2779-Hear_my_voice_life_EN_FINAL

REPORT OF A PROJECT LED BY INCLUSION EUROPE
Respect, solidarity and inclusion of persons with intellectual disabilities
©Photo:CedarFoundation
Participating in my life:
Hear my Voice!
Inclusion Europe

Inclusion Europe: www.inclusion-europe.org
Eurochild: www.eurochild.be
The Cedar Foundation, Bulgaria: http://www.cedarfoundation.org/en/
QUIP, Czech Republic: www.kvalitavpraxi.cz
Down Madrid: http://www.downmadrid.org/
And in collaboration with Lumos Foundation: www.wearelumos.org
This publication has been mainly written by staff from The Cedar Foundation (Bilyana
Stanoeva, Alexandrina Dimitrova, Margarita Parmakova and Lindsay Saltsgiver) and
QUIP (Milena Johnová and Radka Čebišová), in the framework of the European project,
“Hear Our Voices: Promoting and encouraging the participation of children with
intellectual disabilities”. “Hear Our Voices!” aims to explore, pilot and share methods
which empower and promote participation of children with intellectual disabilities.
For more information: www.childrights4all.eu.
This publication has been produced with the financial support of the Fundamental Rights
and Citizenship programme of the European Commission. The contents of this publication
are the sole responsibility of the “Hear Our Voices!” project partners and can in no way
be taken to reflect the views of the European Commission.
©Inclusion Europe, Brussels, 2014
Photo on the cover: © Cedar Foundation
Layout by Orangemetalic.be
ISBN: 2-87460-140-3
THE “HEAR
OUR VOICES!”
PROJECT
PARTNERS:

INTRODUCTION 4
CHAPTER 1:
DEVELOPING DECISION-MAKING AND
PARTICIPATORY SKILLS IN MY LIVING
ENVIRONMENT 5
I. “She started feeling she was important and part of something” - Milena 5
II. “I choose what I want to eat!” 8
III. “We decide!” or How to build a Client Council? 11
IV. Instruments used 14
1. “I change my environment!” 14
2. “We decide!” 16
CONCLUSIONS 17
CHAPTER 2:
PERSON-CENTRED PLANNING
AS A TOOL FOR PARTICIPATION
IN DECISION-MAKING 19
I. Mathias' story 19
II. Mark's story 24
III. Group story 27
IV. Resources 29
One page profile 29
Gifts and Strengths 30
Relationships map/circle 30
4+1 questions 31
Sorting Important to and for 31
PATH 32
Decision making agreement 33
Communication charts 33
Objects communication 34
CONCLUSIONS 35
3
“
”
Diana knows
quite well what she wants,
and when she really wants
something she will say the
respective word too.
- Milena

Introduction
At schools, in child-care settings, and at
home, we – families and professionals – tend
to decide what is best for “our” children; this
is even truer when the child has an
intellectual disability. We are the ones who
“know”, the ones who decide and set the
frameworks and the objectives. Traditionally,
throughout this process, children often have
no voice. The UN Conventions on the Rights
of the Child and on the Rights of persons
with disabilities have been carefully analysed
by professionals, teachers, families and
people dealing with children and young
persons with disabilities. However, in the
end, little attention has actually been paid to
the right of children to participate.
Research conducted by Inclusion Europe,
together with Eurochild and the Charles
University, has shown that children with
intellectual disabilities are even less likely to be
involved than their non-disabled peers, in that
they participate less frequently in many kinds
of activities in general. Having friends,
participating in social, cultural or sports
activities, and participating in decisions which
affect their lives are all healthy ways for
children to become engaged in society,
reflecting essential aspects of their social and
personal development. However, participation
in these activities – or uncovering
opportunities to participate in these activities
– does not always come easy for some
children, especially when they have a disability.
Children can play a significant role as social
change agents. Building children’s ability to
participate, taking into account their age,
maturity and context, giving them the
opportunity to be listened to, and to express
their opinions on matters that affect them,
all help them to mature, to gain self-
confidence, and to experience essential
feelings of self-determination as they
undertake roles and responsibilities while
continuing to respect adults. When children
learn to communicate opinions, take
responsibility and make decisions, they
improve their skills and prepare for their adult
life as equal and competent citizens. Again,
these crucial benefits rarely reach children with
intellectual disabilities.
Through the project “Hear Our Voices!”, we
intended to start bridging the gap between
children with and without disabilities, by
training and teaching children with
intellectual disabilities to participate in
various matters which affect them directly, so
that they can begin to be masters of their
own lives. We are guided by this principle
that it is essential to empower them and
provide them with the necessary support,
skills and knowledge to participate in all
areas of their life. They need to know how to
enjoy the same rights as others, and they
need to feel that their voices count.
This publication describes the work done in
Bulgaria and in the Czech Republic with
children living in small group home settings,
and in large institutional settings. In it we
aim to share promising practices from other
countries, with parents and professionals
who really want to make the right to
participate a reality in their daily work. The
publication looks at both individual and
collective participation.
Because child participation is never a
straightforward process, we have included our
hesitations, lessons learned and challenges as
well as successes and useful tools and
methods we have used over the past year and
a half of implementation.
We hope that the readers will find in this
book both inspiration for change and
concrete ideas, so that they may take
concrete steps to ensure that all children with
intellectual disabilities can participate more
actively in their own lives.
4 PARTICIPATING IN MY LIFE: HEAR MY VOICE!

The Cedar Foundation, a Bulgarian child rights
organization working to eradicate the
outdated institutional system of care, manages
four small group homes (SGH) for children and
youths with intellectual disabilities – two
houses and two apartments – in Bulgaria. The
houses are located in a residential area and are
surrounded by a big yard, each hosting eight
children. The apartments are located in
different parts of the town. Four young ladies
reside in one of the apartments, and in the
other – two young men and two young
women. A team of social therapists works in
each SGH, providing 24-hour support to the
children and youths in their day-to-day
activities. Each team has a leader who is
responsible for the daily operations of the
home and who ensures that the highest
standards of care and support to clients are
maintained. Additionally, two social workers
are actively involved in supporting the clients
from all SGHs. They facilitate the services on a
daily basis, keep the records, and liaise with all
external specialists who assist the SGH clients.
They also provide assistance to the teams
whenever new work practices are introduced.
The overarching goal of the SGH is to provide
an environment which is as close to the family
setting as possible, giving children and youth the
support they need to acquire the skills necessary
to live a full and independent life. An integral
part of this support includes nurturing their
capacity to make decisions, and promoting
their proactive involvement in the process of
planning their own lives. These processes require
significant time and persistence, in view of the
fact that all of the SGH clients come from large
institutional environments, in which they were
deprived of the chance to develop decision-
making and participatory skills.
I. “She started feeling she
was important and part of
something”- Milena
Diana is seventeen and has been living in the
small group home setting for four years,
together with another seven girls and boys.
Since moving from the institution, she has
been learning to pronounce some words, and
is already able to ask for something to eat and
to look for the persons who are closest to her.
She loves to give a helping hand in the
household, arranging the food supplies
for the day, cleaning the table, and helping
with the cooking. Diana has developed good
personal and general hygiene habits and
demonstrates substantial progress in her
emotional development: she manages her
own emotions, makes choices, and is
responsible for her personal belongings.
The work with Diana under the “Hear Our
Voices!” project was aimed specifically at laying
the foundations of awareness and a sense of
‘ownership’ regarding her own life: That is,
knowing that she is entitled to take part in
decision making which directly affects her. We,
as adults, are tasked with guiding her in this
process, to provide to her the information
needed, in an accessible form, and to encourage
Chapter
1
5
DEVELOPING DECISION-MAKING AND
PARTICIPATORY SKILLS IN MY LIVING
ENVIRONMENT
Today Diana is a much
more self-confident young
lady who is able to say or
show what she wants. She
stands by her desires, yet
handles the limitations set
by the persons supporting
her. She enjoys a new pink
room, painted and
decorated to her own
taste.
In the beginning Diana did
not participate, got easily
distracted, and failed to
show interest in individual
work. Observations
indicate that as results
started to become visible –
after having chosen
herself the colour for the
walls of her room and
having seen this happen –
she became more
proactive in choosing
subsequent changes for
the room.
Diana is seventeen
and has been living in the
small group home
setting for four years,
together with another
seven girls and boys.
“
”

her to make decisions which protect her safety
and are in her best interests. An especially
important aspect is to encourage her in the
efforts she makes, regardless of their outcome.
One of the major objectives of our work was
to show the SGH clients that they have the
capacity to change their literal and immediate
surroundings – they are able to decide if they
want to redecorate their rooms, and how to
change them. With Diana, we began by
providing her with different pictures of rooms.
We thought that upon seeing finished rooms,
she might like one and tell us. We got twelve
different examples of rooms for children and
young people and uploaded them on the
computer Diana and Milena1 used to work on
together. Milena had some prior talks with
Diana in her room, explaining to her what was
about to take place and prepping her for
making the choice. Diana rejoiced, her face
beaming, and clapped her hands.
The next step was to run the pictures on a
slideshow for Diana to see. After her first
attempts, Milena suggested that we changed
the way we showed the rooms. In her words,
Diana initially came to like some of them, but
at every restart of the slideshow she would
express different opinions. Milena thought
that the reason lied in that she could not have
a look at all options at the same time and
found it difficult to remember the previous
picture and then to compare it with the one
that followed to eventually make her choice.
We decided to have one file displaying all of
the rooms at once. Here again we failed to
properly get Diana’s attention. We concluded
that the pictures of fully furnished and
decorated rooms contained too much
information and detail for Diana to fully grasp.
The work with Diana continued over a period
of over three weeks. During this time, Milena
and the social worker discussed the upcoming
changes with Diana on a daily basis. Due to
difficulties in Diana’s concentration, such
sessions rarely lasted longer than several
minutes, but the staff took care to utilize every
appropriate occasion to bring up the
conversation. For example, whenever Diana
entered the social worker’s office, she would
be prompted: ‘So, you are here because you
want to draw? Look, here we have the
different colours of pencils. They are different
as are the colours of the walls of your room.’
Then Diana would be taken on a tour to see
several different rooms, talking about their
colours. When we utilized this method based
on association with everyday life, we
discovered that when we discussed
something, Diana’s attention was more
focused and her interest would linger. This
prompted us to undertake the process more
slowly, addressing one change at a time,
beginning with only the colour of the walls.
After the walls were painted, we would move
on to do some curtain shopping and then
choose a bedcover.
We got samples of paints from the store and
brought them to Diana. We wanted to have
the samples next to the walls of her room, so
that she would know that she was to choose
the colour for them. We took Diana to her
room, and Milena verbally reminded her of
what had taken place over the previous few
weeks. When Diana feels confident and
relaxed, she easily smiles and readily shows
others what she likes, taking the hand of the
person next to her and pointing it to the
desired object. This time she smiled, and
whenever she heard the word ‘wall,’ she
would touch the wall next to her bed. We
produced the samples. She got filled with joy,
started clapping her hands and laughing. Her
behaviour indicated that she already knew
what we wanted from her and she felt
confident.
Diana loves pink. She would often choose
her clothes in many different shades of pink.
Therefore, it came as no surprise that she
1 Milena is one of the staff
people who work on a
focused and personalised
basis with Diana.
“ ”
We decided to have
one file displaying all of the
rooms at once.

