An example of successful de-institutionalisation
Our “Life after violence” report (here the easy-to-read version) shows the different forms in which women with intellectual disabilities are subjected to violence in institutions. The best way to address this is giving them the opportunity to live a life in the community. How does it look like when someone is included successfully in the community? Julia (we changed her name in this text) is an example of someone who has left the institution with great support. She is now living a far more inclusive life, thanks to her parents and circle of support.
Below is Julia’s parent’s story of her transition from institutional life into the community. Julia was always seen as too disabled to be involved in the community, or even to be involved within the houses she lived in when other inhabitants were ‘more able’ than she was. She was destined to a life of drowsing and children’s songs. When she became too bored with life she would slump in her chair and sleep most of the time. Her parents saw this as a sign that Julia was really unhappy where she was: And they decided to move her out of the institution, into her own home.
“When Julia moved into her own home, we first looked at which support workers she wanted to take with her. There were 5 people she wanted to ask to make this step with her, to this new place, working only with Julia. The people who came were only working with Julia. The aim was to create a good life together with Julia.
For support workers this was a very different situation. Suddenly they had no direct colleagues. In the beginning we kept a close eye on how everyone was doing. It is important to talk to everyone to make sure everyone is happy. Out of the 5 support workers who came, 4 stayed on.
Julia is always involved with the interviews of potential new staff. There is also always someone present whom she trusts from her circle and another team member. Nobody is given the job to support Julia after the first interview. There is always time to reflect and think about the conversation. Then later Julia and the others decide. We have met many people this way. We always ask whether someone is good at making contact with other people. Furthermore it is important that someone can listen to what Julia says without using words. And someone has to be interested in exploring the community together with Julia.
All of us have to think about what a good life for Julia means.
All of us have to think about what a good life for Julia means. And what responsibilities choices bring with them. If you live alone, not in an institution, you have to do the housework. Julia as well as any other person living alone. If you decide to have a dog you have to take it for walks. Julia as well. A good life is not the same as just having fun all the time.
It is important that support workers use the people they know through their own lives. You become part of each others’ lives, rather than keeping everything separate. It is important to find out which support worker has which interests and talents, and to use these.
It was important to start small. We made sure we did not try everything at the same time, and we did not make the week too full to start with. Just try one small thing at a time. For instance, start swimming in the community pool instead of the institutional pool. You are guaranteed to meet some people from your local community that way.
“Julia has a valuable contribution to make”
It is also good to invite your closest neighbours when you move in. You do not have to make this complicated, just something simple will do. This will quickly get you a lot of contacts in your immediate surroundings.
Julia indicated she wanted to work at the garden center. Time was needed for them to want her, too. We had to start very slowly and carefully. Starting with one hour instead of a whole week. Nowadays, the people at the center would struggle to get through Julia’s holidays when she and her support worker do not turn up. Julia has a valuable contribution to make. That is what we always aim for.
In the 6 years Julia has lived alone, she has slowly increased how active her week is. She has come to know many people in her neighbourhood and now has an important role in connecting neighbours to each other. The local development officer regularly asks for her help in distributing leaflets about upcoming events. Also, Julia and her support worker regularly babysit. This started with a nephew of one of the support workers. Julia loved having kids around. Now various parents in the neighbourhood ask Julia to babysit their children too.
To get to know people Julia organises a dinner every Wednesday. She invites someone she knows and asks them to bring someone she doesn’t know. Julia prepares the meal together with her support worker.
When Julia had just moved out of the institution a lot depended on her parents. They encouraged support workers to contact each other when something was wrong, instead of phoning them. They also organised training sessions, mainly to ‘unlearn’ behaviour that support workers had learnt in college or institutional settings. Once a year Julia, her parents, her circle of support and her support workers have dinner together. They talk about what a good life is and what this means for Julia. They do not have any team meetings. To inform everyone of what is happening Julia keeps a diary, which she writes with the help of her support workers. Everyday 1 A4 sheet of paper is filled with information that helps to keep Julia healthy and safe. Once a month they write a summary of what happened that month. This should never be more than 1 A4 piece of paper, because why would anyone want to read more when they could be working with Julia.
