Choice, Support and Inclusion: GLoBaL

Welcome to the firstnewsletter in a series whichInclusion International (II)will publish on the four key priorityareas which our members haveidentified. This first edition focuseson living and being included in thecommunity.

Over the last two years we havebeen talking to families and self-advocates across the Globe askingthem what being included in thecommunity means to them, whatthey need to be included and whythey have been excluded.

As a part of IIs Global Campaignto raise awareness of the right to beincluded in the community, we havelearned about both the successesand challenges which people withintellectual disabilities, their familiesand their communities face inachieving inclusion. These findingswill be documented in our GlobalReport on Living and Being Includedin the Community that will launch inOctober 2012 at our Global Forum,Achieving Inclusion Across the Globe,

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in Washington, D.C. For many people with

intellectual disabilities, living andbeing included in the community isnot possible without supports totheir families. In addition to thesupports required by the individual,families need a range of supports toenable their sons and daughters tolive meaningful and inclusive lives inthe community.

During the negotiations of theUN Convention on the Rights ofPeople with Disabilities II arguedstrongly that the right to live and beincluded in the community was afundamental issue for people withintellectual disabilities and theirfamilies. Article 19 was intentionallycrafted to recognize that living andbeing included in the communityrequires:1. That a person has choice about

where and with whom they live. 2. That individuals and families

have the supports which theyneed to live in the community.

3. That communities (educationsystems, health systems,recreation, transportation etc.)organize themselves in inclusiveways.Taken together, these elements

describe a comprehensive picture ofthe world which we aim to create.What we have heard from Self-Advocates, families and communitiesis that living and being included inthe community is about: ChoICe,Support and CommunItyInCluSIon.

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Living and Being Includedin the Community:Everyone has the Right

Choice

Support

Community Inclusion

Tell us Your Views on Livingand Being Included in theCommunity

How Inclusion InternationalAdvances Living and BeingIncluded in the Community

Inclusion Internationalsposition on Living andBeing Included in theCommunity

Achieving Inclusion Acrossthe Globe II and the ARCsGlobal Forum

editorial

What we need to live and be includedin the community

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What do we want? The same things as people withoutdisabilities. We want employment, our own house, toget married and have children. What can you do? Makesure we go to school. Help us build self-advocacy.

Inclusion is a right

Inclusion Internationals rootsare in the voices of families whorejected the notion that their sonor daughter didnt belong incommunity because of theirdisability. Living and beingincluded in the community isabout fostering that sense ofbelonging and supportingpersons with intellectualdisabilities to build meaningfulreciprocal relationships in theircommunity. At our core arefamilies advocating for their sonsand daughters to be part of theircommunities because they knowits the right thing. Beingincluded has lifelong positive

benefits. People who experiencehigh inclusion are happier andhealthier; they have naturalrelationships and supports; theyare more likely to be employedand less likely to live in poverty.Now, not only do we know thatits the right thing; its also ahuman right.

When the United NationsGeneral Assembly adopted theUN Convention on the Rights ofPersons with Disabilities, for thefirst time in international law,people with disabilities wereguaranteed the right to live andbe included in the community.This means that living and beingincluded in the community is notsubject to proving ones ability,eligibility or entitlement. Itmeans that people withdisabilities have the same right aspeople without disabilities to livein the community with thesupports they need.

It also recognizes thatChoICe, Support andCommunIty InCluSIon needto be in place to make this rightmeaningful. Article 19 is not justabout closing institutions or thephysical location of a house. It isnot just a lofty goal. It realizesthat without choice, support andcommunity inclusion people with

II supports the followingdefinition of an institution:

An institution is any place inwhich people who have beenlabelled as having anintellectual disability areisolated, segregated and/orcongregated. An institutionis any place in which peopledo not have, or are notallowed to exercise controlover their lives and day to daydecisions. An institution is notdefined merely by its size.

disabilities can be just as isolatedin communities as they are ininstitutions. It places anobligation on governments andcommunities to respect whatfamilies and self advocates havebeen telling us all along: we wantto belong; we want to berespected; we want to live atypical life.

