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This is a story from Slovakia, Žilina, Agncy of supported services, Soňa Holúbková:

Dan is a man 40 years old, living in his small appartment. I met his mam 2 years ago, when she hospital . She told me about her dream – Dan will stay home even if she will not be able to take care of him. He never try cleening, shopping, cooking, financing, traveling,.....alone. Mother, father or Brother always took care. But now only mother and her last days in the hospital and her dream. I had two weeks to learn alll about her son and to prepare meeting with him and some few people. We created a circle of support and we shared the differnet areas of support. 

Family – finances

Friend of mum – mothers things

Agency – small finances, everyday support

Host family – food , hygiena and laudry

After few months when Dan was living in his appartment – Agency supported him to repear the flat and to find young family to support him. We observed, what Dani s able to do – shopping, visiting doctors, cleaning a room.

Beacuse of his personality and sometimes not polite behaviour – young family moved after 6 months of supporting him.

Now he is able to live alone with a small support of Agency – Money, food, hygiena, laundry. 

Family changed the attitude and they would like to see him in the institution. He don´t want it. We think he is able to live alone his own life style but he need to fight for his rights.

Sven lives in Northern Germany. He is developing a profile for work.

 


He has identified some key areas which are important to him, but these can now be developed into specific statements, for example what does he mean by harmony. Is this the environment, or people getting along well together or what? The detail really helps to understand him better. Also when he says ‘be humorous with me when supporting him’ knowing when how and why, will give much better information to know how to support him really well.

APEMH is a national organisation supporting people with intellectual disabilities in Luxembourg. APEMH’s services are incorporating day care and activity centres, sheltered workshops and living homes where 6-10 people may live.

Marie and John are a retired couple who both have legal guardians and therefor, according to legislation in Luxembourg, are not able to take all decisions about their lives. For many years they had talked about wanting to marry, but nobody really listened to them or considered it to be possible. However, following the Sensing Workshop as part of the NPI programme, APEMH were exploring, through their discussions in team meetings how they needed to change as an organisation to be more person centred. In one of these discussions someone remembered this couple and their long time wish. It was something which had been there all along but only now they really did hear it.

To find out more, please click here.

Hallo!
I am Kevin.

I am 33 years old and I live in Oldenburg in Schleswig Holstein in the north of Germany near the Baltic Sea.
My parents live on Fehmarn, a big island nearby that is connected with a huge bridge to the mainland. I visit them often on the weekends. 

I live since 8 years in a group home Meyerhoffstraße. I have my own room and share with Volker kitchen and bathroom.
We also go shopping for ourselves.
I work in a sheltered workshop in Heiligenhafen. I take the public bus by myself to get there.

Jan was living with his family in Slovakia, he is the oldest of four brothers. He went to a day  care centre. When he was 33 he decided to move to sheltered living and asked our organisation to support him. We organized a meeting with his mother and she agreed to support him in sheltered living because she did not believe he could be independent.
He learned how to take care of his hygiene, flat, cleaning, washing the clothes etc. . He found a new job, his social life became rich, and he had a lot of hobbies.

Leben mit Behinderung – The Organisation


Leben mit Behinderung Hamburg (LmBH) was founded by Mr. Kurt Juster in 1956. Since then the organisation has been developed to a large service provider to assist and support people with disabilities and their families in the Hamburg region. LmBH amongst other supports about 900 adults in their living accommodation and their daily life. About 300 people go to 8 sheltered workshops and 500 families having children with disabilities are supported by various family assistance programs. The Parents’ Association (Elternverein) with its 1550 members is an important partner in Hamburg’s social politics. Leben mit Behinderung Hamburg is capable to develop forward-looking projects and offers in various areas.

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What was the situation?

