IncludeInclusion Europe

Content 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 ..................6

Safe Surfing – New project to help people withintellectual disabilities use the Internetsafely ....................................................................................................................................................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 withintellectual disabilities .............................................................................14

Sharing experiences on inclusion andCommunity 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 looksback at the work it did.

Our work must always help our members andpeople with intellectual disabilities.

Inclusion Europe wants to make life better forpeople with intellectual disabilities.

It 2014, it did this in many ways.

Inclusion Europe created a website to help peoplesupport persons with intellectual disabilities to takedecisions.

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

Inclusion Europe is also part of two projects.

The projects will help people with intellectualdisabilities communicate online betterand stay safe on the Internet.

At the end of every year, it is almost customary to look back onthe work performed and activities developed, and count ourinstances of success. Luckily, Inclusion Europe could boast quitea few – the best attended United Nations side event comes tomind, along with two completed projects and one more grantawarded. While achievement is definitely important, this year,we would like to focus on something more meaningful, if notmore difficult to quantify – value. When working for a cause, forchange in both actions and perceptions, and, more importantly,for people, one must always assess whether our work wasvaluable for our members, for policy-makers, and particularlyfor our target group.

Our campaign on promoting supported decision-making isone instance where we feel we are making a difference.Although only launched at the end of October, our Choiceswebsite has received nearly 11,000 page views, from not onlyEurope, but also Australia, the United States, Argentina andIndia. This proves perceptions are slowly changing on theissue of guardianship for people with intellectual disabilities,supported decision-making is increasingly becoming thenorm, and practitioners are actively researching alternativemethods to guardianship.

Equally, our Hear our Voices project on child participation hadan 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 andbecame much more self-confident in the process. Our youngself-advocates also showed members on the United NationsCRPD and CRC Committees that children with intellectualdisabilities can and are very much willing to participate, andthus should be given all tools necessary to be able to do so.

Inclusion Europe has also branched out into a more technicalarea with its two new projects, Able to Include andSafeSurfing. They both aim to offer practical tools for peoplewith intellectual disabilities. While Able to Include willdevelop an accessibility layer, to make written languageaccessible for people with intellectual disabilities, Safe Surfingwill offer live training in the areas of data protection and safeonline behavior.

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

Geert FreyhoffInclusion Europe Director

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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 capacitytaken away.They cannot be given guardians to make decisions for them.

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

2014: An overview of progress made towards theimplementation of the CRPD

Camille LatimierInclusion Europe

The year 2014 has been marked by the adoption in April ofthe first General Comment on Article 12 of the UnitedNations Convention on the Rights of Persons with disabilities(UN CRPD), tackling the most challenging but crucial article ofthe CRPD. The Committee on the Rights of Persons withDisabilities gave an authoritative interpretation of the treatytext, to clarify the reporting duties of State parties withrespect to certain provisions, and also suggest approaches toimplementing treaty provisions related to Article 12. As adraft General Comment had been published in October 2013,Inclusion Europe together with several of its members, andwith Inclusion International, submitted contributions to thedraft and asked the Committee for further clarifications. Thefinal text of the General Comment reminds us about thehistory of legal capacity and the restriction other groups,such as women, had to face, noting that people withdisabilities are still “disproportionally affected by substituteddecision-making regime and denial of legal capacity.” ” The General Comment also states that legal capacityincludes the capacity to be both a holder of rights and anactor under the law. “Legal capacity to act under the lawrecognizes that person as an agent with the power to engagein transactions and create, modify and end legalrelationships,” the Comment reads. The General Commentalso clarifies the concepts of legal and mental capacity –which are often confused- and states that “mental capacityrefers to the decision-making skills of a person, whichnaturally vary from one person to another and may bedifferent for a given person depending on many factors,including environmental and social factors.“ The Committeefurther refers to the State party reports examined so far,notices that it is still on the basis of a disability or diagnosisthat legal capacity is removed. Therefore, the Committeestrongly reiterates that under Article 12, perceived or actualdeficits in mental capacity cannot be used as justification fordenying legal capacity.

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

and can constitute “arrangements of varying type andintensity”. The Committee also suggests a list of key elementsto comply with Article 12. For example, support to exerciselegal capacity must be available and accessible to all, andmust be provided at a nominal or no cost for persons withdisabilities. Moreover, support and communication needsshould never be a barrier to exercise legal capacity and thelegal recognition of supporters should be available. Also, noother right can be limited while using support in decision-making and the person must also have the right to refuse orchange his/her support. Finally, all decisions must respect theperson’s rights, will and preferences. This is how theCommittee describes the main difference betweensubstituted and supported decision-making: substituteddecision-making refers to any decision made on what isbelieved to be the perceived “best interests“ of the personconcerned as opposed to being based on “the person’s ownwill and preferences”.

In the most difficult cases, the Committee states that “whereafter significant efforts have been made, it is not practicable todetermine the will and preference of an individual, bestinterpretation of will and preferences” must replacedeterminations of best interest. The “best interests” principleis not a safeguard under Article 12 in relation to adults.

Finally, the General Comment sends a very strong statementto State Parties, being clearly against the creation of parallelsystems. “The development of supported decision-makingsystems in parallel with the maintenance of substitutedecision-making regimes is not sufficient to comply with article12 of the Convention”, the Comment reads. State Parties areobliged to replace substituted decision-making regimes bysupported decision-making systems by both abolishing theold system and by developing alternatives.

The publication of this landmark interpretative text broughtInclusion Europe to further develop and reinforce its activitiesaround the implementation of Article 12.

