Η ΕΚΘΕΣΗ «ΦΩΤΙΑ» ΤΩΝ ΕΥΡΩΠΑΙΩΝ ΕΘΕΛΟΝΤΩΝ ΓΙΑ ΤΟ ΚΟΛΑΣΤΗΡΙΟ ΤΟΥ ΚΕΠΕΠ ΛΕΧΑΙΝΩΝ ΗΛΕΙΑΣ

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

Ιs 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 26^th to December 18^th 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 21^st 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 20^th 2008 to April 10^th 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 12^th to December 1^st 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 10^th to September 19^th 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 1/3^rd  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 5^th

2008 to December 27^th 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 5^th 2007 to March 5^th 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 6^th to February 6^th 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!

Estelle Andrez.

Name: Catarina Nogueira Neves.

Nationality: Portuguese.

Year of Birth: 1987.

Period in KEPEP: February 10^th to September 10^th 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.