Include 2014

Inclusion Europe

Content

Include 1/2014

2014: An overview of progress made towards the implementation of the CRPD ...........................................................................................................................3 Able to Include – Groundbreaking project to ease online communication for people with intellectual disabilities

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Safe Surfing – New project to help people with intellectual disabilities use the Internet safely ....................................................................................................................................................8 Hear Our Voices: Participation leads to inclusion .......................................................................................................................10 How Child Participation can transform the lives of young people with intellectual difficulties .............................................................................12 The world listens to children with intellectual disabilities .............................................................................14 Sharing experiences on inclusion and Community living – a personal account .........15 The right to vote as a gateway to a functioning society .........................................................................................16 Europe in Action 2015: Where fun and policy mix to create tangible change ....................................................................................................18

Editorial At the end of every year, Inclusion Europe looks back at the work it did.

Our work must always help our members and people with intellectual disabilities.

Inclusion Europe wants to make life better for people with intellectual disabilities.

It 2014, it did this in many ways.

Inclusion Europe created a website to help people support persons with intellectual disabilities to take decisions.

It also taught children with intellectual disabilities how to participate and become self-advocates.

Inclusion Europe is also part of two projects.

The projects will help people with intellectual disabilities communicate online better and stay safe on the Internet.

At the end of every year, it is almost customary to look back on the work performed and activities developed, and count our instances of success. Luckily, Inclusion Europe could boast quite a few – the best attended United Nations side event comes to mind, along with two completed projects and one more grant awarded. While achievement is definitely important, this year, we would like to focus on something more meaningful, if not more difficult to quantify – value. When working for a cause, for change in both actions and perceptions, and, more importantly, for people, one must always assess whether our work was valuable for our members, for policy-makers, and particularly for our target group.

Our campaign on promoting supported decision-making is one instance where we feel we are making a difference.

Although only launched at the end of October, our Choices website has received nearly 11,000 page views, from not only Europe, but also Australia, the United States, Argentina and India. This proves perceptions are slowly changing on the issue of guardianship for people with intellectual disabilities, supported decision-making is increasingly becoming the norm, and practitioners are actively researching alternative methods to guardianship.

Equally, our Hear our Voices project on child participation had an impact on both our beneficiaries and on United Nations

officials. In this publication, you can read the story of Diana, a young Bulgarian girl with an intellectual disability, who, as a result of the project, learned to make decisions and became much more self-confident in the process. Our young self-advocates also showed members on the United Nations CRPD and CRC Committees that children with intellectual disabilities can and are very much willing to participate, and thus should be given all tools necessary to be able to do so.

Inclusion Europe has also branched out into a more technical area with its two new projects, Able to Include and SafeSurfing. They both aim to offer practical tools for people with intellectual disabilities. While Able to Include will develop an accessibility layer, to make written language accessible for people with intellectual disabilities, Safe Surfing will offer live training in the areas of data protection and safe online behavior.

We enter 2015 will a lot of new plans, among them a new project on child rights and a Global Development Leaders campaign. As always, we move forward with confidence and drive, hopeful that our work is supporting yours, and giving our all for the cause we believe in.

Geert Freyhoff Inclusion Europe Director

2014: An overview of progress made towards the implementation of the CRPD Camille Latimier Inclusion Europe This year, an important piece of law was adopted.

This is called the General Comment on Article 12.

The General Comment says that people with disabilities cannot have their legal capacity taken away.

They cannot be given guardians to make decisions for them.

Instead, people with disabilities should be supported to make their own decisions.

The year 2014 has been marked by the adoption in April of the first General Comment on Article 12 of the United Nations Convention on the Rights of Persons with disabilities (UN CRPD), tackling the most challenging but crucial article of the CRPD. The Committee on the Rights of Persons with Disabilities gave an authoritative interpretation of the treaty text, to clarify the reporting duties of State parties with respect to certain provisions, and also suggest approaches to implementing treaty provisions related to Article 12. As a draft General Comment had been published in October 2013, Inclusion Europe together with several of its members, and with Inclusion International, submitted contributions to the draft and asked the Committee for further clarifications. The final text of the General Comment reminds us about the history of legal capacity and the restriction other groups, such as women, had to face, noting that people with disabilities are still “disproportionally affected by substituted decision-making regime and denial of legal capacity.” ” The General Comment also states that legal capacity includes the capacity to be both a holder of rights and an actor under the law. “Legal capacity to act under the law recognizes that person as an agent with the power to engage in transactions and create, modify and end legal relationships,” the Comment reads. The General Comment also clarifies the concepts of legal and mental capacity – which are often confused- and states that “mental capacity refers to the decision-making skills of a person, which naturally vary from one person to another and may be different for a given person depending on many factors, including environmental and social factors.“ The Committee further refers to the State party reports examined so far, notices that it is still on the basis of a disability or diagnosis that legal capacity is removed. Therefore, the Committee strongly reiterates that under Article 12, perceived or actual deficits in mental capacity cannot be used as justification for denying legal capacity.

The Committee, however, also gives a definition of what support means. Support can be both “formal and informal”,

and can constitute “arrangements of varying type and intensity”. The Committee also suggests a list of key elements to comply with Article 12. For example, support to exercise legal capacity must be available and accessible to all, and must be provided at a nominal or no cost for persons with disabilities. Moreover, support and communication needs should never be a barrier to exercise legal capacity and the legal recognition of supporters should be available. Also, no other right can be limited while using support in decisionmaking and the person must also have the right to refuse or change his/her support. Finally, all decisions must respect the person’s rights, will and preferences. This is how the Committee describes the main difference between substituted and supported decision-making: substituted decision-making refers to any decision made on what is believed to be the perceived “best interests“ of the person concerned as opposed to being based on “the person’s own will and preferences”.

In the most difficult cases, the Committee states that “where after significant efforts have been made, it is not practicable to determine the will and preference of an individual, best interpretation of will and preferences” must replace determinations of best interest. The “best interests” principle is not a safeguard under Article 12 in relation to adults.

Finally, the General Comment sends a very strong statement to State Parties, being clearly against the creation of parallel systems. “The development of supported decision-making systems in parallel with the maintenance of substitute decision-making regimes is not sufficient to comply with article 12 of the Convention”, the Comment reads. State Parties are obliged to replace substituted decision-making regimes by supported decision-making systems by both abolishing the old system and by developing alternatives.

The publication of this landmark interpretative text brought Inclusion Europe to further develop and reinforce its activities around the implementation of Article 12.

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■ In May, our Strategic Policy Seminar for Leaders of the Inclusion Movement focused on participation of people with intellectual disabilities and their families in CRPD implementation and monitoring with a particular focus on the reforms and strategies around article 12.

