just a mattress. Some of these children are autistic or have visual difficulties, despite these difficulties some are very aware and alert, when forced into these conditions they often bang there heads against the bars or pull out their hair (a well-documented symptom of severe trauma in children). Often there is radio music that provides some generic stimulus but the rooms are bare and very hot in the summer. Most children stay in their beds 24 hours a day 7 days a week apart from shower time or if they are lucky enough to be selected to play by the volunteers. Some of the children chew on their clothes and hands. This has resulted in them having their limbs tied to the bed to prevent self harming which results in sores on the restrained limbs. As a therapist I find these conditions not only unacceptable but morally reprehensible.

Afternoons at KEPEP are quiet as the children seem to sleep or at least are taken to remain in their rooms. As the evening approaches most children are back to the bleak living room environment until bedtime. Lunch and dinner time are rushed events. The children have a wide range of physical and mental problems of different severities. Yet all 75 children are kept in the same institution under the management of one doctor, two physiotherapists, two occupational and one speech therapist. As a physiotherapist I understand physiotherapy specifically (taken from the Chartered Society of Physiotherapy Curriculum Framework (2002) to be a process that will promote, maintain and restore the physical, psychological and social well-being of humans, taking into account the variations in health status. This is a service from which all 75 children in KEPEP would benefit. A few ‘lucky’ children receive several half an hour therapy sessions a week, but dependant on whether the therapists wish to work with the children that day and only if the volunteers bring them to the therapists. That is the daily basic care routine of the more mobile children. It is unacceptable that just 16 % of the children receive this therapy.

The quality of therapy lacks basic compassion (acknowledgement of the child as a human being), productivity and motivational energy. There appears to be very little activity during the therapy sessions. The few selected children get a half an hour sessions a few times a week. It has been observed, that sometimes the therapists watch television or cook for themselves whilst the children sit alone in their chairs. Sometimes the children are encouraged do a puzzle or drawing but there is a lack of planned, constructive productivity of the therapy. The therapists work environment is a small cluttered room containing a table and adult kitchen resources which are not conducive to a child’s therapy session, Also it has been noted that the sessions are sometimes cancelled for unspecified reasons, resulting in no therapy sessions at all that week.

With such severe disabilities these children require intensive therapy, and yet it is the least disabled children in KEPEP who actually get the therapy. I believe that the solution is increased education of child development and Special needs and improved management structures within KEPEP which will lead to improved motivation and quality of care. The staff are basically good people but the institute has got stuck in with procedures and routines that are not reflective of children’s rights or quality special needs Many of the children’s problems have been allowed to get progressively worse and mental retardation to grow. The institute has remained a place without innovation or creativity with limited resources, where a lot of the children have been severely neglected over long periods of time only adding to and worsening their pre-existing conditions. The staff are afraid of accidents to a point where prevention of them takes priority over the children’s physical and mental health. I know that therapy cannot cure these children but it can provide a better quality of life and even an attempt to control their condition and maintain comfort would be a start.

The job of a nurse at KEPEP is hard with long hours and many routines to complete. There is a low ratio of staff to children, each day maximum there is about 10 staff which is a 1;about 7 ratio. In the UK the basic ratio for children under 8 is 1;13 but this a completely different situation from KEPEP relating to a ratio for the able bodied in a school. The lack of staff means that the job can be extremely difficult to complete. Also the nursing staff, as the therapist ,seem to suffer from low motivation and simply provide the very basic levels of care, cleaning and washing the children without affording them compassion or dignity. Once the basic chores are finished they retire to their staff rooms and watch TV, whilst the children lie in bed looking at the grubby walls of KEPEP. There is no continuous professional development and nothing to motivate or reward staff. KEPEP lacks energy and love in every aspect of humanity including the care of its staff which is then is reflected in the staff care of the children.

One example that saddens many volunteers is of a small child aged 9. She suffers from Osteoporosis, so her bones are very fragile. This has resulted in fractures over time. The staff are so afraid of this happening again that the child is now positioned on her back with her neck flexed and both arms tied up to the sides of her cage. She is not allowed to be removed from the open toped cage by volunteers and never gets to play or leave the building. She is a normal fun loving child suffering from debilitating conditions who laughs and responds when we jump up and down outside her cage, but sadly this the only enjoyment she gets for just a few minutes in any day. A very simple plan for her daily routine to include this small activity would start to improve her life.

Another example is of a young man aged 24 who has downs syndrome and some brain damage. These conditions and lack of therapy mean his ankles have became vey unstable. However with assistance this child is able to walk and the resulting smile is the clearest sign in the world that this child is achieving. The physiotherapists are unsure that they should allow the volunteers to support him to walk due to the instability around his ankles. However a simple procedure written in a simple daily plan to use tape or corrective shoes to stabilize his ankles would result in this child being able to walk safely and maybe eventually unaided. The therapists report this child has been waiting for a hospital appointment for over a year now. There appears to be no urgency to get any tape or shoes either and he does not receive any physiotherapy. Where are resources to provide the basics needed to give this child the enjoyment and right to walk and to reach his potential to do much more?

Many of these ‘children’ are over 20 years old and fully grown and so the potential for improvement decreases significantly as they age.  However there is still potential to improve their quality of life and to ensure that the younger ones do improve and continue to develop. For example, many can use their hands still and with therapy would be able to carry out small skills like self feeding and removing annoying insects from their own faces. Some have movement in their legs that with therapy more contractures could be avoided so they could maintain the movement and avoid further pain and develop basic movement that would improve their quality of life.