The CRPD, in particular Article19, provides families, self-advocates and disabilityorganizations with a frameworkand a tool to ensure that peopleare able to live and be included inthe community.

CRPD Article 19States Parties to this Conventionrecognize the equal right of allpersons with disabilities to live inthe community, with choices equalto others, and shall take effectiveand appropriate measures tofacilitate full enjoyment by personswith disabilities of this right andtheir full inclusion and participationin the community, including byensuring that:a) Persons with disabilities have

the opportunity to choose theirplace of residence and whereand with whom they live on anequal basis with others and arenot obliged to live in aparticular living arrangement;

b) Persons with disabilities haveaccess to a range of in-home,residential and other communitysupport services, includingpersonal assistance necessaryto support living and inclusionin the community, and toprevent isolation or segregationfrom the community;

c) Community services andfacilities for the generalpopulation are available on anequal basis to persons withdisabilities and are responsiveto their needs.

self-advocate, Zambia

Choice, Support and Inclusion: What we need to live and be included in the community3

Living and being included inthe community requires that aperson can choose where andwith whom they live. This meanshaving a voice and control in yourown life. For some this may meanliving alone or with friends; forothers this may mean living withfamily. Choice is about havingtrue options being able todecide where and how you wantto live instead of choosing from apredetermined menu of optionsabout a placement or having nooptions at all.

Being able to make decisionsin our lives is about havingoptions and opportunities andknowing what is possible. To beable to make a choice aboutliving and being included in thecommunity a person needs:

To be empowered to makedecisions about their life andwhat they want.

A positive vision aboutwhere they would like to liveand what they would like todo.

To understand what adecision process means andhow it is achieved.

A voice that is heard andacknowledge by others.

Diverse options thatcomplement their vision.

Supports to make theirdecision a reality.

Innovative and creativeopportunities to be includedin community.Some people may make these

decisions independently. Some

may need support to understandwhat their choices are and whatthe outcomes of their decisionswill be. Some may need supportto articulate their decisions and tomake their voices understood byothers. Regardless of thesupports required for someone tomake decisions in their lives, it isstill up to them to decide.

What families and self-advocates say about choice:

I get to live my life the way Iwant to, make my own choices,have dinner when I want to havedinner, go out and come in whenever I want! I love it!

self-advocate, UK

Ive been going out with myboyfriend for one year and a half. Iwould like to marry him and havemy own apartment. In this momentI participate in a project of theFoundation to share an apartmentwith some mates.

self-advocate, Croatia

I just turned 20 years old and inJapan you become an adult whenyou become 20. I live with myfamily; my parents, grandparents,younger brother and younger sister.I like where I live. I love my familyand my family loves me When Iam ready, I hope I can live in agroup housing shceme underinstructor's supervision like othermember of the Studio. Now, I amhappy working in the Studio andliving at home.

self-advocate, Japan

Article 19 means havingequal Choice.

This means that people withdisabilities should:

have the sameopportunity to choosewhere they live

have the sameopportunity to choosewho they live with

not be forced to live ina particular livingarrangement

Busting Out(a poem by Daniel Beimers)

Walls slowly growing closer,the room growing smaller,restraining, isolating, its cold,its impersonal, forced medication,restrictions, a group mentality.

But thats the old way,inclusion, freedom, living levelheaded,having friends,being an individual, a say in what we do and when todo it (within reason).

Choice

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Living and being include inthe community means thatindividuals and families have thesupports which they need to livein the community this meansin-home disability-specificsupports and assistance but alsothe supports needed to be partof your community to go toschool; to get a job; to take partin community recreation; tohave fun.

Supports for persons withintellectual disabilities mean...

People with intellectualdisabilities require a range ofdifferent supports to enable them toparticipate and be included in theircommunity. It is supports thatmaking living and being included inthe community meaningful. It is thedifference between being there andbeing part of something.