■ In October, Inclusion Europe launched the Choices website, an online platform on practical models of supported decision-making. Available at www.right-to-decide.eu, Choices presents a range of supported decision-making models for people with intellectual and other disabilities, in a bid to offer sustainable, reliable and CRPD–compliant alternatives to guardianship. While there are many good practices available which can help supported decision-making, they are often scattered and hard to find. Choices therefore gathers and analyses the wealth of resources, making it easy for the reader to find the information they need, either by choosing the relevant area of life the model would be relevant to, or the type of support needed. Choices proves that efficient supported decision-making models could be built based on existing practices. As a framework which recognizes that all people make decisions with support, guidance or assistance from others, supported decision-making should become the norm in all European states.

■ Finally, in November, under the auspices of the Council of Europe, Inclusion Europe organized a Round table on Legal Capacity. While the day was framed by the General Comment on Article 12, the participants looked at European opportunities to enhance the right to legal capacity. The participants examined several best practices from Germany, Bulgaria, Spain and France, as well the activities developed by Inclusion

Europe and Inclusion International. The parents’ and people with disabilities’ perspective was also brought into the debate throughout the different presentations.

The year 2014 was also marked by the publication of the first Report on the implementation of the UN CRPD by the European Union by the European Union, which was released at the beginning of June. Similar to all States that have ratified this Convention, the European Union also has to report on its implementation to the CRPD Committee at regular intervals.

Mirroring the national experience, European NGOs provided a complementary and critical view about the implementation of the UN CRPD at EU level in an alternative report.

While Inclusion Europe welcomed the publication of the first Report on the implementation of the UN CRPD by the European Union, a comprehensive account of the measures taken by the European institutions to ensure that the rights of people with disabilities are considered in all relevant legislative proposals, Inclusion Europe has also found some parts of the document lacking a critical evaluation of the facts presented. For example, the 2008 proposal for an antidiscrimination legal framework in areas outside employment is mentioned as a legislative proposal, despite the process having been postponed because of failure to achieve consensus among Member States. In addition, the Commission had not given any indication about a follow-up to the EU Agenda for the Rights of Child, or any measures taken to align this Agenda to the CRPD provisions on children with disabilities. On the topics of legal capacity and political participation, the Commission had also taken a rather conservative approach by claiming a lack of legal competence. Not even in their area of competence, the fight against discrimination did the report mention any concrete steps to remove barriers for people with intellectual

Inclusion Europe Director and Human Rights Officer chair the CRPD monitoring seminar in Belfast.

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consult and involve persons with autism, intellectual and psychosocial disabilities. At policy level, the report asks for a review of the Europe 2020 strategy to include a specific strategy for the employment, social inclusion and poverty reduction of persons with disabilities with financial allocation, on the model of the EU Youth Guarantee with dedicated headline target. In addition, European DPOs demands that the EU adopts the proposed Article 19 Directive, as amended by the European Parliament, which aims to protect persons with disabilities (amongst other groups) against discrimination in social protection (including social security and health care), social advantages, education, as well as access to and supply of goods and services, such as housing and transport, while taking into account the specific situations of multiple discrimination and ensuring its compliance with the UN CRPD, in particular the recognition that the denial of reasonable accommodation as a form of discrimination.

Eilionóir Flynn, the Deputy Director of the Centre for Disability Law and Policy at NUI Galway, presented her work on the CRPD. disabilities under guardianship and allow them to access employment, community based services, or exercise their right to vote. With all the publicity given to the European elections, it was disappointing that political participation has not been acknowledged as an area where the EU could provide an impulse to end discrimination against citizens with disabilities.

While the report was clearly valuable, offering an extensive overview of policies related to the issue of disability in the Europe Union, Inclusion Europe believed the Commission could have taken a more proactive and ambitious approach, one that could have helped move the agenda forward.

Organisations of people with disabilities thus gave their own valuable input in an alterative report. Based on contributions from different European NGOs, among them Inclusion Europe, the European Disability Forum drafted the European Alternative Report on the implementation of the CRPD. Inclusion Europe has contributed to the chapter on legal capacity. Both the Alternative Report and the European Union official Report concentrate on the articles where the EU has legislative competence.

The alternative report contains a number of recommendations to the EU. One of the key recommendation is the development of guidelines for consultation with persons with disabilities and representative organisations of persons with disabilities, including of women, girls and boys and older persons with disabilities in the development and implementation of UN CRPD by the Commission, the Parliament, the Council of the EU and the European Council. These consultation guidelines should pay particular attention on how to

Participants in the CRPD monitoring seminar engaged in lively discussions.

This Directive should put in place a strong sanctioning and remedies mechanisms to punish non-compliance with higher penalties in cases of multiple and intersection discrimination. The reports also demands the development of a legally binding quality framework for communitybased services, including habilitation and rehabilitation services for persons with disabilities and linking it to the process of promoting active inclusion of European citizens with disabilities. Last but not least, the report makes recommendations for the EU public administration – it suggests to the EU to develop a broad and comprehensive strategy to mainstream the CRPD within the EU institutions and agencies’ instruments, policies and practices, taking into account the human rights based approach to disability. Staff with disabilities and staff who are carers of persons with disabilities should be involved in the planning, implementation, monitoring and evaluation of this Strategy. ★

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Able to Include - Groundbreaking project to ease online communication for people with intellectual disabilities Able to Include Partners A new project called Able to Include will help people with intellectual disabilities use social media and applications on the phone or tablet.

The internet is very useful for people with disabilities to talk to other people.

However, sometimes the internet and phone applications are not easy for them to use.

The project Able to Include will help fix this problem.

They will make tools that: ■ translate text into easy-to-read ■ translate text into voice ■ translate text into images technology could improve the lives of people with disabilities in multiple ways, such as easing their access into employment or aiding them in keeping contact with friends or loved ones, the software created for mass usage is simply not accessible for many people with intellectual or developmental disabilities.

Participants in the Thomas More focus group enjoying themselves while learning how to use applications on tablets.

Improving the world through passion and innovation might seem like a cliché, but it is exactly what partners in the Able to Include project are aiming to achieve.

The United Nations Convention on the Rights of Persons with Disabilities deems disability as resulting from the interaction between persons with impairments and attitudinal and environmental barriers which hinder their full and effective participation in society on an equal basis with others. While

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Therefore, to break down some of these barriers to enjoying full access to the information society, and to promote the social inclusion of people with intellectual and developmental disabilities, the Able to Include project is creating an open-source and context-aware accessibility layer. Integrated with existing and future ICT tools, particularly in mobile applications, the accessibility layer will help people with intellectual disabilities to better interact with the information software.