Joe is a 31-year-old young man who lived by his 3 years in an institution. Since childhood, he liked order, therefore, very quickly learned to clen everything around them. Gradually learned more and more things: cook, wash, etc. and he did very quickly. When he was 20 years old, director of the institute helped him to start his business of cleaning. He cleaned the offices at the institute, the service station in the village, public dining in the city, various small companies and people at home - cleaned carpets, seats, washed and vacuumed the cars. He has learned to manage their money, and since 2000 lived alone in a small house, near the first institutional building. After several years he rented an apartment in the little town, 2 km from the institution. Still, he was the client of the institution and did not want to change it.

FEAPS was the Spanish partner organization that participated initially in the New Paths to Inclusion Network project, now the organization is called Plena Inclusión España.

Plena Inclusión España is an organization providing services to more than 135.000 people with intellectual or developmental disabilities throughout Spain.

Plena Inclusión España was one of the new members of the project and received the PCP training during 2013 and 2015.

FEAPS has changed recently its name being called Plena Inclusión España from 2nd of October 2015. This change is the result of a consultation and reflection process where its members (including people with intellectual and developmental disabilities) agreed that they no longer wanted to have the word “Subnormal” in the name of the organization representing them.

The consultation process above mentioned also approved that people with intellectual disabilities could be members of the Board and decision making structures of the organization. This was approved because one person with intellectual disabilities stood up in front of more than 400 members of FEAPS and said, in the middle of a massive discussion, that he would be pleased to be involved in decision making structures.

Those are two examples of how having reflection spaces open to a variety of actors might provoke great changes.

Sabine is from Austria, she is 24 years old and lives with her parents and brothers in a house in the city. She works at a sheltered workshop and has a boyfriend. She is not very happy with the situation at home; she has her own room, but is not able to lock her door. Her parents often talk loudly about her and Sabine´s opinion is not important to her family.

The story of Petr is begins in an institution where he was put at his age of 12. And he had spent in institutions 18 years afterwards. This fact plays a key role in his further life. When we met him, he had a civil guardian and had lived in hostel, without any support: no social work, no network of people helping him, only one good friend a former social worker of his.

He was put in a position of a „small child“ although being 30 years old. He did not have any legal capacity and could not decide anything concerning his common life or his finance. He did not know anything about self-advocacy. Nobody has tought him this skill. It was not needed and wanted in institutions where he had lived. The guardian did all his payments and administration without him even he knowing when. He did not know how much his rent costs, how much he has on his account (account at the City hall, he did not have of his own) – the guardian thought it was not necessary for him to know such an information. He could manage only small pocket money 4EU (100 CZK) in a week, the rest of his week (18 EU = 500 CZK) money he regularly every Monday got he had to document with receipts.

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In November 2010 I had my first circle of support meeting. Very competent people came to support me on this day.

Nikolaus Mann was the facilitator. We worked with 2 tools: MAP and PATH.

There were two topics that I wanted to change in my life: My living situation and to start an independent self-advocacy group in Vienna.

For the housing situation I wanted to search a new organisation that will provide better support for me. I had some troubles with the old organisation. I decided that the self-advocacy topic is more urgent to plan it because we had an opportunity to get some funding from “Wiener Gesundheitsförderung”. 

“What we can't accomplish ourselves / We can achieve when we're together …”. This song by Xavier Naidoo rings in me when I think of the history of our „Person-centred planning” network in South-Tyrol.”

It started about eight years ago.

At that time we were only few people.

We were enthusiastic about the person-centred methods and ideas.
We somehow felt that a planning for the future was a good way and possibility for people - to realize their personal lives, - to be aware of their personal dreams and wishes and - to organize their lives in this direction.

People with learning disabilities do need services in their lives, but somehow this offer of services has developed in such a way that the services are in the centre and not the users of these services.

Since we have been dealing with the person-centred methods, it has been clear to us that a personal planning for the future can be a good chance to correct this so that people are again able to take matters in their own hands.

An assistant, who supports John in his work in the Human Resources department of a large company, raised an issue with her team to which she did not know how to respond or how to provide support for John.