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■ In May, our Strategic Policy Seminar for Leaders of theInclusion Movement focused on participation ofpeople with intellectual disabilities and their familiesin CRPD implementation and monitoring with aparticular focus on the reforms and strategies aroundarticle 12.

■ In October, Inclusion Europe launched the Choiceswebsite, an online platform on practical models ofsupported decision-making. Available at www.right-to-decide.eu, Choices presents a range ofsupported decision-making models for people withintellectual and other disabilities, in a bid to offersustainable, reliable and CRPD–compliant alternativesto guardianship. While there are many good practicesavailable which can help supported decision-making,they are often scattered and hard to find. Choicestherefore gathers and analyses the wealth of resources,making it easy for the reader to find the informationthey need, either by choosing the relevant area of lifethe model would be relevant to, or the type of supportneeded. Choices proves that efficient supporteddecision-making models could be built based onexisting practices. As a framework which recognizesthat all people make decisions with support, guidanceor assistance from others, supported decision-makingshould become the norm in all European states.

■ Finally, in November, under the auspices of the Councilof Europe, Inclusion Europe organized a Round tableon Legal Capacity. While the day was framed by theGeneral Comment on Article 12, the participantslooked at European opportunities to enhance the rightto legal capacity. The participants examined severalbest practices from Germany, Bulgaria, Spain andFrance, as well the activities developed by Inclusion

Europe and Inclusion International. The parents’ andpeople with disabilities’ perspective was also broughtinto the debate throughout the differentpresentations.

The year 2014 was also marked by the publication of the firstReport on the implementation of the UN CRPD by theEuropean Union by the European Union, which was releasedat the beginning of June. Similar to all States that have ratifiedthis Convention, the European Union also has to report on itsimplementation to the CRPD Committee at regular intervals.Mirroring the national experience, European NGOs provided acomplementary and critical view about the implementationof the UN CRPD at EU level in an alternative report.

While Inclusion Europe welcomed the publication of the firstReport on the implementation of the UN CRPD by theEuropean Union, a comprehensive account of the measurestaken by the European institutions to ensure that the rights ofpeople with disabilities are considered in all relevantlegislative proposals, Inclusion Europe has also found someparts of the document lacking a critical evaluation of the factspresented. For example, the 2008 proposal for an anti-discrimination legal framework in areas outside employmentis mentioned as a legislative proposal, despite the processhaving been postponed because of failure to achieveconsensus among Member States. In addition, theCommission had not given any indication about a follow-upto the EU Agenda for the Rights of Child, or any measurestaken to align this Agenda to the CRPD provisions on childrenwith disabilities. On the topics of legal capacity and politicalparticipation, the Commission had also taken a ratherconservative approach by claiming a lack of legalcompetence. Not even in their area of competence, the fightagainst discrimination did the report mention any concretesteps 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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disabilities under guardianship and allow them to accessemployment, community based services, or exercise theirright to vote. With all the publicity given to the Europeanelections, it was disappointing that political participation hasnot been acknowledged as an area where the EU couldprovide an impulse to end discrimination against citizenswith disabilities.

While the report was clearly valuable, offering an extensiveoverview of policies related to the issue of disability in theEurope Union, Inclusion Europe believed the Commissioncould have taken a more proactive and ambitiousapproach, one that could have helped move the agendaforward.

Organisations of people with disabilities thus gave theirown valuable input in an alterative report. Based oncontributions from different European NGOs, among themInclusion Europe, the European Disability Forum draftedthe European Alternative Report on the implementationof the CRPD. Inclusion Europe has contributed to thechapter on legal capacity. Both the Alternative Report andthe European Union official Report concentrate on thearticles where the EU has legislative competence.

The alternative report contains a number ofrecommendations to the EU. One of the keyrecommendation is the development of guidelines forconsultation with persons with disabilities andrepresentative organisations of persons with disabilities,including of women, girls and boys and older persons withdisabilities in the development and implementation of UNCRPD by the Commission, the Parliament, the Council of theEU and the European Council. These consultationguidelines should pay particular attention on how to

consult and involve persons with autism, intellectual andpsychosocial disabilities. At policy level, the report asks fora review of the Europe 2020 strategy to include a specificstrategy for the employment, social inclusion andpoverty reduction of persons with disabilities withfinancial allocation, on the model of the EU YouthGuarantee with dedicated headline target. In addition,European DPOs demands that the EU adopts the proposedArticle 19 Directive, as amended by the EuropeanParliament, which aims to protect persons withdisabilities (amongst other groups) againstdiscrimination in social protection (including socialsecurity and health care), social advantages, education, aswell as access to and supply of goods and services, suchas housing and transport, while taking into account thespecific situations of multiple discrimination and ensuringits compliance with the UN CRPD, in particular therecognition that the denial of reasonable accommodationas a form of discrimination.

This Directive should put in place a strong sanctioning and remedies mechanisms to punish non-compliance withhigher penalties in cases of multiple and intersectiondiscrimination. The reports also demands the developmentof a legally binding quality framework for community-based services, including habilitation and rehabilitationservices for persons with disabilities and linking it to theprocess of promoting active inclusion of European citizenswith disabilities. Last but not least, the report makesrecommendations for the EU public administration – it suggests to the EU to develop a broad andcomprehensive strategy to mainstream the CRPD withinthe EU institutions and agencies’ instruments, policies andpractices, taking into account the human rights basedapproach to disability. Staff with disabilities and staff whoare carers of persons with disabilities should be involved inthe planning, implementation, monitoring and evaluationof this Strategy. ★

Participants in the CRPD monitoring seminar engaged inlively discussions.

Eilionóir Flynn, the Deputy Director of the Centre for Disability Law and Policy at NUI Galway, presented her work on the CRPD.