For all the children there is little or no stimulation which is unacceptable. What kind of life is a life without play, stimulation, interaction and fulfilment? The rooms are boring and each child is not allowed their own belongings or toys. Time with the volunteers is the only play that is permitted. However even this is limited. As volunteers we have limited resources and space. For the summer there is an outdoor area with swings. For the colder seasons there is a small room that only comfortably fits about 6 children at once. A few pens and paper, a few puzzles with missing pieces, some bricks and random craft pieces that the volunteers have brought with their own money. There are a few random toys but these lack batteries or are broken. A massive problem seems to be the lack of money available to be spent to maintain resources for activities on the children. It would not take much out of the budget to provide basic resources to help stimulate and make children mobile that could be renewed annually.

Another issue is the lack of awareness of KEPEP and the work it is attempting to undertaking this. Local people living just a 5 minute bike ride outside KEPEP know very little about it. Greek people are visibly shocked when they learn of the conditions in the orphanage and I have been told that KEPEP has been negatively featured on the Greek news many times, yet it appears that no Greek authorities have taken any action. These children have no one who cares for them as individuals with rights. This is why it is so important for people to be made aware and get involved to improve the life of these children. I cannot continue with this project knowing that these children are here with nothing whilst there are others in the same neighbourhood with everything who are completely unaware or do nothing about it. I cannot continue my professional career knowing that these children are here with nothing whilst there are others who would be willing to help if only they could be made aware. How can a country in the European Union and allegedly developed allow such conditions and most importantly we ask…. what is going to be done to improve the situation at KEPEP?

These children lack the individual respect due an autonomous being. They lack basic human rights as set out in the UNICEF CONVENTION on the RIGHTS OF THE CHILD. Whether or not they are mentally and physically able, every human deserves the right to some privacy, stimulation and enjoyment of the basic human needs. Primarily these children should receive a basic standard of care encompassing feeding, clothing, drinking, excretion, playing etc; these are not considered let alone revered. Feeding is a rushed event with the food sometimes forced down their throats, the clothes are shared so each child does not have their own, water is only given at set times unless the child is able to communicate their needs. Most are not toilet trained and wear 2 nappies at a time to avoid extra changing, these often swamp the small children. If the children cannot even enjoy the basics of every human right how are they meant to progress as human beings and enjoy a life!

How can it be that in C21st Europe there are children who because they are challenged in their physical and mental development and health, are deprived of basic human rights to a good life? Disabled children are first and foremost human beings who have rights and aspirations of children and should be able to look forward to a brighter future.

Jess Simms.

Name: Mareike Voehl. Nationality: German. Year of birth: 1988. Period in KEPEP: September 20th 2008 to April 10th 2009.

What we feel needs to be changed about KEPEP.

•        All the staff need to stop smoking inside the building! Especially no smoking in the nurse’s or in the therapy rooms! How can they hope to help those children who have breathing problems and are getting oxygen from special bottles when everybody is smoking in the same area?

•        More changing times for the nappies...don't let the kids lie in their own excretion all day!

•        The color of the children’s rooms, more Color is needed!

•        The lack of wheel chairs and the quality of them. New wheelchairs are needed and there is a need to make sure the nurses use them and not the old ones.

•        The nurses should be more sensitive when they are dealing with the children...no shouting, hitting, throwing them in to the beds or the wheelchairs.

•        You don’t need a television screen in the therapists' room. I think that this is a big issue now because I don't think the children can concentrate on the therapy when there's a television on at the same time.

Mareike Voehl.

Name: Cristian Uvani Santiago Hernandez. Nationality: Mexican. Year of birth: 1982. Period of project: March 12th to December 1st 2009.

Myths and Legends about the child care centre’s.

Let’s try to imagine a place where the residents share common dormitories of less than 24 squared meters between 8 or 9 people; where if you are lucky you can have 6 or 7 squared meters for yourself. To live in an area where the private property is a diffuse concept that sometimes takes a walk by the corridors in the hands of a nurse, being there to perhaps make fun of the circumstances. In some of these rooms music can be heard or a television can be seen during the day, but the program that is transmitted is not generally changed.

Three times per day without race, sex, religion or creed distinction all this people receive food. The menu has been decided previously. Besides containing the calories that a person needs to live day by day, in certain cases, a good amount of medicines against chronic diseases and a few sleeping pills are included, to maintain the good social order of the Center.

No, this place is not a jail although it seems it, and No, it’s not a psychiatric hospital even with the quantity of drugs that are given. It is a hospital for disabled children which has been forgotten; very much what the neoliberal policies in these days promote. With a government who for decades have not worried to designate a directive committee with ample experience in the health field and disabled children to take care of the place, but instead it has decided to choose politicians that watch only for their own personal interests and leave

their position when they find better political scenes to be in charge of KEPEP. Offering furthermore a rickety budget and putting too many limitations on how it can be spent. It is a place that hosts therapists that would like to be working in other institutions and with other labor conditions, but since they have not been able to escape, no longer do they work with the motivation as they had when they arrived. With an insufficient group of nurses who sometimes work 36 hours continuous before a replacement arrives cleaning excrements, changing clothes, feeding in record times and blaspheming against God because the boy does not cooperate quickly when being changed. They forget that, perhaps, that boy has paraplegia and that does not have full control over all movements. Especially since the therapy has had little noticeable effects or at the worst this soul never got offered any therapy; it is a lost case from the point of view of the local therapist.