7
picked two shades of pink for the walls of
her room.
When the time came to have the walls of the
room painted, we proposed to Diana to take
part. She would not go anywhere near her
room. We made several attempts to talk her
into helping, but eventually decided that we
had to respect her wish. When her room was
ready, Diana could not wait to go in and
immediately demonstrated how pleased she
was. She rejoiced, clapped her hands, sat on
the bed and started jumping.
The next step of our work related to the make-
over of the room was to take Diana shopping
for some curtains. In order to prepare her, we
took her to the window to show her that the
old curtains had holes and faded colours.
Upon asking whether she felt like doing some
shopping, Diana got excited, but when we
passed by the big grocery where we would
usually buy food, she was surprised. We
explained to her once again that we were not
going to shop for food, but for curtains
instead. Upon going into the shop, it was
necessary to have Diana spend some time
there; we had to explain to her what the
different rolls of fabrics piled there were for
until she finally relaxed. She started pulling at
pink fabrics only. The shop assistant took out
all the fabrics she wanted to see. We chose
some appropriate fabrics with the right
thickness and set them aside. Diana stood and
watched with great interest. We unfolded the
fabrics and invited her to step forward and
Diana loves pink.
She would often choose her
clothes in many different
shades of pink. Therefore,
it came as no surprise that
she picked two shades of
pink for the walls of her
room.
“
”
DIANA:
Step 1: Choosing what her
whole room would look like,
using set of finished rooms.
Confusion, lack of interest,
inability to manage large
amounts of information.
Step 2: Breakdown of the
process: Changing individual
items in her room.
1. Paint Samples
2. Curtain samples
3. Bedcover samples
Starting feeling confident
and happy with the decisions
taken.
”
Diana knows
quite well what she
wants, and when she
really wants something
she will say the
respective word too.
- Milena
“

choose. After a slight hesitation, she took hold
of one and turned to leave the shop with it. It
was crystal clear that she wanted to take home
this fabric.
The choice of bedcover and sheets was made
much faster. We believe that this was because
Diana comes into direct contact with
bedcovering on a daily basis, and she was
much more familiar with them compared to
curtains. Upon entering the store, she liked the
pink set the most.
What Diana thought us was that whatever
work plans we might devise, she had her own
pace, took her own time, and when we really
began to observe her reactions, there was
much she could show us. She is able to
understand just as anyone else; we just
needed to find the way to demonstrate to her
the things we talk about. We realised that
when the picture is free from excess details,
when the process was simplified and when the
guidelines were clear, then Diana managed the
task perfectly. We also realised that relaxed
surroundings made Diana feel confident;
when the tasks we gave her were not too
complicated she would make efforts to crack
them, she was happy and confident in her
actions. And the positive evaluation and the
clearly demonstrated joy on our part were the
stepping stones we used in every further stage
of our work with her.
Diana promises:
- To continue working with us.
- To take part in the activities we offer her.
- To keep showing us what the best
approach to her is.
We promise:
- To provide Diana with secure and calm
surroundings in which she is not
pressed for time, there are not too many
people around, and we are not driven for
quick results.
- To simplify the tasks given her as
much as possible, so that she is able to
grasp everything and feel confident in
her participation.
- To provide information in small steps,
with no excess details.
8
If we serve
something he wanted for
dinner, he is so happy,
clapping his hands and
expressing his joy. If the
food was not something
he wanted, he again would
make it clear that he has
noticed this.
- Dessislava 2
“
”
II. “I choose what I want to eat!”
2 Dessislava is one of the staff people who work on a focused and personalised basis with Ivan.

Ivan is a fourteen-year-old boy, smiling,
mischievous, and full of energy. He loves to
play with his best friend in his house, to listen
to music and to sing. He has a difficult time
sitting still for very long. He loves children’s
songs, and usually when he speaks, his words
run as a melody. He is very good at expressing
what he wants and where he wants to go
through signs and vocalisation. He knows the
names of the children and the staff at his
home. He is able to help with the housework
– to make pizza dough, to put the dishes in
their places, to set and clean the table. He
enjoys being active and a part of everything
that happens around him.
The aim of the second stage of our pilot project
was to implement a comprehensive system
wherein clients may help choose the meal
options in the service. Typically, the menu is
prepared one week ahead, supplies are bought,
and food is cooked on-site. All of this happens
with the participation of our clients, according
to their ability and willingness. In view of the
specific organisational arrangements, we
wanted to have a system which would promote
maximum involvement on the part of children
in decision-making and be as close as possible
to the family environment. Therefore we
designed menus containing all the dishes that
our clients ate and cooked. We took pictures of
each dish ready in the pot, or in the serving
plate, and put together folders.
Initially the intention was to have all the
children, Ivan included, sit and participate in
the designing of the menu for the upcoming
week and have them decide what they
wanted to eat. As with the work with Diana,
we here too had a strict plan in the beginning:
a few days of preparation with pictures,
followed by attempts to involve Ivan and the
other clients actively in the designing of the
menu. At every meal we had the team
member on duty sit by Ivan’s side, open the
menu and show the picture of the served dish.
They were to demonstrate to him that the dish
in the plate was the same as the dish in the
picture. Ivan would not always respond with
interest; rather, he acted annoyed that we
would not let him eat his meal in peace.
The next stage, according to the plan –
participation in the designing of the menu for
the following week – was to have the member
of staff on duty sit with all of the children and
use the photos of dishes from the folder to
give them the opportunity to choose what
they would like to have the following week.
Of course, there were different opinions, but
we felt that one week was enough to have the
wish of each child satisfied. After beginning
the process, however, we saw that if we
placed five pictures before Ivan, he would fail
to select any, but if we placed only one picture
and asked him whether he would like to have
the dish, he would readily agree and be happy.
We assumed that one possible reason was
because there was no good connection in
place between the choosing of the picture and
the receiving of the real dish, and that there
was no way to establish such a connection if
Ivan opted for his favourite soup on Monday
morning and got it for dinner Friday night. In
other words, the time-span between the act
of choosing and the result was too long.
9
Initially when offered a
choice of afternoon snack,
Ivan seemed less confident;
he wanted everything, and
did not acknowledge the
rules. He was making
choices, yet it was obvious
that he did not know what
he was doing, nor why.
When we modified the
activity to choosing dinner
options and getting the
results of his choice a few
hours later, he became
more active and we began
to observe a relatively good
degree of participation.
This means that he was
recognising images,
following with interest what
happens, and was ready to
get involved in activities.
Ivan usually easily and
clearly expresses opinions
on most of the issues that
affect him, but when it
came to participating in
making decisions which had
never been presented to
him before, such as what
he wanted to eat, we had a
surprisingly hard time.
Overtime, however, Ivan has
become conscious of and
open to the chance to
choose new things.
He has begun realising the
responsibilities that come
with choice, and
emotionally he is better
able to handle making a
choice between two items,
despite wanting to
receive both.

Therefore we made two adjustments in our
approach. First, we decided to have the staff
member on duty show the picture of the
served dish in a way which did not interfere
with the meal itself, i.e. upon serving of the
dish, they were instructed to show the picture
beforehand and to verbally identify it. The
other change we decided to try was to begin
by having our clients decide what to have for
their afternoon snack. Since afternoon snacks
are ready-to-eat and do not require prior
cooking, it was much easier to show to Ivan
the real items, rather than pictures, and give
him immediately what he has chosen. Here,
we faced yet another difficulty but we knew it
would simply take time to help Ivan get
accustomed to the rules. Whenever we placed
a chocolate wafer, fruit, and crackers, he
would very seldom opt for the fruit, or he
would want to have two things at a time. We
did not worry much about the first situation,
because if one day he had the chocolate
wafer, he would have to choose from the
crackers and the fruit on the following day,
and eventually have the fruit on the third day.
The second situation was more difficult to
handle because he would get angry with not
being allowed to have all three. Here we
worked not only on making choices, but also
on observing rules. We staged alternative
situations requiring patience to get something
or choosing only one item from a selection of
two – be those activities, games or places for
going for a walk.
In view of his wilful character, Ivan needed
time to come to abide by the rules. However
there is already great progress, and he does
not get as angry as before if he fails to get
right away what he wants. There is much more
to the applied method of choosing food than
the mere selection of food – it helps nurture
discipline, a habit of observing rules, and, last
but not least, especially for Ivan, a sense of
being a master of what happens to himself.
Together with the work related to the choice
of afternoon snack, we continued to build the
link between the pictures and the food, yet
Ivan continued to ignore the photos, expecting
instead that we would make the selection.
Therefore, we decided to keep the practice of
having a menu for the week, shopping in
advance, but letting the children decide on the
immediate meal to be served on any particular
day. Every day after lunch we place on the
table pictures of the options for dinner. Each
child, Ivan included, has the opportunity to
say/indicate what they would like for dinner,
the dish with the majority of votes ‘winning’
and the picture of this dish being posted on
the refrigerator for everyone to see.
There is a lot of hard work ahead of us to
develop the concept of ‘voting’ on menu
There is much more
to the applied method of
choosing food than the
mere selection of food –
it helps nurture discipline,
a habit of observing rules,
and, last but not least,
especially for Ivan,
a sense of being a master
of what happens to himself.
“
”
IVAN:
Step 1: Choosing menu for the
following week.
Folder with pictures of dishes.
No solid connection between
the choice and obtaining of the
result.
Step 2: Choosing immediate
afternoon snack.
Real food and pictures.
Nurturing discipline and good
association-based link between
an item and the image thereof.
Step 3: Voting on dinner for
the same day from available
options.
Pictures of the options for
dinner.
Real choice and coming to
realise the consequences of the
choice.
He would always
make it clear with his
behaviour that he is aware
of being part of making the
dinner and not just eating
what he is served. -
Dessislava
“
”

