Include 1-2/2013

Inclusion Europe

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Content

1-2/2013

The European conference of self-advocates: Listen to what we have to say! ..........................................................................................................1

DISCIT: Towards active citizenship for Europeans with disabilities .....................................................................................................12

Getting older: Ageing and Intellectual Disability .............................................................................................4

A significant step towards the right to make decisions for people with intellectual disabilities ............................15

Working together towards accessible information and lifelong learning for all ......................................................................................................................6

Not letting a serious crisis go to waste ......................................................................16

TOPSIDE: Training opportunities for peer supporters with intellectual disabilities ....................................................................................................................8 The Right to Decide: Inclusion International’s Global Campaign on Decision-Making ....................................................................10

New Paths to InclUsion Network: Searching for keys to inclusion in the community

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Hear our Voices: A perspective on children with intellectual disabilities ...............................................................................................................21 Europe in Action 2014: Growing up with an intellectual disability ........................................................23

Together we are stronger: the European conference of self-advocates brought together participants from 20 different countries.

The European conference of self-advocates: Listen to what we have to say!

The United Nations Convention on the Rights of Persons with Disabilities guarantees all people with disabilities the right to take an active part in society on an equal basis with others.

Yet, restrictions on legal capacity, discrimination and segregation in institutional care constantly undermine the status of persons with intellectual disabilities as equal citizens in European society.

Over 160 self-advocates and supporters from twenty different countries took part in the ‘Hear our voices’ conference held on 4-6 October 2013 in Zagreb. Marking the European Year of Citizens, the event brought together self-advocates from different corners of Europe to claim their rights as full and equal citizens.

The conference was organised by the European Platform of Self-Advocates (EPSA) in partnership with the Association for Self-Advocacy and Inclusion Europe. The choice of fourteen workshops provided European self-advocates with an outstanding opportunity to discuss their rights and exchange ideas and experiences in different aspects of life.

The right to make decisions, widely recognised by selfadvocates as one of the most important issues, was discussed in the workshop presented by Ivana Gudelj. Self-advocates were unanimous in demanding the right to make their own choices in life. Legal capacity opens the door to full enjoyment of other fundamental rights such as the right to live independently, get married or take part in political and public life. Having legal capacity with adequate support and appropriate safeguards is thus essential for persons with intellectual disabilities to be in control of their life. During the workshop, participants talked about ways to fight for their legal capacity and have it restored.

The problem of guardianship was also highlighted by Tom Høysveen from Norway. In his workshop, self-advocates discussed the rights they were denied because of their disability. “I have full guardianship, so I do not have the right to work. We need to change this!” one of the participants said.

Living in the community is another key issue for persons with intellectual disabilities. The EPSA Chairperson Senada Halilčević brought together self-advocates in two consecutive workshops to discuss their own experiences.

“We want more opportunities like this to share information about community living and learn from each other. People with intellectual disabilities must know about self-advocacy so they can advocate for their rights”, we heard.

Many self-advocates had personal experience of living in large residential institutions. During the conference, we heard how they fought their way back into the community and how their lives changed. Closing of institutions was also discussed in the workshop ‘Take down the walls!’ led by Corinne Clermont from French national self-advocacy organisation Nous Aussi.

In a different room, Samantha Flood from the United Kingdom and her ‘Listen. Believe. Do Something’ team encouraged self-advocates to identify various forms of abuse and the way to stop it. The workshop was based on the results of a research project ‘Looking into abuse’ carried out by persons with intellectual disabilities under the auspices of University of Glamorgan in Wales.

In the closing session, self-advocates discussed messages for politicians, professionals and families.

Another workshop that attracted great interest dealt with the right to start a family. It was run by Ciara Lawrence, Mencap’s Campaign Assistant and EPSA steering group member.

“People with a learning disability should have the right to get married if they want to”; she said after the workshop. “The UN CRPD says that no child should be separated from its parents because of a disability of the parent”, she added. In the workshop, self-advocates also spoke about support that parents with intellectual disabilities need.

In the workshops led by Luminita Caldaras from Romania and Tomislav Ivašković from Croatia, self-advocates spoke about the support they need to finish school and start an independent life in their community. Thanks to the presentation of Gabriela Fonkova from Inclusion Czech Republic, they learned about peer-support and how they could help other people with intellectual disabilities to live independently and take part in society.

People with intellectual disabilities want to have their voices heard and their opinions taken seriously. Mia Farah from Lebanon, a Council Member of Inclusion International, encouraged self-advocates to speak up and make themselves visible. “Our job is to talk to governments and educate them about the Convention”, she said.

In addition to intense discussions, self-advocates had an opportunity to express their ideas in other ways - through dancing, theatre and creative writing; or to take part in workshops on martial arts and video-making. The conference concluded with the General Meeting of the European Platform of Self-Advocates which appointed two new members of EPSA steering group: Luminita Caldaras from ‘Pentru Voi’ Self-Advocacy Group and Elisabeta Moldovan from ‘Ceva de Spus’.

The conference in Zagreb offered self-advocates a choice of fourteen workshops.

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Photos from the conference are available at www.flickr.com/inclusioneurope ★

[EN] In October, the European Platform of Self-Advocates organised a big conference in Croatia. Self-advocates from 20 different countries were at the conference. They talked about their lives and about the problems they have using their rights. At the end of the conference, self-advocates agreed on messages for their families, organisations and politicians.

This is what they said: ■ Spend more time with us, get to know us better and listen to what we have to say.

Include us and respect our opinions.

■ Do not read about us, meet us in person!

Only then you can change your attitudes.

■ You need to respect and support parents with intellectual disabilities.

■ Do not label us.

We are more than our disability.

■ We are the experts.

No one knows our life better than us.

■ Give us information and support.

Respect our rights.

Do not speak in our name.

■ Stop putting money in institutions, support community living.

■ If you cannot help us, at least do not harm us.

■ Believe that abuse is happening right now – particularly in institutions.

Please do something to stop it!

[FR] En octobre, la plateforme européenne des auto-représentants a organisé une grande conférence en Croatie. Des auto-représentants de 20 pays différents sont venus à la conférence. Ils ont parlé de leurs vies et des problèmes qu’ils ont pour utiliser leurs droits. A la fin de la conférence, les auto-représentants se sont mis d’accord pour faire passer un message à leurs familles, aux organisations et aux hommes politiques.

[DE] Im Oktober hat die Europäische Platform für Selbstvertreter eine große Konferenz in Kroatien organisiert. Selbstvertreter aus 20 verschiedenen Ländern kamen zu der Konferenz. Sie sprachen über ihr Leben und über Probleme, ihre Rechte zu nutzen. Am Ende der Konferenz vereinbarten die Selbstvertreter Botschaften, die sie an ihre Familien, Organisationen und Politiker richten.

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Getting older: Ageing and Intellectual Disability Carol Walker Professor of Social Policy, University of Lincoln [EN] Nowadays, people are living longer than ever before. This is also true for people with intellectual disabilities. Older people with intellectual disabilities want to have a good life. They want to choose how they want to live. They want to take part in the community.

Governments and organisations have to make sure that older people with intellectual disabilities get the support they need.

[FR] De nos jours les gens vivent plus longtemps qu’avant. C’est aussi le cas des personnes handicapées intellectuelles. Les personnes âgées ayant un handicap intellectuel veulent pouvoir bien vivre. Elles veulent pouvoir choisir comment elles veulent vivre. Elles veulent prendre part à leur communauté. Les gouvernements et les organisations doivent faire en sorte que les personnes âgées ayant un handicap intellectuel reçoivent le soutien dont elles ont besoin.

[DE] Heute leben die Menschen länger als jemals zuvor. Das gilt auch für Menschen mit geistigen Behinderungen. Ältere Menschen mit geistigen Behinderungen möchten ein gutes Leben haben. Sie wollen entscheiden, wie sie leben. Sie wollen an der Gemeinschaft teilhaben. Regierungen und Organisationen müssen sicherstellen, dass ältere Menschen mit geistigen Behinderungen die Unterstützung bekommen, die sie brauchen.

The ageing of people with intellectual disabilities is a huge social and medical success story; one which is to be celebrated. Today’s are the first generations to survive beyond childhood and adulthood into older age. But increased longevity is not without its challenges for individuals, families and services. It is crucial that these additional years are as happy, healthy and fulfilling as possible. And yet the circumstances of this group have been largely absent from the mainstream debate on ageing and it has only recently begun to be addressed in the intellectual disability world.

An ageing population A minimum of 4.5 million people with intellectual disabilities live in the EU. Of those at least 1.3 million have moderate, severe or profound intellectual disabilities. Some estimates put the figure much higher. In the UK people with intellectual disabilities can now expect to live to over the age of 70 compared to just 20 in the 1930s. Over the next 20 years, the number of people over the age of 60 will rise two and a half times as fast as the group as a whole. It is, therefore, extremely important that policy and services adjust to the changing age profile of the population with intellectual disability.

population and only a small part of this disparity can be attributed to the impact of their intellectual disability.

Changes in the model of care The current generation of older people with intellectual disability has lived through radical shifts in both policy and practice, though the impact on the ground has been patchy.