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A new project called Able to Includewill help people with intellectual disabilitiesuse social media and applications on the phone or tablet.

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

However, sometimes the internet and phone applicationsare 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

Able to Include - Groundbreaking project to ease onlinecommunication for people with intellectual disabilities

Able to Include Partners

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

The United Nations Convention on the Rights of Persons withDisabilities deems disability as resulting from the interactionbetween persons with impairments and attitudinal andenvironmental barriers which hinder their full and effectiveparticipation in society on an equal basis with others. While

technology could improve the lives of people with disabilitiesin multiple ways, such as easing their access into employmentor aiding them in keeping contact with friends or loved ones,the software created for mass usage is simply not accessiblefor many people with intellectual or developmentaldisabilities.

Therefore, to break down some of these barriers to enjoyingfull access to the information society, and to promote thesocial inclusion of people with intellectual anddevelopmental disabilities, the Able to Include project iscreating an open-source and context-aware accessibilitylayer. Integrated with existing and future ICT tools, particularlyin mobile applications, the accessibility layer will help peoplewith intellectual disabilities to better interact with theinformation software.

A user-centred accessibility layer

The User Centred Accessibilty Layer will empower our targetgroup to use internet and social media applications on theirphone, tablets and personal computers. This will be done byproviding text simplification, pictograph conversions andtext-to-speech services that will make the applicationsextremely easy to use.

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

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

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Kingdom. These trials will validate the effectiveness of thenew system in several scenarios that reflect the mostimportant areas that a person needs to live independentlyand find fulfillment as an individual - to socialize in thecontext of the web 2.0, to travel independently and to be ableto work.

To produce the Accessibility Layer, the project will alsoinvolve users with intellectual and developmental disabilitiesin the design process of the Accessibility Layer itself.

A spotlight on focus groups

In October and November, Able to Include partner ThomasMore held their first two rounds of focus groups designedspecifically for people with intellectual disabilities. Workingtogether with applied psychology students who will writetheir theses on the focus groups, they interviewed manyenthusiastic participants who were happy to discuss theirexperiences with social media.

Thomas More also trained participants on all the possibilitiesthat using social media could open up for them. Occupationaltherapy students created a game for them that includedthree types of tasks: a “to do” task, multiple choice questionsand a bonus challenge. The tasks included learning how towork with a tablet, opening the right application, posting apicture on Facebook, leave a comment on someone’s profile,or having a video conversation. While learning and enjoyingthemselves, participants helped the organisers collect a largeamount of relevant data.

An innovative translation tool

Meanwhile, the Centre for Computational Linguistics (CCL) atthe University of Leuven has been working on the creation offully automatic tools to convert natural language texts intopictographs and pictographs into natural language texts.Three natural languages (Dutch, English and Spanish) andtwo pictographic languages (Beta and Sclera) are currentlyinvolved in the translation process. By developing systems fortranslating text to pictographs and vice versa, which makewebsites and mainstream applications, such as social mediaand web mail, accessible, the CCL will contribute to the e-inclusion of persons with intellectual disabilities. Moreover,supporting written text with simplified images allowsorganizations and companies to easily reach out to a largegroup of people that previously had none or only very limitedaccess to digital written content.

For the text-to-pictograph translation tool, natural languagetext first undergoes a shallow linguistic analysis, such asperforming basic spelling correction, determining the correctgrammatical category for each word and finding its lemma ordictionary form. With this information, every word can belooked up in a language-specific WordNet database. WordNetdatabases contain, among others, groups of synonymous wordsthat have been manually linked to thousands of Beta and Sclerapictographs by the CCL. The tool will attempt to retrieve apictograph for every single content word of the initial sentence.If no pictograph is found, WordNet relations will be used to findmore general concepts or concepts that carry the opposite

meaning. An algorithm will finally output the most likelysequence of pictographs for every written input sentence. The pictographic language being essentially a simplifiedlanguage, a lot of grammatical information (articles, thedistinction between singular and plural, temporality) gets lost inthe translation process. Obtaining a clear visual representationof textual meaning is therefore a challenging task.

Pictograph-to-text translation is useful in those cases inwhich cognitively impaired users communicate with peoplewho do not need pictographic support and use naturallanguage. As pictographs do not contain a lot of grammaticalinformation, finding a good textual translation for a sequenceof images is not an easy exercise. The pictograph-to-text toolgenerates a list of possible word forms for every pictographand attempts to find the most likely combination of theseword forms on the sentence level, by relying on hugeamounts of previously written text.

The CCL has presented its current work on pictographiccommunication at various conferences, such as Coling 2014 inDublin and the Marguerite-Marie Delacroix Symposium inBrussels, where a lot of interest was generated among scientistsand educators. Its first web demo for text-to-pictographtranslation, http://webservices.ccl.kuleuven.be/picto/, hasreceived a considerable amount of positive feedback from theusers, who are very eager to see the final results. In the monthsto come, the CCL will continue on improving the tool in order todeliver 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 willdecode information, making regular written languageaccessible for people with intellectual disabilities.

Therefore, Inclusion Europe and its partners in the Able toInclude project are looking to the future with hope. "Peoplewith intellectual and developmental disabilities are equalmembers of society and should be treated as such. Theyshould have the same opportunities as everyone else toaccess the information society, and should be supported indoing so," said Inclusion Europe Director Geert Freyhoff."Technology can improve the lives of people with intellectualdisabilities, and the accessibility layer can help in achievingthat," he added.