If aside from this obvious lack of interest there seems socially to be a negative mentality towards different people, meaning the atmosphere becomes rough which is what has happened for these unfortunate children. Many have been left by their own parents, not only because they did not have the economic resources to maintain them in their house and/or that furthermore they are trusted that in KEPEP they would receive better attention and specialized treatment; but because perhaps they didn’t want to have a “stupid” in the family. It has been told of some parents who have hidden to the mothers the existence of their children and granted the rights of guardianship to public institutions in frank structural decay, like KEPEP. Generally, there is a negative mentality on the part of those who should offer them a service with quality, especially considering that they are children. Children who need to play, for the simple reason that they are young. There is a mentality that does not allow the bureaucracy to distinguish between the effective administration of the financial resources and the urgent needs of whom the money is designed for. Or perhaps it is that the children do not understand the difficult economic situation that does not allow to contract more staff and that they also must cooperate, like good citizens, allowing to be tied or locked up in cages not to spend the appraised Euros in a bad way in the doubling of staff who at the end of 35 years of their work will retire and will bring about a chaos in the public finances of society.

Better maybe if furthermore the materials do not get renewed or acquired in sufficient amounts needed to take care of the little angels. That represents a good amount of saved money, kept for even worse times, because to renew the cages adapting the bars to avoid that the children don’t damage themselves, is too much. Give them some sleeping pills instead and in conclusion we have a cheaper alternative. Perhaps the authorities want to demonstrate that it is possible to take care of almost 80 people with hardly 4 or 6 nurses in the afternoons. If all the children sleep, there are no accidental deaths and, if there is no bad news, then we have found the perfect way to improve the service for our dear guests. With this system it is possible to take care about a different variety of problems, since the main thing is to maintain them only with life. Further it can be seen that the possibility of developing their abilities could happen if there is time, material and human resources available. It is necessary to take into account that generally the working staffs don’t have the motivation to carry out their fundamental task: to make other human beings a little bit independent from other human beings. This is the case of the therapies, which have practically disappeared and been missed by the children. Someday the physiotherapists will have the materials that they need to do their work, meanwhile they find it necessary just to pass the time, and they do this by watching the television or playing solitaire on the computer, because the idea to go to the dormitories where children can be found 24 hours hoping to be taken care of is not attractive to them.

The bureaucracy wants to convince us that everything we do is going to fail, it knows the better thing to do is to be active; take note from the requests, send copies of it to other departments and then in tradition to make us wait and wait. Sometimes there are some who surrender immediately and say “it is not an essential cost, it is better if we do not try it”. In other cases, it is only necessary to wait years to secure the things that are needed and if a misfortune happens, the nurses will be the ones that will face the judge and the few families who visit their children from time to time.

We would lie if we say that there are no people interested in improving the labor conditions. The dilemma is that if nobody thinks the situation for the workers is unbearable and worth changing, then perhaps for the children whom must spend almost 24 hours in a super reduced building who can also be stressed and frustrated but have no voice, will not even have their situation considered. Unfortunately there are only a few children who can speak in KEPEP (hopefully more would have been able if they had been offered speech therapy, or at least for those that received the therapy for it to have been productive).  We know one child that can talk and always wishes he could be in another place, he is bored, because he has nothing to do during almost all the day. If we ask with our little Greek vocabulary what this boy wants, he would say to go to Athens because that is where his family lives.

Also we would lie even more if we did not accept that there are hearts that try to do something for those who do not have the force to defend for themselves against mistreat and neglect. With the time we have come to realize that there are some who play and joke with the children and some who worry when they are ill. The problem is that these hearts are afraid of something terrible happening to the children and therefore they try to control any indication of an initiative on the part of the children, and they are right to be scared of this. At least 25 people are facing judgments in the court due to the death of two or three infants that happened in unclear circumstances. Therefore they tie, lock up or drug the children to protect themselves of inconvenient consequences in the future and the authorities allow this to happen because they do not want to spend the cents, because in economic terms they prefer to make what they see as presently effective use of the ridiculous amount of resources.

Hopefully us stupid insensible who created these tragedies brought about by human greed, are able to learn from a child that has never received formal education but still has taught me how to obtain the shoes that he likes using just a little of his own intuition. I would like to tell of story of this: It was a day in which we did not even have 20 minutes spare but wanted to go with a group of children into the playground. I hurried the boys to leave immediately, because in my opinion it is an insult to give them such little time, if we know that the next 23 hours and forty minutes of their day will be without much sun and breathe of a different scent from the one of a public hospital. We were already almost outside the building, when the underestimated guy took me by the hand and hopelessly tried to take me to the area that I normally viewed as the dormitories. In the beginning I did not understand nor did I have the time to want to try and understand what he wanted, but thanks to his determination in the end I resigned to following him and was astonished at how he dealt with opening the door of a locked room. Without losing time or hope, he then went to another room, took one of the keys and opened it without any problems against these barriers that separated him from his appraised treasure. He closed the door again, returned the key to its due place without leaving any evidence of his illegal interference and proudly showed me what obviously represents a little common sense one can have in a life of confinement. Each corner, each piece and time of this machinery of segregation, with its speech of the specialized health services, is a puzzle well known by this solitary and obstinate survivor. Hopefully the technocracy will learn of these children, with their honest smiles and huge capacities to surprise us all.

Hopefully there is an exit for those who have possibility of developing their abilities. To change their centre of residence would not be the solution because we know of many other hospitals that are also overpopulated and in these places they cannot take care of more people with so few resources. There are children who have migrated from one hospital to another, hoping to have better care, but with time they have only found more neglect.

