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Person centred planning in supported decision-making
Lessons learned in Black & White project
Prague, 2017
Project partners:
Quip | Karlínské nám 12/59, 186 03 Praha 8
Tel.: +420 221 890 434 | [email protected] | www.kvalitavpraxi.cz
Společnost pro podporu lidí s mentálním postižením (Inclusion Czech Republic) |Karlínské nám 12/59,
186 03 Praha 8
Tel.: +420 224 890 436 | [email protected] | www.spmpcr.cz
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The following text is a part of a wider document which summarizes methodology of providing support in
decision-making currently used in the Czech Republic. It includes a brief description of simple tools of
person centred planning that have been successfully used by social workers who are involved in
designing of decision-making support within the project Black & White1. Person centred planning is still
quite new in the Czech Republic. There is no material about this topic published, here.
There is no universal instruction how to proceed in providing support. Presented pieces of work indicate
different variations of combining elements of social and legal support. The practical use of some tools is
described in two cases which are in the attachment.
Tools should not be used for their own sake without the clear purpose. It should always be clear what
would be the benefit resulting from a certain step. E.g., tasks which will result from planning sessions
that use complex planning methods such as PATH or MAPS can be translated into an action plan that
works well when monitoring work progress. At the next planning session other tools can be used.
The use of tools in itself does not ensure effective assistance. Mechanical use of tools or the use of tools
without understanding a person and the nature of the tool can result in the confirmation of the old
practice based on substitute decision-making. We need to reflect on why a chosen tool should be used
and how will the outcome be used.
It is not always necessary to use the tools including their graphic form. It is important to adhere to the
principles that are embedded in the tools. In Elena's story, e.g., the tool "Sorting important to and for" is
used only freely, without the diagram. A social worker who interviewed her just kept in mind that it was
necessary to get the opinion of both sides. In other cases, visual separation of the two lists may be
important for understanding the situation of a person. Tension which arises from divergences of opinion
can become a source for planning good steps forward.
The wider document summarizing methodology of providing support in decision-making was created in
Black & White project funded by Open Society Institute Foundation. The project is implemented by
organizations Quip and SPMP ČR.
1 http://www.kvalitavpraxi.cz/en/projects/current-projects/black-and-white/
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Gifts and talents
Mapping person's strengths – their gifts and talents – allows for a fundamental shift in thinking about
people with disabilities by moving our attention away from the
negative aspects (problems, deficits) to their potential. It
compensates for a large number of negative messages
represented by medical, psychological, psychiatric, and other
specialized diagnoses which usually accompany a person with
disability and which are often stigmatizing and posing a barrier
to positive perception of a person.
Secondly, gifts and talents can be practically used for building
social ties, which are a key element of decision-making support.
A basic prerequisite for access to natural support is contacts with
people who can potentially become our friends or co-workers. It
is important to realize what other people can appreciate about a
person and what can motivate them to create a friendly
relationship.
Recognizing what a person excels at also increases the likelihood
that we can help them plan the activities which are of interest to
them and which they will enjoy. This is especially important for people who cannot articulate verbally
what they like. It is based on the assumption that one rather wishes to do things which he/she is really
good at.
To identify gifts and talents we can use certain techniques. The first one is aimed at identifying strengths
that can be searched for in the head, arms, heart and roots (legs) of a person using an illustration
(Livesley, Pohl, Kennedy, & Sanderson, 2008). We are looking for answers to the following questions:
- What gifts do we have in our arms, hands (voice)? - What gifts do we have in our head? - What gifts do we have in our heart? - Are there any gifts in our past and identity?
We can find out about strengths of a person by asking not only the person himself/herself but also asking
people who are close, such as family members, staff, friends, etc.
Martin, for example (Figure 1), found a job by sharing his ideas about his gifts and talents. We have
identified that he has a great talent for working with people, inspiring them, and that he enjoys it very
much. We managed to improve the support in communication so that Martin, despite great obstacles in
the area of communication, can make presentations for students and the public.
Figure 1 Martin’s gifts
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We thought it would be useful to apply the following chart to find out how to use Martin’s gift to inspire
others
Relationship circle
Relationship circle is a graphic description of with
whom the person is in contact and how close the
relationships are. The shorter is the distance between
people on the paper, the closer is the relationship.
This tool helps discover who is important for the
focus person among the family members, friends, co-
workers or housemates and paid professionals. The
circle consists of four concentric circles in the centre
of which there is the focus person whose relationship
circle is being created. The closest are those who are
emotionally most important, loved ones – closest
family, closest friends (e.g. on the figure they are
mum and dad). Friends and other relatives are in the
second, circle. Even more distant circle includes
people whom the focus person encounters e.g. at
work or at school. Paid professionals are in the
furthest circle.
We can divide the relationship circle into four sectors (As it is on figure 4. The sectors there are: 1.
family, 2. people he knows and people of common interests, 3. friends, 4. paid professionals) which
allows us to clearly distinguish relationships with family members, friends, professionals and co-workers
or housemates while, at the same time, capture more accurately the proximity of relationships with
Place in a community Role Gift, talent
Figure 3. Gabina’s relationship circle
Figure 2 Chart for finding out use of gifts and talents
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people from various groups. The disadvantage of this combined format is its complexity. If we need to
simplify the chart for practical use, we can do it the same way as Elena.