John had run to work because he was late. He had taken off his jacket, but because he still felt hot, John had also taken off his shirt and T-shirt, so that the he was stripped to the waist. He works in the open spaced office and the company has a dress code for men of shirts and trousers. Only on Fridays are they allowed to wear jeans. The situation was very difficult for his assistant. She talked to him about it not being appropriate to take your clothes off at work. John was annoyed because he was hot and that he didn’t want to be even hotter. It was hard to explain it to John about putting his shirt back on, Finally, he dressed but he was angry with his assistant.

APEMH is a national organisation supporting people with intellectual disabilities in Luxembourg. APEMH’s services are incorporating day care and activity centres, sheltered workshops and living homes where 6-10 people may live.

APEMH is partner in the New Paths to InclUsion Network programme working on organisational changes in order to adopt the guiding principles of person centred thinking and inclusion. The management team of the accommodation services therefor took part in a Sensing Workshop [Theory U – Otto Scharmer] in December 2013 to deepen the understanding of where we are now as an organisation providing services for people with disabilities and to think about how we could become a more person centred organisation. The workshop created some disruption within the team; it raised awareness that there was a conflict in the vision and direction of the service. 

Tomas and the Christmas Party

Tomas in the Czech Republic and his co-workers held a small and informal circle meeting with some of his colleagues to help him think about a particular problem 'How could he be supported to go to the works Christmas Party?' This is an important part of many people's social calendar and for those attending it demonstrates their position as valued workers colleagues and friends. Tomas was supported in his work by a job coach but it is unusual for a man with a learning disability in the Czech Republic to have employment, so Tomas was setting an important example around inclusion. However his colleagues became aware that this inclusion was only partly successful. The circle meeting and the relationship map they used within the meeting enabled them to address these issues.

To read Gianina's life story from living in an institution to her present life as an independent woman, please click here. 

 

 

 

Mrs. Hinterseer lives in Saalfelden in Austria in the “Villa”, a very charming old mansion in which she and four men live. She gets part time assistance for about 17 years now.

Mrs. Hinterseer had had a fall an injured her leg, she had to move to other accommodation because the ‘Villa’ where she lived on the 2nd floor was not accessible. Her team held a review to think about how they could support her in the best way.

Mrs. Hinterseer began preparing by making a book for the review, she chose music and a saying:
'Man loves to see only his bad luck and to ignore his good luck. Would he see right, so he would realize that both is bestowed upon him.' F. M. Dostojewski (translated by Karin).

I would like to tell a story, which I experienced as an underwriter in a planning. Mrs. Jung lives in an institution for people with physical disabilities. She is about to retire and would like to move to a home for the elderly, as she wants to live in a quiet place. The assistant in the institution knows the personal future planning and asks external persons in order to set up the planning. The moderator and I see Mrs. Jung several times to discuss, whether she wants to make a plan and what her strengths and requests are. Mrs. Jung tells us that she does no longer want to go to the residents‘ meetings and that her chores (e.g. distributing clean laundry etc.) are too hard for her now. She would like more breaks, rest, time for herself and time to read the bible. But the residents’ meetings and chores are mandatory for everybody. Mrs. Jung mentioned several times that all of this is too much for her, but nobody listened.

As Marcel Haack left school he was 16 years old and it was unclear what and where he could work. He was tested by the agency of labour and referred to a sheltered workshop. But he didn’t want to work there. He applied for a personal budget, so that he and his supporters could organise an individual professional training with a job coach in different companies. At first a couple of things went wrong, as he started his person centred planning process…

About a year ago we (several parents) took over a small farm. The couple that was running it before was too old to continue the work. As our children used to play on the farm during their spare time and wanted to continue doing this, we decided to set up an association and took over the farm. That made us into farmers over night, having to take care of goats, rabbits, ponies and chickens. After a lot of work (group barn for the rabbits; conversion of a construction trailer into a new chicken home etc.) we had some time again for new ideas. Somebody asked if a young man with disabilities could help with the work on our farm. As we were happy about any helping hand, he started with the late Saturday feeding and locking service. Now Jan comes every Saturday with his mother or father and helps on the farm. He works increasingly independent and is able to look after the animals, feed them and lock the barns.