Hopefully the indifference will not devour the life of these people and exhaust all their tremendous energies. Hopefully this indifference that hurts so many turns into a desperate shout of tens of voices without a face to their name that hopelessly wait for better times, and wish for care and a sweet kiss good night.

Cristian Uvani Santiago Hernandez.

Name: Marika Fabrello. Nationality: Italy. Year of birth: 1986. Period in KEPEP: February 10th to September 19th 2009.

To work in KEPEP is not a normal situation and definitely is not so easy. I have never experienced anything like KEPEP before, there is little hygiene and the nurses don’t take enough care for the children. In my opinion nobody wants to try and change KEPEP’s situation because the staff are afraid and also maybe because these conditions have become the “normal”.

In this "clinic" all the children are considered to have "severe mental retardation", and for this reason are put inside cages or tied all day to their beds, even if this precaution is not so necessary. The majority of them have scars on their legs and arms from being restricted.

In KEPEP I see and read a lot of incredible things that are hard to accept. I list the following:

•        Every two weeks the nurses cut the nails of the children, but often you can see that the nurses have cut the skin instead causing them to bleed, and the same things happen when they cut the boys beards.

•        A lot of children have real problems to understand what the staff ask of them, for example sometimes the children don’t want to go outside their rooms, and to convince them the staff have to twist their arms.

•        Very few children can speak and those that can always ask for water. The problem is that the nurses don't care about these necessities of life (imagine what it is like for the majority of the children that can't speak). Those that can talk receive almost half a liter 4 times a day, those who cannot talk get only a glass of juice mixed with water.

•        On the first floor almost all the children morning and evening are inside a "fun room", a room where I was told would be "full of materials and tools for free time activities". It should not be called a "playroom" because is without color, no paint on the walls, with only the noise of television as any form of stimulus. The children are watched by the nurses who control them at all time.

•        I can see that the conditions have got worse compared with the first months of my project. The children receive more drugs and sometimes they are not able to recognize the volunteers (they seem like zombies).

Sometimes when we go for a trip to the beach there reactions are so different; they're very happy, they smile a lot and you can think that maybe it's better to take these trips more often instead of all the time more drugs.

Kostas, for example is a guy in KEPEP who has lost his balance (it's very difficult for him to walk, he falls over onto the floor all the time) and this is because of the drugs that he "eats" every day, and unfortunately I have noticed this increases in drugs every month.

•        It seems there's a kind of competition between the nurses during their work because of the speed they work at, they change the children so quickly and the children eat within three minutes without breathing as the food is shoveled down their throats.

•        There're five therapists, but only three of them are working because there are  only three rooms available.

The other two therapists have been in KEPEP from more than one year and from the beginning they have done nothing: they watch television, play with the computer, read or drink all within the one and only useful therapy room, during the sessions with the children. This always happens regardless of how many of the therapists are working.

I think the Therapy Program doesn’t really exist. According to it, almost fourteen children have therapy every week but it’s no true. For example:

          o        The speech therapist works only one hour per day with two children while there are a lot of other guys that need this kind of therapy. Sometimes she doesn't want to do her job and she stays all day inside her room, speaking on the mobile phone or cutting her nails. In my opinion it’s inacceptable.

          o        When we bring the guys to the therapy room, none of therapists seems to be happy to stay with them.

          o        At the moment one of the therapists is not working and has probably not been for more than one year. So all the children that had this therapy now receive none!

          o        During my time in KEPEP I never saw any kind of change and development in the children, there's always the same toys, no new games, no new approaches to the therapy. I don't think that “putting glue on some paper” or just listening to music can be called a ‘therapy’.

•        Almost 1/3rd of the nurses are specialized, the others are local people that work without any training. It's not right that 75 children have only 10 real nurses in order to fulfill their necessities!

•        Most don’t want to take care about the children, they just stay all evening in their rooms, drinking and eating things from KEPEP, speaking between themselves or smoking. Part of our job is to assist the staff, however their job is completely different from ours.

•        One specific child has osteoporosis and she stay all day in a wheel chair. She has a bed for sleeping, but it's very small and she can't stay completely lying down (think about having to sleep in this position forever, it's not so comfortable!)

This project needs more volunteers or some local people that can help the children to leave their beds for only half an hour per day at least. It needs more people that really want to change things, not people that are obliged to work here or that are here only, waiting for their contract to finish so that they can move to a place closer to home. It needs people who really care!

Marika Fabrello.

Name: Marleen Jaroschek and Silja Salmus Nationality: German and Estonian. Year of birth: both 1988. Period in KEPEP: September 26th 2008 to May 6th 2009 and July 5th 2008 to December 27th 2008.

The things that have annoyed us about KEPEP:

• The nurses smoke and eat in front of the children. • The nurses give sweets to only one of their favorite children, but not to everybody. • The children were not allowed to go to the playground (the toys are in there). • Children are touched with gloves that are dirty and sometimes

they are touched with these in the face. • Not giving each child enough time for their everyday activities. • Children don’t have their own things (clothes, toys etc). • Not being able to use cameras for watching the children, but they

are allowed to watch the TV all day. • Throwing the children on to the wheelchairs and the beds, which means putting them to sit uncomfortably.

•        Tying-up Adriana when she is hitting her head hard against the bed.

•        The nurses yell at the children (also the volunteers, who don’t speak any Greek).

•        Not having a playroom with the right standards.

•        The nurses don’t support Jenny (a therapist).