options, as well as in applying the same
method to selecting lunches. Thus, step by
step, our clients will be able to design a full
menu for the following day, perhaps eventually
for the following week. And together with the
power to choose one’s own food they are
coming to realise that their opinion matters
with respect to issues much more important to
their personal lives. Because the choice of
meals affects all the children who cohabitate
with each other, the issue of human
interactions comes into play as well: Questions
such as ‘How to be tolerant to the choice of
others?’, ‘How to negotiate in order to get
what I want’, ‘How to learn to be patient’
come up spontaneously, and through the
experience and emotions attendant upon
them, are slowly being addressed.
One of the houses is home to seven children
and one young person, each with their own
unique personality, skills, and desires. After
repeatedly asking ourselves the question of
how to engage children at a higher level of
decision-making, we developed the idea of
establishing a Client Council to represent
clients, to protect their interests, and to serve
as a conduit for proposing changes in the
arrangements of life in the house. We realised
that it would be easiest for us to organise the
establishment and the operations of such a
Council. It is easy to fall into the trap of
thinking that we, as adults, and moreover – as
professionals, tend to know what is best for
our clients, that we can say who would be on
that council, set the rules and steer the
meetings. However, after discussing many
ideas within the team and with outside
consultants3, we chose a slightly different
path, committing ourselves instead to begin
with trying to truly understand the group, and
to help our clients experience what it means
to be part of a larger collective and to be
responsible for others. This path was certainly
longer than we originally anticipated, with
more unknowns than we hoped for, but we
are confident that it has been the right
approach.
In order to start nurturing these concepts in
the clients, we developed and began engaging
them in a daily activity called Circle Time.
Circle Time consists of morning and afternoon
sessions where all the residents from the house
get together and discuss upcoming events and
daily tasks and – at the end of the day – share
the way they feel.
Circle Time works as such: Every morning the
social worker gathers the clients in the sitting
room, where they discuss different aspects of
their day, displayed visually on the
whiteboard. They begin by going through
the staff members on duty, the day of the
week, the weather, all the while the children
taking turns placing the pictures
corresponding to the topics discussed. This is
an easy way for everyone to be able to
participate. Next, the day’s activities are
discussed. There are individual discussions
with every child – the mandatory activities for
the day are enumerated, such as going to
school, to the Day Centre, or the Centre for
Social Rehabilitation and Integration,
followed by a listing of any elective activities.
Children are free to choose whether or not
to take part in various activities, such as
taking care of our small pets, working in the
greenhouse, gardening, or taking walks.
At the end of the day, the children gather
again and discuss how their day has been. We
focus on encouraging children to evaluate
their own experience themselves; some of
them express this verbally, while others use the
drawings of a happy, sad or angry little face. If
someone is not happy, we try to understand
what the reason is and search for a solution
together, as a group. For example, once one
11
III. “We decide!” or How to build a Client Council?
Children already participate
actively in the activity –
‘actively’ meaning a different
thing for each of them. For
some this means that
instead of doing everything
and saying what will happen
with each one, they
patiently wait for their turn
and follow rules to respect
the desires of others. For
others, this means that
whereas before they would
isolate themselves at the
other end of the room,
totally indifferent to the
surrounding world, now
they either come over and
sit with the others or at
least watch what happens,
and when their turn to
choose an activity comes,
they gladly do so. We are
aware that this is far from
having a full-fledged Board
of Clients, yet if all our
clients fail to realise the
importance of their
participation as equals, or if
they fail to grasp, at least
subconsciously, that they
are part of a group in which
there are some rules, then
the engagement of anyone
in the Board would fall
short of being effective
and useful.
We promise to provide to Ivan:
- A relaxed environment with few
distractions.
- Leaner information: Few details in
connection with available options.
- Quick obtaining of the result of
the decision taken.
- Continued work on what it means
to vote for something in a group..
Ivan promises:
- To continue having fun
with us.
- To surprise us with the
progress he makes every day.
- To stand by his position.
3 The Cedar Foundation would like to thank Aneta Teneva from the Lumos Foundation Bulgaria
for her advice and expertise on these matters especially.

of the boys was unhappy with not being able
to feed the animals, although this had been
his choice for the day, but the labour therapist
had mistakenly recorded a different activity
instead. We asked him what needed to be
done in his opinion and he said that when
someone chose a picture, the social worker
should tell the other members of staff what
everyone chose to do for the day. We asked all
the children whether they agreed to this and
they said ‘Yes.’ To help every child understand
the arrangement, in the following mornings,
whenever someone chose something, we
always remind them that we would advise the
relevant staff member responsible for the
respective activity. In a few days’ time, even
the children who do not express themselves
verbally started to clap their hands and to
point at the picture of the respective staff
person. We interpreted that as a sign that they
understood the procedure.
When someone
wants something and I cannot
understand what this is, they
would take me to the board and
show me a picture of what they
expect to happen to them.
- Elena4
In the course of the work, we concluded that
in order to ensure sustainability of
established relations between the clients and
the Circle Time leader, he or she needed to
be always one and the same person.
Replacements needed to take place only by
exception. The time spent with certain clients
leads to building of bonds, to nurturing of
habits and rituals in communication and
interaction, in turn making everyone feel
relaxed and confident.
Not all clients expressed interest toward
group activities, and we hesitated to persist
at the risk of having the client ‘close up.’
Overtime, by allowing them to progress at
their own pace, the clients who stood aside
began slowly coming closer and following
with interest what was happening. Other
clients got quickly accustomed to the
‘pictures’ (as they came to dub them) and
were unwilling to give up and part with roles
which they had already assumed. Thus we
ended up with two distinct challenges
– how to pique the interest of half of the
children and to engage them with more
than a glance, and how to ‘temper’ the
overexcitement of the other half of the
children, so that everyone could step in.
12
The children of one
of the Small Group Homes,
participating in the Circle
time in the morning.“
”
4 Elena is the staff Team leader at this SGH.
When we started, the
children who were already
quite active continued as
so, while the ones who
typically were not willing to
participate in group
activities continued to stay
out. After about three
months, a change began to
take place – the more
active children began more
consciously to observe the
rules, while all the rest
began participating in their
own way by sitting on a
chair next to the white
board, by handing over a
picture, smiling, shyly tilting
their head or uttering
words the moderator used.
“
”

We decided to try allocating tasks: ‘Today you
will remove all of the pictures we will not
need. You (turning to another child) will tell us
the date and the day of the week today,’ and
so on. Thus, again we realised that with the
help of straightforward rules and simple tasks,
everyone felt confident with respect to their
skills, no one felt embarrassed, no one
interfered with others’ expressing themselves,
and everything ran more smoothly. ‘Shy’
children got the chance to speak up, to look
at a given picture, to dance with the social
worker if they wanted to, before they posted
the picture on the board. And they could do
this without being pressed by the energetic
nature of others. Meanwhile the ‘active’
children learned to wait their turn, to respect
the chance of others to express themselves as
well as the wishes of others with whom they
shared a home.
Once we achieved this balance, it was time for
the next step, making a collective decision.
International Children’s Day was around the
corner, and this was a wonderful opportunity
to have the children organise a fun activity,
which they could experience and enjoy very
soon after discussing it.
In order to show them different options for
how we could celebrate the holiday, we
produced pictures of past festivities with
various activities. We felt that the festive
occasions they had experienced in the past
should have left an emotional impression in
the minds of our clients. Our hope was that
the photographs would prompt our clients to
remember their experience and they would
select the activities that made them happiest.
Over almost two weeks, every morning we
talked about the upcoming holiday – we
described what the pictures portrayed and
discussed the options of having each home
celebrate on its own or get together for the
festivity instead. In the end, they unanimously
decided to get together outdoors, to have
contests, games, and dances. Some even
wanted special music, while others said they
wanted balloons, indicating their activeness
in the decision-making: they chose the
decoration, the dances, and the music.
On the day of the holiday everyone was very
excited and many expressed recognition if we
did something that they had previously seen in
a photograph.
After using the Children’s Day festivities to
prepare the children for more serious group
work, it was time to develop group rules that
would be binding for all and were meant to
make the collective effort easier. Several days
prior to starting work, we had a discussion to
the effect that we as a group had to abide by
certain rules and keep certain promises with
respect to each other, so that no one was
unhappy, and that soon we would need to
draw these rules. The children were told that
when the time came, everyone would have the
task of expressing what the most important
thing of all was, in their opinion. After the
morning sessions, we brought in a flipchart in
the sitting room, along with some pencils and
colour markers. We tried to focus the attention
of the children on the activity with the help of
questions such as: ‘What it is that we do
together every morning?’, ‘What needs to
happen so that we work well?’, and everyone
who spoke said that we needed to be all there.
We asked the children to draw this and they
drew eight little people. There were children
that did not manage to draw a little person,
but they nevertheless did some drawing.
Those who would not draw at least stood
nearby, not far from the rest.
13PARTICIPATING IN MY LIFE: HEAR MY VOICE!
THE CHILDREN
FROM THE SMALL
GROUP HOME:
Step 1: Building together a
working group, with
awareness
of the other person, nurturing
tolerance and skills for taking
collective decisions.
Circle Time.
Building a group that works
together.
Step 2: Making a collective
decision.
Pictures of past festivities.
Decision made and
implemented.
Step 3: Preparing a set of rules
of their own.
Flipchart and drawing.
Developed set of rules for
Circle Time.
Children working on the
participation agreement
Children celebrating 1st of June

After several days of repeating this rule so
that it reached everyone, we began the
preparations for the next rule, again using the
flipchart. We asked guiding questions, so that
we did not have just one or two children
coming up with the rules, but instead
engaging as many children in the process as
possible. The suggestion for the next rule was
that everyone waited for their turn. The
children drew eight little persons and assigned
numbers to them.
The following rule was that the “pictures” had
to be done every working day morning. On
the board itself, along with the name of the
day of the week, a table with seven columns
was placed, the relevant day being highlighted
in a different colour. The children said that this
was the way they wanted to use to display the
new rule.
Our work continues – in connection with
building a link between the choices made and
the responsibility assumed, with setting of
rules to regulate the interactions among the
clients, and, last but not least, with recognising
and supporting every attempt on their part at
empowerment and gaining control over their
everyday lives.
14
The most important
thing for me is that all
children get involved in
some way or another and
that they have started
waiting for each other and
respecting each other’s
choices. - Bilyana 5
“
”
The participation agreement
Children taking part in the Circle time: at
the beginning only few of them participated
1. “I change my environment!”
1.1 “I decide how my room will look!”
A) A set of pictures of finished children’s
rooms – different colours of walls,
decoration, and furniture.
Why did we select this instrument? We
chose this way of providing information and
working with children because we assumed
that once they saw finished children’s rooms,
it would be easier for them to understand
what exactly we offered to them and they
would have an idea of the things they liked.
We selected twelve images of children’s rooms
and uploaded them on several computers so
that we could work with several children
simultaneously.
IV. Instruments used
5 Bilyana is a Key Social worker and mediator of Circle Time.