Helen is 43 years old lady who has lived her entire life in institutions. She needs support in all daily routines, also she communicates mostly non-verbally and so if she is unhappy with something she can only do this through her behaviour which people may find challenging.
People who provide support for Helen have put together list of important to Helen and important for Helen and items were sorted into two groups: What is working in Helen‘s current life situation and what does not work?

For me as the Director of the Lukashaus it was a beautiful thing. I was pleased to get the project started.

It was not exactly new grounds for me and the Lukashaus. Already in 1994 I supported and implemented the idea of self-determination. The tools that helped me realize the project were the 1996 book by Marlise Pörtner, „Ernstnehmen – Zutrauen – Verstehen“ (respect – trust – understand), the German book „Vom Betreuer zum Begleiter“, (between care-giving and support) and „Selbstbestimmung“ (self-determination) by Willem Kleine Schaars.

With the project I could implement the new PZP instruments in many ways and learn a lot. These tools are easy to handle and can be well understood and used by people with disabilities, which was the ultimate goal: creating tools for the purpose of learning self-determination, self-responsibility and self-advocacy. This can and could be shown and implemented with the project. I am convinced that the further development will be successful. It makes sense to initiative other similar projects. Working in the area of the disabled means travelling on a rocky road and overcoming obstacles.
The meetings of the „track group“ gave me new impulses and fed the hope of change also in Switzerland. High mountains turn into small hills that can be overcome.

Anthony lives in a large institution, which is located in a small village about an hour's drive from Prague. He is 70 years. He has a mental illness that was the reason for his placement into institutional care. But Anthony does not want to live in an institution and therefore asked for help.

An independent broker helped arrange a planning meeting for Anthony at the institution. Anthony, his key manager and psychotherapist were participating. The independent broker facilitated the meeting. The result of the planning meeting is a profile on one page.

„New Paths to InclUsion Network“ Interkantonale Hochschule für Heilpädagogik Zürich,
University of Applied Sciences of Special Needs Education Zurich Switzerland, Judith Adler und Monika Wicki

1. Starting Situation

Personal futures planning was hardly known in Switzerland in 2013 and only a few places worked
with the aspects of this approach. The research and development project „The Future is Now!”- futures planning for adults with intellectual disability and their families - was carried out in Zurich at the University of Applied Sciences of Special Needs Education (HfH) between 2009 and 2015. The methods of personal futures planning were used in this project. About 130 families in Germanspeaking Switzerland took part in the informative meetings on the aspects of the new Adults Protection Act, which provides more self-determination for people with disabilities and, which came into effect in Switzerland in 2013. Afterwards about 40 families with their sons and daughters with disabilities participated in a series of 6 courses on futures planning.

Carl who lived with his father, wanted to plan his future with Michael. One day Carl’s father was involved in an accident. Since then his father had to stay in a rehab-clinic and Carl, has lived with grandparents.

Carl feels very uncomfortable living with his grandparents, because of their old-fashioned way of thinking. He is in love with Ann, and he wants to move in with her. Ann owns a house with a garden and lots of space for Carl and his stuff. Carl doesn´t know how to handle the move to a new place and out of his grandparent’s house, so he contacted his caretaker at work who had heard about person centred planning.

Božo was born in 1963 and most of his childhood he spent in the institutions in Zagreb and Zagreb's surroundings. Božo’s family lived in Markuševac, a settlement near Zagreb in humble conditions without running water.
Božo ended up in the institution when the Social Service estimated that his parents were not be able to raise him properly. This assessment of the Social Service has moved away parents, sister, neighbours and friends from his life and tried to replace them with institutions and psychiatric hospitals. From that moment everything what Božo does it looks like as an attempt to turn back the clock to the point when Social Service has estimated that growing up in an institution will be better for him than growing up in a family.

Life in the institution was the same as to thousands of others: without appropriate form of education, no contact with his members of family, no privacy and with often psychiatric confinements. Božo had strong need for freedom.

