| 1 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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Person centred planning in supported decision making
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Person centred planning in supported decision-making
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
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.