•        When the children on the ground floor eat the nurses pull their head back if they don’t eat fast enough to put the food inside of their mouth quicker.

•        Children are most of the time in their beds, it’s not a life!

•        Ugly clothes and dressing the children sometimes too warm (2

pair of pants or something like that, this is terrible).

•        Not brushing their teeth.

•        Only crushed food for the children, not giving them normal food

and not teaching them to eat probably.

•        Only taking the same kids on the trips.

•        Outside is not a suitable playground for disabled children.

Marleen Jaroschek and Silja Salmus.

Name: Anne Berger. Nationality: German. Year of birth: 1989. Period in KEPEP: July 5th 2007 to March 5th 2008.

I was a volunteer in KEPEP Lechainon from July 2007 to March 2008. I also came back for some weeks in June 2008 and in March 2009. What I have seen I describe, for all the dedication of Greek staff in the centre and foreign volunteers, as a “sacrifice of souls”. And I’m not talking about souls who are meant to be lost. Even if people don’t realise this at the first sight, these human beings who are living in KEPEP, these children and adults, are not lost, there is no reason to give up on them!

Their emotional and cognitive development has not stopped forever, they still can develop and maybe overcome some trauma they have gone through and if we, who are adult, are courageous enough to change the way we are dealing with these humans, we can give them a chance to be happy and find a home in KEPEP, like everybody would wish for, as if they where their own child amongst these souls.

The living conditions like they currently are -and already were for a long time in KEPEP are completely inappropriate and are breaking human rights.

Due to a lack of nurses and specialised staff some children have to stay all day long locked up in wooden cages, or even worse, tied to their beds for almost 24 hours a day, 7 days per week. These are not children who don’t realise their environment. Even the humans who apparently realise everything and who can keep contact with their environment constantly have to stay in beds and only have the chance to leave their rooms for some hours per week with the volunteers or for the rare therapeutic sessions.

I saw that some inhabitants were left alone in a room screaming for hours, even if most of them could be calmed easily by some attention, because there was no staff who had the time to stay by their beds.

Those children, who can walk, stay the whole day in a room sitting on the ground. There are one or two nurses watching over more than twenty children, so there is nobody who can give them some stimulation, except the few hours the volunteers can offer to every child. But stimulation and attention would be very important for these humans. Many of them realise their environment very well and due to the harsh daily life they go through some of them are showing signs of depression.

The fact, that there are not enough nurses for the inhabitants of the centre leads to many situations in the daily life of the children, in which their needs and dignity are ignored. The nurses have to feed the children very quickly and also the showering is always so quick. Activities like eating and taking a shower are very important for the children’s ability to trust and for their own body awareness. These activities should be done with patience. Humans need a state of emotional development, most of the children hosted in KEPEP need patience’s, love and attention in order to learn that the world is a safe place, otherwise they will have to live for many years, if things don’t change, till the end of there life; with a feeling of existing anxiety.

Also the changing of the diapers is not conformable to human dignity. The time I worked in KEPEP there was a diaper changing session only twice or three times a day. That means that the children had to lie in their own excrements for many hours. I remember once when a nurse changed the diapers of a child after the volunteers told them that a child needed to be changed, I saw this child had an infection in their genital area.

It also happened that there was violence against children. Not only the violence of their living conditions that they have to exist in, but also physical violence from the members of staff.

I’m sure that the members of nursing staff give love and compassion to the inhabitants as much as their energy allows, but as I remarked before, there are too little numbers of nurses so they are overstrained very often.

But it’s not only a lack of nurses it’s also a lack of other professional staff. A very severe case that was caused by the lack of professionals is a girl named Danai. Danai broke her leg and after that she didn’t move it for over 6 months, because there was no physiotherapist, who could do this. After such a long time its difficult to build up again the muscles and the septum that firms up the bones of this little girl who used to love so much to stand up in her bed. There is a little number of therapists, psychologists and educationists, who could tell the nurses about the children’s needs, which most of the nursing staff don’t know. There is also a need of medical professionals. As far as I know there is no complete diagnosis given for all the children. Better diagnosis is necessary in order to let nursing staff feel safer in what they are doing. The children spend the whole day with the nursing staff. They are the key for the children’s development and they need to have a firm knowledge about the medical problems but even more of the high potential of development of the inhabitants.

Another problem is the building of the centre. The rooms don’t provide any privacy. There are too many children in one room. There was a time when I had to move a bed to get to the bed of another child. There is also no space for the property of the children, because the inhabitants don’t have any property. Even if they like to have some, they do not have their own clothes or own shoes and very rarely they have personal things. Give the inhabitants something they own, they shouldn’t have to share the room or the attention of the staff, even if they just got their own clothes, this would give them some of their own dignity back because it would show them that they are considered individuals.

The conditions I found in KEPEP are far away from the relatively good conditions in other EU-countries, where there is more professional staff and a better conscience of the fact, every human has the right of dignity, respect, privacy and a home where he or she can feel safe.

The European volunteers try to improve the life of the humans that live in KEPEP. And they already are successful in some cases. But the volunteers can’t make KEPEP all by themselves to a place where it’s certain that human rights are respected and the presence of the inhabitants is appreciated. There is needed more nurses and other professional staff. And there needs to be some advanced training about the high potential of many of the children.

There is still a big chance for the inhabitants to develop and to get better! We have to remind ourselves that these children are not an undefined group of humans who have a disability. Every single inhabitant of the centre is a person with its own story, fears, preferences, family, dignity and future!