As time progressed the support workers and Julia became more independent. Julia’s mother explains: ‘We notice that we can be just parents now.’”
From Julia we can learn that nobody is “too disabled to be involved in the community”. Staff working in institutions who get to know Julia claim their ‘clients’ could not do what she does precisely because “she is less disabled than the people we work with.” But this is not true, Julia is not “less disabled”. She seemed like a totally different person when she was living in the institutions, because of the life she was forced to lead there. When she moved out, she had a network of people around who really cared and worked for a good life, together with her. When people meet Julia now, they see someone who is awake and intensely enjoying life.
Click on a word which is in bold to read what it means.
“Julia’s story: she left the institution
and now she has a good life”
If you want to read it,
click here: https://bit.ly/2BmNlRx
Many women with intellectual disabilities
experience violence in institutions.
The best way to deal with what happened to them
is to live in the community.
Julia is a woman who left the institution.
Since she moved out
she has a better life.
Now she feels included. Her parents
and other people
Her parents told us her story.
In the institution,
Julia didn’t have the chance
to do much during the day.
So she got very bored.
She used to sleep a lot.
Her parents saw that
she was not happy
in the institution.
Her parents wanted Julia to have a good life.
So they took her back home.
Julia now has different support persons
working for her.
Sometimes Julia needs a new support person.
Then different people come for an interview.
The interview is done by Julia, her parents,
one of Julia’s friends and another support worker.
After the interview,
everyone sits together.
They all decide if the person
is right for Julia or not.
There are some things that are important for people
who want to become Julia’s support worker:
- The support worker should be good at
making contact with people.
- Julia does not speak with words.
But she speaks in other ways.
For example, with her body.
The support worker should be able to understand Julia.
- The support worker should take Julia outside
to the community.
It is important that Julia has a good life.
If Julia wants a good life
she has to do many things.
For example, cleaning her house
or taking her dog for a walk every day.
Having a good life doesn’t mean
just having fun.
It also means doing some work.
Another important thing
is to get to know the support workers.
Julia and the support workers
become part of each other’s lives.
At the beginning, Julia was trying just
one new thing at a time.
Her parents didn’t want her
to be stressed.
Julia tried to swim in the pool of the community
instead of the pool of the institution.
She met new people from the community
in the swimming pool.
It’s good to invite your new neighbours
when you move into a new home.
They can become your new friends
who live close to you.
Julia made it clear
that she wanted to work
at the garden centre.
Julia started to work
for one hour a week.
Now, Julia works much more
at the garden centre.
When she is on holidays
the staff misses her help.
Julia showed that she can work.
Her work is needed.
Her parents are very happy for that.
Julia has lived alone
for quite some time now.
she does more things.
She now knows a lot of people
who live close to her.
Her place is a meeting point
for her neighbours.
Julia also helps the community
in giving out leaflets about events.
Julia and her support worker
Julia loves children.
Many neighbours ask Julia
to babysit their kids.
Julia makes a dinner every Wednesday.
Julia makes the dinner
with the help of her support worker.
Julia invites people she knows.
She tells them to bring along other people.
In this way she can meet new people.
When Julia just moved out from the institution
she had some support workers.
When there was a problem,
the support workers always called Julia’s parents.
But Julia’s parents didn’t want that.
So they asked the support workers
to call each other when they had a problem.
Julia’s parents were teaching the support workers
how to behave with Julia.
Once a year Julia has dinner
with her parents, her support workers
and her friends.
They talk about how Julia can have a good life.
Julia writes a diary everyday
with the help of her support workers.
Then everybody can read about
what is going on in her life.
Julia and her support workers also write a summary
about the most important things
Julia is becoming more independent
as times goes by.
The support workers support Julia now.
So her parents do not need to support Julia
so much anymore.
Now they can just be parents
like other parents.
Julia’s story teaches us that
everybody can live in the community.
It does not matter which disability they have.
You just need the right support.
Now everybody can see
that Julia is really enjoying her life.
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
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