Not to be confused: The relationship circle is like a map on which we can see who is where. It is not the
circle of support – a group of people who have committed themselves to providing assistance and
support to a person.
Graphical representation of relationships clearly shows who are the people in a person’s life, who is
missing, and what relationships should be
strengthened. Displaying relationships can
make it easier for the person to think about
whom to address and ask for help in decision-
making, planning. Tomas (Figure 9) used the
circle of relationships on coloured cards to
clarify who in his life is a friend and whom he
can invite home. The idea to use this tool
resulted from an awkward situation: Tomas
was robbed by a neighbor in the house to
which he had moved a few months before
that. He invited a stranger to his flat and the
man stole his gold chain and ring and left. Now
Tomas knows better whom he should not invite home.
Representation of relationships can take a variety of forms: cards attached to a large sheet of paper or
arranged on the floor, a picture can be drawn, as in Elena's story.
Once we have mapped the person’s
relationships and we know who are the
closest people for him/her, and who these
people are, we can start considering
whether the group can provide sufficient
support in decision-making regarding
important issues, and to what extent the
group includes people with whom the
person has a relationship of mutual trust.
Graphical representation of Martin’s
relationships helped him realize his social
surroundings, how it is, what was missing
and what he wanted to change.
Of course, a person who is to be provided
support in decision-making needs to be involved in the process of developing the circle of relationships
to a greatest possible extent. Different workbooks can be used for this purpose.
Figure 4. You can invite only people on the blue cards to come to your flat!
Figure 5. Green bubbles are Martin’s dreams in the sphere of relationships
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The work on Jane's circle of relationships showed that most of Jane's relatives or friends either live far
from Prague or they are people she has not seen since childhood. With the help of a social worker she
tried to get in touch with her family. However, due to a great distance, unfortunately, she was unable to
find anybody who could see her on regular basis and therefore she only speaks on the phone with them.
It became clear that new relationships need to be established.
One page profile One page profile is a brief outline of major findings about the person. It is always necessary to develop it
for a specific purpose which determines the focus of the content. Typically, the profile is developed as a
result of the first meeting with a
new service user to sum up key
findings about him/her that are
important for the support. Also
there can be other reasons, e.g.
admission to a hospital, changing a
service provider or searching for a
volunteer, etc.
One page profile is composed of
three parts:
1. The central part is about
what do people, who know the
person and who love him/her, like
and admire about them. For this
part we can use the outputs of Gifts and talents tool
2. In the left column we write down what is important to the person. This includes one part of the
tool Sorting what is important – to the person, and/or what is related to the purpose of the one
page profile.
Figure 6. Jane was very active in mapping her relationships
Figure 7. One page profile of Helena
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3. In the right column we indicate how to provide best support to the person: Description of
support which the person inevitably needs, again from the perspective of the reason for creating
one page profile.
We can add a portrait of the person or objects that portray him or her.
For practical use of the profile it is important to include as many detail as possible (for example, she likes
scones and honey cake instead of she likes sweets, or his backpack needs to be perfectly bucked up, his
belt needs to be absolutely tightened, and he hates when someone moves his things on the desk instead
of he likes his order). The support section describes what support/assistance is needed, it does not
include the list of limitations (for example, he needs to get advice on where in his diary to put down
appointments and he needs to be reminded every morning what he is going to do on that day instead of
writing he does not have a sense of time).
In particular, knowing what is important to the person is crucial for involving them in the decision-
making process. People often need help with expressing their ideas and with being understood. One-
page profile makes it possible to identify preferences of the person and to find ways how to help them.
One-page profile is a live description of the person. It corresponds to what is really important to the
person right now. We cannot develop a one page profile which would be considered valid for several
years. As the person changes, their wishes, needs, dreams, and desirable support change, the data in
the one page profile need to correspond to them.
A rich picture Another simple tool for a quick introduction of the person is a
Rich picture. It usually encapsulates the basic information
about what he likes to do, his/her hobbies and also indicates
what he/she does not like.
The picture can be prepared differently depending on the
situation. When it comes to meeting a new service user, it's
good to prepare the picture in collaboration with the person
and his/her family and social workers who know him/her well.
The result may be a combination of different views and
experiences in one image.
A rich picture can be used for presenting the person: at an
initial meeting with an applicant for a job of an assistant a
social worker can use a rich picture to present the person’s
needs. Looking at the poster they can discuss whether the job
seeker can handle the job.
Vojtěch's rich picture was used to make his likings and
hobbies more transparent; we needed that for mapping personal networks and it was developed by a
social worker together with Vojta.
Figure 8. Vojta’s rich picture
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Sorting important to/for
It is necessary to establish balance between important to (what one likes and dislikes) and important for
the person (what other people mean). Support needs to enable the person to live in accordance with
their preferences, interests and dreams, while at the same time adequately protecting their safety. This
is not an "either-or" type of decision.
For persons whose ability to articulate and express
their own ideas is limited due to their disability it is
necessary to focus on mapping what is important
to them and differentiating it from what is
important for them. This will enable people to get
involved in decision-making. A scale diagram
IMPORTANT TO and IMPORTANT FOR can be of a
great help in this exercise.
When providing support, we have to focus on
addressing items on the left side important to the
person. Items on the right side (important for) we
need to take into consideration to plan the
support to achieve what is important to the
person. Starting to think from the perspective of other
people is typical for substitute decision-making approach.