Most of the inhabitants of KEPEP are already abandoned by their parents; they shouldn’t be abandoned by state care!

Anne Berger.

Name: Giulia Frattini. Nationality: Italian. Year of Birth: 1983. Period in KEPEP: July 6th to February 6th 2009.

My name is Giulia Frattini and I am from Italy, I am 26 years old and graduated in political philosophy from the University of Urbino in July 2009. My course comprised of the study of pedagogical examinations and dynamic psychology. I have taken part in cultural exchanges and delivered workshops for the European Union as a trainer. I began work as a volunteer in KEPEP in July 2009.

My report will start with Elli, one of the children who lives in KEPEP, as I believe I order to describe what is happening in KEPEP one needs to speak about the story of the children who live there.

ELLI

Atmosphere and short history.

Elli is six years old and from September 2006 she has lived in KEPEP. A generic doctor has diagnosed the following disorders: Strabismus, Hypertension, Psychokinetic Delay and Autism. The diagnosis was made before my arrival.

Elli is legally under the responsibility of the centre as her mother has disappeared.

From the age of 3 Elli has lived inside a wooden caged-bed two meters in every direction. In the front of the cage is a door that is always kept locked. The child is feed by the staff through the bars of the cage. From the beginning of September, Elli participated in an “occupational therapy” program that had been followed for approximately a year, three hours every week.

Elli’s daily routine at KEPEP (presumably from three years ago).

•        At 8.00 am, the staff wash and prepare her for approximately 15 minutes (she has two nappies visibly too large for her structure and age, and an all in-one denim suit); the wash happens every two to three days.

•        During the morning (five days per week), for a minimum of twenty minutes to a maximum of two hours, the volunteers assist in the centre and interact with Elli (these volunteers, who have an average age of 23, work in KEPEP for between five to nine months, many do not speak Greek and they are unqualified in rehabilitation or educational fields, with the exception of Jessica R Simms, a physiotherapist of 22 years old).

•        Elli used to have her “therapy” (simple logic games and puzzles) with Maria, the other autistic child (who is six years old), and Vivi, who is a similar age, has Downs Syndrome and is in a wheelchair. In my experience the children each need their own individual interventions in order to present a successful and productive therapy session and which could be managed in a group session but only with skillful and knowledgeable practitioners. Elli now has her sessions alone. All the therapists work inside the same confined space, with the television and computer on at all times.

Elli’s everyday environment.

•        Elli’s cage is in a room with which she shares with other three children (who are also in cages).

•        In the garden, enclosed by net fencing , there is a slide, a see¬saw, a gazebo of wood, a little plastic swimming pool (but the children are only taken outside during the spring and summer months) for the children during the mornings.

•        The play room, which she shares with the volunteers and other children.

Elli daily diet.

Rice, chicken, cod, vegetables, yogurt, fruits and cheese, all blended together. The child is not in the position to learn to use cutlery, in fact she is always fed through the bars of the cage, with the food shoved (often roughly) into her mouth; this happens every breakfast, lunch and dinner time. Elli gets no control over her food.

The children’s behavior; for example when they are upset.

It seems to be controlled by some kind of liquid medication administered by the nurses. This seems most apparent with one of the children called Maria. I am not sure exactly what they are given but I get the impression it maybe some kind of tranquilizer as she becomes quite very quickly.

Observed Behavior and general Impressions of Elli.

Elli does not speak and she appears very quiet and calm

In the cage.

If she isn’t attended to by an adult, Elli seems lost in her own world. From the beginning of August 2009 she started to pull out her own hair (known as tricotillomania) and she is bald in places on her scalp as a result of this. She often licks these pieces of hair and then carefully ‘attaches’ them between the cages bars. Elli continually carries out this activity with any long objects she can get her hands on, using for example the threads from her suit or  mattress.

When I arrive in the room, she always recognizes me and often begins to jump and smile and emit little joyful shrieks.

The child is not able to put the shoes on by herself, but will attempt to help with the process if she is encouraged by me or another volunteers. This suggests that Elli could learn to perform simple daily self care functions for her, with support.

In to the garden.

Every time Elli enters in to the garden she increases the length of her steps and moves her hands quickly and smiles. If I don’t pull her away she immediately starts to pick up the leaves and little twigs that she finds, licks and attaches onto the wheelchair, slide, benches, or onto her own body. When the volunteers say to her to stop, in Greek, she responds immediately.

If she’s invited to, she is always happy to go on the swings, which is evident in the way she responds to the invitation with a smile, she reacts positively as she is pushed on these. She uses the slide by herself; being able to go up and down.

Since July, Elli has created a small personal “natural installation” on the side of a tree: some mornings she pass the time by putting little twigs into the holes of a trees, often choosing to return to her art work on different days.

In the playroom with the volunteers.

When she’s invited to sit and paint with the colors, she will use them immediately, as if she was “answering to an order”. Sometimes, when the play room is peaceful, she will paint alone for periods of time.

Sometimes she makes noises to express her disappointment (for example when I stopped her because she painted on her own hands) and Elli always communicates with noises in order to express approval or joy (for example when finishing the coloring of geometric squares and triangles; Elli emits a kind of “colò-colò” noise).

The child is able to maintain concentration for a maximum time of 15 minutes, without getting distracted.

She likes to use felt tips in a hammer motion; but if she’s accompanied, she will repeat the lines I have drawn but she will be more interested to draw outside the paper and be experimental with the materials. She is very creative and curious and wants to touch and smell everything she is given (for example she draws on her hand and then smells the “colors”). If she’s urged to focus the coloring action in the paper, she does it immediately.