As work for the Council of Europe Expert Committee has shown, Member States are at very different point of development regarding knowledge and provision for this group. But in general there has been widespread acceptance of, and a move towards greater inclusion and participation.

In many EU countries there has been a significant shift away from institutional to community and family based care, though there is still some way to go as over one million children and adults with disabilities (including mental health problems) still live in institutional care, most because their families are not able to support them. Guidelines were published in 2012 by the European Expert Group on the Transition from Institutional to Community-based Care to encourage further steps to be taken.

Ageing and families

A cautionary and important footnote to this increased longevity is that, overall, people with intellectual disabilities are not living as long as they should. Just half of all people with intellectual disabilities will live as long as the general

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The ageing of people with intellectual disabilities has major implications for their families and for family care. Across the EU, most people with intellectual disabilities live with

their families, normally their parents. These lifelong family cares are now themselves ageing. In the UK, two out of every three people with intellectual disabilities live with a family carer, one third of whom are over the age of 70. As they get older family carers face growing pressures. First, they have smaller support networks as spouses, parents and friends die so they are more likely to be caring alone. Second, they have more limited and inferior experience of services to younger family carers. Third, having managed alone for so long, many are reluctant to seek help in case they are marginalized or excluded. Fourth, as the family carers age and experience greater frailty, some will receive care from the person they have been caring for. Finally, the major issue for all older family carers, and often the person they are caring for, is a fear of what will happen in the future.

Responding to an ageing population of people with intellectual disabilities and confronting the challenges Statutory service provision is usually geared around categories of people rather than the needs of individuals or families. Thus in addressing the question of how to best support older people with intellectual disabilities, the first issue is how they are to be categorized: as ‘older people’ or as ‘people with intellectual disabilities’? The answer to this is extremely important for the quality and kind of support they will receive. Even more serious they may lose out completely as they fall between the cracks of separate services.

Older people services are generally based on a model of inevitable decline and growing dependence. They do not cater to the needs of people with lifelong disabilities, especially those with intellectual disabilities. Even physical disability is regarded (or disregarded) ‘merely’ as an inevitable part of ageing. In contrast, while intellectual disability services have moved towards promoting independence and participation, they have been geared towards children and younger adults and therefore there is little experience of meeting the needs of older people. As they are faced with more older people with intellectual disabilities there is a danger they will adopt the inferior older person’s model of care, based on the stereotypical attitudes towards older people rather than on the abilities of the individual.

Where family carer services have been developed, for example in the UK, they have not focused on the needs of lifelong family carers, older carers or family carers of people with intellectual disabilities. There is now the new challenge of people with intellectual disabilities becoming carers themselves: families where mutual care is provided between the person with intellectual disability and the person who has always cared for them.

Providing support to families into older age The ageing of people with intellectual disabilities and their family carers presents several challenges for service provision.

First, services should continue to promote the autonomy of older people. Their needs and aspirations should be put at the centre of the decision making process regardless of age.

Second, services need to promote and protect the autonomy of older family carers. Just as people with intellectual

disabilities have rights (as laid down in the Convention on the Rights of Persons with Disabilities) so too should family carers.

Families need support in their caring relationship when they are living together and perhaps becoming frailer, through the transition to living apart should that happen and to support them when they live apart or when one party, most Professor Carol Walker gave commonly the family a keynote speech at 2013 ‘Europe in carer, dies. This requires Action’ conference in Ljubljana. services to move from crisis intervention to prevention. Family carers do not want to stop providing care for their relative but, especially as they age, they do need changing levels of support to maintain the caring relationship as their circumstances change. People with intellectual disabilities and their family carers should be treated as equal partners in planning their lives.

What has age got to do with it?

While there is much further to go, services and attitudes to provision for people with intellectual disabilities and their families have moved forward positively in recent decades.

There has been a growing emphasis on putting the individual at the centre of service planning and striving to enable people with intellectual disabilities to live in and be part of the community. Models of care have emphasized independence and participation, choice and control. Such goals have been applied regardless of the level of intellectual disability. Services for older people have been much less progressive, based on a model of inevitable decline and growing dependence. This is not a suitable model of care for any person. The advances in the field of intellectual disability should continue across the life-course, regardless of age. This more progressive model of support should be applied to all older people rather than the inferior older person’s model of care being offered to older people with intellectual disabilities.

In looking to the future, we should ask ourselves: ‘What has age got to do with it?’ We all need to strive for ‘A Society for All Ages’, as promoted in the UN’s 2002 strategy on ageing. All individuals, young and old, with intellectual disabilities and without, should have the right to self-determination, participation, inclusion and choice and control in their lives. These principles are as relevant for the 70 year old as the 16 year old.

Growing older is a good news story. It needs to be an even better one.

Carol Walker, Professor of Social Policy, University of Lincoln cawalker@lincoln.ac.uk. ★

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Working together towards accessible information and lifelong learning for all Petra Letavayová Inclusion Europe [EN] In May, Inclusion Europe organised a meeting. The meeting was about the right to get information and training. In the meeting people spoke about making information easy to read and understand. They gave ideas on how to make sure that people with intellectual disabilities can get information and learn new things all their life.

[FR] En mai, Inclusion Europe organisé une conférence. Cette conférence était sur le thème du droit à avoir accès à l’information et à des formations. Pendant cette conférence des gens ont parlé de comment rendre l’information facile à lire et à comprendre. Ils ont donné des idées sur comment faire en sorte que les personnes handicapées intellectuelles puissent avoir accès à l’information et apprendre des nouvelles choses toute leur vie.

[DE] Im Mai hat Inclusion Europe ein Treffen organisiert. Bei dem Treffen ging es um das Recht auf Information und Weiterbildung. Die Teilnehmer sprachen bei dem Treffen darüber, Informationen leicht verständlich und leicht lesbar zu machen. Sie tauschten Ideen aus, wie man sicherstellen kann, dass Menschen mit geistigen Behinderungen Informationen bekommen und ihr ganzes Leben lang dazu lernen können.

Information is a fundamental source of learning and empowerment. Like everyone else, persons with intellectual disabilities require information and learning opportunities in order to live independently and take an active part in society.

The United Nations Convention on the Rights of Persons with Disabilities, ratified by the European Union and the majority of EU member states, guarantees all people with disabilities the right to access information and the right to education without discrimination and on the basis of equal opportunity.

Nevertheless, the accessibility needs of persons with intellectual disabilities are rarely taken into account when it comes to the provision of information and adult education.

Inclusion Europe and its members have jointly addressed this issue within the framework of European projects Pathways I (2007-2009) and Pathways II (2011-2013). Both projects were based upon the recognition that lack of accessible information is one of the main reasons why adults with intellectual disabilities have few lifelong learning opportunities.

The cooperation with organisations from Austria, Finland, France, Germany, Ireland, Lithuania, Portugal and the United Kingdom on the project Pathways I led to the development of ‘European standards for making information easy to read and understand’ and other tools aimed at making information and

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learning process accessible to learners with intellectual disabilities. These tools are: ■ a training program for lifelong learning staff to learn how to write texts which are easy to read ■ guidelines on how to involve people with intellectual disabilities in the preparation of accessible information ■ a check-list to evaluate the quality of easy-to-read documents ■ recommendations for educators on how to make their classes accessible The second Pathways project (Creating Pathways to Lifelong Learning for Adults with Intellectual Disabilities) focused on promoting practical use of Pathways materials to increase learning opportunities for adults with intellectual disabilities in additional nine European countries: Croatia, Czech Republic, Estonia, Hungary, Italy, Latvia, Slovakia, Slovenia and Spain. A team of national Pathways trainers was set up in each country to train education professionals on how to make information easy to read and understand.

At the same time, a parallel series of seminars was organised for self-advocates, providing them with an opportunity to learn about their role in the production and quality control of accessible information. Some five hundred professionals and persons with intellectual disabilities received Pathways training in 2013.

On the way towards lifelong learning: the future of easy-to-read

others is their right. Establishing a solid demand for ‘easy-toread’ will move our case forward.

As a result of both projects, the European ‘easy-to-read’ standards and other Pathways tools are now available in eighteen European countries as a common quality guideline for accessible information and training. The organisations participating in both projects met on 31 May 2013 in Ljubljana to share their experiences and discuss the progress done so far on improving the access of persons with intellectual disabilities to information and lifelong learning.

Another important step is to seek wide recognition of ‘easyto-read’ as a basic accessibility requirement for people with intellectual disabilities. Participants noted that the needs of persons with intellectual disabilities are often overlooked by decision-makers when it comes to regulations on improving accessibility. National legislation should guarantee the provision of ‘easy-to-read’ along with other measures aimed at removing barriers faced by people with disabilities in society.

The participants noted that the concept of ‘easy-to-read’ has been enjoying a growing attention in the past years.

More and more people have understood that ‘easy-to-read’ information is necessary for people with intellectual disabilities to take part in society on an equal basis with others.

In the United Kingdom, government offices have published accessible versions of disability-relevant documents; the website of the German parliament contains an ‘easy-toread’ section; and an increasing number of service-providers for persons with disabilities have been producing accessible information. Despite these positive examples, ‘easy-to-read’ is far from being a common practice. In fact, for a number of countries, the project Pathways was the first attempt to enforce the right of people with intellectual disabilities to access information and lifelong learning.