Visualisation (drawings, pictures, photos etc.) or various playful and imaginative techniques, using for
example magic wand, helps us gather information from the person.
Observations and interviews with people who know the person well in various situations can be used to
identify what is important to persons 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 person’s opportunities to explore the world
and depending on how their view of things around them change.
IMPORTANT TO
Favourite objects,
hobbies, meals, rituals,
places, routines,
people... what he/she
does not like, etc.
IMPORTANT FOR
Health
Safety
Being accepted
Figure 9 Important to/for
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Dreams and wishes Knowing the dreams and wishes of a person to whom we provide support in decision-making and legal
proceedings is important at least for two reasons.
In cases where we have to interpret the will of a person who cannot make a decision himself/herself it is
crucial that we know what they care about in life and what they strive for. An example could be Jaroslav
and his decision to buy a satellite TV set. Jaroslav was not able to make his own decision even with the
maximum possible support. However, the people who were assisting him were able to interpret his will
just because they knew him well; they knew how much he cared about watching sports and music
shows.
In many cases, we can interpret the will of a person only when we know what is his/her idea of an ideal
world, what he/she would ideally be doing in such a world and with whom. What gives a person
direction in his/her life, what kind of relationships a person would like to have, where he/she would like
to live, what places he/she would like to visit, what new things he/she would like to try.
The other reason are situations when the dream of a person can be used for inspiration, as a point of
reference in looking for people with similar ideas, or looking for places where a person could fulfil their
dream. To be able to think in this way we can use a chart from brochure Community Connecting
At times I read the newspaper, listen to the radio and watch the news.
I like silence. That’s why I go to the cemetery occasionally where I sit and listen to silence.
It is important to me to play musical instruments. It’s my life. I am a musician. I can play keyboard and violin. I search for opportunities for sharing this passion with other people.
It is important for me to be returned legal capacity and get in touch with my family.
I have a daughter and two grandsons in Slovakia.
Good housemates.
To know whom I can turn to and ask for advice or help. I do not like to bother people around me.
I need support to set up my personal financial budget. I need help when dealing with financial institutions, when checking account statement, checking expenses and savings.
I need someone to administer my drugs to me on time.
I need someone to help me and see to my routine or agreed medical check ups.
I would welcome, if someone is with me to hear results of the check up and helps me to make conclusions and take necessary measures.
Figure 10 Example of Sorting important to/for
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(Livesley, Pohl, Kennedy, & Sanderson, 2008). At the same time, the tool helps to reflect on what one
should do to get closer to his/her dream.
Communication charts
For people who do not use words, do not communicate in any other formalized way and no
communication system has been developed for them, we can use so called communication chart to
record things that help us understand the person and record the way of giving him/her information so
that he/she understands it.
For each direction of communication, there is a different communication chart: one for understanding
what the person is telling us, and the other for giving information to the person. There are two options
for the chart which helps us understand depending on whether we are trying to discover the content of
the message – we are learning to understand, or whether we are using the chart as a translation
dictionary.
We use the chart to describe a situation (1st column) in which a certain behaviour appears (2nd column),
an estimated meaning of this behaviour in a given situation (3rd column) and an estimated instruction
for people surrounding the person – what they are supposed to do (column 4) . We begin to fill the
second column of the chart because first of all we usually notice incomprehensible behaviour and we try
to make sense of it because it is likely to have a specific meaning. For example, it can be so-called
problem behaviour by means of which people, who do not use any communication system (it has not
been developed), are expressing dissatisfaction. It is usually overlooked just by referring to "a problem
client manifesting problem behaviour". We record in the greatest possible detail what we are seeing, i.e.
behaviour manifestations. Then we start reflecting what the person might be telling us and write it down
in the third column. The fourth column describes our view of what we should be doing (our answer).
Then we go to the first column and we write down as many details as possible: where the behaviour was
manifested, who was there and what they were doing, what objects were there, what was the light ...
anything we have noticed.
The chart is (ideally) used by all people who
support the person in some way, they can
be family members, friends, colleagues,
teachers or social service workers. The use
of the chart provides us with a great deal of
information that we then sort and do our
best to comprehend. In practice, it usually
means that everybody writes their insights
into their charts, or people also can come
together and jointly reflect on the
behaviour they usually observe in the
person, they share their interpretation of
the behaviour and describe what they are
trying to do in the given situation. In the discussion, they try to comprehend the behaviour and agree on
What is
happening:
_____ is doing:
We think it means:
We think we should do:
Figure 11: Chart "To understand the person" – we are learning to understand
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the formulation of necessary support at that moment. In this way we develop a communication chart
which serves as a translation dictionary as it was in Lucie's story (in attachment).
Recording regularly the details of manifested behaviour and its triggers (Column 1 - What's happening)
means that the group of people involved in the support meets to review the records in order to
understand what the person is trying to tell people around by behaving in a certain way. If, despite
detailed observation and recording, we do not understand a manifested behaviour, we do a so-called
experiment: we suggest a hypothesis – what we think the behaviour means. Most often, we choose an
assumed meaning of the behaviour from the chart of one of the supporters and we determine duration
of the experiment. During that time all supporters give the same answer to the person, that is, the
answer we all have agreed on. For this phase we can use e.g. the Learning Log , which is a tool described
and explained in a booklet "Person Centred Thinking" (Sanderson & Goodwin, 2010: 14). It leads us in a
structured way and encourages us to record the findings. We repeat this process during the experiment
until we can understand the meaning of the behaviour manifested or until we come to a unified
meaning.
