People with complex support needs “have too often been left behind”

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. Being visible and vocal on issues directly affecting millions of people requires your...

People with complex support needs ``have too often been left behind``

A discussion at the task force meeting

Click here for the easy-to-read version

The “Task force on people with complex support needs” met for the first time in Brussels last week. The group discussed good practices on how to empower people with complex support needs to make their own choices. Participants had the opportunity to gain insights into different projects and approaches, and learn about Inclusion Europe’s work and strategy.

Members of the task force (representing different Inclusion Europe member organisations, as well as external experts), presented their projects on this subject:

Berta González from Plena inclusión (Spain) highlighted the campaign “Todos somos Todos” (“Everyone means everyone”), which raised awareness of the discrimination of people with complex support needs and their families.

APEMH‘s Michèle Racke (Luxembourg) shared some projects and events the organisation has organised in recent years: For example the art exhibition “Pictures for Life” on people with intellectual disabilities, a visit to youth and senior citizens’ centres to foster the exchange between persons with and without disabilities, and collaborations with migrants or hip-hop articsts.

Sport: an ideal way to foster the inclusion of people with complex support needs

Tanja Princes from Inclusion Europe’s member Zveza Sožitje talked about the Special Olympics in Slovenia. She stressed the fact that sport that does not require verbal communication and is a good opportunity to foster the inclusion of people with complex support needs.

Ann Fergusson, representing the UK PMLD Network, shared her experiences in developing national standards for services for people with multiple and profound disabilities in the UK. She is actively involved in the journal PMLK link, which deals with issues surrounding people with complex support needs, and worked with Mencap on related projects such as “Raise our Sights“.

Bernhard Schmid, secretary-general of Lebenshilfe Vienna (Austria) explained which steps the organisation has taken to better include people with complex support needs at conferences, events and within the self-advocacy network. For example, Lebenshilfe Vienna organised a conference in 2018 that involved self-advocates with complex support needs. They also developed guidelines for the participation of people with complex support needs in advocacy work.

LEV‘s director Torben Wind raised concerns about the “re-institutionalisation” of people with complex support needs in Denmark. New institutions are built and people with complex support needs are put in these institutions. This is being presented as “improvement” – just because the buildings are new. LEV is fighting this development.

Finally, at a call with the Swedish JAG civil rights movement, their communications manager Kerstin Sellin pointed out how they had set up the organisation which is “led and governed” by people with complex support needs (more information in the video).

Following this first meeting, the task force will exchange experiences on how to improve the participation of people with complex support needs in the networks of the respective organisations, at work and at events.

Participants agreed that the movement for people with intellectual disabilities needs to become more inclusive for people with complex support needs: “They have too often been left behind in the community, but also in our organisations – and we need to change that.”


Easy-to-read version

Click on a word which is in bold to read what it means.

 

“A group meets in Brussels to support
people with complex support needs
to be part of their organisations”

A group who works to support
people with complex support needs
met last week in Brussels.
Brussels is a city in Belgium.

The participants in the group were

  • people from Inclusion Europe
    from different countries in Europe and
  • people who know a lot about
    people with complex support needs.

They talked about the needs
of people with complex support needs
and the problems they have.

At the end of the meeting,
the group talked about ways
to support people with complex support needs
in making their own choices.

The members of the group had a look at many projects.
Also, they learned about the work
that Inclusion Europe does.

Here’s a list of the projects presented by the members of the group:

  • Berta González is from Plena Inclusion,
    a Spanish organisation.

    Their project is about discrimination against
    people with complex support needs and their families.
    a
  • Michèle Racke is from APEMH,apemh
    an organisation in Luxembourg.
    a
    Their projects are about art,
    building relationships between people with and without disabilities,
    working with migrants and artists.
    a
  • Tanja Princes is from Zveza Sožitje,
    an organisation from Slovenia.
    a
    She talked about the Special OlympicsZveza Sožitje
    for people with complex support needs.
    a
    Special Olympics are sport competitions
    where the participants are people with disabilities.
    a
    When you do sport you don’t need to talk.
    So also people with complex support needs
    can feel part of the team, even if they cannot talk.
    a
  • Ann Ferguson is from the PMLD Network,
    an organisation from the United Kingdom.
    a
    They work to have common rules for services
    used by people with complex support needs.
    a
  • Bernhard Schmid is from Lebenshilfe Vienna,
    an organisation from Austria.
    a
    They work to include people with complex support needs
    in conferences, events and in self-advocacy work.
    a
  • Torben Wind is from LEV,
    an organisation in Denmark.
    a
    He talked about people with complex support needs in Denmark
    who are put back into institutions.
    This is not good.
    LEV is fighting against this.
    a
  • Kerstin Sellin is from the Jag civil rights movement in Sweden.
    a
    She talked about how their organisation is run
    by people with complex support needs.Jag civil rights movement
    They’re very proud of this.

 

After this first meeting,
the members of the group agreed
to talk again in the future about their experiences.

They will talk again about how to include
people with complex support needs
in their organisations.

People with complex support needs often have
difficulties in speaking and sharing their thoughts.

Because of this,
even in organisations for people with intellectual disabilities
their needs are sometimes not met.

All the members of the group want to make sure that
this will not happen again in the future.

People with complex support needs should be included
in organisations of people with intellectual disabilities
and in the community.[:]

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.

Being visible and vocal on issues directly affecting millions of people requires your support. 

Become Inclusion Europe supporter and help us keep doing our work.

 

 

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