WEBVTT

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Participation in work

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What opportunities for participation do people with profound intellectual and multiple disabilities currently have?

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In many cases, they are unable to do so,

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perhaps even in most cases, frequently.

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If they can, it's by chance,

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because they are in the right place at the right time,

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in the right institution.

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They can certainly participate in some workshops

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for disabled people in the special labor market,

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but by no means in all of them.

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They can sometimes do this in day care centers.

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In very few day care centers,

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they can do this outside the special system.

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But this is very rare.

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That depends very much on chance,

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on the commitment of the specialists,

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on the specialists' ability

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recognizing strengths, recognizing resources, observing closely

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and, above all, on the courage of the professionals

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and perhaps also the institutions,

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to simply do so.

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But whether they can or not

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depends on chance.

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What can be understood by the term “work” for people with profound intellectual and multiple disabilities?

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I can think of two approaches.

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First, an anthropological approach,

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that the term work

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is considered independently of any economic system.

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Maria Hoda once said, in essence,

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that working is the innermost core of being alive,

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in other words, work as a fundamental human activity.

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That would be one approach.

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I also find another approach helpful,

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sociological approach,

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in which you don't use the term work,

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but instead say

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it is about participation in working life.

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Working life as an important

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social sphere in this society.

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There are many social fields.

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Some are important,

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some are not so important,

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if I can't participate in them.

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But work, working life, I believe,

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is the central social sphere.

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And then it's about participating in it.

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To do that, I don't necessarily have to

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be able to work in an economically viable sense.

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I can also participate in social systems

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even if I can't do everything perfectly.

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Nevertheless, I am allowed to participate.

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And I think that's why

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it helps a little to understand

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why people participate in work.

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They don't have to work,

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like everyone else,

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but they should be able to participate in this social system,

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in this social subsystem.

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That's what it's all about, I think.

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Why is work important for people with profound intellectual and multiple disabilities?

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Work is important for the same reasons

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as it is for all people.

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Work provides a time structure,
That is, work provides a structure for time,

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offers the opportunity to socialize,

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even with people

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I didn't choose to be with.

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Work offers the opportunity to

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come into contact with society

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and many other reasons.

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So basically, first of all,

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what applies to all people.

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Work also offers opportunities,

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or participation in working life offers opportunities,

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to gain experience

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that goes far beyond

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what we could do within our special institution.

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This example

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I can perhaps emphasize this,

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we have a young man here

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who is very interested in plastic wrap,

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this transparent film,

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which he loves to manipulate.

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And of course, here in the facility,

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in the relaxation room,

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attach this slide to the wall

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and introduce the man there

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and then he can manipulate it,

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then he has this sensory impression.

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But you can also do what we do,

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go to a flower shop,

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where a lot of this foil is produced

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and then he collects this foil

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and holds it firmly on his wheelchair table,

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can manipulate it

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and then even takes it to the container,

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where he then throws them in.

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He pulls himself up on this container,

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gets into the stretch.

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That's also something we have here in a

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special facility with a standing frame

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otherwise.

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And then he throws this plastic sheet into this

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container and deals with it,

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and gains social recognition as a result.

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The praise of the florists,

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is therefore visible in the world in a completely different way.

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We also notice this in many other examples.

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Together with our employees, we distribute a large number of flyers

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in our area for church congregations

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and other institutions.

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And people perceive it very differently

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than when you're just going for a walk.

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Although at first glance it looks similar

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and has the same effects.

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But whether it's the caregivers ,

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who are out walking with their disabled people

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or whether it's the people

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who put the parish newsletter in our mailbox,

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that's a different perception.

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So people are no longer invisible in working life through participation

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no longer invisible in working life.

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Monika Seifert once said that

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that this is an invisible group of people

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and that this makes them visible.

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What approaches to participation in work already exist for people with profound intellectual and multiple disabilities?

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There are a few institutions

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that simply do this.

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And they also differ

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very much according to the general conditions.

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There are large institutions,

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we call complex facilities.

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I have one facility in mind,

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where about 1,000 people with disabilities live,

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in a village where 200 other people live.

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There isn't much in the way of working life there,

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where I can go.

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They have to do that within their institution.

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You bring the secretary a pretzel.

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And that's participating in working life.

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If, as in Bremen,

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I live in a big city,

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I have other options.

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That varies.

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What these approaches have in common, I think,

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is that you just do it,

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that you just try it out.