It is paramount for software developers to create accessibleapplications that people with intellectual disabilities can alsouse, an approach which is not only morally responsible, butmakes sense from an economic point of view. As technologyis a cost-effective way to complement support services,people with intellectual disabilities should not be forgottenin the creation and implementation of new tools. ★

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

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Safe Surfing – New project to help people with intellectualdisabilities use the Internet safely

Silvana EnculescuInclusion Europe

Inclusion Europe and other organisations started a project. The project is called SafeSurfing.

SafeSurfing will help people with disabilitiesuse 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 informationand 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 disabilitiesto use the internet in a safe way.

With data protection deemed as a fundamental right inEurope, and Data Protection Authorities calling for improveddigital literacy and privacy education, Inclusion Europe’s newproject is not only beneficial for people with intellectualdisabilities, but also very timely in terms of policydevelopment.

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

the European Commission (EC) to receive an action grantunder the Fundamental Rights and Citizenship programme,ranking 7th out of more than 360 applications from across theMember States.

The project builds on the idea that we, knowingly orunknowingly face many dangers when simply using theInternet. With 17 per cent of Europeans falling victim toidentity theft every year, data protection is a major problemfor all European citizens, and particularly for people withintellectual disabilities.

While the use of technological tools was one area whichpeople with intellectual disabilities were particularlyexcluded from, the past years have luckily seen a majorincrease in people with an intellectual disability usingtechnology to live more independently and more included insociety. Whether to keep in contact with friends, findinformation online, or search for job opportunities, using theInternet and mobile applications greatly benefits people withintellectual disabilities in all aspects of their lives.Unfortunately, it also puts them at a much higher risk thanthe general population. Whether due to major difficulties inobtaining valid legal consent from people with intellectual

Partners chose a positive and optimistic logo for the project.

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disabilities, problems with understanding redressmechanisms, or even the simple fact that accessing easy-to-read information could identify a user as having anintellectual disability, people with intellectual disabilities aremore vulnerable online, and more prone to suffering abuse.

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

Therefore, Inclusion Europe, together with Mencap, FEAPS,ANFFAS and PSOUU will train people with intellectualdisabilities on data protection and on safe online behavior, to ensure members of our target group are provided with thepersonal support and knowledge they need to decide whatinformation they want to share with others. Therefore, withinthe framework of the SafeSurfing project, partners will reachmore than 1000 people with intellectual disabilities directly,by using interactive online training sessions that offerparticipants the possibility of asking questions in real time.Moreover, thousands more will benefit from the five trainingvideos on several areas of data protection that will beproduced 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 focusingon social media and mobile devices

■ determining what people with intellectual disabilitieswant to share about themselves

■ setting up Facebook and other social media to protectthe 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 anonline campaign Inclusion Europe and project partnersconducted on their Facebook and Twitter pages. Answersprovided a glimpse into both the challenges and theopportunities facing people with intellectual disabilitiesusing the Internet. For example, participants in thecampaign shared concerns of having their bank detailsstolen, of unclear website terms and conditions and of notunderstanding the subtlety of language. Carers and familymembers of people with intellectual disabilities worriedabout online abuse and dishonest behavior, as well as aboutbullying and online predators. However, they also believedthere is a fine line between keeping a person with anintellectual disability safe and invading one’s privacy. On apositive note, participants also commented on setting upand maintaining support groups on social media andmaking lasting friendships online.

No full inclusion will take place until people with intellectualdisabilities are able to enjoy all aspects of life on an equalbasis with others. Supporting people with intellectualdisabilities in using the internet safely could have a hugeimpact on their level of independence, their well-being andtheir sense of ownership. ★

The SafeSurfing Project is carried out with support from the Fundamental Rightsand 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’, the collaborative project organised byInclusion Europe and Lumos, an organisation from the UnitedKingdom, will soon be drawn to a close. The project has seenhuge levels of success and was subsequently presented infront of two United Nations (UN) committees in Geneva aswell as at the Europe in Action Conference in Belfast. The project received huge support from national partners:Down Madrid (Spain), Quip – Association for Change (CzechRepublic) and The Cedar Foundation (Bulgaria), and itsconclusions have enabled Inclusion Europe to develop toolsencouraging people with disabilities of all ages to activelyparticipate in all aspects of their lives.

The project has particularly underlined the importance ofchild participation within society. Articles 29 and 30 of theUnited Nations Convention on the Rights of Persons withDisabilities (UN CRPD) clarify that each and every person witha disability has the right to participate. With manyprofessionals and families not always being aware of thesefundamental rights, ‘Hear Our Voices’ has therefore sought touse these as a framework for the greater inclusion of peoplewith disabilities within society.

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

It is therefore crucial that, as a society, we support childrenand equip them with the tools, skills and knowledge theyneed to fully participate in all aspects of their lives. If we donot empower children to make important decisions,participate and exercise their rights from an early age, itbecomes increasingly difficult for them to make their voicesheard. They must learn that, as individuals, they share the

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

Based on previous research conducted by Inclusion Europe,children with disabilities very rarely enjoy the same level ofinclusion within society as those without disabilities. This is, inlarge part, a result of less participation in social activities.Forming friendships, participating within a group, andinteracting with peers are the pillars upon which an active,engaged society must be built, all of which allow for the childto flourish and develop both personally and socially. However,the often challenging nature of such activities means thatsupport must be provided to facilitate such participation.

The child’s participation must therefore actively engage allparties. On one hand, it is extremely important to listen tochildren with intellectual disabilities and encourage them asself-advocates. On the other hand, parents, teachers andcarers must be prepared to offer the necessary support, notjust in formal education, but also in a social, informal capacity.‘Step by Step,’ an organisation for children and young peoplewith disabilities in the UK, is championing this model of socialparticipation. The organisation meets with children andyoung people with disabilities and their parents once amonth, to discuss ideas on how to greater involve youngpeople with disabilities in society, be that through formaleducation, awareness building and even active fundraising.