The result is understanding what a certain behaviour means – what does a person say by behaving in a
specific way. Then, the second type of the chart can be developed: a translation dictionary that is used,
for example, by Lucie. This chart contains the behaviour whose meaning is clear to us now. So, we know
what the person is telling us and how we should respond.
Figure 12. Chart "To understand the person" – we are learning to understand
Something
happened outside
the plan
He is constrained,
rubbing his hands,
making loud sounds
When outing,
sitting on a
bench
He gets up from
the bench
He wants to leave,
he might want to
change a place
He shows
dissatisfaction,
nervousness
We should
probably go away
Stroke his arm,
change the activity
What is
happening:
Miroslav is doing:
We think it
means:
We think we
should do:
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For the opposite direction of communication – so that a supported person understands us, we use a
three-column chart where we record what we want to say (1st column), what we do to make the person
understand (column 2) and what we say (3rd column).
"So that the person understands us" chart can also be used as an overview of how staff members (or
anybody else, such as family members) can communicate with the person to learn new communication
skills. We have an example of cooperation with Vojtěch.
Vojtěch has had a lot of experience with situations when he was saying something to people around him,
which was absolutely clear from his point of view, however they reacted with phrases like: "What are
you talking about?", "I don’t understand", "I don’t get your babble", "Stop shouting at me" or they would
interrupt the conversation without giving a reason. This was caused by the fact that people did not
understand him and they were taking offence. In some situations, Vojtěch starts speaking very quickly,
What is happening: Miroslav is
doing: We think it means: We think we should:
Figure 14. How to understand a person chart – example of a translation dictionary
Something
happened outside
the plan
He is constrained,
rubs his hands,
strokes his hair,
bites his lips, he
makes loud sounds
When outing,
sitting on a
bench
He gets up from
the bench
I want to go away
I don’t like it,
don’t do it to me
We go away
We stroke his
shoulder and
change activity
We want to tell:
To do this we:
What is happening ____ is doing ____is telling We do:
Figure 13. How to understand a person – a translation dictionary
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more loudly and he jumps from one topic to another. He becomes incomprehensible for people around
him. We have talked to Vojtěch and agreed on a way of letting him know that people cannot follow his
fast and sometimes repetitive speech. It is a way that will not upset Vojtěch and that will not cause
further complications in dealing with the people he likes and cares about. If such situation occurs, we put
our palm on his shoulder and say, "Vojta, stop". Vojtěch is clear about this knowing that he needs to
slow down and repeat what he was saying.
Communication charts are not a panacea and they are not suitable for all situations. In any case, they are
very good for reviewing the way we actually communicate with the people, for revealing the meaning of
a specific behaviour through which the person expresses himself/herself, and can also help ensure a
uniform approach to communication which is an important prerequisite for developing a communication
system of a person.
We want to tell Vojtěch: To do this we: We say:
I do not understand
what you are saying
We put our palm on
Vojtěch’s shoulder. Vojta, stop.
Figure 16. The use of "So that the person understands us" chart
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Attachment
Case study to show practical use of person centred
planning tools in supported decision-making
Elena
Elena (34 years) has experienced two major mental illness attacks in the last twelve years. This resulted
in the long term hospitalisation in a psychiatric hospital. Especially during the second attack, Elena spent
all her savings amounting to CZK 300,000 (cca 12,000 EUR) and even borrowed additional CZK 90,000
(cca 3,600 EUR). Most of Elena’s expenses were for goods and services unnecessary to her needs at the
time. Elena’s parents successfully returned a portion of the ordered goods and rescinded contracts on
some of the services. Consequently, her parents applied to court to limit her capacity to handle large
financial sums. However, the court went a step further and instead restricted Elena’s capacity to act in all
areas of life and conclude contracts except for managing the maximum sum of CZK 1,000 (40 EUR) a
month. Her father was accordingly appointed her guardian. Nonetheless, Elena continued to pay back
the rest of her debts in connection to her excessive and unnecessary expenditure.
Over the last five years, Elena’s condition has stabilised. She has been taking her medication and has
been in regular contact with her psychiatrist. Owing to her improved condition Elena decided to apply to
court to have her legal capacity restored. The main reason for her application was that she felt
stigmatized when trying to find a regular job outside the sheltered employment.
Elena’s therapist from a group home where Elena was living contacted a provider of social rehabilitation
services whose lawyer and social worker began to look into Elena´s case. At their initial meeting, it was
agreed that Elena´s application for the restoration of legal capacity would be complemented with her
support plan relating to her mental health and financial issues.
Relationship Circle
The first step was to map people around Elena who could help her identify risks and plan the support.
The social worker proposed to use the visual aid “relationship circle”. Elena, who loved to paint at the
time, decided to map out her current relationships and paint them (see figure below). She divided the
paper into three sections and wrote down the names of professionals who were currently helping her,
i.e. her psychiatrist, case manager and other workers of the community based services; family members:
her parents, her brother, distant family members and her friends including her ex-boyfriend and other
close friends. The map also included a path illustrating her previous stays in the hospital associated with
her loneliness as well as the future showing what was important to Elena - painting, travelling, a
boyfriend etc.