What were our expectations? Our
expectations were that the children would
understand what we were offering, and would
select a favourite photo to guide us in how to
change their room.
What happened? It turned out that the
information we provided was too much and
tended to confuse our clients. One picture
following the other did not allow the children
to have a proper look at both and make
comparisons. We changed the approach,
creating one file in which all the images were
displayed, but the result once again was not
good. The children clearly indicated that our
ideas were not working for them and we would
need to work harder to get their attention.
B) Samples of paints – the ready-made
samples available in shops. We limited the
number of colours to twenty-four. In
addition to taking account of the need to
select colours appropriate for rooms of
children and youths, we also knew that if
we provided an excessive number of
options, children would not feel confident
and would not make their choice.
Why did we select this
instrument? Once the children showed to us
that they needed fewer details, we decided to
employ the same method one resorts to when
choosing the colour of walls – with the help of
samples available in shops.
What were our expectations? Our
assumptions were that the more secure
environment and the fewer details of
information provided would work better.
What happened? After repetitive individual
work, our clients chose the colours for walls.
When everything was ready and the children
took part in the cleaning up and arranging the
rooms, their reactions showed us the children
were happy with the makeover.
C) Samples of curtains and bedspreads –
the individual work and the choice itself
took place in a specialised shop. This
showed that with some preparatory work
and relevant support our clients could shop
like everyone else.
Why did we select this instrument? Once
we saw how the children managed with the
choice of colours and that the real instruments
used by everyone else worked well, we
decided that the children could make the
choice of curtains in a real-life environment.
What were our expectations? We were
somewhat concerned with the fact that we
were to visit a shop that was unfamiliar to the
clients. Yet the logical next step was to go to
a less secure and controlled environment.
What happened? Only several of our clients
decided that they wanted new curtains, once
consultations with staff took place. When we
got in the shop, the girls were a bit nervous
and they needed a few minutes to find their
bearings and relax. Once this happened, we
started the preparatory work for the choice
itself. We selected the appropriate fabrics. The
moment the girls realised what we were
offering them, they got excited and started
looking at the different options.
1.2 “I choose my meals!”
A) The menu is a folder with photos of the
dishes our clients eat. Clients also take part
in the shopping and in the cooking.
Why did we select this instrument? Using
pictures of familiar dishes would facilitate the
association between the image and the real
object.
What were our expectations? Here we
definitely expected that the adaptation period
would be shorter and we would soon have our
clients choose the whole menu for the week.
What happened? It turned out that the
challenge was less related to making a choice
than it was related to the time period between
making the choice and seeing the result, i.e.
the association between ‘I want potatoes!’ on
Samples of paints

Saturday, and the actual enjoying of potatoes
on the following Wednesday evening: this
method did not work. We decided to focus on
linking the real meal with its picture and at the
same time providing the chance for choosing
the afternoon snack (with immediate results).
We also moved to providing clients with the
immediate choice of what to cook for dinner
(with seven or eight options prepared in
advance) every evening. If there is no
unanimity, the meal getting the majority of
votes ‘wins.’ The picture of the selected dish is
posted on the fridge. For now the children
seem happy with this arrangement, and we
hope that in the near future they will be able
to choose the menu for one whole day, and,
as a next step, for one whole week.
2. “We decide!”
2.1 Circle time or “the pictures”
The objective of this activity is to have clients
realise the opportunity to think and work
together and to teach them to make
collective decisions, with the hope that in the
future this collective understanding will lead
to the development of a Client
Representative Council.
A) The Circle Time Board
Why did we select this instrument? Our
clients are inevitably part of a group; therefore
we decided that one of the crucial steps
toward having a working Client Council is to
nurture in the children the sense of belonging
to a group and to teach them how to make
collective decisions and implement them
together. The method employed in practice for
the achievement of this objective is Circle Time
– sessions during which every morning and
afternoon all the children from the home get
together and discuss upcoming events and
daily tasks, and at the end of the day share
their feelings and experiences.
What were our expectations? We expected
to have the clients consciously take into
account the presence and desires of the other
members of the group; to provide them with
a secure environment in which to share
concerns or complaints; to look for a solution
together, and, finally to grasp on an emotional
level what being a part of a group,
The menu
The Circle Time Board

participating in collective decisions, and
entrusting somebody with representing others
is about.
What happened? A better connection
between the social workers steering this
activity and clients was built. Children became
more attentive to the needs of others and
stopped being angry when they needed to
wait for their turn to come. We have still a lot
of work to do, but our plan is to have Circle
Time as the instrument for introducing all
these changes in the service and in the lives of
our clients. So far they respond very well and
have already internalised this activity as an
integral part of their daily routine. One of the
important steps is to prepare an agreement for
participation in which the children make visual
expressions of some simple rules and which
they symbolically sign in witness of their
commitment to follow these rules.
2.2 “We decide how to celebrate”
Making a decision how to celebrate
International Children’s Day
Why did we select this instrument? This is
an important holiday for our clients and they
are accustomed to having a celebration every
year. We decided that the first collective
decision could be based on how to celebrate
this day. We produced pictures of past
festivities displaying different activities –
dances, games, contests.
What were our expectations? We hoped
that these pictures would trigger recollection
of the experience of past celebrations, and this
would make the children select the activities
that made them happiest.
What happened? After several days’ work,
our clients decided what kind of celebration to
have. They decided that they wanted to be all
together, to have contests, and then dance.
Moreover, preferences that were not
previously displayed came up – concerning the
type of music and decorations.
CONCLUSIONS
What did we try?
At the beginning of the pilot project we
thought we knew what to expect. We had
an action plan and a strict schedule. In the
course of the work we stuck to the plan yet
with few results. It did not take long for us
to realise that if we wanted to bring about
change in the participation of our clients, in
their attitude towards the surrounding world,
and above all, in their perception and
awareness that they had the power to
change their environment, we needed to
change ourselves. We switched approaches,
we tried to put ourselves in their shoes, to
employ visual symbols with which they were
already familiar, in a way that would make
them feel confident in their own skills.
Results were soon to follow – tasks were not
frightening anymore, they welcomed us with
eagerness to work, and were proud showing
what belonged to them, what they did, and
what they changed.
What were the lessons we learned?
One of the primary lessons we learned was
that one of the major motivating agents for
children is fun and amusement. Another
important aspect is to set tasks that are easy to
fulfil and are as free from excess details as
possible. Among the instruments which we
were most successfully used in our work are
the photographs used to visualize what we’re
discussing. Also highly important became the
need to create the association between the
current task and everyday life, using every
possible opportunity to connect the choice
with their everyday experiences. Thanks to the
participation agreements which we prepared
together with the children, it became clear that
when they are involved in the whole process of
making a decision, through to seeing it come
to fruition, they are far more committed. Only
through full participation can children who
have never before held any responsibility for
their own lives and what happens to them,
learn that they also have the right to receive
appropriate information and to be heard. The
stories which we tell in this publication are
examples of exactly that – how to involve a
child with the idea that something can be
different, how he can get involved in the
processes of decision-making, even for
something very small, and how, in the end, this
small thing can become the foundation for a
much larger change – a change which can lead
to a whole new way of looking at his role in his
own life.
What pleases us about the work
completed?
Looking back, it is clear that the plan we so
meticulously made turned out to be but a brief
sketch of the road we followed. We are

satisfied with the fact that we managed to
alter our attitudes – we took the children as
they were. They also accepted us and
unfailingly showed us the right way and kept
leading us along it. We are pleased that there
is a change in everyone, albeit to a different
degree. Some would loudly voice their
opinion, insisting that it be taken into account;
others would smile and by a glance indicate
the dish, object, or activity they favoured.
What are our concerns?
Each success comes with the risk of
complacency, and our concern is that we may
become less vigilant and wary, less resourceful
and open towards our clients. It is so easy to
say to yourself: ‘Good job, I did what I had to.’
The truth is that our work is on-going and that
what lies ahead is no less important than the
work already accomplished.
What lies ahead?
To continue the work related to the
establishment of a Client Council.
To prepare a program for sustainability of
child participation by means of planning
activities and modifications to the service
that will take place solely with the
engagement of our clients.
To cascade our experience to our co-
workers in the other non-residential
social services our clients use, so that the
opinion of our clients is properly taken
into account across the board and their
skills to stand up for their rights are
further developed.
To disseminate our experience as broadly
as possible, for maximum outreach, since
child participation can happen at all
levels of the functioning of society.
18
I love to play!
“ ”