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

Equally, as part of these social responsibilities, the child musthave a sense of respect and recognition of authorities.Consequently, children able to communicate and voice theiropinions, take responsibility for their actions and makeimportant decisions independent of others, are able toimprove their standing both as a student and as a citizen.

‘Hear Our Voices’ has consequently led to the creation of aseries of tools adaptable to the personal situation of eachchild. The tools are easy to handle, fun-natured and can workacross language barriers to suit children not only inmainstream education, but also those still in residential care.

The learning model encourages active participation from thechild as well as the teacher or the parent. With professionalsoften overprotecting children with intellectual disabilities,thus removing the element of free-choice, the model ensuresthat they learn in what context children must be facilitated tomake decisions freely and independently.

Hear Our Voices: Participation leads to inclusion

Sonja UhlmannDown Madrid

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Sadly, despite guidelines from the UN CRPD, many childrenacross Europe remain in residential care. It is therefore crucialthat these tools are applicable to children from thatbackground. The results published from this project willfeature examples of the work carried out in Bulgaria and theCzech Republic, where we worked with children living in abroad array of contexts - from small group domestic settings,to large institutional ones.

A number of examples of these tools in practice perfectlyhighlight their importance. For instance, a 10-year-old boydeveloped an alternative communication system. Prior to itsdevelopment and implementation, he was regularly offeredchocolate upon completion of a task by those caring for him.However, once he developed the new system, his firstcommunication was “Please! No more chocolate. I hatechocolate!” This only serves to further highlight theimportance of self-advocacy and the promotion ofindependent decision-making. Once the boy’s voice washeard, he could express his opinion and take the capacity tomake decisions from others who did not necessarily knowwhat was in his best interest.

The story of Diana also serves as a shining example of theimportance of self-advocacy among children with intellectualdisabilities. Diana is a girl working with the Cedar Foundationin Bulgaria. She has an intellectual disability. Initially, she didnot participate. She was easily distracted and failed to showan interest in individual work. Over time, Diana wasencouraged to make more decisions, free to live with theconsequences. One of those decisions was the colour of herbedroom walls. The more Diana learned that she could be thecatalyst for change, the more she became proactive. As aresult, Diana is a now a young lady with enough self-confidence to say what she wants and what she does notwant. She knows how she can make a difference to her ownlife while accepting the boundaries and limitations set bypeople supporting her. She now enjoys the positiveconsequences of her decisions – a brand new pink room,painted and decorated to her own taste.

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

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

Along with the support of such international organisations,we could not have realized our achievements without thehelp of families, professionals, the European institutions butmost importantly, without the children participating withinthis project. Seeing young people with intellectual disabilitiesinteracting and sharing their views with representatives ofsuch institutions sends a powerful message in itself thatyoung people can and must be heard in this transition.

We know that child participation is never going to be astraight-forward process. This is why we will include thedrawbacks, challenges faced and lessons learned from thisproject. Alongside the successes, the tools created throughthis long process will be the direct product of the experiencewe have all gained throughout.

We therefore hope that users of this resource feel inspired tolearn more and to seek to bring about the change weadvocate. As a result, that inspiration can ensure that allchildren with intellectual disabilities will be able toparticipate freely and actively in their own lives. ★

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

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‘I became brave…and I started to feel that people arelistening to what I have to say’

How Child Participation can transform the lives of youngpeople with intellectual difficulties

Nolan QuigleyLumos

Lumos is an organisation from the United Kingdom. Lumos fights for the rights of childrenin Europe. It wants to help children leave institutions and be a part of the community. Lumos believes children need to have a voice whenpeople make decision about them.

Through different projects, Lumos helps children and young adults with intellectualdisabilities:■ be informed about their rights and opportunities■ be more involved in society

At Lumos, we believe passionately in enabling children andyoung people with intellectual disabilities to become self-advocates in the cause of improving their lives. Their viewshave been disregarded for too long and decisions affectingthem have been made without consulting them. That iswrong, because they are the experts when it comes to theirneeds and expectations. They require support andencouragement to make their voices ring out lough and clear– and a bit of planning to bring them into contact withpeople in power and authority.

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

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

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

Lumos is an international non-governmental organisationworking to end the institutionalisation of children around theworld – a harmful practice which damages their life prospectsand, in the worst cases, their health and even their chances ofsurvival.

Deinstitutionalisation involves closing institutions and so-called orphanages and replacing them with family andcommunity-based care systems, centred around anunderstanding of each child’s individual needs. Listening to,understanding and responding to the needs and views ofchildren – meaningful child participation, in other words - istherefore essential for professional and policy-makers.

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

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

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In other circumstances, children are consulted about changestaking place, but without proper preparation or in anunfriendly, unfamiliar environment. Children with intellectualdisabilities are unlikely to understand well enough to be ableto give an informed opinion. In some countries, there is acommon practice of ‘involving’ children in adult events byhaving them perform a song or dance, or read a poem. This istokenistic. True participation has to avoid these pitfalls andensure that the child is expressing their own opinion, thattheir participation is an empowering and positive experienceand that their opinions are taken into account, not ignored.

The World Health Organisation’s Declaration, Better HealthBetter Lives (BHBL) is an international agreement thatcommits all the 53 European countries that signed it to“Empower children and young people with intellectualdisabilities to contribute to decision-making about their lives.”Such declarations, in our experience, only prove their trueworth when they are put into practice on the ground and inthe lives of the vulnerable people they aspire to help. That iswhy Lumos – an NGO created by J.K Rowling, the Harry Potterauthor, because of her concern about the incarceration ofyoungsters in institutions - created the Turning Words intoAction (TWIA) project.