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Elena discussed the drawing with
the social worker and together they
pondered over the best person
whom Elena should select to
support her in planning and in
practical decision making in case
she would need such support in the
future. It was agreed that Elena
would ask her psychiatrist and
therapist from the group home
where she was living at that time to
arrange a meeting. She also
considered including some former
therapists but eventually there was
no need to contact them. Elena
contacted some of her close friends to become her potential support persons including her ex boy-friend
and a close friend. She was hesitant to contact her father who was her guardian at the time. Finally, only
professionals and family were involved in the process because Elena's relationships changed a lot with
her arrival in the community in the countryside where she had long wished to live.
Outcome
The map of relationships helped identify important people whom Elena trusted so that she was able to
ask them to participate in the development of her support plan.
It was possible to agree on key meetings with people chosen to help prepare her support plan.
What is important to and for Elena
Elena's past experience has shown that the planning of support needs to take into account the risks
associated with a potential attack of mental illness. So the focus was primarily on her mental health. A
meeting with her psychiatrist and a therapist from the sheltered home was arranged.
In order to structure the meeting the social worker used a person centred planning tool named “sorting
important to/for” and therefore the discussion started with Elena stating what was important to her. Her
answers were:
Not to get to the psychiatric hospital but manage possible attacks of mental illness in consultation with her
psychiatrist.
The psychiatrist then followed up saying that it was important for Elena to learn to manage possible
attacks without being hospitalized.
Attacks do not come out of the blue but the symptoms show gradually. It is necessary to identify warning
signals at the very beginning.
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The arrival of the attack can be stopped. To prevent the attack it is essential that Elena contacts her
psychiatrist.
The discussion then focused on various ways of support that members of Elena’s circle could provide. For
details see the chapter Support Plan.
Later, the Social Worker initiated another meeting to see Elena and her mom, friends from the
community that Elena had moved in, and a lawyer representing Elena in the court. Again, the social
worker used the person centred planning tool named “sorting important to/for”. The purpose was to
identify risks related to financial issues. The property issue was omitted as Elena had no property at that
moment. First Elena had an opportunity to indicate what was important to her in ensuring efficient
financial management, which were:
To manage her finances wisely
Even after having her legal capacity restored her parents should help her manage her finances on
her bank account including their access to her bank account via electronic banking.
Then Elena’s mother shared her view on what was important for her daughter:
Elena should learn to manage her finances by herself and be responsible for it. It should be Elena
to manage her electronic banking and get to know how to check her account balance by regularly
downloading the financial statement.
Help should be provided to enable Elena to monitor, recognize and seek for help in situations
when due to the mental illness attack she tends to indulge excessively in shopping and buying
unnecessary goods and services as was the case in the past.
Elena's and her mother's views differed with regard to the financial issue. While Elena wanted to
maintain the same level of support from her parents as in a situation of limited legal capacity, her
mother wanted a change towards strengthening Elena's responsibility.
Result
During the meeting Elena and her mother had an opportunity to share their ideas on the future
management of Elena’s finances. Their views were surprisingly different. Elena expected no changes
after the restoration of her legal capacity and wanted her parents to continue to manage her bank
account; however her mother thought otherwise.
Key information was obtained for the next step – the planning of support in the sphere of mental health
care and in the sphere of finances.
Plan of Support The plan of support for Elena in managing her independent life without any limitation to her legal
capacity was developed during the aforementioned meetings after the identifying of what was important
to and what was important for Elena. The social worker facilitated the discussion in such a way that
Elena’s statements were taken for the basic assumption, however, the views of the psychiatrist and the
parents were also taken into account when looking for possible measures.
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The plan of support in the area of health was based on Elena’s wish to avoid hospitalisation in the future.
According to the psychiatrist, the symptoms of mental illness can be recognised before it strikes and the
people who are in regular contact with Elena can help identify them. Thus they need to be in contact
with Elena and watch how she is doing. Also they need to help Elena get an insight into her illness and
tell her about warning symptoms showing the arrival of the attack, should she not notice them. In order
to cope with the attack Elena needs to see her psychiatrist who can help her by adjusting the medication.
For this purpose it may be necessary to help Elena go and visit her doctor or, at least, contact the
psychiatrist. Accordingly, there was an agreement at the meeting that there should be a person whom
Elena would ask for support in such case.
The final plan of support for handling finances ended up in a compromise because the mother refused to
provide her daughter with the same form of support as in the past. And so, despite the fact that the
social worker, in agreement with Elena, had first suggested how to set the joint access to Elena's
electronic banking for her and the parents after Elena's legal capacity is restored, this form of support
was eventually ruled out. One of other reasons was the identification of Elena's long-term financial
situation: a monthly disability pension of CZK 3,400 (136 EUR) and a care allowance of CZK 800 (32 EUR)
were paid to Elena's account every month. At the same time, there are standing payment orders for
housing, etc. on the account. The balance on the account never exceeds 15,000 (600 EUR). It is obvious
that Elena would not handle large sums of money as her income hardly covers her daily expenses.
The social worker helped arrange that once Elena's legal capacity is restored she would assume full
responsibility for her account. Since she does not know how to use electronic banking and the payment
card, her parents will continue to help her, however, without having direct access to the electronic
system.