A user-centred accessibility layer The User Centred Accessibilty Layer will empower our target group to use internet and social media applications on their phone, tablets and personal computers. This will be done by providing text simplification, pictograph conversions and text-to-speech services that will make the applications extremely easy to use.

The system will be tested in three pilot studies involving real life situations, implemented in Spain, Belgium and the United

Kingdom. These trials will validate the effectiveness of the new system in several scenarios that reflect the most important areas that a person needs to live independently and find fulfillment as an individual - to socialize in the context of the web 2.0, to travel independently and to be able to work.

To produce the Accessibility Layer, the project will also involve users with intellectual and developmental disabilities in the design process of the Accessibility Layer itself.

A spotlight on focus groups In October and November, Able to Include partner Thomas More held their first two rounds of focus groups designed specifically for people with intellectual disabilities. Working together with applied psychology students who will write their theses on the focus groups, they interviewed many enthusiastic participants who were happy to discuss their experiences with social media.

Thomas More also trained participants on all the possibilities that using social media could open up for them. Occupational therapy students created a game for them that included three types of tasks: a “to do” task, multiple choice questions and a bonus challenge. The tasks included learning how to work with a tablet, opening the right application, posting a picture on Facebook, leave a comment on someone’s profile, or having a video conversation. While learning and enjoying themselves, participants helped the organisers collect a large amount of relevant data.

An innovative translation tool Meanwhile, the Centre for Computational Linguistics (CCL) at the University of Leuven has been working on the creation of fully automatic tools to convert natural language texts into pictographs and pictographs into natural language texts.

Three natural languages (Dutch, English and Spanish) and two pictographic languages (Beta and Sclera) are currently involved in the translation process. By developing systems for translating text to pictographs and vice versa, which make websites and mainstream applications, such as social media and web mail, accessible, the CCL will contribute to the einclusion of persons with intellectual disabilities. Moreover, supporting written text with simplified images allows organizations and companies to easily reach out to a large group of people that previously had none or only very limited access to digital written content.

For the text-to-pictograph translation tool, natural language text first undergoes a shallow linguistic analysis, such as performing basic spelling correction, determining the correct grammatical category for each word and finding its lemma or dictionary form. With this information, every word can be looked up in a language-specific WordNet database. WordNet databases contain, among others, groups of synonymous words that have been manually linked to thousands of Beta and Sclera pictographs by the CCL. The tool will attempt to retrieve a pictograph for every single content word of the initial sentence.

If no pictograph is found, WordNet relations will be used to find more general concepts or concepts that carry the opposite

meaning. An algorithm will finally output the most likely sequence of pictographs for every written input sentence.

The pictographic language being essentially a simplified language, a lot of grammatical information (articles, the distinction between singular and plural, temporality) gets lost in the translation process. Obtaining a clear visual representation of textual meaning is therefore a challenging task.

Pictograph-to-text translation is useful in those cases in which cognitively impaired users communicate with people who do not need pictographic support and use natural language. As pictographs do not contain a lot of grammatical information, finding a good textual translation for a sequence of images is not an easy exercise. The pictograph-to-text tool generates a list of possible word forms for every pictograph and attempts to find the most likely combination of these word forms on the sentence level, by relying on huge amounts of previously written text.

The CCL has presented its current work on pictographic communication at various conferences, such as Coling 2014 in Dublin and the Marguerite-Marie Delacroix Symposium in Brussels, where a lot of interest was generated among scientists and educators. Its first web demo for text-to-pictograph translation, http://webservices.ccl.kuleuven.be/picto/, has received a considerable amount of positive feedback from the users, who are very eager to see the final results. In the months to come, the CCL will continue on improving the tool in order to deliver an innovative translation system for the targeted group.

The promise of technology All in all, the Able to Include project is truly ground-breaking.

The three key technological tools partners are developing will decode information, making regular written language accessible for people with intellectual disabilities.

Therefore, Inclusion Europe and its partners in the Able to Include project are looking to the future with hope. "People with intellectual and developmental disabilities are equal members of society and should be treated as such. They should have the same opportunities as everyone else to access the information society, and should be supported in doing so," said Inclusion Europe Director Geert Freyhoff.

"Technology can improve the lives of people with intellectual disabilities, and the accessibility layer can help in achieving that," he added.

It is paramount for software developers to create accessible applications that people with intellectual disabilities can also use, an approach which is not only morally responsible, but makes sense from an economic point of view. As technology is a cost-effective way to complement support services, people with intellectual disabilities should not be forgotten in the creation and implementation of new tools. ★

The ABLE-TO-INCLUDE project has received funding from the European Union's ICT Policy Support Programme as part of the Competitiveness and Innovation Framework Programme under Grant Agreement No. 621055.

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Safe Surfing – New project to help people with intellectual disabilities use the Internet safely Silvana Enculescu Inclusion Europe Inclusion Europe and other organisations started a project.

The project is called SafeSurfing.

SafeSurfing will help people with disabilities use the Internet in a safer way.

Even though the internet is useful in many ways, sometimes it can be dangerous.

Examples of the dangers of the internet are people stealing personal information and people hurting other people.

People with disabilities are especially at risk of being hurt.

To stop this, the SafeSurfing project will teach people with intellectual disabilities to use the internet in a safe way. the European Commission (EC) to receive an action grant under the Fundamental Rights and Citizenship programme, ranking 7th out of more than 360 applications from across the Member States.

The project builds on the idea that we, knowingly or unknowingly face many dangers when simply using the Internet. With 17 per cent of Europeans falling victim to identity theft every year, data protection is a major problem for all European citizens, and particularly for people with intellectual disabilities.

Partners chose a positive and optimistic logo for the project.

With data protection deemed as a fundamental right in Europe, and Data Protection Authorities calling for improved digital literacy and privacy education, Inclusion Europe’s new project is not only beneficial for people with intellectual disabilities, but also very timely in terms of policy development.

Entitled SafeSurfing! Data protection for young people and adults with intellectual disabilities, the project was selected by

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While the use of technological tools was one area which people with intellectual disabilities were particularly excluded from, the past years have luckily seen a major increase in people with an intellectual disability using technology to live more independently and more included in society. Whether to keep in contact with friends, find information online, or search for job opportunities, using the Internet and mobile applications greatly benefits people with intellectual disabilities in all aspects of their lives.