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

The project, funded by the European Commission SocialInnovation Fund, supported young people to become self-advocates and started the process of giving them theopportunity to influence and advise on how to implementthe declaration in their own countries. It also, for the first time,provided these young people with the opportunity tointeract with policy-makers and discuss issues around theirdisabilities as equal partners. We used various methods,including pictures, posters and ‘easy read’ materials to helpthe young people articulate their views. Children and youngpeople from the TWIA groups in Serbia and Bulgaria took partin a major international conference on child participationheld in Switzerland at the end of June 2013. Two TWIA self-advocates from the Czech Republic and Bulgaria spoke at aLumos conference in the European Parliament in Brussels.

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

We were delighted to be asked to collaborate with InclusionEurope’s new project - Hear our Voices! - joining partnersfrom Bulgaria ( Cedar Foundation), Czech Republic (QUIP),Spain (Down Madrid) and Brussels (Eurochild). Like TWIA, thislooks at practical ways to ensure children with disabilities areenabled to participate in key processes that affect them. Allthe partners have been keen to learn more about the workstarted within the Lumos TWIA project.

If all this sounds rather earnest and a little dull, then those whowere 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 ofmembers of youth councils and voluntary organisations, civilsociety groups and political representatives - advocating forrecognition of their rights and for the changes they thoughtwere needed to make the BHBL Declaration a reality inBulgarian law and practice. The children prepared their ownmaterials for their tour, including posters and a carpet intowhich they wove their interpretations of the Declaration'spriorities.

It would not be too much of an exaggeration to describe thisexperience as life-changing for many of the children andyoung people involved. They happily recreated theexperience in an imaginary bus journey at a workshop inInclusion Europe’s Europe in Action conference in Belfast inMay this year – inviting two girls from Spain’s Hear our Voicesgroup along for the ‘ride’.

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

It is events like this which persuade those of us working withchildren and young people with intellectual disabilities thatthe bus journey taking them towards true child participationin decisions about their lives will keep on gathering speedand momentum. ★

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

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Sharing experiences on inclusion and Community living – a personal account

Paddy ConnollyInclusion Ireland

Inclusion Ireland is an organization fighting for the rights of people with intellectualdisabilities from Ireland. PSOUU is an organisation supporting people with intellectualdisabilities from Poland. Inclusion Ireland, Inclusion Europe and PSOUU had manymeetings 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.

The world listens to children with intellectual disabilities

Hear our Voices Partners

Young people with intellectual disabilities have won backingfrom key United Nations (UN) figures for their right to have avoice in decisions about their lives.

In one of the best attended UN side events ever held inGeneva, members of two UN committees heard compellingtestimony from four young people with intellectualdisabilities and a passionate belief in their right to be heard.

The message of these talented self-advocates from Bulgaria,the Czech Republic and Spain was summed up by Stani, aged17. She told the committees on the Rights of the Child (CRC)and the Rights of Persons with Disabilities (CRPD): “If youwant to hear my story, you have to be prepared to listen.”

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

The younger people and their families and supporterstherefore welcomed the words of CRPD Committee memberAna Peláez Narváez. She encapsulated the view of the

committee members when she said: "We cannot makedecisions about the lives of children with disabilities withoutlistening to them.”

"These voices of marginalised children with disabilities arenever heard in the UN,” Peláez Narváez added, and thus theCRPD Committee is working to assess what are the mostpertinent issues to young people with disabilities. “The CRPDis especially concerned about abandonment andinstitutionalisation of children with disabilities around theworld. This is an issue globally and must be addressed byStates,” she said.

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

Inclusion Europe President Maureen Piggot said: “Childrenwith intellectual disabilities should be involved in every stageof the policy processes which affect their lives. It is crucialthey have accessible information, as the four self-advocatesemphasized, so they can understand and participate fully andmeaningfully.” ★

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Inclusion Ireland had the great privilege to work withInclusion Europe and PSOUU, the national association whichsupports people with an intellectual disability and theirfamilies in Poland, over a number of weeks between May andJune 2014.

We were asked to deliver training and information on aspectsof our work in Ireland, particularly self-advocacy, working withvolunteers, influencing policy, working with localGovernment, and disability policy.

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

It is too simple to say that this trip was a training event, or thatInclusion Ireland has had any ‘knowledge’ to impart to ourcolleagues in Poland. It is better to describe it as aconversation, or a sharing of experience, as PSOUU is facingthe same question that we all face – how do we change theway we work so that persons with an intellectual disabilityenjoy their full rights as citizens? The answer to this questionthough, is the responsibility of all of society and not just thoseof us who are in the ‘disability sector’. It is the responsibility ofall Government departments and agencies, all localcommunity clubs and associations, all members of society.

To have rights as a citizen means to be more than justrecognized as a citizen; it means to have opportunities toparticipate fully in community life; it means to have theopportunity to play a valued role in your community.

My impression of PSOUU is that it is an organizationcommitted to change, but one that faces some challenges aswell. There is something very special about the organizationrendering it unique, but also something making it very easyto relate to, in that it reflects the same issues being discussedin Ireland and elsewhere.

Clearly, at the level of leadership, people talked about theimportance of developing self-advocacy, and of committing tothe voice of persons with a disability having more influence intheir organization. What makes PSOUU special, and perhapsunique, is that many people in the organization, the majority Ithink, are family members of people with a disability.

The organization is the main provider of services to peoplewith an intellectual disability in Poland. And here they face achallenge.