Elli is not able to wash her hands, but she has come to understand that “she must”. Therefore before returning to her cage she always goes towards the sink and puts her hands under the tap.

Present levels.

Elli only has the chance to learn in the environment of KEPEP, where she receives no individual attention apart from the intermittent attention of the volunteers. There is no individual plan produced to support her developmental needs and interests. Elli is always surrounded by other children or adults; she gets no time dedicated specifically to her, in order to support her to learn the minimum basic human functions like feeding, excretion and dressing herself. Her everyday objects are communal, with the exception of her shoes that she sees as just a sign that she will get to go outside.

Some of the children seem to express their anger and frustration by banging their heads on the bars of the cage or crying and screaming. Elli rarely cries and if she does it happens without an apparent reason to do so. She is very passive in nature and acts like a servant to the routine of KEPEP without any apparent complaints.

Ellis visual perception.

Elli’s eyes cross, and her vision must be impaired or confused. There have been no interventions to investigate this eye problem or to provide her with visual aids such as glasses to improve her vision.

Together, Elli and I do puzzle’s; putting basic shapes into the correct hole. Elli seems to recognize the space within the geometric shapes that I draw (for example she loves to fill up the drawings of a triangle with plastercine).

Some times she will choose and change the colors she wants.

Ellis linguistic ability.

Elli has never had an opportunity, or the support or education to learn to speak as the volunteers “do not speak” her language and the staff only speak to her when giving her orders such as ‘NO’. She responds to the English language, through noises, maybe because she recognizes the friendly “tone”.

Elli Ability to imitate others with her motor skills.

This is very limited. Elli is able to jump, dance with music and clap her hands when someone else does it and she is motivated.

Elli Ability to repeat words and noises.

This isn’t present.

Personal considerations.

Considering the following conditions that Elli has to live in I ask is it possible to help Elli progress?

• Considering the lack of material equipment available to carry out my activities as a volunteer, conditions that are far

from the MOST basic of human rights: the cages first of all are inhuman, the environment is generally unhygienic with a crumbling structure. There is a lot of non specialist staff, who have a lack of care when they interact with the children, a team of therapists without the materials and sensitivity to work with these children in need;

•        Considering these conditions have been made public, through articles, national news papers and live news already and still nothing has dramatically changed;

•        Considering the little time the volunteers have to work in an institute like KEPEP = four hours in the morning and one hour in the evening;

•        Considering that despite my best efforts there is little or no records kept for children like Elli, for which there is no excuse. I believe this is the result of poor management leading to inadequate team work and low moral amongst the established staff. The volunteers are sometimes made to feel like they are a threat or a burden to the staff in KEPEP which is hard as this is the last thing we want;

•        Considering that I’m not a therapist I can’t be in the position to apply effective clinical interventions;

•        Considering the claim made by the staff that there needs to be cages, in order to control and maintain the situation for the children’s own good! ;

•        Considering the lack of basic resources and the lack of motivation at KEPEP to make changes (for example as from now KEPEP has only one doctor for 75 children);

•        Considering the lack of proper record keeping and formal observations of the children and their development;

•        Considering the poor working conditions and moral of staff in KEPEP, exacerbated by low wages and ineffective management.

This situation is the same for Maria (the other autistic child six years old who has lived in KEPEP for three years).

At the moment Elli and Maria have the potential “to save themselves from KEPEP” through a school education (according to the social worker) or a more progressive institute (in my opinion). The children are six years old at the moment, how can they learn to stay seated if nobody teaches this to them, if they are fed by others and aren’t able to go to the toilet alone?

Not only the present situation is absurd and inhumane, but also, in my opinion, the strategic plans and intentions at KEPEP to help the children are completely crazy and have no logic. They’re impossible and they will take place only thanks to a miracle. This is not an ethical way to work in the field of disabled people and to even work with people in general. KEPEP Children’s centre is not making acceptable provision for Greek disabled children in this developed country.

It’s unacceptable that to play, to walk and simply live outside a cage depends on a European Project carried out by relatively inexperienced volunteers whom struggle to cope in front of the absurdity of the situation.

But it’s happens. And it’s has to stop!

In KEPEP there is much rhetoric about the ‘love’ for these children and this is expressed sometimes through waving to or stroking of the children. It is probably true to say that all the staff of the center love the children. It is not enough to just love children, as fellow human beings we must be proactive in fighting for the human rights of these children who cannot speak for themselves. To me, this represents KEPEP’s shame, more than the shortage of money for appropriate medical and educational interventions: it is “pity for pity’s sake”. Let’s act now to make simple changes that recognize the human rights of disabled Greek Children in KEPEP.

Giulia Frattini.

Name: Estelle Andrez. Nationality: French. Year of birth: 1988 Period in KEPEP: February to September 2008.

When I arrived at the center, I was extremely shocked at what I saw and I thought that I would be unable to stay for my voluntary project...but I did, I did it for the kids.

I couldn't imagine that it was possible to tie kids to their beds or to put them in a caged-bed or to take all the kids in the same time, one behind the other, for a shower just like that. I could not imagine that you could have kids all the day in the same room without a toy, or to be given their food so fast that they did not even have enough time to swallow.

Thanks to the previous psychologists the situation has become a bit better because he was able to speak to the staff about the situations, but for us as foreign volunteers it was hard because we didn't have the language. We tried to change things in this center and I'm very happy that other volunteers continue, but we need more change!

Thank you to the kids!