Unfortunately, it also puts them at a much higher risk than the general population. Whether due to major difficulties in obtaining valid legal consent from people with intellectual

disabilities, problems with understanding redress mechanisms, or even the simple fact that accessing easy-toread information could identify a user as having an intellectual disability, people with intellectual disabilities are more vulnerable online, and more prone to suffering abuse.

Ismail Kaji, a Pariamentary Assistant as Mencap, who also has an intellectual disability, put it plainly: “People using online banking and other websites might not know where the information they have given has gone. It worries me a lot and I can’t stop worrying.”“People online can pretend to be a company and get information from people. This makes me feel unsafe. It is hard, I don't know who to speak to or where to go for support,” he added.

Therefore, Inclusion Europe, together with Mencap, FEAPS, ANFFAS and PSOUU will train people with intellectual disabilities on data protection and on safe online behavior, to ensure members of our target group are provided with the personal support and knowledge they need to decide what information they want to share with others. Therefore, within the framework of the SafeSurfing project, partners will reach more than 1000 people with intellectual disabilities directly, by using interactive online training sessions that offer participants the possibility of asking questions in real time.

Moreover, thousands more will benefit from the five training videos on several areas of data protection that will be produced and shared by SafeSurfing Partners.

The videos will address issues such as: ■ awareness raising about issues of data protection for people with intellectual disabilities, especially focusing on social media and mobile devices ■ determining what people with intellectual disabilities want to share about themselves

■ setting up Facebook and other social media to protect the privacy of persons with intellectual disabilities ■ data protection on the Internet ■ challenges and opportunities of mobile devices for people with intellectual disabilities.

The video topics stemmed from both research and from an online campaign Inclusion Europe and project partners conducted on their Facebook and Twitter pages. Answers provided a glimpse into both the challenges and the opportunities facing people with intellectual disabilities using the Internet. For example, participants in the campaign shared concerns of having their bank details stolen, of unclear website terms and conditions and of not understanding the subtlety of language. Carers and family members of people with intellectual disabilities worried about online abuse and dishonest behavior, as well as about bullying and online predators. However, they also believed there is a fine line between keeping a person with an intellectual disability safe and invading one’s privacy. On a positive note, participants also commented on setting up and maintaining support groups on social media and making lasting friendships online.

No full inclusion will take place until people with intellectual disabilities are able to enjoy all aspects of life on an equal basis with others. Supporting people with intellectual disabilities in using the internet safely could have a huge impact on their level of independence, their well-being and their sense of ownership. ★

The SafeSurfing Project is carried out with support from the Fundamental Rights and Citizenship Programme of the European Union.

Partners in the SafeSurfing project welcomed a successful first Management Meeting in Brussels.

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Hear Our Voices: Participation leads to inclusion Sonja Uhlmann Down Madrid ‘Hear Our Voices’, the collaborative project organised by Inclusion Europe and Lumos, an organisation from the United Kingdom, will soon be drawn to a close. The project has seen huge levels of success and was subsequently presented in front of two United Nations (UN) committees in Geneva as well as at the Europe in Action Conference in Belfast.

The project received huge support from national partners: Down Madrid (Spain), Quip – Association for Change (Czech Republic) and The Cedar Foundation (Bulgaria), and its conclusions have enabled Inclusion Europe to develop tools encouraging people with disabilities of all ages to actively participate in all aspects of their lives.

The project has particularly underlined the importance of child participation within society. Articles 29 and 30 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) clarify that each and every person with a disability has the right to participate. With many professionals and families not always being aware of these fundamental rights, ‘Hear Our Voices’ has therefore sought to use these as a framework for the greater inclusion of people with disabilities within society.

As is often the case throughout childhood, it is not the child who decides what is best for them - it is the family or professionals. This is particularly the case when it comes to children with intellectual disabilities. The family knows, decides and sets goals for their child. And yet, throughout the entire process, the voices of those children experiencing life with a disability are not heard.

It is therefore crucial that, as a society, we support children and equip them with the tools, skills and knowledge they need to fully participate in all aspects of their lives. If we do not empower children to make important decisions, participate and exercise their rights from an early age, it becomes increasingly difficult for them to make their voices heard. They must learn that, as individuals, they share the

same rights as every other person on the planet and the right to participate is key to their development.

Based on previous research conducted by Inclusion Europe, children with disabilities very rarely enjoy the same level of inclusion within society as those without disabilities. This is, in large part, a result of less participation in social activities.

Forming friendships, participating within a group, and interacting with peers are the pillars upon which an active, engaged society must be built, all of which allow for the child to flourish and develop both personally and socially. However, the often challenging nature of such activities means that support must be provided to facilitate such participation.

The child’s participation must therefore actively engage all parties. On one hand, it is extremely important to listen to children with intellectual disabilities and encourage them as self-advocates. On the other hand, parents, teachers and carers must be prepared to offer the necessary support, not just in formal education, but also in a social, informal capacity.

‘Step by Step,’ an organisation for children and young people with disabilities in the UK, is championing this model of social participation. The organisation meets with children and young people with disabilities and their parents once a month, to discuss ideas on how to greater involve young people with disabilities in society, be that through formal education, awareness building and even active fundraising.

With a similar goal,‘Hear Our Voices’ is therefore designed to strengthen the child’s ability to participate, irrespective of age, disability or social context. To this end, we uphold the child’s right to be heard, to express their own opinion on matters directly affecting their lives and to be free to assume their roles and responsibility within society, regardless of what they may be.

Equally, as part of these social responsibilities, the child must have a sense of respect and recognition of authorities.

Consequently, children able to communicate and voice their opinions, take responsibility for their actions and make important decisions independent of others, are able to improve their standing both as a student and as a citizen.

‘Hear Our Voices’ has consequently led to the creation of a series of tools adaptable to the personal situation of each child. The tools are easy to handle, fun-natured and can work across language barriers to suit children not only in mainstream education, but also those still in residential care.

The learning model encourages active participation from the child as well as the teacher or the parent. With professionals often overprotecting children with intellectual disabilities, thus removing the element of free-choice, the model ensures that they learn in what context children must be facilitated to make decisions freely and independently.

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A clear message from young people in Spain – We are all different, but we all have the right to live happily.

Sadly, despite guidelines from the UN CRPD, many children across Europe remain in residential care. It is therefore crucial that these tools are applicable to children from that background. The results published from this project will feature examples of the work carried out in Bulgaria and the Czech Republic, where we worked with children living in a broad array of contexts - from small group domestic settings, to large institutional ones.

The highlight of this project came when four young selfadvocates presented their stories of self-advocacy and participation in society to two committees at the United Nations in Geneva. Taking place on 26 September, the UN Committee for the Rights of the Child (CRC) and the UN Committee for the Rights of Persons with Disabilities (CRPD) united to hear the young self-advocates explain the importance of the right to be heard and to participate.