Which is the most important relationship? Fort theorganization to survive it must provide services for the State,but the model of service it wants to provide, or the Statewants it to provide, will not provide autonomy and self-determination to the individual. People do better the fewerprofessionals, or paid support, they have in their lives – theordinary is the most wonderful.

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

In our conversations, we addressed the difference betweentreating people with ‘dignity’ and people having ‘rights’.Dignity can be understood by each person to mean differentthings, e.g. respect, care, love etc. But ‘rights’ are defined in lawand international agreements. So rights-based work puts theself-determination of the individual at the centre of what wedo. We talked about the difference between self-advocacywhich is supported by service providing organizations, andindependent self-advocacy. The risk for self-advocacy which isnot independent from service providing institutions is thatself-advocates talk about issues in the institution rather thantheir ambitions, hopes and dreams beyond those walls. Wetalked about the needs of younger parents and how toconnect with them, and the risks faced by organizationswhich 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 ofindividuals, but in individuals designing the support and services they want. ★

16 Include

The right to vote as a gateway to a functioning society

Matthew BroadbentInclusion 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, UNCRPD) 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 livein the European Union. At the beginning of 2014, InclusionEurope launched a campaign entitled ‘Voting for All’, aimingto eradicate social exclusion and promote the democratic,inclusive principles at the heart of the European Union. In anydemocratic society, the right to make your voice heard is afundamental part of civic life. Yet throughout a large numberof European Union member states, many of those five millionpeople are rendered voiceless by laws removing their right tobe an active component of a functioning society. As a result,laws are proposed, legislation is passed and policies areimplemented which directly address the treatment of peoplewith intellectual disabilities, but all of which exclude theconsultation of those directly affected. As the “Voting for All”campaign rightly highlighted, no society can claim to beinclusive if it denies any group the basic right to vote.

On 13 December 2006, an historic moment in the rights ofpeople with intellectual disabilities, the United Nationsadopted its Convention on the Rights of Persons withDisabilities (UN CRPD). With 82 signatories, 44 signatories tothe Optional Protocol and one ratification, the Conventionreceived the highest number of signatories for any UNConvention on its first day. Among the many articlesprotecting the rights of one of Europe’s most disadvantagedgroups was Article 29, which states:

“Persons with disabilities can effectively and fullyparticipate in political and public life on an equal basis

with others, directly or through freely chosenrepresentatives, including the right and opportunity forpersons with disabilities to vote and be elected.” 1

Since its opening for signatures in late 2007, the EuropeanUnion, along with 24 of its member states, has ratified theUNCRPD and pledged to uphold and actively promote the fullpolitical participation of people with intellectual disabilitieswithin society. At face value, this would appear a major stride inthe championing of equal rights for citizens with disabilitiesacross the European Union. However, the reality is that manycontinue to be isolated from the political realm.

Earlier this year, the European Union Agency for FundamentalRights issued a report under the name ‘The right to politicalparticipation for persons with disabilities: Human rightsindicators.’ The report set about collecting data to assess how“the right to political participation for persons withdisabilities set out in Article 29 of the CRPD is respected,promoted and fulfilled across the EU” 2. Firstly, according tofigures, in 21 of 28 EU member states, people with disabilitiesare more distrustful of their government than the nationalaverage indicates. Whatever the reasons behind this, peoplewith disabilities are more likely to be a member of a nationalpolitical party in relation to the national average.Furthermore, in Sweden, Denmark and France, over 60 percent of those with disabilities participated in some form ofpolitical activity, ranging from attending a publicdemonstration 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 thedemocratic process than national averages. Indeed, of 18countries surveyed, only one country bucked this trend withCypriot people with disabilities shown to be more trusting ofdemocracy than the national average.

The UN Committee on the Rights of Persons with Disabilitieshas since put Article 29 of the UNCRPD at the centre ofdiscussion, particularly the way in which state parties chooseto implement this into legislation. In discussions this year, theCommittee has stated the need to pay particular attention toensuring that all EU states to ratify this Convention supportthe suffrage of those with psycho-social and intellectualdisabilities. The second key issue is the necessity to supportthe wishes of people from all walks of life – irrespective oflegal status and type of impairment – when seeking toparticipate in political activity of any form. Althoughratification of the UN CRPD (and with it Articles 12 and 29)suggests a state party’s commitment to protecting the rightsof those with intellectual disabilities from a participatoryperspective, many governments are still failing to adaptlegislation to support this.

A particularly relevant example highlighting the gapbetween a government’s commitment to tailor theConvention’s requirements to fit the needs of people withintellectual disabilities and the actual reality lies in the case ofthe United Kingdom. Consecutive UK Governments haveoffered a variety of alternatives to voting at polling stations inan attempt to reach out to previously disenfranchised peoplewith disabilities or the elderly.

The proxy vote is one example of this. Any person with adisability has a right to invite a familiar person, familymember or not, to vote on their behalf. As one of only two EUmember states to offer this form of alternative, theNetherlands also legislating for it, the UK arguably offers oneof the most accessible and adapted systems of voting in theEuropean Union. Although on face-value this appears afeasible alternative to conventional polling station voting,legislation since the introduction of proxy voting has madevoting for people with disabilities considerably more difficult,as it stipulates that the proxy can only vote at the designatedpolling station of the person with a disability. As a result, thiscan often provide a significant stumbling block when proxyvoting as not only is the person with a disability forced to findsomeone trustworthy to act on their behalf, but they mustoften 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 theprocess of voter registration means that many people withdisabilities are discriminated against and ultimately starved oftheir vote. Furthermore, given that only 51% of British peoplewith disabilities use the internet, according to a 2013 University

of Oxford study, many people with disabilities miss valuableinformation related to voting rights3.