Quip provides support to people with disabilities
through independent coordination and training.
We provide these services in order to help
people with disabilities (regardless of age) to be
included into mainstream society and to live
independent lives, in accordance with their own
values and preferences.
Within this mission framework, Quip also
works directly with two boys with disabilities
who were placed in institutional care from
birth. The aim of Quip's efforts with these
young people is to open the way for family
care, with maximum involvement of both boys
in the decision-making process.
I. Mathias' story
Mathias is a 13 year old boy with multiple
disabilities (physical and intellectual disability,
as well as serious visual impairment). He has
lived in an institution his entire life. Currently
he is placed with a group of approximately
50 adults with intellectual difficulties. He has
no family; the municipality was appointed to
be his guardian.
When we started to work with Mathias,
nobody knew him except for the staff of the
institution, a social worker from the child
protection authorities and an education
specialist, who provided Mathias with four
hours of individual teaching per week
organized within the institution. Mathias had
no peers and no experiences in regular,
mainstream life. There was no
communication system which could be used
for understanding what Mathias wants or
dislikes, or which facilitated us in what we
wanted to say to him. Mathias had never
experienced an opportunity to participate in
decisions which concern him.
We have included Mathias’ story because in it
we can show how to involve a child who
cannot communicate verbally or through any
other formalized system, in decision-making –
even regarding such important decisions, such
as changing schools.
We started with “gifts and strengths”, in
order to find out what other people like and
admire about Mathias. We knew that this
could help us to present him in a positive
perspective. We wanted to replace the
abundance of negative descriptions about
Mathias (from doctors, psychologists, special
aid teachers and other specialists) with
positive information about him, for which
people could accept and love him.
As Mathias did not use words and there was
no other system of communication, our work
was based on interviews with the staff of the
institution and his teacher, as well as on
observation. We found a lot of very positive
evaluation, for example, “Mathias is nice
friendly boy”, “He has a sense of humour and
is able to joke around with people”, “He likes
to learn new things”, and “He really tries hard
to handle everything”.
It was also clear to us that Mathias is an
abandoned boy who lives without love,
individual attention or opportunities for
development. It was therefore necessary to
work on a change as soon as possible.
Chapter
2
PERSON-CENTRED PLANNING
AS A TOOL FOR PARTICIPATION
IN DECISION-MAKING
19
“gifts and strengths”
Step 1:
GIFTS AND
STRENGTHS
Outcome:
We were able to present
Mathias as the nice friendly
boy he is, to potential peers,
teachers, supporters and
possible foster parents.
We felt that this would
increase his chances of being
accepted into society and of
discovering a normal life.
”
Mathias is a 13 year
old boy with multiple
disabilities.
“

We organized a meeting to discuss Mathias’
future with representatives of the institution
and child protection authorities. We used the
“PATH” planning format. As there was no
communication system with Mathias at the
beginning of our work, we did not involve
Mathias directly in the decision making
process. We began instead with Mathias’
gifts and strengths, using our previous work.
Then we agreed on possible dreams for
Mathias: growing up in a family and having
friends among peers. We subsequently set
up two objectives for Mathias: to find a
foster family for Mathias and to find a school
where Mathias will be accepted – by both
peers and teachers.
There was a very big disparity between
Mathias’ dreams and his present situation. The
most serious problems included the lack of a
system for communication, no opportunity for
contacts with peers, very little individual
attention, and his anonymity – very few people
knew he existed. The group set up a few basic
steps: 1) Ensure that Mathias will be included
into the list of children suitable for foster care,
2) Find a mainstream school in the town,
3) Develop a communication system, and 4)
Prepare a one-page profile for finding the
school and prospective foster family.
We had set ourselves the task of finding a
mainstream school where Mathias could
establish contact with peers. For this, we
needed to present Mathias to prospective
schools in a positive way. But we had only a
folder containing expert reports, full of
appalling diagnoses and labels. We could
imagine how principals and teachers from
mainstream schools would be afraid to
accept such a pupil. The ideal solution was
Step 2:
PATH
Outcome:
We had a strong vision for
Mathias, and clear steps on
how to increase Mathias'
chance to find a foster family.
There was a clear task to
work on in developing a
communication system, which
could increase our ability to
involve Mathias in decision
making processes.
We visited all regular
schools and one special
school in the town using
the one-page profile as a
basic instrument for
introducing Mathias.
“
”

to prepare a one-page profile, containing a
pleasant photograph of Mathias, a list of
supports and adjustments which Mathias will
need to be able to attend the school, and
a list of Mathias’ favourite activities, places
and things.
Mathias was involved in this process indirectly
– through information which was gathered
from staff of the institution about what was
important to him.
We visited all regular schools and one special
school in the town using the one-page profile
as a basic instrument for introducing Mathias.
The head of a small school, when she saw the
picture, decided immediately to accept him in
the school.
Mathias communicates with his behaviour. He
does not use words, and he has a visual
impairment. His potential to communicate
depends on the extent to which people
around him know him. But staff of the
institution routinely interpreted Mathias'
behaviour as misbehaviour. School staff did
not understand many of his behaviours, and
thus could not adequately respond to it.
We began to apply “communication charts”.
There were two important issues at hand:
Beginning to understand his behaviours, and
responding adequately and consistently to
respective types of behaviour. All support
workers filled in the chart with four columns
regarding different types of behaviours in
specific situations. Then the workers
together agreed on the meaning of
respective behaviours and adequate
responses. One common, agreed chart was
(and continues to be) developed.
Support workers could now recognize
situations which regularly caused discomfort
to Mathias. Based on observations, we
recognized situations of discomfort as they
were manifested by shouting and self-harming
which could last almost two hours. In the past,
people around him thought that "he was
being very naughty”. This happened when
Mathias was returning from school to the
institution. As we began to understand
Mathias, we could address the situation and
together we found ways to help Mathias
manage more easily his return from the school
to the institution.
The next step in our work was to create for
Mathias a system of communication which will
strengthen his ability to express himself and to
be understood, as well as to provide a means
for both sides to initiate communication.
We decided to use communication objects.
We had to take into account two important
issues which affected the selection criteria:
PARTICIPATING IN MY LIFE: HEAR MY VOICE!
Step 3:
ONE PAGE
PROFILE
Outcome:
A short, concise and positive
description of what is
important to Mathias, what
kind of support he needs and
what are his gifts. This was the
preliminary material for setting
up support in the mainstream
school, which Mathias was to
start attending the following
school year.
Step 4:
COMMUNICATION
CHARTS
Outcome:
Thanks to the communication
charts, Mathias´
manifestations of behaviour
started to be interpreted as a
form of communication,
i.e. he was clearly expressing
what he does not like.
WHAT IS
HAPPENING
Anytime
We offer him an object
Anytime
When choosing
one option out of two
Anytime
Anytime
MATHIAS IS
DOING:
He is sitting in a
wheelchair and arches
backwards
Pushes the object aside
He is reaching for an object
He is reaching for a person
He is smacking his lips
loudly and flailing his hands
MATHIAS SAYS:
He wants to get out
of the wheel chair
I do not want it
I want it
I want to be caressed
I am in a bad mood
WE ARE DOING:
Help him climb to the
place where he can lie
down or crawl
We offer other objects
he likes, we let him
choose one of two
We hand it to him
We embrace Mathias
and caress him
We take Mathias by his
hand and we stroke alternately
his face, and our own
21

1) We had to know what Mathias likes and
what attracts his attention – sounds, light
reflections, structure of a material, etc.
2) As Mathias learns about objects around
him by putting them in his mouth, we had
to ensure that objects were safe.
Several months later, based on exploring and
testing, Mathias´ school assistant found a
most suitable aid – small bottles of hard plastic
which could be filled with different materials
and make different sounds when being
shaken. Several plastic bottles were filled with
different materials and Mathias differentiates
between them by listening to them. Each
bottle represented a specific activity: Water
means bathing, larger pebbles means staying
outside, rice means music lessons, green peas
means exercising and physiotherapy.
We are starting at this moment to always use
the appropriate aid before engaging Mathias
in the activity, so that he can establish a link
between the activity and the aid. Then it will
be possible for Mathias to select out of two
options and thus let us know about his
preferences and decisions.
One year later, another important decision
needed to be made: whether Mathias would
stay in the same school for another school
year, or whether he should continue in a
different school with his schoolmates, who
would be graduating out of the elementary
school after grade five. The director of the
institution requested to place Mathias in a
special school.
To decide this with Mathias’ involvement, we
gathered information about what was
important to Mathias at the given moment.
We interviewed the staff and other people and
we observed Mathias at school and in the
institution. Then a planning meeting was
organized, with not only professionals in
attendance – at that time there was a woman
in Mathias’ life who loved him and frequently
invited him to visit her family.
The colleague who was responsible for
gathering information was established as the
voice of Mathias. She listed what she learned
22
Step 5:
COMMUNICATION
OBJECTS
Outcome:
We developed the foundations
for increasing the opportunities
for Mathias to make the choice
between more than two
activities as the following
scheme shows.
Step 6:
SORTING
IMPORTANT TO
AND FOR
Outcome:
The final decision regarding
Mathias’ school placement was
made by his guardian (public
authorities). But for making
this decision, information was
taken into the account such as
what Mathias loves in the
school, which children,
activities, etc.
Go out
sweet shop
butcher shop
be outsideplayroom
in his chair
playground garden room
Stay home
walk in thepark watch animals
What does he want to do?
“What is important to” and
“What is important for”
Mathias regarding the school.