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I think it's important to have a basic understanding,

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a basic attitude, namely the attitude of participation

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and not care or participation and not support.

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I think it is also important for us

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to take a person-centered approach,

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the person-centered concept according to Pörtner,

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which helps us a lot.

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But approaches where you can say,

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I'll look in the manual to see how it works,

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I don't think that works.

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You just have to develop the attitude

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and then you have to see

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what is possible in my environment, within my means.

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The idea of social space orientation is helpful,

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which is slowly, at least

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the concept is gradually finding its way into disability services.

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In other areas of social work

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 the realization has been around for a little longer

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that

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that it is not particularly helpful

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to just tinker with the client,

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but to look at the environment.

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That's still a bit difficult for us in disability care

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because we are very focused on the needs of the individual

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because we are very focused on the needs

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and the support needs

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of people with disabilities.

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But that is certainly an attitude

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that must slowly find its way

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and which also brings about

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a change in attitude among professionals.

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You take the position that participation can only take place outside of special institutions. What does that mean?

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Inclusion is a joint activity

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on a common subject involving disabled

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and non-disabled people

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in the normal social spheres

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and not in special systems.

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That is inclusion.

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And that has a huge impact on people.

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You can see very clearly

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that this also brings about changes

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in people with disabilities.

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Here's an example of that.

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We have a bike shop in the area here,

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where we tear up large cardboard boxes

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so that they fit into containers.

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They are delivered to us

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before we arrive or even when we are there,

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they are prepared for us by the bicycle mechanics.

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They will then come,

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greet us and bring us these containers.

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And then we do that.

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And when we're done,

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then it often happens

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that these bicycle mechanics or one of them

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have another cup of coffee with the employees

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who work there.

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And this is

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very much enjoyed and appreciated by everyone present.

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This is quite different from

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the cup of coffee in the break room,

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that we make. Maybe drink,

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even though it might be the same coffee.

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So that's inclusion,

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acting together and contact

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in normal social settings

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and not in special facilities.

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Can participation in work in the social environment be a solution for all people with profound intellectual and multiple disabilities?

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Well, when it comes to solutions for everyone

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I'm always a little cautious,

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because I don't think they can actually

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exist.

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But I can't really think of any alternatives,

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I have to admit.

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So, an alternative might be

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to create a new offer,

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a redesign.

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I find that very difficult to imagine at the moment,

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because there is no legal framework

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and the foundations for it.

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Participation in working life

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for people with high support needs,

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such a new foundation.

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To establish institutions

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that have this task,

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because that's not really possible.

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I believe that the way forward is really

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that facilities such as

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day care centers or day care facilities

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need to change and evolve

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from what they have done so far,

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in order to justify and substantiate their existence in the long term

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justify and substantiate their existence in the long term.

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Well, I don't know of any alternative.

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If there were, that would be great.

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What can professionals do to support people with profound intellectual and multiple disabilities in participating in work?

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They just have to do it.

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I think that's the most important thing.

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They have to take the risk.

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You're not risking anything,

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but you just have to do it,

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dare to take the step.

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See where the resources are.

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You have to recognize the resources

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among people with disabilities, of course,

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but also the resources in the social space,

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in their environment.

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They often have to mediate.

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We often experience this.
We experience this frequently.

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We have to mediate, we have to translate.

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The point is also

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that you have to get used to

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working in public.

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We're not used to that.

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In our facilities,

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no one sees what I'm doing.

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My colleagues see it,

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but they know what's going on.

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But when I work outside,

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everyone can see what I'm doing.

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That's not easy for some people.

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You have to be careful

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that you don't let yourself be

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sucked into a performance mindset.

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It's not about

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getting as much done as possible,

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but about

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organizing participation.

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It's easy to get to the point

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where, as an employee, you just do it quickly

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because it takes far too long.

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But that's not the point.

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I have to make more of an effort

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establishing contact between disabled

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and non-disabled people.

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Employees must get used to

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thinking beyond the facility.

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For example, our employees have the task of

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being familiar with our environment.

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That's part of their job,

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that they know what's in the area,

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where the nearest bakery is and who works there.

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And to make contacts, look for opportunities,

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where is the niche,

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where I can work or where I can get involved.

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Our partners out there can usually do that.

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We recently received a request

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from a caretaker at a swimming pool,

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a large outdoor pool,

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who heard about us and said

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he has a large parking lot here,

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which needs to be kept clean.