A number of examples of these tools in practice perfectly highlight their importance. For instance, a 10-year-old boy developed an alternative communication system. Prior to its development and implementation, he was regularly offered chocolate upon completion of a task by those caring for him.

However, once he developed the new system, his first communication was “Please! No more chocolate. I hate chocolate!” This only serves to further highlight the importance of self-advocacy and the promotion of independent decision-making. Once the boy’s voice was heard, he could express his opinion and take the capacity to make decisions from others who did not necessarily know what was in his best interest.

This embodies our commitment to ensuring that children with intellectual disabilities are visible and their voices are heard in the consultation and reporting process at the UN Treaty body level (CRC and CRPD). Using events such as these to raise awareness is essential to making people understand the importance of the 3rd Optional Protocol to the CRC, which allows children to bring their complaints directly to the UN Committee on the Rights of the Child.

The story of Diana also serves as a shining example of the importance of self-advocacy among children with intellectual disabilities. Diana is a girl working with the Cedar Foundation in Bulgaria. She has an intellectual disability. Initially, she did not participate. She was easily distracted and failed to show an interest in individual work. Over time, Diana was encouraged to make more decisions, free to live with the consequences. One of those decisions was the colour of her bedroom walls. The more Diana learned that she could be the catalyst for change, the more she became proactive. As a result, Diana is a now a young lady with enough selfconfidence to say what she wants and what she does not want. She knows how she can make a difference to her own life while accepting the boundaries and limitations set by people supporting her. She now enjoys the positive consequences of her decisions – a brand new pink room, painted and decorated to her own taste.

Along with the support of such international organisations, we could not have realized our achievements without the help of families, professionals, the European institutions but most importantly, without the children participating within this project. Seeing young people with intellectual disabilities interacting and sharing their views with representatives of such institutions sends a powerful message in itself that young people can and must be heard in this transition.

We know that child participation is never going to be a straight-forward process. This is why we will include the drawbacks, challenges faced and lessons learned from this project. Alongside the successes, the tools created through this long process will be the direct product of the experience we have all gained throughout.

We therefore hope that users of this resource feel inspired to learn more and to seek to bring about the change we advocate. As a result, that inspiration can ensure that all children with intellectual disabilities will be able to participate freely and actively in their own lives. ★

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‘I became brave…and I started to feel that people are listening to what I have to say’ How Child Participation can transform the lives of young people with intellectual difficulties Nolan Quigley Lumos Lumos is an organisation from the United Kingdom. Lumos fights for the rights of children in Europe. It wants to help children leave institutions and be a part of the community. Lumos believes children need to have a voice when people make decision about them.

Through different projects, Lumos helps children and young adults with intellectual disabilities: ■ be informed about their rights and opportunities ■ be more involved in society At Lumos, we believe passionately in enabling children and young people with intellectual disabilities to become selfadvocates in the cause of improving their lives. Their views have been disregarded for too long and decisions affecting them have been made without consulting them. That is wrong, because they are the experts when it comes to their needs and expectations. They require support and encouragement to make their voices ring out lough and clear – and a bit of planning to bring them into contact with people in power and authority.

The quote above came from an teenage boy who became an enthusiastic member of a child participation group run by Lumos, in Bulgaria under the Turning Words into Action banner.

He captured the sense of empowerment at the heart of Child Participation when he said: “It helped me to become useful for myself and also for others. I became brave, more confident, and I started to feel that people are listening to what I have to say. I became a thoughtful and more independent person who is able to analyse things. The project opened a door for us to achieve more in our lives.”

Another young person from the group understood the importance of talking directly to those in power. “Through the project,” he recalled, “my new friends and I met politicians and influential people to whom we gave the task to think about us and to prevent us from becoming people without direction and without a future when we leave school.”

Lumos is an international non-governmental organisation working to end the institutionalisation of children around the world – a harmful practice which damages their life prospects and, in the worst cases, their health and even their chances of survival.

Deinstitutionalisation involves closing institutions and socalled orphanages and replacing them with family and community-based care systems, centred around an understanding of each child’s individual needs. Listening to, understanding and responding to the needs and views of children – meaningful child participation, in other words - is therefore essential for professional and policy-makers.

Children in the Hear our Voices project present their experiences with the help of a puzzle.

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Child participation is often misunderstood. Sometimes wellmeaning adults write speeches for children to read, or coach children to express what are in fact someone else’s ideas. This is not participation and could be described as manipulation.

In other circumstances, children are consulted about changes taking place, but without proper preparation or in an unfriendly, unfamiliar environment. Children with intellectual disabilities are unlikely to understand well enough to be able to give an informed opinion. In some countries, there is a common practice of ‘involving’ children in adult events by having them perform a song or dance, or read a poem. This is tokenistic. True participation has to avoid these pitfalls and ensure that the child is expressing their own opinion, that their participation is an empowering and positive experience and that their opinions are taken into account, not ignored.

The World Health Organisation’s Declaration, Better Health Better Lives (BHBL) is an international agreement that commits all the 53 European countries that signed it to “Empower children and young people with intellectual disabilities to contribute to decision-making about their lives.”

Such declarations, in our experience, only prove their true worth when they are put into practice on the ground and in the lives of the vulnerable people they aspire to help. That is why Lumos – an NGO created by J.K Rowling, the Harry Potter author, because of her concern about the incarceration of youngsters in institutions - created the Turning Words into Action (TWIA) project.

This ambitious project ran for 18 months from 2011 to 2013 and brought together children and young people with intellectual disabilities, their parents, policy makers and health and educational professionals in Bulgaria, the Czech Republic and Serbia, with the aim of bringing the Better Health Better Lives Declaration to life through meaningful and effective child participation activities and outcomes.

The project, funded by the European Commission Social Innovation Fund, supported young people to become selfadvocates and started the process of giving them the opportunity to influence and advise on how to implement the declaration in their own countries. It also, for the first time, provided these young people with the opportunity to interact with policy-makers and discuss issues around their disabilities as equal partners. We used various methods, including pictures, posters and ‘easy read’ materials to help the young people articulate their views. Children and young people from the TWIA groups in Serbia and Bulgaria took part in a major international conference on child participation held in Switzerland at the end of June 2013. Two TWIA selfadvocates from the Czech Republic and Bulgaria spoke at a Lumos conference in the European Parliament in Brussels.

If all this sounds rather earnest and a little dull, then those who were privileged to take part in the TWIA three-day bus trip – from Varna, in Bulgaria around the country and on to Sofia – will tell you otherwise. The called it their “Tour of Dreams.”