about what was important to Mathias. Then,
other people who loved Mathias and cared for
him also listed what was important for
Mathias. So we had two lists: “What is
important to” and “What is important for”
Mathias regarding the school.
We decided to start with a systematic
recording of Mathias' involvement in
decision-making which affects him. There are
quite a lot of people who support Mathias,
especially in the institution. We wanted all
people to know exactly how Mathias had to
be involved.
We decided to use a specific “Decision making
agreement” form, which consists from three
columns, where we listed various different
situations.
This structured way of thinking gave the
support team a clearer view of the best
approach in different decision making
situations, and who should be involved in the
respective decision. At the same time, it is a
way of recording and sharing agreed-upon
procedures.
There were three options: Remaining in the
same school, continuing with peers to another
mainstream school, or enrolling in a special
school. It was decided that he would
remain in his current school.
EVALUATION OF THE
WORK IN QUOTATIONS
The guardian: “I am very glad that I was able
to peek under the hood of how to work with
a child who cannot communicate verbally.
Using the tools you develop, you can find a lot
of information, which replace the missing
verbal language. It is then possible to decide
how to take into account the child’s wishes.”
EVALUATION OF THE
WORK WITH MATHIAS
What worked well:
Finding a way for Mathias to participate
in decision concerning his life.
Connecting people who support Mathias
in different surroundings (social services
provider, school, and host family) in
sharing communication systems and
integrating them.
Taking into consideration things which
are important to Mathias in deciding
about his further education.
Letting Mathias’ voice be heard via an
intermediary – a person who presents
the views of another person who does
not use words.
Finding a system which supports Mathias
in participating in decision making,
instead of making decisions for him.
Finding alternative, tailor-made
communication elements for Mathias.
What did not work well:
Making all persons who support Mathias
in the institution utilise a communication
system which allows Mathias to
understand what is being said. Often
they make decisions for him.
Step 7:
DECISION MAKING
AGREEMENT
Outcome:
This tool also directly helps
children increase choice and
control of their lives.
Decision making agreements
support the child's involvement
in the decision making process,
due to the increased attention
paid by support staff to the
child’s voice.
IMPORTANT
DECISIONS IN MY
LIFE
Take a bath in the
swimming pool.
Next decision regarding we to
attend school.
HOW I MUST BE INVOLVED
We give Mathias two plastic bottles –one containing water
(meaning I want to take a bath) and one with rice (meaning I do not
want to go into the water, I want to play). The bottles are laid before
Mathias at the same distance. Mathias chooses one of the bottles to
choose the activity he wants to do.
The views of Mathias are mapped by systematic observation of his
behaviour and interviews with support persons in advance of the
decision. Mathias is involved through an advocate, who mediates
Mathias’ voice based on the preliminary mapping.
WHO MAKES THE
FINAL DECISION
Mathias.
Guardian.
23

II. Mark's story
Mark is an eleven year old boy who lives in a
residential home together with about 75
adults with disabilities. He has lived in
institutional care since his birth, moving
between several different residential facilities.
He has no real contact with his biological
family. He doesn’t know his parents personally,
despite the fact that he is placed in the
institution on a signed agreement between the
institution and his father.
Mark attends a special school in the town.
After he gets home from school at noon, he
spends the rest of the day among adults with
nearly no possibility of being involved in
activities fit for children. In fact, he has very
limited contact with peers at all.
Mark keeps regular contact with the family of
a former social worker from the institution. He
calls her “mom”. They spend most of their
weekends together. Mark goes for holidays
and trips with them and he is unconditionally
accepted by all members of the whole
family – parents, siblings, their partners,
grandparents, friends of parents.
We started our work with Mark by mapping
important people in his life in four spheres:
family, friends, paid services and school.
We used a form from a workbook for Person
Centred Planning. Mark was specifying
persons and places, while we made the figures
of people.
Most importantly during this activity, we
discovered that there is a woman whom Mark
calls “mam”, who loves him and whose family
also very kindly accepts Mark.
The biological parents were not on the map,
even though they exist.
We began to ask Mark what was important to
him – what he likes and dislikes to do in the
institution, at school, in the family and places
where he spends time. We were interested in
learning how and with whom he likes to
spend his leisure time.
We tried to find out his wishes with the help
of a “magic wand” and a set of pictures.
First, we identified a real situation, and then
we explored what he would like it to be.
Questions were adapted to be more
interesting for Mark: If you went to a magic
island, whom would you bring with you? If
you could change something now, what
Step 1:
RELATIONSHIPS
MAP
Outcome:
We got a clear picture of the
persons in Mark's life.
We could see who would be
useful to ask for further
information and for being
involved in planning and
providing support for Mark.
Step 2:
SORTING
IMPORTANT TO
AND FOR
Outcome:
We got a picture of all different
activities, places, persons
which are important to Mark,
and also what is important for
Mark from the point of view of
people who love him.
It was very easy to find out
what works and what does not
work in Mark’s life. The
majority of things were not
working out for Mark. What is important for Mark and
for the people around him
Mark’s relationships map.

would it be? What present would you like to
receive? You meet a magic knight in a
mysterious castle. He can fulfil three wishes
- what would they be? What do you want to
do on holidays and where? You can tell this
teddy bear absolutely everything. What will
you tell him?
We also used different forms from workbooks
for learning what is important to Mark.
We also developed a short list of what Mark
dislikes: Shouting, being on my own, and
being beaten with a wooden spoon.
Based on the findings which showed deep
differences between Mark's real life and the
life he wishes to have, we decided to hold a
planning meeting. The goal was to bring
more of what he loves into Mark's life,
through the planning of his future. Together
with Mark, we chose who would be invited:
Mum, sister (Mum's daughter), a key staff
worker and another direct care worker from
the institution.
We decided to use PATH as we had a clear idea
about Mark's dreams and we needed to plan
the steps for fulfilling the dream.
The meeting took almost two and half hours.
Mark was present all the time and he was very
active. He loved using the magic wand, which
helped him stimulate creative thinking in all
participants. We set up a list of goals: Mark
will attend a hobby circle, will have at least one
permanent friend, will have his own room, and
will go for a trip at least once a month. He will
start to learn cycling, line skating and skiing,
he will read and write, he will get a motorcycle
lift and finally he will live in a family.
When we were sure that Mark was interested
in becoming a member of the camping club,
we started our preparation.
We decided to prepare Mark’s one-page
profile for becoming a member of the club.
We included in the profile Mark’s photo and
three parts of text focused on Mark’s gifts and
strengths, supports which he needs for
attending such a club, and information on
what is important to him.
We involved Mark directly in the preparation
of his profile. We asked him about what he
likes and dislikes. We discussed the support
which he will need in regular meetings and
trips with other children and so on. We also
used information collected through discussions
with people who take care of Mark.
25
Mark's PATH
Step 3:
PATH
Outcome:
We created clear goals, which
were set up with Mark’s direct
involvement.
We have formulated a key
objective: Mark will live in a
family environment. In relation
to this, the facilitator turned
for help to the local child
protection authorities.
Step 4:
DECISION MAKING
AGREEMENT
Outcome:
Mark decided clearly that he
wants to attend the club.
Other children are informed
about how Mark needs to be
supported (e.g. with reading).
We discovered effective types
of support in decision making
about daily activities.
Mark's decision-making

26
IMPORTANT
DECISIONS IN MY
LIFE
What to do in my leisure time.
HOW I MUST BE INVOLVED
Show me a few possibilities visually: Put pictures of activities on the
sheet of the paper, talk about respective activities, ask me questions
to be sure I understand, and then give me the chance to point my
finger at my choice.
WHO MAKES THE
FINAL DECISION
Mark
Step 5:
ONE PAGE
PROFILE
Outcome:
We had information for
meeting with the leader of the
club, which was portrayed in a
positive manner and where all
important issues were included
in accordance with Mark’s will.
Mark was accepted to be a
member of the club and
started to attend.
Mark’s other important wish was to have
friends and do typical child’s activities – play
games, go for trips, play a musical instrument,
spend time in nature, ride a bicycle, skate on
inline skates, and ski.
To address this wish we found a hobby club
(the camping club mentioned above),
attended by about 20 children who meet
once a week, play games, go for trips,
organize explorations using bicycles, inline
skates or skis. We needed to be sure
that Mark would like to become a member
of the club.
We knew that Mark frequently answered
questions of choice by reacting to the last
mentioned option which is offered to him. For
example, if we ask him, “Do you prefer to go
to zoo, or to the cinema?” he will answer
“cinema”, although we know that he doesn’t
like the cinema, while he could spend all his
time in the zoo.
Therefore we visualized the information on
large sheets of paper and information
connected with decision making was drawn
and complemented with prepared pictures.
When introducing all activities of the club we
asked him various questions to see that he
really understood the information. This type of
support was useful: Mark was with us all the
time, he was actively asking about things and
it was clear that he was enjoying himself.
In the end Mark repeated his choice saying
YES and he pointed his finger at the sheet
describing activities he could do with the club.
We used this experience in preparing a
decision making agreement, which is available
for all support persons in Mark’s life.

One of the topics of this project was the
participation of children in decision making
at the level of public administration.
International studies show that the right to
participate in decision making is one of the
most frequently denied rights to children
with intellectual disability.
Therefore, we approached the local authority
Prague 14 and began to work with them on
involving children with intellectual disabilities
in municipal policy through specific activities,
e.g. Pupils' Council and Children’s Forum.
First, we began attending meetings of the
Pupils´ Council, which meets regularly every
first Tuesday of the month. The Council
discusses various matters which are of concern
to children, and prepares interesting events to
which other children are invited, where they
systematically collect the participants’
opinions. The Council representatives acquire
certain skills through “playing” at municipal
policy. Such play is organized by the local
authorities at the beginning of every term of
office. The term of office for the Pupils'
Council is one school year.
One meeting of the Pupils’ Council focused on
the life of a child with intellectual disabilities.
First, each member of the Council reflected on
their own interests, likes and dislikes and
recorded all of their observations on paper.
Second, we began to introduce children with
intellectual disabilities into the group, using one
page profiles which clearly indicate what the
child likes and what support he/she needs. The
pupils came to the conclusion that in fact there
is no difference and that they do not understand
why people make such a fuss about inclusion.
The pupils voted to adopt several agreed steps
and they unanimously decided to include two
more children in their Council. Together we
agreed that the Children’s Forum would be the
first joint event. The next meeting of the local
government focused on this topic only. In light
of welcoming new members of the local
government we prepared together with the
Pupils’ Council (20 children aged 12 - 17) texts
which could be easily understood by everybody.
One of the topics for the Children’s Forum
was leisure and sports. We needed to collect
the opinions of participants concerning
opportunities for spending leisure time and
playing sports - whether the local authority
provides space and places where young people
can engage in activities which they really like.
27
III. Group story
EVALUATION OF THE
WORK IN QUOTATIONS
Foster mum: “If I hadn’t seen it, I would not
have believed that Mark can be focused for
such a long time. He liked it very much, he
enjoyed being in the spotlight and he liked
that everybody was here for him at any
moment. He didn’t have to share a close
person with anyone else.”
Foster sister: “When I saw Mark waving the
magic wand, I really had a feeling that
anything was possible... I was not thinking
about reasons why things couldn’t be done,
but I was thinking about ways how to proceed
so that things went well”.
EVALUATION OF THE
WORK WITH MARK
What worked well:
Finding a way to pass information to
Mark so that he can understand.
Transferring these ways of communication
to people who are close to him (his mum,
his sister, key social worker) and upon
whom Mark depends (they work with the
information further on).
Letting Mark decide how he wants to
spend his leisure time on Thursday, and
acting in accordance with his decision.
What did not work well:
Including all persons who support Mark
(staff of the institution, school teacher and
teacher’s assistant) in the system of
transferring understandable information
to Mark. Often they make decisions
for him.

