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
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 “colς-colς” 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!
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
Marika Fabrello
(marilla87@libero.it)
Category: Χωρίς κατηγορία