At stops along the way they met and debated with groups of members of youth councils and voluntary organisations, civil society groups and political representatives - advocating for recognition of their rights and for the changes they thought were needed to make the BHBL Declaration a reality in Bulgarian law and practice. The children prepared their own materials for their tour, including posters and a carpet into which they wove their interpretations of the Declaration's priorities.

It would not be too much of an exaggeration to describe this experience as life-changing for many of the children and young people involved. They happily recreated the experience in an imaginary bus journey at a workshop in Inclusion Europe’s Europe in Action conference in Belfast in May this year – inviting two girls from Spain’s Hear our Voices group along for the ‘ride’.

Audience members joined the young self-advocates, parents and professionals on the imaginary bus journey. At each stop, a different perspective was shared and gradually a picture was created of the beneficial impact that child participation can have on young lives. The children celebrated their journey with some delightful singing.

It is events like this which persuade those of us working with children and young people with intellectual disabilities that the bus journey taking them towards true child participation in decisions about their lives will keep on gathering speed and momentum. ★

Lumos continues to support its TWIA child participation groups (and a similar group in Moldova, which last year presented a letter expressing their views on inclusive education to the Minister of Education at a conference in Chisnau, the capital.)

We were delighted to be asked to collaborate with Inclusion Europe’s new project - Hear our Voices! - joining partners from Bulgaria ( Cedar Foundation), Czech Republic (QUIP), Spain (Down Madrid) and Brussels (Eurochild). Like TWIA, this looks at practical ways to ensure children with disabilities are enabled to participate in key processes that affect them. All the partners have been keen to learn more about the work started within the Lumos TWIA project.

A pretend bus trip takes children in the Hear our Voices project on the road to positive change, participation and inclusion.

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The world listens to children with intellectual disabilities Hear our Voices Partners Young people with intellectual disabilities have won backing from key United Nations (UN) figures for their right to have a voice in decisions about their lives.

committee members when she said: "We cannot make decisions about the lives of children with disabilities without listening to them.”

In one of the best attended UN side events ever held in Geneva, members of two UN committees heard compelling testimony from four young people with intellectual disabilities and a passionate belief in their right to be heard.

"These voices of marginalised children with disabilities are never heard in the UN,” Peláez Narváez added, and thus the CRPD Committee is working to assess what are the most pertinent issues to young people with disabilities. “The CRPD is especially concerned about abandonment and institutionalisation of children with disabilities around the world. This is an issue globally and must be addressed by States,” she said.

The message of these talented self-advocates from Bulgaria, the Czech Republic and Spain was summed up by Stani, aged 17. She told the committees on the Rights of the Child (CRC) and the Rights of Persons with Disabilities (CRPD): “If you want to hear my story, you have to be prepared to listen.”

Stani - along with Leo, Yoyo and Dominik - kept six members of the CRC Committee and 13 members of the CRPD Committee engaged with a presentation including photos, videos and heartfelt speeches. Their words echoed the thoughts of children with disabilities around the world. While even children with the most severe impairments can express opinions, adults have often not been prepared, or equipped, to truly hear them. This is particularly true of the many disabled children living in institutions worldwide.

The younger people and their families and supporters therefore welcomed the words of CRPD Committee member Ana Peláez Narváez. She encapsulated the view of the

The Geneva event, which took place on September 26, attracted more than 100 participants. It was organized in the framework of Inclusion Europe’s European Commissionfunded Hear our Voices project, in collaboration with Lumos, J.K Rowling’s charity, Eurochild, UNICEF and the International Disability Alliance. The project aims to make sure that all children, regardless of their disabilities, are able to meaningfully participate in all aspects of their lives.

Inclusion Europe President Maureen Piggot said: “Children with intellectual disabilities should be involved in every stage of the policy processes which affect their lives. It is crucial they have accessible information, as the four self-advocates emphasized, so they can understand and participate fully and meaningfully.” ★

Sharing experiences on inclusion and Community living – a personal account Paddy Connolly Inclusion Ireland Inclusion Ireland is an organization fighting for the rights of people with intellectual disabilities from Ireland. PSOUU is an organisation supporting people with intellectual disabilities from Poland. Inclusion Ireland, Inclusion Europe and PSOUU had many meetings in Poland.

At the meetings they talked about things like: ■ the importance of self-advocacy ■ how people with intellectual disabilities can make their voices heard ■ ways of improving the lives of people with intellectual disabilities.

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Inclusion Ireland had the great privilege to work with Inclusion Europe and PSOUU, the national association which supports people with an intellectual disability and their families in Poland, over a number of weeks between May and June 2014.

We were asked to deliver training and information on aspects of our work in Ireland, particularly self-advocacy, working with volunteers, influencing policy, working with local Government, and disability policy.

Therefore, I travelled to Krosno in May, and Gdansk in June, while two of my colleagues travelled to Kolobrzeg, Glowgow and Zgierz. These cities show you different regions of Poland, giving us a good outlook on PSOUU’s work. As part of our visits, we were shown around some of their services, met staff and managers and spent time with self-advocates.

It is too simple to say that this trip was a training event, or that Inclusion Ireland has had any ‘knowledge’ to impart to our colleagues in Poland. It is better to describe it as a conversation, or a sharing of experience, as PSOUU is facing the same question that we all face – how do we change the way we work so that persons with an intellectual disability enjoy their full rights as citizens? The answer to this question though, is the responsibility of all of society and not just those of us who are in the ‘disability sector’. It is the responsibility of all Government departments and agencies, all local community clubs and associations, all members of society.

Clearly, at the level of leadership, people talked about the importance of developing self-advocacy, and of committing to the voice of persons with a disability having more influence in their organization. What makes PSOUU special, and perhaps unique, is that many people in the organization, the majority I think, are family members of people with a disability.

The organization is the main provider of services to people with an intellectual disability in Poland. And here they face a challenge.

Which is the most important relationship? Fort the organization to survive it must provide services for the State, but the model of service it wants to provide, or the State wants it to provide, will not provide autonomy and selfdetermination to the individual. People do better the fewer professionals, or paid support, they have in their lives – the ordinary is the most wonderful.

Living ordinary lives in the community is where people with a disability have said they want to be. In a diagram it might look like this:

To have rights as a citizen means to be more than just recognized as a citizen; it means to have opportunities to participate fully in community life; it means to have the opportunity to play a valued role in your community.

My impression of PSOUU is that it is an organization committed to change, but one that faces some challenges as well. There is something very special about the organization rendering it unique, but also something making it very easy to relate to, in that it reflects the same issues being discussed in Ireland and elsewhere.