WHAT TURNED
OUT WELL?
Meeting with the mayor who
clearly supported the idea.
Meeting with 3 people who
support these children’s activities
in Prague 14. One person was
very positive about our proposal
(“it’s a natural thing”), two other
persons also positively approved,
saying “let’s try it”.
Meeting with Pupils’ Council
with a clear result - we don’t
understand why these children
did not join us a long time ago.
Together with councillors,
preparing materials that would
be easily understood by
everybody.
Finding two families who
supported their children to
become members of the Pupils’
Council.
Arranging participation of Petr
and Dasa during the next term
of office.
WHAT FAILED
Find a family that would support
their child to participate in
Children’s Forum.
In the case of Petr and Dasa
we agreed with one of the
organizers, selected by the team
to be a contact person for us at
the Pupils’ Council, to shoot a
documentary that could be later
used by other councils. However,
on the day, the other members
of the team didn’t know about
the shooting, which caused a
discord in planned actions.
“To be different does not mean not to be a
good friend. …To be different is normal and
he who does not consider it normal is not
normal.” (Member of the Pupils’ Council).
We approached nine families in Prague 14
with the help of social services operating in the
district. We offered their child with intellectual
disabilities to participate in Children’s Forum.
However they all gave us an unexpected
negative answer: they did not wish to send
their child to an event which was organized
for all children (children with and without
disability). They did not want to expose their
child to ridicule. Thus we saw a paradox.
Children themselves were ready to accept
individuals with intellectual disabilities. Barriers
exist namely in our heads, that is in the heads
of adults. The event took place, and although
there had been preparations for involving
young people with intellectual disabilities,
none of them participated.
It was the third year of joint meeting of about
one hundred pupils and students to discuss
problems of the district in various spheres of
life (culture, sports and leisure, greenery, public
space, system of education, transport,
criminality and security).
The event was an example of good practice of
engaging children and young people in
municipal politics. This was an opportunity for
children to influence future development and
quality of life in their district.
“Some of you probably do not know that
Prague 14 organizes events at which at least
some of the adults pretend to be interested in
what young persons of our age think. I guess
I now offended most of my peers, but seriously
- we are children of mother Earth and our
parents”. (Jakub Resutík, 16 years old, Member
of the Pupils´ Council of Prague 14).
We also acted individually and in May we
found two families who supported their
children in the decision to participate in the
meeting of the Pupils´ Council. The meeting
took place in June 2014. Given that this was
the last meeting before the summer holidays,
the content of the meeting was to evaluate
the past year and to prepare an event which
was presented by the deputy mayor of
Prague 14. She offered to the children to
attend a meeting with Members of the
Parliament which she had arranged. 8
children wished to attend, including Petr,
who participated for the first time. Both
young persons, Petr 15 years and Dasa 16
years, liked the meeting very much and they
concluded that they would join the Pupils´
Council in September.
After the meeting, we spoke with Dasa’s
mother, who came to pick her up and bring
her home. She told us that she had not
28

believed in it (and that she had been one of
those mothers who was offered the same
thing by social service which her daughter
visits), but as Dasa insisted, she finally
supported her. When we asked her why she
did not support Dasa, when her voice had
been heard for the first time, she explained
that she had had a bad experience. Several
times she visited DDM (the Centre for children
and youth), which helps organize the Pupils’
Council) to have her daughter enrolled in the
flute course. She was rejected with an
explanation that DDM is not able to provide
services for children with intellectual
disabilities, as their staff are not trained.
Therefore she enrolled Dasa in a specialised
institution which only children with intellectual
disabilities attend.
A key change in the thinking of the whole
DDM was that a children’s voice was
respected by the staff. The voice was clearly
saying: We do not understand why these
children should be someplace else than we
are. We want them here.
IV. Resources
This part of our publication includes a
summary of tools which help involve children
in the decision making process. We give a
short description of each tool and also refer to
Internet links where other sources can be
accessed.
We based our work on Person Centred
Planning. Techniques and tools resulting from
this concept create – if correctly applied – a
space for identifying and respecting the
opinion of a person that is provided
assistance and support. At the same time,
the health, safety and acceptance of a
person by their community is adequately
taken into consideration. Specific cases of
the application of tools listed below can be
found in the previous chapters.
Person Centred Planning (PCP) is a specific
approach to planning support and assistance
which a person with disability or some other
disadvantage needs in everyday life or in
taking steps that lead to major changes in
their life. It takes into account things that are
important to them and thus extends
opportunities for their self-determination. It
is not limited to services provided by
professional service only. Also the skills and
gifts of a person, their family and friends,
wealth of the local community, common
public services are included among resources.
We used the following tools in the "Hear Our
Voices!" project to strengthen the voice of
children with intellectual disabilities.
One page profile
One page profile is a brief outline of major
findings about the person. It needs to be
developed for a purpose so that its preparation
does not become mere formality. A One page
profile is usually developed as a result of the
first meeting with the child to summarize key
findings important for further care and
support. Other reasons for developing a one
page profile can include the child’s enrolment
in school, changing service provider or looking
for a foster family.
Usually one page profile is composed of three
parts:
1) What do people who know the child and
who love him/her, like and admire about
the child?
2) What is important to the child - what does
he/she like to do, where and with whom
does he/she like to go?
3) How can we provide the best support to
the child?
It also includes his/her photo and possibly
objects that tell something about his/her
personality.
One page profile should give as many details
as possible to enable maximum practical use
(e.g. she likes doughnuts and honey cake
instead of she likes sweet meals; he needs his
backpack perfectly buckled, his belt tightly
fastened, he hates to have things on his table
moved instead of he likes his order). The
section on support should contain a
description of support/assistance, not a list of
limitations (e.g. he needs advice on where to
note the meetings in his diary and remind
every morning, what he is supposed to do
instead of he has problems with time).
If we want to involve a young
person in decision making, we
should know what is important to
them. Often children need help
when expressing their ideas and
when making themselves

understood. The One page profile
is a good tool which helps us
understand the preferences of a
young person and the ways to
best help them.
To develop a One page profile it is good to use
data collected by such tools as Gifts and
Strengths, Relationship Circle/Map, sorting the
important to/for, Staff Matching etc.
For further information about One Page Profile
go to:
http://www.helensandersonassociates.co.uk/
media/38428/onepageprofilesinschools.pdf
media/38450/oppinschlguide.pdf
http://onepageprofiles.wordpress.com/
http://www.google.cz/url?sa=t&rct=j&q=&esrc=
s&source=web&cd=15&ved=0CJYBEBYwDg&url
=http%3A%2F%2Flibrary.teachingtimes.com%
2Farticles%2Fwhyeverychildneedsaonepagepro
file&ei=gUGGU6b9K_u_T7Aa88IH4Cg&usg=AF
QjCNEG9Ew4JDuYFiM7pEchO_RggIFfPA&sig2=
NFhMOjHCXuq85gLIItSKyA&bvm=bv.67720277,
d.ZGU
reading-room/how/person-centred-
thinking/one-page-profiles.aspx
Gifts and Strengths
Mapping of a person's strengths - gifts and
talents - has at least three purposes in person
centred planning. First, it compensates for
numerous negative descriptions - medical,
psychological, psychiatric and other
diagnoses which are often used with a
disabled person; they often stigmatize and
represent a barrier for positive perception of
a person. Second, gifts and talents can be
practically used for building social bonds and
relations, for finding one’s place in school or
at work, as well as for inclusion in common
life of society. And lastly:
Finding out what the young
person is good at increases the
probability that we help them plan
activities they are interested in
and they will like. This is especially
important with young people with
severe disabilities who are not
capable of articulating verbally
their likings. It is based on the
assumption that one usually
wishes to do things, at which
he/she is already good.
To make thinking about gifts and talents
easier, we can use a simple illustration which
reminds us that gifts and talents are not only
in one’s head, but they can be found in the
arms, heart, roots (family history, faith etc.).
To get an idea about someone’s strengths, we
ask members of the staff, family members,
friends and other residents, etc. We can also
organise an "art" workshop, where we draw
a contour of the person on a large sheet of
paper and then draw his/her talents to it.
For more information go to:
http://www.nes.scot.nhs.uk/media/435128/1387
5-nes-mental_health-module4.pdf (page. 100).
Relationships map/circle
A Relationship map is a graphic description
of who the young person is in contact with,
and how close the relationships are. The
shorter the distance between people on the
paper, the closer the relationship. The map
helps discover who is important for the child,
out of family members, schoolmates, friends
and staff, including teachers and other paid
persons.
The map can be divided into four sectors, each
of them representing relationships with
different groups of people: family, friends,
professionals, and schoolmates and house
mates. This graphic description of relationships
also clearly shows who is missing in the child’s
life, which relationships should be reinforced,
who has not been used in providing support
(and should be involved), and who should be
invited to help develop the plan or be invited
to a planning meeting.
30