In addition, effective support for Elena was agreed for situations, when due to the attack of her mental
illness she would conclude unfavourable contracts and it would be necessary to negotiate with
companies the contract cancellations and return of the money paid. For this purpose the social worker
arranged a meeting which was attended by the lawyer. The lawyer explained to Elena, her mother and
friends from the community how the legal instrument called advance directive works. Thanks to this
instrument a person can empower people who he/she trusts to act on his/her behalf in case of his/her
future legal disability. Also the power of attorney was considered, however this could be questioned at
the time of a mental attack. In the discussion, Elena decided to use the advance directive.
The outcome of the meeting was a specific plan which showed how people from Elena's natural social
surroundings would support her in both areas. After the meeting the social worker turned the plan into a
document which was to serve Elena and her circle of support on the one hand, and become a piece of
evidence for the court hearing on the other hand. The social worker sent the draft plan to all participants
of the meeting for comments which she later incorporated in the document. The lawyer representing
Ms. Elena sent the document to the court. The plan included:
A) Care for mental health
Basic assumptions for managing care for mental health:
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It is important to Elena to avoid hospitalisation in the psychiatric hospital and to cope with possible
attacks through outpatient care.
According to the psychiatrist's opinion, it is very important to recognize the arrival of the attack when
the first symptoms occur; then the illness can be coped with through the outpatient care. The attacks do
not come out of the blue, their symptoms come gradually. They can be stopped. In such situations Elena
can be helped considerably by her psychiatrist in particular.
What kind of help Elena needs – what needs to be done and who does it:
1. To recognize the first symptoms of the attack so that it can be stopped without hospitalisation.
It is necessary to be in regular contact with Elena – to meet her and to see how she is doing.
Ms. Elena will continue to be in regular contact with her family, mainly her parents. In the
community, where Elena lives, she is in daily contact with the Novaks (husband and wife). Elena
agreed with her parents and the Novaks that they would keep an eye on her to see how she is
doing.
2. To become aware of warning symptoms showing the attack arrival.
It is necessary that people close to Elena warn her that they have noticed warning symptoms.
Elena and other people from the community with whom she is in daily contact, and her family
agreed that they would alert her on warning symptoms.
3. Contact the psychiatrist when the attack is coming. The psychiatrist can help Elena to manage the situation without hospitalisation.
Elena, her parents and the Novaks agreed that they would help her and go with her to see her
psychiatrist in the outpatient clinic.
In case that Elena is not having an objective insight into her situation, she would need one of the
above mentioned persons call the psychiatrist. For this purpose, Elena introduced the Novaks to
her psychiatrist. The parents already have been in touch with the psychiatrist.
B) Care for Elena’s financial situation
Basic assumptions for managing Elena’s financial situation:
Ms. Elena is willing to use her money wisely. She would like her parents to help her manage the funds on
her bank account even after her legal capacity is restored.
From the point of view of Elena’s mother, it is important for Elena to learn how to manage her finances
and to assume responsibility for them. At the same time, the mother believes that it is important to help
her daughter in a situation, when -due to the attack of her mental illness- she would cause damage to
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herself by her legal action. For such situation it is necessary to ensure that such legal action is
pronounced null and void.
What kind of support Elena needs, what needs to be done and who will do it?
1. Elena will ask her mother for advice when she needs to conduct banking operations. The mother
will help her daughter in the same way as until now.
2. Should Ms Elena enter into unfavourable contracts due to any further attack of her illness, she
needs assistance in negotiating with companies to cancel the contracts and/or return the
goods. When Elena’s legal capacity is restored, she will grant full powers or issue an advance
directive to her father and one of Novak spouses to apply the invalidity of the legal action2
which would cause damage to Elena, should she not be able to make such legal step herself due
to her current health condition.
Outcome
The prerequisites for effective support for Elena were established to manage situations, when -as in the
past- she would enter unfavourable contracts due to the arrival of her mental illness attack. The plan,
that was developed, has become a practical measure that constitutes an alternative to limiting legal
capacity. Restricted legal capacity was stigmatising for Elena in many respects because it limited her in
many areas of life, while in fact did not provide better protection.
The plan of support was sent to the court as the evidence supporting the decision on the restoration of
legal capacity.
Advance Directive
Elena needed to authorize some of her close relatives to act on her behalf, should she -in a situation of
her mental illness attack- make a legal action which would cause damage to her; they would act on her
behalf and seek the invalidity of her legal action.
For Elena's needs, a newly established provision on the advance directive is to be used. It is a binding
manifestation of the will of a person that should be used in a situation when they would not be able to
manage their own matters due to their incapacity to act legally. With this instruction, Elena could
identify and authorize persons who would act in relation to her property.
It was agreed at the joint meeting, that the draft advance instruction would be prepared by the lawyer
who would send it to others for comments. This was done. After the consultation with the lawyer and
the family, Elena decided for the option of the advance instruction at the presence of witnesses
(document would be signed in the notary office). The draft advance directive was commented on by all
persons involved – Elena, her parents and the Novaks.
2 see § 581 and. Act 89/2012 of the Col., Civil Code
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Elena authorized her father and Mr. Novak to seek, if necessary, the nullity of her legal action that she
would have made to her detriment at the time of the attack. The mother and Mrs. Novak signed the
witness statement. The authorized persons confirmed that they were acquainted with the instruction
and would act in accordance with, it if they learn that the anticipated situation has occurred.
The final version of the advance instruction was presented at the court. The judge decided on the legal
capacity restoration in full scope.