In our conversations, we addressed the difference between treating people with ‘dignity’ and people having ‘rights’.

Dignity can be understood by each person to mean different things, e.g. respect, care, love etc. But ‘rights’ are defined in law and international agreements. So rights-based work puts the self-determination of the individual at the centre of what we do. We talked about the difference between self-advocacy which is supported by service providing organizations, and independent self-advocacy. The risk for self-advocacy which is not independent from service providing institutions is that self-advocates talk about issues in the institution rather than their ambitions, hopes and dreams beyond those walls. We talked about the needs of younger parents and how to connect with them, and the risks faced by organizations which do not learn to first listen to what people have to say, and afterwards design what it is they are going to deliver.

These questions challenge us all, and the answer will not be found in designing services for large groups of individuals, but in individuals designing the support and services they want. ★

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The right to vote as a gateway to a functioning society Matthew Broadbent Inclusion Europe More than 5 million people with intellectual disabilities live in the European Union.

Many of them are not allowed to vote because of their disability.

This means they cannot have a voice in policies that affect their lives.

The United Nations Convention on the Rights of Persons with Disabilities (in short, UN CRPD) said this is wrong.

The UN CRPD said no person should be kept from voting because of their disability.

Inclusion Europe had a campaign trying to support people with disabilities to vote.

The campaign was called “Voting for all.”

Studies showed that some countries are trying to help people with disabilities vote.

The United Kingdom is such a country. But even they could do better.

More than five million people with intellectual disabilities live in the European Union. At the beginning of 2014, Inclusion Europe launched a campaign entitled ‘Voting for All’, aiming to eradicate social exclusion and promote the democratic, inclusive principles at the heart of the European Union. In any democratic society, the right to make your voice heard is a fundamental part of civic life. Yet throughout a large number of European Union member states, many of those five million people are rendered voiceless by laws removing their right to be an active component of a functioning society. As a result, laws are proposed, legislation is passed and policies are implemented which directly address the treatment of people with intellectual disabilities, but all of which exclude the consultation of those directly affected. As the “Voting for All” campaign rightly highlighted, no society can claim to be inclusive if it denies any group the basic right to vote.

On 13 December 2006, an historic moment in the rights of people with intellectual disabilities, the United Nations adopted its Convention on the Rights of Persons with Disabilities (UN CRPD). With 82 signatories, 44 signatories to the Optional Protocol and one ratification, the Convention received the highest number of signatories for any UN Convention on its first day. Among the many articles protecting the rights of one of Europe’s most disadvantaged groups was Article 29, which states: “Persons with disabilities can effectively and fully participate in political and public life on an equal basis

with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected.” 1 Since its opening for signatures in late 2007, the European Union, along with 24 of its member states, has ratified the UNCRPD and pledged to uphold and actively promote the full political participation of people with intellectual disabilities within society. At face value, this would appear a major stride in the championing of equal rights for citizens with disabilities across the European Union. However, the reality is that many continue to be isolated from the political realm.

Earlier this year, the European Union Agency for Fundamental Rights issued a report under the name ‘The right to political participation for persons with disabilities: Human rights indicators.’ The report set about collecting data to assess how “the right to political participation for persons with disabilities set out in Article 29 of the CRPD is respected, promoted and fulfilled across the EU” 2. Firstly, according to figures, in 21 of 28 EU member states, people with disabilities are more distrustful of their government than the national average indicates. Whatever the reasons behind this, people with disabilities are more likely to be a member of a national political party in relation to the national average.

Furthermore, in Sweden, Denmark and France, over 60 per cent of those with disabilities participated in some form of political activity, ranging from attending a public demonstration to contacting a politician. Despite this, on

1

The United Nations, ‘Convention on the Rights of Persons with Disabilities’, http://www.un.org/disabilities/convention/conventionfull.shtml, accessed 5 November 2014.

2

European Union Agency for Fundamental Rights, ‘The Right to Political Participation for Persons with Disabilities: Human Rights Indicators’, http://fra.europa.eu/sites/default/files/fra-2014-right-political-participation-persons-disabilities_en.pdf, accessed 31 October 2014.

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average, people with disabilities are more distrusting of the democratic process than national averages. Indeed, of 18 countries surveyed, only one country bucked this trend with Cypriot people with disabilities shown to be more trusting of democracy than the national average.

The UN Committee on the Rights of Persons with Disabilities has since put Article 29 of the UNCRPD at the centre of discussion, particularly the way in which state parties choose to implement this into legislation. In discussions this year, the Committee has stated the need to pay particular attention to ensuring that all EU states to ratify this Convention support the suffrage of those with psycho-social and intellectual disabilities. The second key issue is the necessity to support the wishes of people from all walks of life – irrespective of legal status and type of impairment – when seeking to participate in political activity of any form. Although ratification of the UN CRPD (and with it Articles 12 and 29) suggests a state party’s commitment to protecting the rights of those with intellectual disabilities from a participatory perspective, many governments are still failing to adapt legislation to support this.

A particularly relevant example highlighting the gap between a government’s commitment to tailor the Convention’s requirements to fit the needs of people with intellectual disabilities and the actual reality lies in the case of the United Kingdom. Consecutive UK Governments have offered a variety of alternatives to voting at polling stations in an attempt to reach out to previously disenfranchised people with disabilities or the elderly.

The proxy vote is one example of this. Any person with a disability has a right to invite a familiar person, family member or not, to vote on their behalf. As one of only two EU member states to offer this form of alternative, the Netherlands also legislating for it, the UK arguably offers one of the most accessible and adapted systems of voting in the European Union. Although on face-value this appears a feasible alternative to conventional polling station voting, legislation since the introduction of proxy voting has made voting for people with disabilities considerably more difficult, as it stipulates that the proxy can only vote at the designated polling station of the person with a disability. As a result, this can often provide a significant stumbling block when proxy voting as not only is the person with a disability forced to find someone trustworthy to act on their behalf, but they must often choose someone living locally.

As of 2014 in England, Wales and Scotland, each individual voter, as well as his or her proxy if applicable, must re-register to vote.

This presents people with disabilities with an array of problems.

The absence of easily accessible information explaining the process of voter registration means that many people with disabilities are discriminated against and ultimately starved of their vote. Furthermore, given that only 51% of British people with disabilities use the internet, according to a 2013 University

of Oxford study, many people with disabilities miss valuable information related to voting rights 3.

The United Kingdom is deemed to offer one of the most inclusive electoral models across the European Union for people with disabilities. It remains one of only seven EU member states to offer the vote to all people with a disability, however severe, regardless of the legal status of that person.