When developing a map, the young person
should be given the opportunity to give their
idea about relationships. The child can draw
the map himself/herself; he/she can place
photos of people around his/her portrait, etc.
In the case that the child cannot be involved
directly, we need to read information from
their behaviour or use other alternative
methods.
Relationships mapping can inform
us on many things: with whom
the young person wants to spend
the most time, whose presence
they are not interested in, who is
missing in their relationships, etc.
Respecting these findings
strengthens the participation
of children in decision making.
For further information go to:
reading-room/how/person-centred-thinking/
person-centred-thinking-tools/relationship-
circle.aspx
http://trainingpack.personcentredplanning.eu/
attachments/article/90/pct%20relationship%20
circle.pdf
http://www.gadoe.org/Curriculum-Instruction-
and-Assessment/Special-Education-Services/
Documents/Quad.RelationshipMap.pdf
https://www.realopportunities.org.uk/media/64
285/relationship_circles.pdf
4+1 questions
This simple tool gives a structured way for
everyone to gather collective learning and to
make this visible to everyone. It asks the
following questions: What have you tried?
What have you learned? What are you pleased
about? What are you concerned about? The
answers to the first four questions lead us to
the 'plus 1' question: Based on what we know,
what should we do next?
We can use 4+1 questions during meetings
as the basic input for deciding on the next
steps. We can post sheets of flip chart paper
on the wall, each with a different question,
while the facilitator asks people (including
the child) to write on them. A child might
need help from somebody else to be involved
actively.
4+1 questions can help us listen
better to the child, if we include
him in the process personally or
if the appointed representative
(in the case where the child
cannot directly communicate)
expresses the view of the child
thanks to previous work with
other tools, such as the
Communication chart, Sorting
important to and for, etc.
person-centred-thinking-tools/4-plus-
1-questions.aspx
Sorting Important to and for
It is necessary to establish a balance between
what is important to (what one likes and
dislikes) and what is important for a young
person. It is important that the care provided
to a young person enables them to engage in
favourite activities with favourite people at
favourite places. At the same time, the young
person needs to be kept healthy and safe; their
positive mental and physical development
needs to be ensured, as well as the
opportunity to be raised in the family. In this
case it is not about deciding “either - or”.
In children whose capability to phrase and
express their ideas is reduced due to an
intellectual disability, attention needs to be
paid to mapping of what is important to them
and differentiate it from what is important for
31
What have you tried?
What are you pleased about?
What have you learned?
What are you concerned about?
Based on what we know, what
should we do next?
Mark’s relationships map.

them. This is how we can enable children with
disabilities to participate in decision making.
A scale diagram IMPORTANT TO AND
IMPORTANT FOR can be of great help.
When planning support, we focus on
addressing items on the right side (important
for), but we need also to take into
consideration items on the left side (important
to). Taking into account favourite activities,
toys etc. can have an essential impact on the
child’s motivation to participate in activities
which are not very popular with them but
which are important for their development.
Descriptions on the right side are meant to
represent things which should be avoided
when raising a child, and things which should
be ensured (it cannot only be a list of medical
or psychological diagnoses). The left side
includes only the opinion of the child
(important to).
Visualisation (drawings, pictures, photos etc.)
or various playful and imaginative techniques
- using for example the magic wand, or a
teddy bear in which the child can confide a
secret - help us gather information from the
child (and also from adults).
Observations and interviews with people who
know the child well in various situations can be
used to identify what is important to children
who do not use words, do not understand
what is being said, and for whom there is no
functioning two-way communication system.
Both sides of the diagram are developed
depending on the provision of opportunities for
the child to explore the world, and depending
on how people around the child get to know
him/her. If we know very little about what the
child likes at the beginning, this should be a
signal for us to engage in activities that will offer
new opportunities. For example, nine-year-old
Mathias was transported to the consultation
about alternative communication in a car, at
which point it was discovered that he loved
riding in a car and he liked city traffic (as any
other typical young boy).
person-centred-thinking-tools/sorting-
important-tofor.aspx
http://trainingpack.personcentredplanning.eu/
index.php/en/person-centred-thinking-
tools/important-to-for
PATH
PATH means Planning Alternative Tomorrows
with Hope. PATH consists of 8 steps
visualized in specific format which is used to
facilitate a planning process. The basis of
PATH is a template which reflects the process
of discussion among people who are
supposed to help a focus person plan a
practical journey leading toward a future that
makes sense to them.
The objective of PATH is to identify clear steps
that lead to a desirable change for the better.
PATH starts with dreams of the focus person
and continues then with what the group
considers it should be the first steps towards
achieving positive changes.
8 steps of PATH:
1. Dreams
2. Goals
3. Now
4. People to enroll
5. Ways to build strength
6. First steps
7. Next actions
PATH is a great tool for setting
out dreams, positive and possible
goals of a child or a young
person. The process results in a
pictured time-lined action plan to
achieve the goals.
The discussion is ideally moderated by a
facilitator who guides the group and a
person who records the discussion in a
template.
32
IMPORTANT
DECISIONS IN
MY LIFE
Description of the
decision.
HOW I MUST
BE INVOLVED
Description of the direct
involvement and needed
support.
WHO MAKES
THE FINAL
DECISION
Name of the person, who
make the final decision.

http://www.inclusion.com/artcommonsense
tools.html
http://www.inclusion.com/path.html
Decision making agreement
This tool also directly helps children increase
choice and control in their lives. It is a simple
form which consists from three columns.
Such a structured method of thinking gives the
support team a clearer view of the best
approaches and who should be involved in
respective decisions. At the same time it is a
way of recording agreed-upon procedures,
and means of communicating these
procedures to others.
Decision making agreement
increases the child's involvement
in the decision making process
due to an increased level of
attention which support staff pays
to the child’s voice.
media/75056/decisionmakingwithexamples.pdf
person-centred-thinking-tools/decision-
making-agreement.aspx
Communication charts
Communication charts is an effective way of
capturing what people are telling us
through their behaviour, as well as a means
of informing others what to do, should the
person communicate with the specific
behaviour. This tool help us especially when
people do not communicate with words or
other formalized communication systems
(like sign language, pictures etc.) or when
behaviours are a clearer method of
communication than words.
Communication is a bilateral process; due to
this we need two types of charts: 1) How we
understand what the person is telling us and
2) How we will communicate with the person
what we would like them to do.
1. Chart of how the person communicates
The chart of how the person communicates
can have two forms for two different
situations. First, when we do not know what
a specific behaviour means, we can try to
explore the meaning in specific circumstances.
The second approach addresses a situation
where the meaning is known and we need to
capture this knowledge for all support persons
(serving like a dictionary).
2. How we tell the person what we would
like them to do
This chart helps all support persons know
what to say and what to do to make a
person understand them.
Communication charts give to
children who communicate mainly
through behaviours the possibility
to express themselves and to be
understood. This is central to
them having adequate choice and
control over their lives.
person-centred-thinking-tools/communication-
chart.aspx

http://learningcommunity.us/documents/
Chapter4_PersonCentredThinkingTool_4_Com
munication.pdf
Objects communication
These are small objects or parts of objects
which represent things, activities, or persons.
Objects can be used to give individuals an idea
of what is about to happen, e.g. a small shoe
can mean going out, a spoon can symbolize
food, etc.
This type of tool is used for enhancing
understanding and expression especially for
children who have severe intellectual
disabilities. Visuals and objects are often
easier to understand for some children than
spoken words.
The selection of objects must conform to a
specific person, and conform to the
environment in which it is being utilized. There
is no complete series of these objects. Objects
are selected according to the needs and
capabilities of the person.
http://www.icommunicatetherapy.com/
child-speech-language/children-special-needs-
learning-difficulties/using-visuals-aids-objects-
reference-enhance-communication/
34

CONCLUSIONS
What worked well:
Using various Person Centred Planning
tools.
Connecting the work of the department
of child protection, the institution, the
school and after school activities, and the
host family.
Interconnecting communication tools
and person planning tools.
Including children with intellectual
disability in Pupils´ Council.
What pleases us about the work
completed?
The people who are personally interested
in the children worked with us and use
the outcomes of the planning.
In both cases we managed to link up
professionals and non-professionals and
involve them cooperatively.
We managed to get the voices of the
children heard by those who make
decisions, and the children’s views were
taken into consideration.
We managed to find a system for
persons who support the children which
helps them participate in everyday
decision making.
We developed a functioning
communication system which is used to
help the children participate in decision
making.
We managed to exercise the inclusion of
children in the community.
Children without disability showed a
great interest in including children with
disability in the Pupils’ Council.
The local authorities were willing to help.
What are we worried about?
Uncertainty in the departments of child
protection in relation to one of the
children’s biological family, which needs
to be taken into account.
It is evident that the existing system
provides for departments of child
protection to use diverse approaches;
however if there is no will to support a
new approach, it is a big barrier.
There is a certain percentage of children
with intellectual disability about whom
we have very little information; some of
them cannot be approached at all
because the department of child
protection does not want to address the
issue, or does not perceive a child as
being at-risk.
The negative attitude of parents of
children with disability regarding the
opportunity to involve their child in the
Pupils´ Council.
What have we learned?
It is worthwhile not to be content only
with communication aids offered on the
market, but also to rely on one’s own
creativity and activity.
It is useful to enter into contracts with
parties (e.g. service providers) to enforce
an approach which will ensure that the
child will be taken seriously.
Everything needs time because at all
levels, there is always a risk that things
will stop moving forward.
What are the next steps?
Finding a way to incorporate this
approach in the work of departments of
child protection and institutions.
Showing that children with intellectual
disability have their own opinions and
that they should be taken into
consideration in decision making.
Searching for a way to make children
with intellectual disability contribute to
the work of the Pupils´ Council.

INCLUSION EUROPE
Inclusion Europe is the European network
of associations representing people with
intellectual disabilities and their families in
36 European countries. Since 1988, Inclusion
Europe seeks policy mainstreaming, equal
opportunities and full participation of people
with intellectual disabilities in all aspects of
society. www.inclusion-europe.org.
EUROCHILD
Eurochild is a network of organisations and
individuals working in and across Europe to
promote the rights and well-being of children
and young people. Eurochild’s work is
underpinned by the United Nations Convention
on the Rights of the Child.
www.eurochild.org.
QUIP, CZECH REPUBLIC
The civic association Quip was founded in 2003 to support the
development of quality and good practice in social services, promote
education in this area and encourage awareness and rights of social
service users, especially of people with intellectual disabilities and
complex needs. http://www.kvalitavpraxi.cz/en/.
With the financial support of the Fundamental Rights and Citizenship programme
of the European Commission.
Inclusion Europe
CEDAR FOUNDATION, BULGARIA
The Cedar Foundation is a Bulgarian not-for-profit organisation
registered in 2005 which focuses on de-institutionalisation: the
process of closing down big specialized institutions for children
and young adults with physical and intellectual difficulty and
replacing them with family-type community services.
http://www.cedarfoundation.org/en/.
FUNDACIÓN SINDROME DE DOWN,
MADRID, SPAIN
Down Madrid is a non-profit organisation, whose mission is the
pursuit of individual autonomy of persons with Down syndrome
or other intellectual disabilities and their full social inclusion.
www.downmadrid.org.
EN
In collaboration with Lumos: www.wearelumos.org.

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