The United Kingdom is deemed to offer one of the mostinclusive electoral models across the European Union forpeople with disabilities. It remains one of only seven EUmember 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, theUK remains one of very few states to buck the trend andoverlook legal capacity in the assessment of citizens prior toelections. As the Fundamental Rights Agency report outlines,legal capacity is, in more than half of the cases in theEuropean Union, used as a means of identifying whether ornot a person with a disability should be able to vote. The UK’scommitment to engage people with disabilities in theelectoral process is therefore one which fits the frameworkproposed by Article 29 of the UN CRPD.

Despite this, in a study recently commissioned by Mencap UK,an Inclusion Europe member organisation and charitysupporting the rights of persons with intellectual disabilities,findings suggested the contrary. The survey, carried out inconjunction with the organisation’s ‘Hear My Voice’ campaign,uncovered the reality that as many as 17 per cent ofprospective voters identified as having a disability but beingregistered were turned away from their polling stations dueto their disability 4. The study, which surveyed 553 people witha learning disability in the United Kingdom from June toAugust 2014, also showed that British authorities had clearlynot taken the effective steps to allow for a simple registrationprocess suitable and inclusive for all. With 60 per cent of 236respondents stating that they wanted to vote in previouselections held in the UK but were unable due to aninaccessible and complicated registration process, it is clearthat, despite commitments to implement the UN CRPD in full,including Article 29, people with disabilities in the UnitedKingdom remain at a huge deficit when seeking to vote.

The signing and ratification of the UN CRPD was a major stepin the right direction for many people with disabilities acrossthe globe. But it was only the first step in a long process. TheEU’s vow to ensure the full implementation of the treaty in allmember states underlined that the right steps are beingmade in working towards greater rights for people withintellectual disabilities. Sadly, more must be done to ensurethat people with intellectual disabilities can actually enjoythe rights they have been promised. The huge dividebetween the political rights of British people with andwithout disabilities is a worrying indictment of this. Despitebeing one of only two EU member states to offer a proxy voteand one of eight to provide voters with disabilities with thepostal vote, the UK Government has still failed to put intopractice what it preached by ratifying Article 29. For as longas the gulf between promises and actions remains so vast,people with disabilities who want to vote will continue to bethe 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/

Participating in Europe in Action, Inclusion Europe’s annualevent, is already a tradition for many people with intellectualdisabilities, their families, carers and representativeorganisations. The conference, which consistently gathersmore 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 alwaysprovided participants with an opportunity to exchangeexperiences, practices and policies with like – mindedindividuals from most European countries. It is no wonderthat the feedback from participants has always been glowing.Roy McConkey, a Professor of Developmental Disabilities atthe University of Ulster, described last year’s event as“professional and well organised yet both friendly andencouraging,” while Aimee Richardson, self-advocate and starof 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 ofintellectual disability in Europe, and ensuring that people

with intellectual disabilities are respected as equal membersof society, Inclusion Europe is aware of how importantorganizing an accessible event is. As such, Europe in Action isalways accessible for people with intellectual disabilities,while also being a really fun event to participate in.

Interested? If so, you are in luck, as Europe in Action will takeplace in beautiful Rome in 2015. On 21 and 22 May 2015,Inclusion Europe together with ANFFAS will run an engagingevent that will address effective and innovating ways ofstrengthening the self-advocacy movement at local, regionaland national levels, while discussing the impact of self-advocacy on families. The conference will also address ways inwhich families and self-advocates can work together topromote the provisions of the United Nations Convention onthe Rights of Persons with Disabilities (UN CRPD).

Developed in order to meet the needs of both self –advocates and representatives from organisations of peoplewith intellectual disabilities, as well as specialists andresearchers in the disability field, the conference programmewill mix personal stories from self-advocates with sessionsdelivered by experts in the field or European policy-makers.The personal and political dimensions of self-advocacy will becentral to the programme, particular in relation to issues suchas legal capacity, political participation, accessibility, health,education and community-living.

Participants will discuss the basics of self-advocacy, sharemodels for sustainable self-advocacy in organisations andmeans of organising self-advocacy groups local level. Theywill also address the legal challenges of self-advocacy andpresent the first experiences of self-advocacy in Italy. As aperfect example of the power of self-advocacy to achievepolitical change, the European Platform of Self-Advocates willalso take the opportunity to showcase its work.

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

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

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who are committed to improving European policies, tolearning from each other and to exchanging best practices.Europe in Action also provides participants with a means tomeet national and European policy-makers, to shareconcerns, and to make sure the voice of self-advocates andtheir families is heard. By adopting and promoting aresolution calling for more structural support for self-advocacy groups at all levels, Europe in Action 2015 alsointends to promote tangible change, and offer the nationaland European institutions concrete tool to enact it.

As every year, the following several meetings and events willalso take place during the week of the conference:

■ On 20 May, a Seminar on the monitoring of the UnitedNations Convention on the Rights of Persons withDisabilities will take place

■ On 23 and 24 May, ANFFAS will hold its Annual GeneralAssembly at the same location. This event is for theItalian members of ANFFAS only.

Inclusion Europe and ANFFAS are looking forward towelcoming participants for two days of engaging and eye-opening discussions, in a beautiful setting in Rome. As everyyear, participants will also be engaged in a range of culturalactivities, in what is certainly one of the most beautiful citiesin the world.

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

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

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

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.

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 EuropeDesign: Orangemetalic

Call for contributionsIf 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.

Inclusion Europe

The European Association of Societies of Persons with Intellectual Disabilities and their Families

Rue d’Arlon 55 ■ B–1040 BrusselsTel: +32-2-502.28.15 ■ Fax: +32-2-502.80.10

Email: secretariat@inclusion-europe.org

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