As far as quality of ‘easy-to-read’ is concerned, all participants agreed that the involvement of persons with intellectual disabilities in its production was a principal quality requirement which could not be compromised. It is also one of the main conditions for the use of the European ‘easy-toread’ logo developed by Inclusion Europe. The symbol is the only European quality-mark for accessible information and its use has been rapidly growing across different countries. It is now the role of Inclusion Europe and its members to make sure that the logo appears only on texts which comply with the European standards.

A great deal of work still needs to be done on the promotion of ‘easy-to-read’ nationally and Europe-wide. Such awarenessraising is not a one-way street. It should target not only those providing information but also those on the receiving end persons with intellectual disabilities need to understand that accessing information and education on an equal basis with

Concluding the conference, the participants discussed ways to build on the common foundations laid by the project Pathways and bring forward future cooperation in addressing the above-mentioned challenges.

More information about the project can be found at: www.Life-Long-Learning.eu The project Pathways has been carried out with the support of the Lifelong Learning Programme of the European Union. ★

Group discussions at the final conference of the European project Pathways II.

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TOPSIDE: Training opportunities for peer supporters with intellectual disabilities Lucia Sobeková Inclusion Europe [EN] Peer support is when a self-advocate helps another person with intellectual disability to make decisions and live independently. Inclusion Europe worked on a project to make peer support more known in Europe. The project is called TOPSIDE. The project helped to train self-advocates to become peer supporters. You can read all about the project on the website www.peer-training.eu [FR] Le soutien par les pairs c’est quand des auto-représentants aident une personne handicapée intellectuelle à prendre des décisions et vivre seule. Inclusion Europe a travaillé sur un projet pour rendre le soutien par les pairs plus connu en Europe.

Le projet s’appelle TOPSIDE. Le projet a aidé à former des auto-représentants à devenir des souteneurs. Vous pouvez lire plus sur le projet sur le site : www.peer-training.eu [DE] Selbstvertreter können sich gegenseitig dabei unterstützen, wie sie Entscheidungen treffen und selbständig leben können. Inclusion Europe hat an einem Projekt gearbeitet, um diese gegenseitige Unterstützung zu verbreiten. Das Projekt heißt TOPSIDE. Das Projekt hat Selbstvertreter darin ausgebildet, andere Menschen mit geistigen Behinderungen zu unterstützen. Sie können alles über das Projekt auf dieser Webseite lesen (Englisch und weitere Sprachen): www.peer-training.eu Many persons with intellectual disabilities in Europe cannot participate as active citizens in their societies. Since most have only limited access to formal or informal adult education and training, one of the main challenges lies in providing them with the appropriate support needed to make their own decisions, take control over their lives and perform their role as active citizens.

Curriculum is at the heart of the training and provides the basis for learning. To adapt the curriculum to specific needs in each country and assure the quality of trainings, the project team provided trainers and peer supporters with methodological guidelines on how to implement the TOPSIDE training.

TOPSIDE Curriculum

Bearing this in mind, Inclusion Europe together with its partners from six European countries launched in 2011 a two-year European project TOPSIDE. It aimed to increase the opportunities of adults with intellectual disabilities to receive training and support allowing them make informed decisions and live independently, by introducing a new concept of non-formal education - peer support.

To achieve this objective, the project TOSPIDE developed a new training model which helps adults with intellectual disabilities to acquire new skills for supporting their peers.

The training is based on the collaboration of professional trainers and people with intellectual disabilities who work together on the preparation of the training in all its stages.

Any motivated person with intellectual disability with some social or communication skills or experience in self-advocacy can become a peer supporter. A skill-based TOPSIDE

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The training helps people with intellectual disabilities to develop the skills necessary for providing adequate peer support and for understanding of decision-making processes.

These include communication skills (expressing opinions and interacting with others and developing relationships), social skills (requesting information, problem solving) and civic skills (politeness, official communication). Emphasis was put on building empathy in participants, to understand each other’s situation and the importance of peer support.

The Topside Curriculum consists of more than 150 exercises which allow trainees to develop a variety of peer-to-peer, inclusive and pragmatic skills. The database of the exercises is available on the project website in six project languages.

It is complemented by methodological Guidelines for trainers which explain the concept of peer training and introduce

being on the receiving end, they got from the beginning an opportunity to offer support to someone else.

Peer to peer impact

Participants of the TOPSIDE pilot training in Romania. the ‘tool kit’ (methodology and exercises) elaborated during the project. In addition, the project also developed Material for peer-supporters to help them understand their role and carry out their tasks. The material includes easy to understand texts, key words, pictograms and pictures to help peer supporters to remember what is important and to measure his or her progresses. To ensure the continuation of learning also after the training, Guidelines for mentors explain how to encourage persons with intellectual disabilities to continue their commitment.

From words to action The TOPSIDE training pack was tested by the project partners in their countries: KVTL in Finland, Pentru Voi in Romania, ENABLE in the United Kingdom, Dincat in Spain, SPMP in the Czech Republic and Perspectief in the Netherlands.

Every trainer adapted the guidelines to the needs of participants and to the experiences and knowledge of peer supporters. 45 participants attended the pilot courses and more than 210 hours of training were provided.

The very first pictures of the training were different in each country. In the Netherlands, Romania and Finland, the training was rather intensive and took place during the weekend outside the environment in which the participants lived.

In Romania, staying in a hotel during the training offered participants a possibility to develop financial management skills as they needed to plan their budget for the stay.

In the Netherlands, people faced many real life situations and learned to adapt to new circumstances. On the contrary, in the Czech Republic for example, the time frame was less tight as participants met regularly every week and have now formed informal groups of support.

One of the main successes of the project was the promotion of understanding of peer support among people with intellectual disabilities. They understood that TOPSIDE was not a project created for them, but with them. Their experience, desire for learning and enthusiasm to contribute is what mattered during the training from its early stages.

People with intellectual disabilities as trainees and peer supporters became the engine of the project. Instead of

The TOPSIDE training opened a door for active participation of adults with intellectual disabilities. Peer supporters and participants were enabled to apply the newly acquired skills in different environments: in informal support groups, in selfadvocacy organisations to provide support for other members of that organisation, in counselling services accessible to people with intellectual disabilities, or in organisations to complement their work from a peer perspective. Moreover, new skills widened their horizons for employment possibilities or volunteering activities.

By empowering people with intellectual disabilities to be able train their peers, TOPSIDE came back to the roots of support. The project empowered the ones who can understand the reality of disability the best - other people with intellectual disabilities. Mutual trust, similar life experiences and support of each other is what makes peer support innovative.

Being a peer supporter means also sharing with others. Every supporter has his or her own experience which can be a key incentive for other persons to realise their abilities and encourage them to further develop their skills and to take an active part in the community.

The way forward The ambition of the project partners is to acquire recognition of the TOPSIDE Curriculum by leading intellectual disability organisations in other countries and therefore create the roots for a common European approach in the area of peer support. Based on country examples, efforts must be put into extensive research to identify the possibilities for applying the training in other EU countries and to recognise peer support as a valuable learning experience on local and national level.

Last but not the least, the TOPSIDE training could be taken on by other organisations supporting people with intellectual disabilities or by other relevant national educational partners to promote peer support and training as a valuable training for education of adults with intellectual disabilities.

More information about the project TOPSIDE can be found at: www.peer-training.eu TOPSIDE was funded with the support of the Lifelong Learning Programme of the European Union. ★

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The Right to Decide: Inclusion International’s Global Campaign on Decision-Making Anna MacQuarrie Inclusion International [EN] Everyone should have the right to make his or her own decisions. But people with intellectual disabilities are often not allowed to make decisions by themselves. There is a world campaign to change this. The campaign is about making sure that people with intellectual disabilities can make their own choices. You can read more about the campaign on the website: www.inclusion-international.org [FR] Tout le monde devrait avoir le droit de prendre ses propres décisions. Mais les personnes handicapées intellectuelles n’ont souvent pas le droit de prendre des décisions par elles-mêmes. Il y a une campagne pour changer cela. Cette campagne veut faire en sorte que les personnes handicapées intellectuelles puissent faire leur propres choix. Vous pouvez lire plus sur cette campagne sur ce site : www.inclusion-international.org [DE] Jeder sollte das Recht haben, eigene Entscheidungen zu treffen. Menschen mit geistigen Behinderungen dürfen aber oft nicht selber Entscheidungen treffen. Es gibt eine weltweite Kampagne, um dies zu ändern. Bei der Kampagne geht es darum, sicherzustellen, dass Menschen mit geistigen Behinderungen ihre eigenen Entscheidungen treffen können. Sie können hier mehr über die Kampagne lesen: www.inclusion-international.org Inclusion International’s global campaign, ‘the Right to Decide’, is designed to get people with intellectual disabilities, families and communities talking about making decisions and supporting decision-making. This discussion is about our daily lives – the big decisions and the little decisions – that give us voice and control in our lives. It’s a discussion about how we make those decisions. A great deal of attention is invested in law reform – which is important – but we want to talk about how to make the right to decide real – in our daily lives.

People with intellectual disabilities have told us that having control in their lives and the right to make decisions is essential for being seen and treated equally in community.