Outcome
Even though Elena’s condition has long been stabilised, it cannot be ruled out that another attack of her
mental illness arrives and she would make unfavourable legal actions. So far the risk has been addressed
by the limitation of legal capacity. However, this limited her excessively in many other areas, even when
the manifestations of her illness were not present. She felt strongly stigmatised by her legal capacity
limitation. The advance instruction will provide her security in potential crisis situations without undue
limitation of her constitutional and civil rights.
Conclusion
During the court proceedings, the judge considered the presented plan of support as relevant. She heard
Elena and her lawyer (lawyer of the social service provider), as well as the father and the social worker.
She examined the expert’s opinion and other documents. Based on the evaluation of the evidence she
concluded that the proposed plan of support ensures sufficient protection of Elena’s rights and interests
and constitutes an alternative to the limitation of legal capacity.
The judge promised Elena that she would decide on the restoration of legal capacity in full scope after
Elena presents to the court her draft of advance directive and she did so.
Lucie
We met Lucy for the first time when she was eighteen. She had just completed her basic education and
her parents were thinking about what to do next. Lucy was not able to attend secondary school like
other children because she would not be admitted for her disability – an untypical form of autism and
learning difficulties. Neither, she could attend a special school which she had been forced to leave
previously for displaying undesirable social behaviour. For many years after she was not able to get rid of
its manifestations and they practically prevent her from coexisting with her peers.
The family had very limited resources to be able to arrange an everyday program and necessary support
and assistance for Lucy. There were only two options there: day care centre (or week care centre) or
staying at home with the parents. The family decided to keep Lucy at home and prepare a program
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which would offer multiple meaningful incentives and activities to ensure her best possible
development.
At the same period of time Lucy´s mum attended a course "Person Cantered Planning". Inspired by the
course Lucy´s parents gathered relevant information about Lucy and her life. Her talents and gifts were
identified, first communication chart was developed (it helped understand her reactions and prevent
undesirable ones), situations in which Lucy needed help were described and people who were important
to Lucy were mapped, i.e. people who play certain roles in her life, who know her life and who can help
in some ways. This process of mapping was followed by the first planning session. Sorting the
information made it possible to prepare a planning session which Lucy´s mum had decided to convene.
Planning Session
The goal of the session was to have a discussion with people who were close to Lucy about her options
for the future. The session took place in the father´s office. The place was chosen by the parents and
Lucy herself because she felt safe there. There was a place for her where she could take a rest or have
something to eat, if needed. The meeting was planned for three hours and the family invited everybody
who recently had worked intensely with Lucy – personal assistants, singing teacher, art therapy lecturer,
and psychologist. Also Lucy´s eldest sister and parents were present.
Attendees one by one, from their perspectives, articulated things which were important now, what
would be in the future, and what needs to be done so that it can happen and can continue. Essential
Lifestyle Planning method was used for the first major planning session. The session was organised in a
following way: large sheets of paper were attached to the wall and people were writing down important
moments from Lucy´s life, who attended the session and why, what we like about Lucy, what is
important for/to Lucy now and in the future, what kind of support she needs. Then we altogether
identified what works in Lucy´s life and what, on the contrary, does not work. Things that did not work
were prioritised and a plan was developed what to do to ensure positive shift in Lucy´s life. Tasks were
set including the deadlines for their fulfilment and names of people who would be in charge.
Later Lucy´s mum described the planning session as a major milestone for Lucy and for the family. "For
the first time in her life Lucy heard people using the polite form of address when speaking with her. She
managed to name things which are important to her, what she needs now and what she will need in the
future! She appreciated greatly the encounter of people surrounding her. She listened to what people
were saying: what they admire about her, what they appreciate, and what they like about her. She
perceived very strongly the presence of people who gathered because of her".
It became evident that sometimes solutions can be surprisingly simple with minimal costs. By identifying
and addressing current needs and goals a number of issues were resolved right on the spot. E.g., the
family had no idea how to get a computer for Lucy. When the subject was mentioned at the session, it
was not an issue any more: "we have unused computers at school, we can supply one". Another example
was how to organise Lucy´s assistance during holidays: one of the assistants, a student, who planned to
spend the holidays at her parents´ place, decided to offer one week of assistance.
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The session resulted in a first vision of Lucy´s future, and a plan of steps leading to its realisation. It
brought about a number of activities:
Learning programs were arranged for Lucy, favourite games and DVDs were provided to her, and places
outside home to carry out current and new activities were found.
Contacts were established with volunteers and assistants who helped Lucy engage in newly prepared
activities – fine arts, playing music, triad and English language. New activities were introduced and
developed: dance and drama, learning Polish, employment training, attending "Alternative Studio 2"
named "present giving".
Setting up a blog www.svetlucie.wordpress.com was an absolutely key moment. It documents Lucy´s
"painting" in the course of time, exhibitions, openings and events that are being prepared. By the time
the next major planning session was taking place 8 exhibitions had been organised (out of which 3 were
collective ones). Lucy participated in contests and in the international internet exhibition of authors with
autism. She donated two paintings to a charity auction organised in favour of the association which had
been helping her for many years. Some of her paintings were sold at the auction of GAUTE real estate
agency who has become Lucy´s patron. Some paintings were bought by individuals or organisations.
Funds raised by such auctions enable Lucy to continue her "fine arts activities".
New activities started in relation to the shooting of a time-lapse documentary "Up in the sky!". Lucy
attended its public premiere in October 2013.