Estelle Andrez.

Name: Catarina Nogueira Neves. Nationality: Portuguese. Year of Birth: 1987. Period in KEPEP: February 10th to September 10th 2009.

As far as I am concerned KEPEP disrespects many human rights of the children. There has to be a major change in this centre. Time passes and these children are loosing their opportunities to develop in any way.

Before I did this project I had some contact with disabled people. I was completely shocked with what I saw in KEPEP. I could not believe it, these children were tied and in cages all day, with no toys, no attention, No Love.

These children have the right to have conditions and opportunities to develop in their daily lives. They should be treated as all human beings, with respect and dignity.

Below I listed some of the facts I considered most important to be considered:

Education / Therapy:

•        A few of the children attend Therapy and for only a small number of sessions a week.

•        No children from KEPEP attend school or any kind of formal education (apart from the therapy). Most never learn how to speak/read etc.

•        A 6 year old girl with Down syndrome was not taught how to walk or talk. She is all day in her cage alone and abandoned.

•        Every time I transport children to therapy I always have the feeling that nothing productive is being done. Most of the time the therapists are watching television and the children just sit on the chair next to them. I believe very little attention is paid towards them.

•        At this moment there are 5 paid therapists and only 3 little unorganized rooms for them to work.

•        The children are diagnosed by a general doctor who visits KEPEP just to diagnose them. He does not know the children. In particular all children are diagnosed with “Severe Mental Retardation”. After 7 months working with them, I do not believe that all the children have this diagnosis. Many children showed positive responses to activities and situations.

•        No Physiotherapy room or materials, so no physiotherapy.

•        No psychological therapy. Many children seem to need psychological therapy. There is a boy in KEPEP, he is one of 3 you can actually “talk” with, he is right hemiplegic. In his head he believes he has no problems because his disabilities came after an accident. He understands the things that are going on, he does not like being there and he does not like his life there. There are many days when he is depressed, he does not want to do anything (have bath, go to the wheelchair, change etc.) and he does not what to talk with anybody etc. Before he had

psychological therapy but it stopped at the beginning of this year.

Food / Hygiene:

•        Some children from the ground floor know how to eat alone. The others are fed very quickly, with very little attention.

•        The children never receive water. They just receive juice 4 times a day. All the children that can say some words are constantly asking us for water. We try to give them water but it’s generally difficult to find a clean bottle and sometimes even difficult to find a bottle of water on the whole floor.

•        The children never have their teeth cleaned, unless the volunteers do it. They don’t speak so they cannot complain if their teeth hurt or not. Besides, the medication also destroys the teeth.

•        One of the little girls in the cages is able to eat alone but still she is fed everyday. It is quicker and more comfortable this way for the nurses. The children don’t even leave the cage to eat; they don’t even have the door open for them. They get feed between the bars; the food gets inside the cage and between the bars.

•        There is bad hygiene in the building in general since there is a lack of cleaning staff.

Nursing Staff:

There is a lack of nursing staff and consequently:

•        Many times we are unable to take children to therapy, since we need help from the nursing staff to transfer them to the chairs and many times there is no staff to help us. When there is male staff we always get help, but if there is only female staff we can’t get help, and since we are not allowed to transfer the children alone, these will not attend therapy. This situation is very common.

•        The nursing staff are tired and very stressed, stress that children feel and sometimes leads to them developing a state of depression. The nursing staff are exhausted, there are very few for all the children. They lose their temper and end up not treating the children in the best way.

•        The staff have no information/preparation on how to deal with these children and many times do not help towards the well¬being of the children. A simple preparation on how to talk, move, behave with the different cases, I guess it would make a huge difference on the well-being of these children in KEPEP.

General Information

•        Two 6 year old girls, who can walk and participate in simple activities, are living in cages, 24 hours a day, 7 days a week. They have very little therapy. One, at the moment, does not have therapy at all; the other has therapy in general twice a week for sessions of 40 minutes long.

•        The children are tied up by their arms and legs all day; sometimes they have flies on their face and they cannot send them away. We try to massage some, because their skin hurts from the rubbings.

•        With these conditions, there is no possibility of these children to develop, to lead a full and decent life, to enjoy their childhood, to enjoy their own life.

KEPEP is at this moment a centre where a group of people together allow these children to survive rather than live.

There is not enough staff, space, material or resources to give these children the life they deserve.

A little story I would like to share with you;

One day I went to put a girl back in the cage, a 6 years old girl that suffers from downs syndrome. When putting her back she starts to cry. They don’t cry in general. I never heard a cry like that in my life. Still today I can hear it. It was a cry for help, a cry from someone that does not have a mother and a father, someone that does not receive love and so desperately needs it. A cry from a child that wants a chance to change. A cry for help.

This is the cry for help I want you to here from me.

From all my heart, I please ask you to reflect about this situation and try to find the means to make a change in the life of these children we love so much and desperately need some love and respect.

Catarina Neves.

KEPEP has so much potential to give, the children are evidence of this, but for this to happen concrete interventions and changes are needed.

Give these loving children the respect, human rights and mainly the love that they so rightly deserve.

To show your support and to contact us on how you can help please use the following email addresses:

Catarina  Nogueira Neves

(catarinanogneves@gmail.com)

Giulia Frattini

(moltogiu@libero.it)

Jessica Rose Simms

(jess_simms@hotmail.co.uk)

Cristian Uvani Santiago Hernandez

(cristian_santiagoh@hotmail.com)

Marika Fabrello

(marilla87@libero.it)