Yet we continue to learn about how to support people to make decisions in their lives and how to make the right a reality.

The goal of the campaign is to advance the rights articulated in Article 12 of the UN Convention on the Rights of Persons with Disabilities and to help families and others to understand the implications of legal capacity for people with intellectual disabilities and how to support people with intellectual disabilities to make their own decisions.

‘The Right to Decide’ campaign builds on Inclusion International’s previous global campaigns and draws from the stories and experience collected from our members about issues in their communities. The campaign engages families

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and self-advocates in discussions about the way in which people with intellectual disabilities are systematically denied the right to self-determination and how we might begin to move to models of support which enable ‘supported decisionmaking’ instead of substitute decision-making.

Voice and Choice Throughout previous global campaigns, a common message from our members has been the lack of voice and choice that people with intellectual disabilities and their families have.

Without a voice, they told us, we are invisible and powerless.

For people with intellectual disabilities, too often their voice is restricted because they are denied the right to make decisions in their lives. Informally or formally they are deemed ‘incapable’ or ‘incompetent’; they are penalized if they need support to make decisions.

In many countries people with intellectual disabilities don’t get to decide how they spend their time; they are not allowed to control their finances, vote or get married; they are voiceless in their own lives. Our members tell us that often people with intellectual disabilities aren’t supported to develop decision-making skills as they grow; that families lack the skills and tools to understand how to support their sons and daughters to express themselves and that guardianship is a way to ‘protect’ them; that communities lack the mecha-

nisms (legal and otherwise) to recognize supported decisionmaking.

Supporting people with intellectual disabilities to make decisions is not just about changing laws – it’s about changing our practices and transforming communities and societal relationships. It’s about building capacity of individuals, families and communities.

The Voice of Self-Advocates Over the past few decades, the direct engagement of people with intellectual disabilities and the development of a selfadvocacy movement have provided adults with intellectual disabilities a platform to express their priorities. Consistently, adults with intellectual disabilities have told us that having a voice and control in their lives is a top priority; that the right to make decisions is essential for being seen and treated equally in the community. Increasingly, we have heard that having the right to decide is important for securing all other rights. The development of the UN Convention on the Rights of Persons with Disabilities (CRPD) represented an opportunity to secure this right in international law. This campaign looks at how we make this right real for people with intellectual disabilities.

What this means for families Families are the main source of support for people with intellectual disabilities and they worry about what will happen when they are gone; they are concerned about the safety of their sons and daughters. Families have told us they are: ■ Fearful for the future and often ask ‘What will happen when I’m gone?’

■ Concerned about the safety of their sons and daughters in communities that have not demonstrated acceptance and inclusion.

■ Blamed if their son or daughter makes a poor decision or a mistake.

■ Lacking the skills and tools to understand how to support their sons and daughters to make their own decisions.

■ Required (as a result of legal practices and/or a lack of community awareness) to assume formal decisionmaking roles.

■ Identify models of support for families and individuals that enable people to control their own lives.

■ Explore models of supported decision-making.

■ Provide tools to families and individuals to understand decision-making and how supported decision-making works.

Building on the findings from our previous global campaigns, and through regional discussion groups with families and people with intellectual disabilities and studying global initiatives on decision-making, we are seeking to identify how governments and communities can: ■ Support people to make choices in their everyday life about where and with whom they live.

■ Provide support to families in planning.

■ Promote person centred planning.

■ Secure access to supported decision-making.

Through the campaign, we want to learn about: ■ The ISSUES people with intellectual disabilities face in making their own decisions and having their right to make decisions recognized.

■ How people are SUPPORTED to make their own decisions.

■ What EXAMPLES of laws, policies, community and family practices are in place.

Get involved in the campaign: ■ Visit the campaign website: www.therighttodecide.org ■ Share your stories and examples online. Tell us: ■ how supported decision-making is being used, what is working, what are the challenges; ■ about the importance of having control in your life; ■ about decisions you have made.

■ Participate in our on-line consultation and webinars.

■ Organize a national or regional discussion group with families and/or self-advocates (discussion guides and campaign materials available online). ★

These factors have contributed to an overreliance on families to be decision-makers and the notion that substituted decisions are a form of protection. We know now that guardianship and substitute decision-making are not the answer. Adults who are not allowed to make their own decisions are more vulnerable. To ensure a safe and secure future, people with intellectual disabilities need to be supported to make their own decisions.

Join the Campaign The objectives of the campaign are to: ■ Raise awareness about the impact of the denial of the right to make decisions.

Inclusion International’s global campaign explores models of supported decision-making.

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Making Persons with Disabilities Full Citizens - New Knowledge for an Inclusive and Sustainable European Social Model (DISCIT) is a research project on exercising ‘Active Citizenship’. The project looks at the social conditions for participation of citizens with disabilities in Europe. DISCIT’s objective is to identify more effective ways to remove and prevent physical, attitudinal, social and organisational barriers to Active Citizenship and participation of people with disabilities on an equal basis with others. The project will produce interesting results for people with intellectual disabilities across European societies, as it looks at several key areas of life: ■ the role of social services; how they meet the needs and claims of persons with disabilities and what kind of assistance and support the services are providing to persons with disabilities ■ the drivers of change and strategies promoting a successful move towards community living; removing barriers to the development of community living practices ■ the conditions for ensuring accessibility and availability of new technologies, enabling persons

with disabilities to enjoy full and effective participation in society ■ identifying potential poverty traps and barriers to economic independence for persons with disabilities, providing strategies for financially sustainable economic independence for persons with disabilities ■ political participation and representation for and of persons with disabilities, including the roles of Disabled People’s Organisations (DPOs) in the processes of deliberation, decision and implementation of disability policy at international, European, national, and local levels Inclusion Europe has been invited to take part in the project as a member of the European Stakeholder Committee. Its members advise the project on scientific and policy matters.

The objective is to foster mutual understanding between NGOs and scientists and generate more credible science that will be perceived as useful by people with disabilities.

The close dialogue between European NGOs and the research community will contribute useful results to our policy and advocacy strategies and ensure their effective use by NGOs, including Inclusion Europe.

DISCIT: Towards active citizenship for Europeans with disabilities Rune Halvorsen and Bjørn Hvinden NOVA Norwegian Social Research [EN] Inclusion Europe takes part in a project called DISCIT. The project is about helping persons with disabilities take part in society and use their rights. The project tries to find out what governments and decision-makers should do to make sure that persons with disabilities can use their rights. You can read more about the project on the website: www.discit.eu [FR] Inclusion Europe participe à un projet appelé DISCIT. Ce projet veut aider les personnes handicapées intellectuelles à prendre part à la société et utiliser leurs droits. Le projet essaye de comprendre ce que les gouvernements et les personnes qui prennent des décisions font pour être surs que les personnes handicapées intellectuelles puissent utiliser leurs droits. Vous pouvez en lire plus sur ce projet sur ce site : www.discit.eu [DE] Inclusion Europe nimmt an einem großen Projekt namens DISCIT teil. Bei dem Projekt geht es darum, Menschen mit Behinderungen zu helfen, an der Gesellschaft teilzuhaben und ihre Rechte zu nutzen. Das Projekt versucht herauszufinden, was Regierungen und Entscheidungsträger tun sollten, damit Menschen mit Behinderungen ihre Rechte nutzen können. Sie können hier mehr über das Projekt lesen (auf Englisch): www.discit.eu

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In 2013 the European Union is celebrating the European Year of Citizens.

The year is dedicated to the rights that come with EU citizenship and the opportunities for genuine enjoyment of the substance of the rights conferred by the status as EU citizen. In the same year the EU has funded a three year project – Making Persons with Disabilities Full Citizens - New Knowledge for an Inclusive and Sustainable European Social Model (DISCIT) – which has set itself the tasks of examining the conditions for exercising the social dimension of citizenship on the part of Europeans with disabilities: ■ the right to enjoy social protection against major life risks (such as illness, poverty, violence etc.) and avoiding constant worries about the future ■ to enjoy opportunities to live independently, exercising freedom, choosing the life one has reasons to value and avoiding dependence on or interference from others ■ to participate in the discussions and decisions setting the framework for one’s own life as well as decisions aiming at the promotion of the common good and regulating social behaviour, given the interdependence of human action The possibility for persons with disabilities to exercise social citizenship - through social agency and practice – depends on a number of factors. This article presents three main approaches to the discussion about social citizenship in Europe and their relevance for Europeans with disabilities.

Three approaches to social citizenship In contemporary Europe many persons with disabilities are denied social citizenship – or more broadly the possibilities of participation in society and economy on an equal basis with others. Factors that have prevented persons with disabilities from enjoying social citizenship have included barriers in access to public, private and voluntary social services, employment, community living, new technology, opportunities for asset accumulation and participation in discussions and decisions setting the framework for one’s own life. In the European Year of Citizens particular attention has been given to the organizational, physical and attitudinal barriers to the free movement within the European community, including dedicated action lines focused on the opportunities for persons with disabilities to travel, work and study.