All these events helped Lucy reinforce her ties and relations in the community, to realize what were her
strengths and abilities, and to find motivation for further activities. They have had a positive impact on
her overall wellbeing. Thanks to all this, Lucy perfectly managed her attendance at the greatest family
event so far - the wedding of her sister.
Communication chart
It was decided to develop a communication chart for Lucy. There was an important reason for making
the chart: people who provided support to Lucy often did not understand her behaviour. Lucy´s verbal
communication is excellent; she has no problem with difficult foreign words. This ability of hers often
confuses other people who automatically suppose that Lucy knows very well what she is saying and why.
However, it is not true. We know what she is saying but we do not understand what she really means.
This often results in an absolute misunderstanding. We have been training functional communication
ever since. In fact, she speaks continuously and when she is not speaking, she sings.
The goal of the meeting was to understand better Lucy´s behaviour in various situations. Elimination of
some kinds of existing Lucy´s behaviour was not a primary ambition. We wanted to understand her
behaviour and to figure out how people around her should behave in given situations to create the best
possible conditions for Lucy´s wellbeing.
Communication chart was being developed on a large board. People put their heads together and
identified situations in which Lucy does not feel good or her behaviour is not transparent for persons
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surrounding her. We were writing down the description of Lucy´s behaviour – what we were seeing.
Then we tried to figure out when such behaviour occurs, what triggers it or which circumstances play a
role. We were thinking about what such behaviour can mean, how Lucy feels at such a moment and
whether she wants to tell us something. The last thing we wrote down was how we should react in such
situations so that Lucy feels comfortable. It was interesting how often different people interpreted the
same behaviour differently and how their reactions differed. The discussion helped us clarify many
things and they began to make sense. After agreeing on the meaning of a certain kind of behaviour the
working table was turned into a communication chart which helps comprehend Lucy´s behaviour in
various situations.
Communication chart:
Situation, circumstances:
Lucy is doing: Lucy experiences and tells us:
We, people around Lucy, do:
In the evening or at night, especially before full moon
Lucy is saying: „I will never sleep!“
Inner uneasiness signalling that she cannot fall asleep
We do not force L. to go to bed at usual time, we try to create calm and comfort, we are patient, we offer a calming tea, calming music, gradually let the lights go out, lower the voice an stop speaking....
Sudden noise, rustle, vibrations, unpleasant sounds in the vicinity (from neighbours in the house or from outside), e.g. chopping, tapping, squawking, creaking in the radio, …
She says, shouts: „Pull him out from the wall by his legs!“ „Put the furniture back and leave!“ „Get out!“
Lucy is disturbed, upset, she does not like the sounds she hears
If possible, we prevent the sounds. If possible, we and Lucy go to some else place. If it can´t be done, we drown them down by making a sound screen - radio, dishwasher, washing machine, ventilator, vacuum cleaner – switching them on separately, then, depending on the situation we can combine them.
Anytime Lucy asks: „When will I have my Prague peace?“
Lucy needs to be assured that she will see her lady doctor in Prague who helps Lucy tune up her body and mind
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Anytime Lucy asks: Can I take it from him? You know it, you´ve seen it, I don´t want to think about it, nor imagine it….
Lucy needs to know that there is somebody there whom she can speak to She starts a conversation
She is waiting for the answer No, just to borrow! Then she goes on: And then give it back to him! She begins and is waiting for us to finish. When we don´t react, she prompts…..
Anytime Lucy says quite vehemently: „I´ll swallow No.9!“ „I´ll swallow No.1!“ „Without eight hours!“ „It can´t be done without time!“
Lucy is uncomfortable, tension in her is growing
We answer: How would XY know when she/he should come to see you?
During an activity (most often when painting)
Lucy says strongly: „I do not leave the subject!“ „I do not retreat from the subject!“
Lucy tries to concentrate on the activity, mostly painting
We don´t do anything
We developed a dictionary of words that explains the meaning of some expressions Lucy uses:
Expression: Meaning:
Hedgehog Uncle Jirka (his hair is cut short so that he reminds of a hedgehog)
Ferdyš Uncle Jirka´s tom cat
I am OK I can work, paint, learn, I am fine
Don´t look at the back! Hair cutting at the hairdresser´s
Podivín (stranger) A place where something is wrong
Tombola / Tomboluňk (raffle) Šternberk – the town where grandma Marie used to live for several years
Communication chart and the dictionary are living materials, which are being completed and updated in
line with changes that occur in Lucy´s communication and behaviour.
The family has created a virtual space for Lucy where the above documents can be accessed by all people
who are in contact with Lucy. Each of them has access data to be able to share relevant information
about Lucy. They can learn there what Lucy is doing, what is her activity plan and places where she
would be during the next period.
Outcome
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Lucy´s preferences and needs were identified, as well as her goals and concerns shown by her family and
close people. Joint thinking helped direct Lucy´s life to where she feels well and where she can
contribute. Also Lucy began to better realize herself, her strengths and abilities. She strengthened her
position in the world and she began to better understand relations with people surrounding her.
Communication chart and the dictionary help people better understand Lucy´s mental processes. It is
important for her, as Lucy presupposes that people around her know exactly what she is thinking about.
That´s why she often convinces other people by saying " you know it, you´ve seen it."
The use of communication chart by all people who provide support and assistance to Lucy helps prevent
a number of unnecessary misunderstandings. It is very important not only for the assistants who
attended the session but also for all people who gradually come into Lucy´s life.