Whenever he had change he would sneak out the institution and went for a walk into town. However, this habit in the institutions costed him dearly. - We could only walk under the supervision and then we had to hold hands, speaks Božo today. Božo was refusing that and each time after refusal he ended up in psychiatric hospital. Božo’s constant struggle to get out of the institution became successful in 1998 when he came to API and now lives in the community.

Today Božo lives with Kata in a small apartment in the centre of Zagreb for 8 years. He is happy with his life because he has Kata, an apartment, a job and a salary. He says: I can buy myself what I need from my salary and this is also good.
Today Božo has a payed job in the community as:
Member of a mobile team of API
Co-educator in trainings of CAE Validus
Member of a team for the quality services assessment in the community

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Preparing the meeting

Henrik works in the organisation as facilitator. At their planning meeting Henrik brought dream-cards with him. Talking about the pictures and statements on the cards helped Henrik to get to know Monika’s dreams and lifestyle. When they had finished Henrik took a photograph of the cards to remember what Monika said. 

The Association for Promoting Inclusion (API) is a non-governmental organization established in October 1997 in Zagreb, Croatia. API’s activities are based on the philosophy of inclusion according to which persons with intellectual disabilities have the right to be equal and active members of the society.

Mission: To promote the development of a society in which people with intellectual disabilities have equal opportunities, their contributions are valued, and their human rights are respected.

Vision: A society which values diversity and discovers the unique contributions of all its members.

API is a member of INCLUSION EUROPE, INCLUSION INTERNATIONAL and the ECCL – European Coalition for Community Living

 

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Markus was a course participant of the training course in person centred approaches in Vienna and the multiplication training. He was studying and involved in research at Vienna University:

My story is about two circles of support meetings and my wish to change the university. Oh no, I should only talk about planning my wish to finish my academic studies.

A process of Working together for CHANGE within the BALANCE assisted accomodation area

The Workshop CHANGE - Working together for Change in BALANCE was  hosted on 24th of April 2014 in Vienna, at the WiFi, a common place of advanced training in the city. The issue was the support service for people living with dissabilities in BALANCE assisted accomodation places.

This Workshop has been prepared for half a year. Many people have taken part in this preparation. For instance 4 groups of staff workers and users of the accomodation places have analysed 75 Personal Review minutes. The Informations have been anonymised. The point was to find out: What are the meaningful things for the users lifes? What is not working well? What’s working? What should BALANCE change to deliver good support to the service users, who want to live their lifes in their way?

About 90 particapants got into a conversation about those questions – Inhabitants of BALANCE assisted accomodation places, BALANCE staff workers, families of the users, self-advocates, peer-councellers, procurators of users, politicians, representatives of the funding agency.

The working groups were facilitated by people, who are not serving BALANCE as a staff member. Thus the participants could share there thoughts and ideas on a level playing field. This way of working together, creating a special energy has been the biggest and most touching experience of the day for nearly all the participants.

That way we came into creating ideas into envisioning the future of our services. 5 very big paper circles – tanks of ideas – were filled.

Now there is just enough work for BALANCE, to look ahead and do the first steps together with the service users.

To find out more, click here.

Vojtech was in institutions from 1967. He came as a fifteen year old boy. He has decided to leave the group home and move into his own apartment at his 58 years. Vojtech was able to do that thanks to the project „Aiming for a good quality of life“, and with the help of his guardian and independent broker.

Some time ago I took part in an advanced training at Balance Hochheimgasse in Vienna and I heard about person centred planning. Angelika from a self-advocacy organisation in Vienna agreed to support me to start my very own future plan. I wrote some nice invitations, with a boat as a symbol for my journey to a better future, but unfortunately only two people, my sister and her husband, showed up at my first planning meeting, as the other people had no time or had already plans to go out drinking.

The association BALANCE - Living without Barriers - has been founded in 1987 by a parents group. The children of these parents, young people living with disabilities, were passing vocational trainings in a residential school in Vienna, because their families were living in the countryside near Vienna. Having passed the training no one of them wanted to go back to his or her village. They wouldn't have found a job there.

To find out more, please click here.