While European governments tend to agree that more needs to be done to achieve full and effective participation of persons with disabilities, their approach to social citizenship varies considerably. We find a range of different perspectives on and approaches to social citizenship – in political philosophy, political science, sociology and social policy. If we look at what has been the main focus, interest or concern for each of these perspectives, we follow British political theorist David Miller (2000) by claiming that these tend to cluster in three main approaches. We may characterize the three clusters of approaches in the following simplified or ideal-type way:

■ Socio-Liberal approaches being concerned about the citizen’s rights and duties vis-à-vis the community (other citizens) or the state, and the rights and duties of community or state vis-à-vis the citizen, with a focus on what degree and form of protection against insecurity, uncertainty or risk (e.g. lack of income or maintenance, illness, incapacity, violence) the citizen ought to receive or be able to expect from others than his or her own family or kin.

■ Market-Liberal (Libertarian) approaches being concerned about the citizen’s autonomy and freedom in relation to the community or the state, with a focus on what degree and form of protection of this autonomy and freedom the citizens ought to enjoy or be able to expect. Although these approaches may also refer to rights and duties vis-à-vis the community or state, these are constructed as basic and few and in principle based on contractual agreements. Hence these approaches tend to emphasize the citizen’s independence and self-responsibility combined with limited and narrowly defined activity on the part of the state.

■ Civic-Republican approaches being concerned about the citizen’s participation in the life of the community, having a focus on what degree and forms of participation in deliberation and decision-making related to promoting the common good to be expected of the citizen. This moral duty to participate does, however, imply a democratic right to co-determination and influence.

It is worth stressing that these three clusters of approaches to citizenship are simplified or idealised constructions, focusing on different but complementary aspects of citizens’ relations with or membership in the community. The distinction between the clusters of approaches is analytical; in the social practices of citizenship, the focused aspects will co-exist in various ways and degrees.

To various extents, the EU and the member states have addressed all three aspects of citizenship. During the last two decades, the market-liberal and civic-republican approaches have become more salient in Europe, possibly at the expense of the socio-liberal approaches.

While in Europe different countries have different arrangements for providing for citizens and protecting them against risks, and some of these arrangements are closer to one of these citizenship models than to others; a country’s actual configuration of social provision and risk protection is always more complex than the pure and simplified picture drawn by a model. Nonetheless it is fair to say that the social protection systems of some countries have given relatively greater emphasis to the public redistribution of resources and collective risk protection (socio-liberal approaches) than others (e.g. Norway, Sweden). Vice versa, some countries have in diverse ways granted a greater role to individual or family responsibility and risk protection and consumer choice (market-liberal approaches) than others (e.g. Germany, Ireland,

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Italy, UK). Last but not least, citizens’ opportunities for exerting influence on public affairs or the contents of personalised public provision have also varied among European countries (civic-republican approaches).

Active versus passive citizenship All three approaches to citizenship are to a great extent describing norms for action; whether citizens are in a position to live up to these norms is another matter. For this reason, policy-makers and scholars have contrasted passive and active citizenship or they have described citizens’ actual behaviour as being somewhere on a continuum from a passive to an active pole. The fact that many people for various reasons are not very active citizens have together with the many challenges facing contemporary welfare states sparked a renewed debate over just how ‘active’ citizens ought to be (Johansson & Hvinden 2013). Persons with disabilities are being encouraged – and also themselves expect – to shoulder more responsibilities, exercise more choice or engage more actively in the public sphere, deliberation and decision-making, or in self-organized or voluntary efforts.

This debate has focused predominantly on notions of conditionality within socio-liberal approaches to social citizenship, as expressed in slogans like ‘no rights without responsibilities’. The focus is on promoting participation in paid work and prolonging working careers. Activation reforms aim to shift the balance towards the duties and responsibilities of citizens, most clearly seen in the activation of income maintenance schemes for people of working age and in pension reform in Europe. Yet, we can observe similar tendencies to separate active citizenship from passive citizenship with regard to the other two approaches to social citizenship.

Within market-liberal approaches, the focus has been on promoting welfare consumerism or the marketisation of welfare. According to the premises of this citizenship model, individuals are to enjoy consumer sovereignty, and this is to be accomplished through choice and contract. The instrument of contract means that consumers who feel they have not been given the service they are entitled to may take legal action against the provider. In this kind of mixed or semiprivate welfare market, people’s demands for a service may be regulated through user fees or charges covering at least part of the cost of providing it.

Within civic-republican approaches, we see the emergence of new discourses on the involvement of citizens and a search for new forms of civic participation beyond representative democracy, often under the headings of ‘civil dialogue’, ‘collaborative governance’ or ‘participatory governance’.

The European Union has made ‘participatory democracy’ a key objective, aiming at an open, transparent and regular dialogue with citizens, representative associations and civil society.

Similarly, national governments are establishing new forums and channels for participation and the articulation of interests,

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including not only long-term actors (e.g. social partner organizations), but also self-help groups, user organizations, community-based organizations and other civil society actors speaking on behalf of marginalized groups. Across Europe, welfare states are focusing more on the role that citizens could play as co-producers of welfare, by volunteering in organizations and hence demonstrating their commitment and solidarity with society and fellow citizens. Individual claimants of social benefits in cash have been attributed the right and duty to be engaged in a dialogue with service providers to clarify appropriate measures or courses of action, e.g. the development of ‘individual action plans’ for social security claimants.

New knowledge for active citizenship The active dimension of the three approaches and they ways in which elements associated with each of them combine are of particular interest within current debates on welfare reform in Europe and most EU member states, including those reforms that are relevant for persons with disabilities.

In several reform packages, most clearly in relation to active labour market policy measures and pension reforms, we can observe several attempts to combine notions such as fulfilling duties, exercising choice and self-responsibility, and/or participating in deliberation and decision-making.

How the three approaches to social citizenship structure the opportunities for Europeans with disabilities to full and effective participation in society, in policy making and the economy, is an unanswered question. Hence, one important task for research into social citizenship is to describe and analyze the ways in which new and ‘hybrid’ forms of social citizenship give rise to tensions, conflicts and ambiguities.

The second task is to gain more systematic knowledge about how the Europeanization and denationalization of social policy may promote such hybridization and a relative shift in the overall configuration of social citizenship. The third task is to examine how new and changing forms of social citizenship are being experienced and faced by different cohorts of men and women with disabilities in Europe.

During 2013-2016, DISCIT will synthesize policy lessons about the opportunities for active citizenship for persons with disabilities from eight European welfare states: the Czech Republic, Germany, Ireland, Italy, Norway, Sweden, Serbia and the United Kingdom. More information about DISCIT is available at www.discit.eu.

References Miller, David 2000 Citizenship and National Identity.

Cambridge, Polity Press.

Johansson, Håkan and Bjørn Hvinden 2013 “Towards a PostMarshallian Framework for the Analysis of Social Citizenship”, by, in A. Ewers & A.-M. Guillemard (eds) Social Policy and Citizenship: The Changing Landscape, Oxford University Press (pp.35-56). ★

A significant step towards the right to make decisions for people with intellectual disabilities Camille Latimier Inclusion Europe [EN] The ‘Committee on the Rights of Persons with Disabilities’ is a group of people who check how governments protect the rights of people with disabilities. The Committee wrote an important document about the right to decide. The document tells governments how to make sure that all people with disabilities can use their right to decide.

[FR] Le «comité des droits des personnes handicapées» est un groupe qui vérifie que les gouvernements protègent les droits des personnes handicapées. Le comité a écrit un texte important sur le droit de décider. Ce document dit aux gouvernements comment faire pour que toutes les personnes handicapées puissent utiliser leur droit de décider.

[DE] Das „Komitee für die Rechte von Menschen mit Behinderungen“ ist eine Gruppe von Menschen, die überprüfen, wie Regierungen die Rechte von Menschen mit Behinderungen schützen. Das Komitee hat ein wichtiges Dokument über das Recht zu Entscheiden geschrieben. Das Dokument erklärt Regierungen, wie sie sicherstellen können, dass alle Menschen mit Behinderungen ihr Recht zu Entscheiden nutzen können.

The draft General Comment on Article 12 written by the Committee on the Rights of Persons with Disabilities represents a significant step in the realization of the right of people with intellectual disabilities to make their own choices.

The draft General Comment, which is an authoritative document to interpret the Convention, recalls the importance of having legal capacity as a universal attribute and reaffirms that “the existence of an impairment can never be the basis for a denial of legal capacity or of any of the rights in Article 12.“ The Committee on the Rights of Persons with Disabilities, first of all, reminds us about the history of legal capacity and the restriction that other groups, such as women, had to face.

People with disabilities are still “disproportionally affected by substituted decision-making regime”. These practices are not admissible anymore and full legal capacity must be restored to persons with disabilities on an equal basis with others.

The Committee underlines the lack of understanding by Member States of the scope of this article and makes a clear statement that “the development of supported decision-making systems in parallel with the retention of substitute decisionmaking regimes is not sufficient to comply with Article 12.“

are discriminatory approaches, which are not permitted under Article 12.

The Committee recalls that support must be provided for the exercise of legal capacity and describes this support as both “formal and informal’’ and as “arrangements of varying type and intensity“. The type and intensity of support should echo the diversity of people with disabilities.

Inclusion Europe has been extremely pleased to read that the Committee, in its attempt to clarify what the word ‘support’ means, also recognises self-advocacy and peer support as forms of support which can assist people with disabilities in exercising their legal capacity.