Alongside the likes of the Netherlands, Sweden and Italy, the UK remains one of very few states to buck the trend and overlook legal capacity in the assessment of citizens prior to elections. As the Fundamental Rights Agency report outlines, legal capacity is, in more than half of the cases in the European Union, used as a means of identifying whether or not a person with a disability should be able to vote. The UK’s commitment to engage people with disabilities in the electoral process is therefore one which fits the framework proposed by Article 29 of the UN CRPD. Despite this, in a study recently commissioned by Mencap UK, an Inclusion Europe member organisation and charity supporting the rights of persons with intellectual disabilities, findings suggested the contrary. The survey, carried out in conjunction with the organisation’s ‘Hear My Voice’ campaign, uncovered the reality that as many as 17 per cent of prospective voters identified as having a disability but being registered were turned away from their polling stations due to their disability 4. The study, which surveyed 553 people with a learning disability in the United Kingdom from June to August 2014, also showed that British authorities had clearly not taken the effective steps to allow for a simple registration process suitable and inclusive for all. With 60 per cent of 236 respondents stating that they wanted to vote in previous elections held in the UK but were unable due to an inaccessible and complicated registration process, it is clear that, despite commitments to implement the UN CRPD in full, including Article 29, people with disabilities in the United Kingdom remain at a huge deficit when seeking to vote.

The signing and ratification of the UN CRPD was a major step in the right direction for many people with disabilities across the globe. But it was only the first step in a long process. The EU’s vow to ensure the full implementation of the treaty in all member states underlined that the right steps are being made in working towards greater rights for people with intellectual disabilities. Sadly, more must be done to ensure that people with intellectual disabilities can actually enjoy the rights they have been promised. The huge divide between the political rights of British people with and without disabilities is a worrying indictment of this. Despite being one of only two EU member states to offer a proxy vote and one of eight to provide voters with disabilities with the postal vote, the UK Government has still failed to put into practice what it preached by ratifying Article 29. For as long as the gulf between promises and actions remains so vast, people with disabilities who want to vote will continue to be the victims. ★

3

Oxford Internet Surveys, ‘Almost half of people with intellectual disabilities don’t use the Internet: But why?’, 3 September 2013, http://oxis.oii.ox.ac.uk/blog/almost-half-people-disabilities-dont-use-internet-why/, accessed 1 November 2014.

4

Mencap UK, ‘People with a learning disability’s passion for politics thwarted by system that excludes them’, 8 October 2014, https://www.mencap.org.uk/news/article/people-learning-disability-s-passion-politics-thwarted-system-excludes-them, accessed 6 November 2014

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Europe in Action 2015: Where fun and policy mix to create tangible change 21 – 22 May 2015, Rome, Italy

Europe in Action is Inclusion Europe’ annual conference.

It is a very big event, with a lot of people coming every year.

In 2015, Europe in Action will take place in Rome on 21 and 22 May. Rome is a city in Italy.

The conference will be about family and self-advocacy.

To find out more, you can go to http://europeinaction.org/ with intellectual disabilities are respected as equal members of society, Inclusion Europe is aware of how important organizing an accessible event is. As such, Europe in Action is always accessible for people with intellectual disabilities, while also being a really fun event to participate in.

Audience members attentively listening to presentations during the Europe in Action conference in Belfast.

Participating in Europe in Action, Inclusion Europe’s annual event, is already a tradition for many people with intellectual disabilities, their families, carers and representative organisations. The conference, which consistently gathers more than 200 participants, has dealt with various topics, from employment to growing up with intellectual disabilities.

Regardless of the issue at stake, Europe in Action has always provided participants with an opportunity to exchange experiences, practices and policies with like – minded individuals from most European countries. It is no wonder that the feedback from participants has always been glowing.

Roy McConkey, a Professor of Developmental Disabilities at the University of Ulster, described last year’s event as “professional and well organised yet both friendly and encouraging,” while Aimee Richardson, self-advocate and star of the hit Irish television series Punky, spoke of the “marvellous” job done by the organisers of the conference.

As an organisation dedicated to advancing the cause of intellectual disability in Europe, and ensuring that people

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Interested? If so, you are in luck, as Europe in Action will take place in beautiful Rome in 2015. On 21 and 22 May 2015, Inclusion Europe together with ANFFAS will run an engaging event that will address effective and innovating ways of strengthening the self-advocacy movement at local, regional and national levels, while discussing the impact of selfadvocacy on families. The conference will also address ways in which families and self-advocates can work together to promote the provisions of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD).

Developed in order to meet the needs of both self – advocates and representatives from organisations of people with intellectual disabilities, as well as specialists and researchers in the disability field, the conference programme will mix personal stories from self-advocates with sessions delivered by experts in the field or European policy-makers.

The personal and political dimensions of self-advocacy will be central to the programme, particular in relation to issues such as legal capacity, political participation, accessibility, health, education and community-living.

Participants will discuss the basics of self-advocacy, share models for sustainable self-advocacy in organisations and means of organising self-advocacy groups local level. They will also address the legal challenges of self-advocacy and present the first experiences of self-advocacy in Italy. As a perfect example of the power of self-advocacy to achieve political change, the European Platform of Self-Advocates will also take the opportunity to showcase its work.

The conference is intended to promote a passionate exchange of ideas among people from different countries

who are committed to improving European policies, to learning from each other and to exchanging best practices.

Europe in Action also provides participants with a means to meet national and European policy-makers, to share concerns, and to make sure the voice of self-advocates and their families is heard. By adopting and promoting a resolution calling for more structural support for selfadvocacy groups at all levels, Europe in Action 2015 also intends to promote tangible change, and offer the national and European institutions concrete tool to enact it.

As every year, the following several meetings and events will also take place during the week of the conference: ■ On 20 May, a Seminar on the monitoring of the United Nations Convention on the Rights of Persons with Disabilities will take place ■ On 23 and 24 May, ANFFAS will hold its Annual General Assembly at the same location. This event is for the Italian members of ANFFAS only.

Inclusion Europe and ANFFAS are looking forward to welcoming participants for two days of engaging and eyeopening discussions, in a beautiful setting in Rome. As every year, participants will also be engaged in a range of cultural activities, in what is certainly one of the most beautiful cities in the world.

More information on Europe in Action 2015 is available at: http://europeinaction.org/ ★

Aimee Richardson, the voice of Punky, a cartoon character with Down Syndrome, was a speaker at Europe in Action 2014.

Inclusion Europe President, together with the Chief Executive of Mencap, pose alongside EPSA Steering Group members ahead of Europe in Action 2014.

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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.