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And we have to say, sorry,

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that's too big a job for us,

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we can't do it.

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But then we got in touch with him

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and our employees will then have to see

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if there's a small corner

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where we can do something.

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That little niche that's there,

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people don't see it,

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they think in terms of large processes.

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But we have to

00:12:39.262 --> 00:12:41.102
know these small procedures and processes,

00:12:41.102 --> 00:12:43.182
think our way into the operational processes,

00:12:43.182 --> 00:12:44.782
to see where the niche is,

00:12:44.782 --> 00:12:46.042
where we can get involved.

00:12:46.042 --> 00:12:48.102
That's a lot,

00:12:48.102 --> 00:12:49.222
but you can get into it.

00:12:49.222 --> 00:12:50.842
I think the important thing is

00:12:50.842 --> 00:12:53.002
to just start

00:12:53.890 --> 00:12:55.270
and leave the facility.

00:12:55.270 --> 00:13:03.862
Participation in work for people with profound intellectual and multiple disabilities – how will this area develop in the future?

00:13:03.874 --> 00:13:06.254
I believe that the topic of work is already finding its way more

00:13:06.254 --> 00:13:08.674
into people's minds

00:13:08.674 --> 00:13:11.074
and in the concepts of such institutions.

00:13:11.074 --> 00:13:12.754
This is by no means the case everywhere.

00:13:12.754 --> 00:13:15.014
But I do believe that it is more

00:13:15.014 --> 00:13:17.754
than it was at the time of the SITAS study, for example,

00:13:17.754 --> 00:13:19.534
that it has increased.

00:13:19.534 --> 00:13:21.494
I think it's important now

00:13:21.494 --> 00:13:22.614
to take the next step,

00:13:22.614 --> 00:13:24.174
to leave the institution

00:13:24.174 --> 00:13:25.894
and enter the real world of work.

00:13:26.562 --> 00:13:28.382
The legal basis for this

00:13:28.382 --> 00:13:29.902
will not change anytime soon.

00:13:29.902 --> 00:13:31.002
I have little hope in that regard.

00:13:31.002 --> 00:13:32.582
The Federal Participation Act

00:13:32.582 --> 00:13:34.942
is what it is, and that will remain largely unchanged.

00:13:34.942 --> 00:13:38.122
They have elegantly sidestepped this whole area,

00:13:38.122 --> 00:13:39.682
without changing anything.

00:13:39.682 --> 00:13:40.882
But I think

00:13:40.882 --> 00:13:42.922
that there is a lot of interest in this topic.

00:13:42.922 --> 00:13:46.562
There will be more facilities

00:13:46.562 --> 00:13:47.622
that show that it works.

00:13:48.322 --> 00:13:49.042
And I hope

00:13:49.042 --> 00:13:50.842
that when there are no longer just 10 in Germany,

00:13:50.842 --> 00:13:51.882
but perhaps 200,

00:13:51.882 --> 00:13:54.142
we will then have a different discussion.

00:13:54.142 --> 00:13:55.742
In the ministries, a different one

00:13:55.742 --> 00:13:57.682
and also a different one in the associations.

00:13:57.682 --> 00:14:02.022
The associations adopt fancy papers,

00:14:02.022 --> 00:14:04.862
but I don't think that gets through.

00:14:04.862 --> 00:14:05.982
Instead, I think it's important

00:14:05.982 --> 00:14:09.022
that something changes in the institutions.

00:14:09.022 --> 00:14:12.022
I do believe it's possible.

00:14:12.022 --> 00:14:14.202
Many such institutions

00:14:14.202 --> 00:14:16.042
such as daycare centers or support groups are realizing

00:14:16.042 --> 00:14:19.238
that their way of running such a facility

00:14:19.238 --> 00:14:21.658
is somehow no longer quite right,

00:14:21.658 --> 00:14:25.038
that it no longer really fits,

00:14:25.038 --> 00:14:25.878
but they don't know

00:14:25.878 --> 00:14:26.998
how they can change that,

00:14:26.998 --> 00:14:28.538
how to get out of it.

00:14:28.538 --> 00:14:32.538
There is certainly still a lot of training,

00:14:32.538 --> 00:14:34.718
support, and discussion needed,

00:14:34.718 --> 00:14:35.378
but I believe

00:14:35.378 --> 00:14:36.358
that this is the path

00:14:36.358 --> 00:14:37.478
we have to go.