The Committee describes the difference between substitute and supported decision-making by the perceived ‘best interests’ of the individual “as opposed to the individual’s own will and preferences“. This definition is extremely important, together with the provisions on communication, for people with severe disabilities and complex needs. ★

But the Committee goes even further concretely criticising the status approach, the outcome approach as well as the functional approach. These three forms of assessment look at the individual’s ability or decision-making skills. All of them

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Not letting a serious crisis go to waste Neil Crowther An independent disability rights consultant [EN] The economic crisis means that countries have problems with money. Many governments decided to spend less money on helping people. This makes it harder for people with disabilities to use their rights. But the crisis can also be a chance for governments to find better ways of helping people with disabilities.

[FR] La crise économique cela veut dire que des pays ont des problèmes d’argent.

Plein de gouvernements ont décidé de dépenser moins d’argent pour aider les gens.

Cela rend les choses plus difficiles pour que les personnes handicapées puissent utiliser leurs droits. Mais la crise peut aussi être une chance pour que les gouvernements puissent trouver des meilleurs moyens d’aider les personnes handicapées.

[DE] Wirtschaftskrise bedeutet, dass Länder Probleme mit Geld haben.

Viele Regierungen haben entschieden, weniger Geld für die Hilfe von Menschen auszugeben. Das macht es schwieriger für Menschen mit Behinderungen ihre Rechte zu nutzen. Die Krise kann aber auch eine Möglichkeit für Regierungen sein, bessere Wege zu finden, um Menschen mit Behinderungen zu helfen.

‘You never let a serious crisis go to waste. And what I mean by that is it's an opportunity to do things you think you could not do before.’

Rahm Emanuel , ex-Chief of Staff to President Barack Obama Given the eye-watering austerity measures in most member states it may seem implausible to suggest that the crisis facing the European Union could present opportunities for disability rights. But the reality is that while austerity presents many challenges in pursuing a progressive disability rights agenda, the crisis itself has not involved a dismantling of a well-established infrastructure of support for choice, control and full participation. This is because across most of Europe such approaches were in their infancy and the public policy and spending were rarely in alignment with the principles and goals of the UN Convention on the Rights of Persons with Disabilities. This is not just a European weakness.

As the US National Disability Council noted in 2011 “public policy remains entrenched in the 1960s-era all-or-nothing approach to serving people with disabilities, in which a person must demonstrate inability to be productive to be deemed eligible for critically important supports.” Such welfare states compensate people for their social and economic exclusion (a safety net); they do not typically strive to fix it (an investment).

Writing in 1990, Mike Oliver – widely credited as the academic who framed ‘the social model of disability’, reflecting on disability rights advocacy in the UK, noted:

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Neil Crowther was one of the keynote speakers at the strategic policy meeting organised by Inclusion Europe in Brussels.

“It is perhaps ironic that many of us spent the 1970s criticising the welfare state, only to find that these arguments were built upon and taken much further by a government determined to reduce state expenditure. Consequently we spent the 1980s defending what we had previously attacked. In sum, we defended the indefensible and I do not propose to spend the 1990s doing the same”.

Likewise, in 2013 a great deal of the energy of disability rights advocates is being spent defending, or imagining

a future return to, the welfare states of old. Some will argue that such conservationism is the only sensible response. Yet this is to stick our heads in the sand. The challenging reality is that austerity is not a short term aberration following which things will return to ‘business as usual’. We face a ‘new normal’ and we have no choice but to seek to reimagine disability rights for the days ahead if we wish to continue to make progress.

The opportunities to do so arise from the fact that the crisis facing Western democracies was and is not only economic in character. It is equally a crisis of old assumptions and ways of doing things now that Europe faces competition from the emerging economies of Asia and South America; a crisis of the European social model and post-war welfare states in the face of ageing populations; a crisis of democracy with declining engagement in elections and membership of political parties, and a crisis of trust in the institutions – democratic bodies, businesses, the media – where power is concentrated and which have been revealed as sometimes lacking integrity or strong ethics.

It is also a social crisis with the potential either to bring people together to forge new ways to work for the common good, or to push people apart, leaving space for incivility and extremism.

All of these crises are opening up opportunities to seek to do what we were unable to do before because each has created the spur for deep reflection and the search for new ideas and answers. As the British disability rights activist Jenny Morris has argued, “it’s no good continuing to fight our battles within the context of the intellectual and political space which the disability movement has very effectively carved out over the last 20-30 years. Instead we have to carry those concepts and ideas into the wider arena of not only social policy but also economic policy.” Disabled people and their organisations have much to offer to these wider debates and it is through doing so that I believe there is a significant opportunity to position the ideas that are central to disability rights not as problems not-yet-fixed or as aspirations from a by-gone era, but as fresh solutions for the days ahead.

In my view, the UNCRPD challenges us to shift from a social welfare approach to a human development approach to social policy, and from the idea that ‘every man is an island’ to an understanding of people’s lives in the context of their existing or potential relationships and personal networks.

Embracing this understanding would herald a series of profound changes in law, policy and practice. Compensatory welfare states would be replaced with capabilitiesbuilding social investment states which nurture individual agency and which through doing so harness the innovations of individuals and their appointed advocates to generate new solutions. Power would be devolved to people to self-direct their own support in order to be the author of their own lives. We would rid ourselves of the wasteful bureaucracy and fragmentation which plagues many disabled people’s efforts to lead an ordinary

life by re-purposing and then integrating health, social care, benefits and employment support around the individual unified ‘access to living’ schemes. A decisive shift from the high costs and perverse incentives imposed by the liability-driven culture of adult safeguarding would give way to a liberating model of ‘supported risk-taking’.

Focusing on the rights of disabled people to ‘be in the world’ challenges us to focus not only on closing down oppressive institutions, but on how to open up liberating communities.

It requires us to think beyond the repeal of plenary guardianship laws to consider how concerted social action might empower people to exercise and maintain capacity.

It requires us to think not just about the nature of transactions between individuals and services, but about how people can enter, contribute to and draw from the networks of relationships around them. Such thinking can be glimpsed in the most progressive approaches to supported decisionmaking, such as Representation Agreements in British Columbia or the Indian Persons with Disabilities Act and in emerging thinking regarding the right to live independently and to be included in the community such as in the Scotland Self-Directed Support Act 2013.

These glimpses of promising practice have yet to be fully realised and that is precisely why they are not victims of the crisis. Instead, they provide a plausible way forward, via which the pursuit of disabled people’s rights to full participation can be allied to the search for more effective and sustainable ways to draw upon and make good use the full range of resources around us.

Most importantly of all, such thinking helps to make hope possible rather than despair convincing. ★

On 25 October 2013, Inclusion Europe organised a Strategic Policy Seminar for its members in Brussels.

The event focused on the status of the implementation of the UN Convention on the Rights of Persons with Disabilities in Europe. Besides the impact of the financial and economic crisis on the progress in disability policies, the participants also discussed strategies to improve the participation of people with intellectual disabilities in the implementation of the Convention and its monitoring. In addition to Neil Crowther, keynote speakers included Gauthier de Beco (Catholic University of Leuven), Mario Nossin (Dutch Coalition for Inclusion), Connie Laurin Bowie (Inclusion International) and Camille Latimier (Inclusion Europe).

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New Paths to InclUsion Network: Searching for keys to inclusion in the community Dr. Stefan Doose Fachschule für Sozialpädagogik Lensahn [EN] The ‘New Paths to Inclusion’ Network is a group of people from many different countries. They look for best ways to help people with disabilities live included in the community. They want to make sure that every person with a disability gets the support he or she needs. They have a website: www.personcentredplanning.eu [FR] Le groupe de «nouveaux chemins vers l’inclusion» est un groupe de personnes de pays différents. Ils cherchent les meilleurs moyens de promouvoir l’inclusion des personnes handicapées à être inclus dans leurs communautés. Ils veulent faire sorte que toutes les personnes handicapées intellectuelles reçoivent le soutient dont elles ont besoin. Ils ont un site: www.personcentredplanning.eu [DE] Das Netzwerk „Neue Wege zur Inklusion“ ist eine Gruppe von Menschen aus verschiedenen Ländern. Sie suchen nach den besten Möglichkeiten, Menschen mit Behinderungen zu helfen, als Teil der Gemeinschaft zu leben. Sie wollen sicherstellen, dass jeder Mensch mit Behinderung die Unterstützung bekommt, die er braucht.

Das ist ihre Webseite: www.personcentredplanning.eu In the New Paths to InclUsion Network, 19 organisations from 13 European countries and Canada work together to strengthen their person centred planning capacities and to deliver more individualised and person centred support embedded in the community (www.personcentredplanning.eu). It is a European project funded within the Leonardo da Vinci program from 2013 to 2015. It grew out of the New Paths to Inclusion project, where from 2009-2011, inclusive training in person centred planning with 6 modules and a comprehensive training pack were developed in the Czech Republic, Austria and Germany (for more information see http://trainingpack.personcentredplanning.eu/index.php/en/).

The New Paths to Inclusion project showed that the inclusive training in person centred planning introduced person centred thinking and a range of helpful person centred planning tools, but that greater change of the support organisations and a stronger investment in inclusion in the community is needed.

In consequence, the New Paths to InclUsion Network focuses not only on further developing the inclusive training in person centred planning and bringing it to new countries like Croatia, Portugal, Romania, Slovakia, Spain, Luxembourg and Switzerland, but also on investing in three additional keys to inclusion: 1. Developing person centred services 2. Fostering community inclusion and development 3. Providing inclusive training for all

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While the first key deals with the issues of organisational change towards a more person centred service delivery and the third key focuses on further developing inclusive training opportunities, the second key looks for opportunities to open up communities for inclusion. The leading question of the New Paths to InclUsion Network is: “How can we make sure that support services respond to the individual needs of persons with disabilities and empower them to take part in the community?”

To achieve a transformative change towards empowering community-based support, the Network is guided by an innovative model of social change - Theory U - developed

by Otto Scharmer (www.presencing.com). The theory demonstrates an understanding of social innovation that calls people to move outside their familiar assumptions and patterns of behaviour. Instead, it offers a series of practices and social techniques to move outside the taken for granted assumptions.

Theory U ■ starts with a search for new ways of understanding (Sensing), ■ continues with discovering the best possible emergent future (Presencing), and ■ proceeds by acting on this different kind of learning to discover new ways to move into that future (Realizing).

These are some of the interesting examples of project ideas that we encountered besides good community living and supported employment projects.

To get a deeper understanding of what it takes to make community inclusion work, we conduct three so called ‘sensing journeys’ with a small group of project partners to different places in Europe.

There is a range of different methods that facilitate learning in each of these phases (see http://www.presencing.com/ presencing/tools) like stakeholder interviews, sensing journeys or prototyping.

In this article we want share some of our first learning with regard to community inclusion.

We started with searching for good examples of community inclusion projects throughout Europe. And we are still looking for good examples that will be presented on our project website during the year 2014. So if you have a good community inclusion project in your region, please contact me (stefan.doose@bbs-old.de).

We got outstanding examples like the project Yyteri for all in Finland, where they made services at the Yyteri beach accessible for all through an inclusive physical and social environment (www.samk.fi/yyterisymposium). For example, they adapted windsurfing equipment so that it can be used by people with physical impairments and developed solutions for participation in hiking, horse-riding or kayaking.

Our first sensing journey brought us on 12-13 November 2013 to Hamburg in Germany. Sensing journeys are one of the methods of the Theory U. They are designed to experience the system through the lens of different stakeholders. The participants undertake small journeys to different places in that system. We took a series of immersion, listening, inquiry and dialogue activities to explore how inclusive activities in the community are working. We were searching for prototype ideas that could catalyse profound change in the system towards inclusion.

Could we extract some ingredients that are needed to create inclusion in the community?

We started our morning with a breakfast in the StadthausHotel, an inclusive accessible hotel where people with and without intellectual disabilities work now for over 20 years.

We experienced a very friendly service and recognised how important it is to have friendly and accessible places in the community where guests are welcome.

In Wales, Menter fachwen developed the Walk & Discovery projects where people with an intellectual disability interviewed elderly people in the region and collected information to gather stories and preserve the wealth of knowledge of this generation about this region. They developed easy to use and easy to read maps of the villages in the North West Wales and different guided walks (http://www.menterfachwen.org.uk/).

The next project ‘Auf Achse’ (On the road) from Leben mit Behinderung Hamburg brought us to the 10th floor, where Detlef Scheele, the minister for work, social affairs, families and integration in Hamburg, has his office. Once a week on Tuesdays, his team is supported by three people with significant abilities and their job coaches to prepare the table for weekly ministerial meetings. What is unusual about this small supported employment project is the target group: people with very high support needs who have traditionally not been seen as able to work, not even in a sheltered workshop, and who stay in a day activity centre. Within the project, 70 persons from different day centres all over the city go to workplaces in 38 companies. They start small, working once a week for a couple of hours, but making a big difference in the perceptions of their co-workers and in the whole service system. The project redirected the view and the energy of organisations towards opportunities in the community and they found more than they expected.

It needs professionals who are allowed to be brave and able to knock on doors to open them up. It changes and challenges our perceptions of what is possible for people with high support needs who were not seen as capable of work.

Work is possible and it is much more possible than we thought.

The barrier to more hours in the community was interestingly not the lack of opportunities in the community but the limitation of staff time and organisational resources.

In the Czech Republic the Black and White project of QUIP – Association of Change and SPMP – Inclusion Czech Republic aims to create effective circles of support to empower people with intellectual or psychosocial disabilities to make their own decisions and involve them in the communities where they are living.

Our next stop was the Freiwilligenagentur Nord, a volunteer agency which exists in many parts of Hamburg. People can go there and get information about a variety of possibilities to work as a volunteer in the community. The interesting point is that they include people with disabilities or migrants also as volunteers who can contribute to their community and not

In Portugal, the project Meet your neighbours – a tactile experience from NUCLIO – Interactive Astronomy Nucleus developed tactile astronomy models for sighted and blind students to experience astronomy together (http://nuclio.org/astroneighbours/).

In Israel, AKIM worked with an Inclusion-Index to encourage local authorities to create and maintain inclusive activities.

A number of circles are used to involve all the stakeholders in the process.

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only as a target group for voluntary work. People are willing to spend their time on voluntary work but they want meaningful, interesting and valued work that matches their interests, time and abilities. A key to successful voluntary work seems to be a good culture of appreciation that goes beyond sending Christmas cards at the end of the year.

One of the interesting projects volunteers can engage with in Hamburg is the ‘Hamburger Kulturschlüssel’ (a cultural key to Hamburg). The idea is quite simple – a theatre, a concert hall, a museum or a sports club gives at least two tickets for free to the organisation five weeks before the event.

The organisation matches people with support needs and low income, a so-called ‘Kulturgenießer’ (cultural connoisseur), with a volunteer as a cultural companion who spend an evening together for free, based on the same interests. There is an introduction for people interested in participating in this project twice a year. The idea is to have at least once a month the opportunity for cultural participation. During the last year 2500 tickets from 65 cultural organisations were given to 250 cultural connoisseurs and 100 cultural companions. The users were older people, people with disabilities, migrants and young people with low income both as cultural connoisseurs and cultural companions. An idea like this is simple but the matching process is complex. You need a good structure, rules and charming engagement to make this happen.

We spent the next morning in an inclusive school, the Bugenhagen Schulen, a private protestant school which was in former times the school of an institution. Now it is a very popular inclusive private school. About 22 kids learn together in mixed age classes (grades 1-3,4-6,7-9) supported by a team of teachers and educators. We found a school with an open and welcoming atmosphere where kids and teachers really like to be. Very clear rituals and structure seem to give room for different learning activities in the whole group, in small groups and in self-study time. There was a lot of movement and exercises and long breaks in-between followed by intensive working time. We have seen kids taking care of each other and explaining each other what they have learned. Not only the kids like to learn and work in teams, it seemed also true for the teachers and educators. Maybe that is another key to inclusion.

Our last excursion brought us to Q8, a community development project of the Ev.Stiftung Alsterdorf. Alsterdorf used to be a big institution for people with disabilities in Hamburg. During the Nazi time over 600 inmates were deported and killed; only 50 people survived. After the World War, the capacity of the institution grew to over 1 200 people.

In the mid-1970s, the institutionalised living conditions were made public and caused a big public embarrassment.

The situation began to change significantly in the 1980s but it took until 2001 to open up the institution. Today there is a public market place, a restaurant and a shopping centre where formerly was the centre of the institution. Over 1800 people with disabilities are now living all over the city.

With Q8, Alsterdorf invests strategically in 6 quarters of the town. A community organiser facilitates projects in the communities. In the first phase they got to know key persons in the quarters and were analysing the situations in

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During the sensing journey, the project team learned about successful community inclusion projects in Hamburg. the quarters. In the second phase they brought people together to develop ideas of what was needed in the quarters and in the third phase they implemented inclusive projects. They organised for example a forum Mitten in Altona (In the middle of Altona) with citizens and organisations creating ideas on how a new part of the city, built on former railway tracks in the middle of the quarter, could become an attractive, accessible and inclusive place for everybody. Together with 20 other organisations they developed ‘altonavi’, a one-stop centre where citizens can get an overview of all social services and counselling opportunities in the quarter. It also serves as a local voluntary agency. Q8 shows that organisations not only need to invest invest in building; they also need to invest in neighbourhoods and communities to make them inclusive.

This requires someone like a community organiser who cares and connects people.

We need to find and create interesting places in the community where people can contribute their gifts and talents. Gerald Hüther, a famous German neurobiologist, recently published a small book called ‘communal intelligence’ where he states that we need a new culture of relationships. A culture where everybody feels that their gifts are needed, so that we can connect and learn from each other and grow together. Beth Mount, a pioneer of person centred planning who joined us in our learning journey, said that the field is as fertile as the connection between people. Maybe that is a good hint to what we need to let inclusion grow. ★

Hear our Voices: A perspective on children with intellectual disabilities Camille Latimier Inclusion Europe [EN] Inclusion Europe started a new project called ‘Hear our voices’. The project is about helping children with intellectual disabilities speak up for themselves. Like any other children, they have the right to say what they think and take part in decisions. During the project, we will look for ways to help children with intellectual disabilities speak up.

We also want to make sure that adults take their opinions seriously.

[FR] Inclusion Europe a commencé un nouveau projet appelé « Entendez nos voix ».

Ce projet veut aider les enfants handicapés intellectuels à parler pour eux-mêmes.

Comme tous les autres enfants, ils ont le droit de dire ce qu’ils pensent et de prendre part aux décisions qui les concernent. Pendant la durée de ce projet, nous allons chercher de nouvelles manières pour aider les enfants handicapés intellectuels à parler pour eux-mêmes. Nous voulons aussi faire en sorte que les adultes prennent leurs opinions au sérieux.

[DE] Inclusion Europe hat ein neues Projekt begonnen. Bei dem Projekt geht es darum, Kindern mit geistigen Behinderungen zu helfen, für sich selber zu sprechen. Genau wie jedes andere Kind, haben sie das Recht zu sagen, was sie denken und Entscheidungen mit zu treffen. In dem Projekt werden wir nach Möglichkeiten suchen, Kindern mit geistigen Behinderungen zu helfen, für sich selber zu sprechen. Wir wollen auch sicherstellen, dass Erwachsene ihre Meinungen ernst nehmen.

While developing its policy strategies for children, Inclusion Europe identified the need for a better understanding and overview of the implementation of the UN Convention on the Rights of the Child (UN CRC), necessary to influence mainstream child rights policies for children with intellectual disabilities. The ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) by almost all Member States as well as by the EU has also provided a new opportunity to implement the rights of children with intellectual disabilities.

In a Europe-wide research ‘Children’s Rights for All!’ the implementation of the UN Convention on the Rights of the Child for children with intellectual disabilities has been highlighted as scarce and insufficient.

The research showed that participation and the right to be heard is one of the most hindered areas of human rights.

Under Article 12 of the UN CRC, “States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.”

The provisions on the right of children with intellectual disabilities to participate are poor or simply non-existent.

Huge barriers arise from preconceived ideas and prejudices which are strongly rooted in society and in the community.

Children with intellectual disabilities are seen as less credible and their words are not taken seriously.

Inadequate measures for children with intellectual disabilities hinder their chances to be heard in the context of abuse, bullying, education or health, among other areas. Not being able to understand the full extent of a trauma or a problem can result in failure to adequately protect the child and address his or her needs.

As a follow-up of this European research, Inclusion Europe embarked on a new project on child participation.

The project ‘Hear our Voices!’ aims to strengthen and increase direct participation of children with intellectual disabilities, one of the guiding principles of the Convention on the Rights of the Child.

Inclusion Europe and Eurochild have started this project with three national partners from Spain (Down Syndrome Foundation Madrid), Czech Republic (Quip – Association for

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The project ‘Hear our Voices’ aims to increase participation of children with intellectual disabilities in the community and in decision-making.

Change) and Bulgaria (The Cedar Foundation) and in collaboration with Lumos.

The project 'Hear our Voices' will develop the support mechanisms needed to increase the participation of children with intellectual disabilities in their communities, be it in decision-making, school or leisure activities.

In the first year of the project, the partnership has been mapping available information and collecting evidence from law, policy documents and practice on child participation in different areas and from all European countries in order to increase understanding of how children with intellectual disabilities can be supported to effectively and meaningfully participate. The results of this research will be compiled into a good practice report on children participation.

Building the collection of existing resources and knowledge, the project partnership will continue its work to empower and train children with intellectual disabilities to directly participate in all issues that concern their lives and ensure their participation together with other children, through awareness-raising among their non-disabled peers as well as among children's professionals and policy-makers.

This activity will take place at school, in day-care services and small group homes as well as in large residential care homes in the process of transition to community-based care.

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In these settings, training material and model cases will be developed and tested by the national partners in Bulgaria, Czech Republic and Spain.

One of the main objectives is to ensure the visibility of children with intellectual disabilities in child rights policies, legislation and practices at national and European level.

In particular, we will aim to strengthen the links between the EU Agenda on children’s rights and EU efforts to take account of the Convention on the Rights of Persons with Disabilities. To make this happen, the project partnership foresees to organize several advocacy events.

The website of the project www.childrights4all.eu will grow in the next two years and offer information and specific tools to implement child participation in practice at schools or in child care services.

The ‘Hear our Voices’ project is funded by the Fundamental Rights & Citizenship Programme of the European Union. ★

Europe in Action 2014: Growing up with an intellectual disability 15 – 17 May 2014, Belfast, Northern Ireland

[EN] Inclusion Europe’s big conference will be in Northern Ireland. It will take place on 15-17 May 2014. It will be about growing up with an intellectual disability. You can read about the conference on the website: www.europeinaction.org [FR] La grande conférence d’Inclusion Europe aura lieu en Irlande du Nord. Elle aura lieu les 15, 16 et 17 mai 2014. Elle sera sur le thème de grandir avec un handicap intellectuel. Vous pouvez lire plus sur cette conférence sur le site : www.europeinaction.org [DE] Inclusion Europes große Konferenz wird in Nordirland stattfinden. Die Konferenz wird vom 15. bis 17. Mai 2014 stattfinden. Es wird darum gehen, wie es ist, mit einer geistigen Behinderung aufzuwachsen. Sie finden hier mehr über die Konferenz: www.europeinaction.org

International learning, exchange, fun and action around the theme ‘Growing up with an intellectual disability’ will be on offer for participants of the ‘Europe in Action’ conference 2014 in Belfast. The conference will explore the impact of intellectual disability on the lives of individuals and families; the approaches which make a difference and help transform their lives; and what it takes to build inclusive and welcoming communities. Children and young adults with intellectual disabilities and their families face a lot of special challenges that they have to overcome. Early intervention, education, finding friends and training for a job are but some of these challenges. Many families struggle to offer their disabled child the best opportunities while maintaining a family life where brothers, sisters, parents and others who make up their family enjoy time together and a life of their own.

At this conference participants will be offered interesting speakers, opportunities to share their own learning or gain insights through activity and new experiences, including dance, music, art and new media. The last day of the conference will feature a Family Fun Day where conference participants and local families from Northern Ireland will meet around information stalls, demonstrations and shared inclusive activities.

The conference will also be hosting training sessions and a Directors’ Meeting on 14 May as well as the General Meeting of the European Platform of Self-Advocates (EPSA) and the Annual General Assembly of Inclusion Europe.

Further information about this event and registration are available at www.EuropeInAction.org. ★

Interactive sessions will allow discussion from different perspectives: ■ ‘About me’ will focus on the growing child or young person with themes including early intervention, education, identity, advocacy, and becoming independent.

■ ‘About us’ will be about family life, playing and learning together, strengthening families, how families support decision-making, healthy family relationships, and stories about the superheroes in our lives.

■ ‘About you’ will focus on community life, themes like the best start in life, me and my neighbourhood, or building inclusive and welcoming communities.

Mencap team in Northern Ireland is hosting 2014 annual congress of Inclusion Europe.

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Inclusion Europe The European Association of Societies of Persons with Intellectual Disabilities and their Families Rue d’Arlon 55 ■ B–1040 Brussels Tel: +32-2-502.28.15 ■ Fax: +32-2-502.80.10 Email: secretariat@inclusion-europe.org

www.inclusion-europe.org www.e-Include.eu Find us on

www.facebook.com/inclusioneurope www.twitter.com/inclusioneurope www.youtube.com/inclusioneurope www.flickr.com/inclusioneurope

Inclusion Europe is a non-profit organisation that campaigns for the rights and interests of people with intellectual disabilities and their families throughout Europe. Respect, Solidarity and Inclusion are the fundamental values shared by all members of our movement of and for people with intellectual disabilities and their families.

Inclusion Europe is represented in 40 countries by national and regional organisations of parents and self-advocates. We are represented in: Albania Austria Belgium Bosnia-Herzegovina Bulgaria Croatia Cyprus Czech Republic Denmark Estonia Faroe Island Finland France Germany Greece Hungary Iceland Ireland Israel Italy Latvia Lithuania Luxembourg Former Yugoslav Republic of Macedonia Malta Moldova Netherlands Norway Poland Portugal Romania Russia Scotland Serbia Slovakia Slovenia Spain Sweden Switzerland United Kingdom

Photos: Archive of Inclusion Europe Design: Orangemetalic Call for contributions If you would like to inform the network about your events, projects or campaigns connected to intellectual disability issues, please send us a short description of such activities and we will include it in the next issue of our newsletter or post it on the website. Please send all contributions to information@inclusion-europe.org.

This publication is supported by the European Union Programme for Employment and Social Solidarity – PROGRESS (2007-2013).

The Contracting Authority is the European Commission.

This programme is implemented by the European Commission.

It was established to financially support the implementation of the objectives of the European Union in the employment, social affairs and equal opportunities area, and thereby contribute to the achievement of the Europe 2020 Strategy goals in these fields.

The seven-year programme targets all stakeholders who can help shape the development of appropriate and effective employment and social legislation and policies across the EU-27, EFTA-EEA and EU candidate and pre-candidate countries.

For more information see: http://ec.europa.eu/progress

The information contained in this publication does not necessarily reflect the position or opinion of the European Commission.