These supports include servicessuch as:

Personal assistance Financial support Help managing household

responsibilities (rent, groceries,meal preparation)

In-home support andadaptations

Support to make decisions Accessible transportation

Supports for families mean... Supports and services for families

should never take the place ofsupports and services to individuals.Yet, families supporting a familymember with disability particularlyin the younger years but, in manycases, as adults as well will needdirect support. These supportscould include:

Knowledge and skilldevelopment

Financial support for disability-related costs

Employment security andincome support

Supports for planning Inclusive childcare Respite services

What families and self-advocates say aboutSupportS

"Once we needed somepsychological help. And thepsychologist told me: "Look atyourself. You need to go towork, the sooner the better".But I couldn't.

How could I put aside mychild? Her problems were allover me. But later I realizedthat my life is one thing, butthere is another life passing byme.

I arranged with mymother about taking care ofmy daughter and returned towork. Everything changed first of all my self-perception,that I'm still worth something,that I'm not any worse thanthe others. It's very importantto return to the society, thenyou can get your child therewith you.

You'll say what if thegrandmother hadn't agreed.But we organized our life insuch a way that we all work,it's possible, of course not full-time, but anyway everybody issatisfied and it helps ourdaughter. It doesn't matter if itis a single-parent or two-parent family, but if you haveinner strength, strong desirefor changes, you'll findoptions, you should try..."

parent from Russia

Article 19 means access tosupport and services.

This means that people withdisabilities and familiesshould have access to:

Support services withintheir homes

Support services withintheir communities

the personal assistanceneeded to help them tolive and be included intheir communities

Supports and servicesthat will preventisolation andsegregation

Supports to fulfill theirdreams and visions

respite

planning andinformation supports

Income and benefits

Support

Choice, Support and Inclusion: What we need to live and be included in the community5

Living and being included inthe community means thatcommunities (education systems,health systems, recreation,transportation etc.) organizethemselves in inclusive ways toensure that persons withdisabilities have equal access toand benefit from communityservices and facilities.

Families, self-advocates and IIpartners have definedCommunity as a place whereyou belong; a place where family,friends and neighbours enjoy lifetogether; where people supportone another. Living and beingincluded in the communitymeans having friends and living atypical life; it means beingrespected. Being included incommunity life school,recreation etc also strengthenssocial relations and networks.

Families often tell us the bestsupport for them is ensuring theirsons and daughters withdisabilities have access to thesame things as their sons anddaughters without disabilities.Having their children withdisabilities attend school,participate in after-schoolactivities, have a job, have friendsare necessary for enabling afamily to live a typical life. Whenthese are not in place families areat risk for financial insecurity,unemployment and high levels ofstress and marital breakdown.

Community inclusion meansgovernments and societies need

to re-think the way our educationsystems, health care systems,employment sector,transportation etc are organized.They need to be organized ininclusive ways. Communityinclusion is about making systemsbetter for everyone.

What families and self-advocates say aboutCommunIty InCluSIon

Article 19 means havingaccess to generic servicesand facilities in thecommunity.

Access to generic services andfacilities in the communityhelps facilitate communityinclusion. This means thatpeople with disabilitiesshould be able to:

use community servicesthat are available toeveryone.

use community facilitiesthat are available toeveryone.

these services include:

healthcare; education;employment;transportation; housing

Community Inclusion

It is difficult to access healthservices from isolated communitiesbecause bus drivers and taxi driverswont stop to take us

parent, Nicaragua

"It helped a lot to take him toschool where he learnt a lot. Whenit was time to transfer him to thespecial unit at his school, I askedhim if I should take him there. Hereplied, dont take me there. So, theteachers left him to continuelearning in the regular classroom.He felt very happy though he couldneither read nor write. He had aleadership role in the studentscommittee. He was well liked andrespected by his peers."

parent, Zanzibar

I have many friends. With myfriends from junior and senior hightschools, I go to Karaoke, go tofestivals or go to restaurants... Lastmonth, when I celebrated Coming-of- Age, I wore formal KIMONO. Allmy family, my neighbors, and friendsjoined to celebrate. I was very happy.

self-advocate, Japan

"After getting educationdisabled people should have theopportunity to work, thegovernment should provide themwith jobs. There should be lawswhich oblige employers to hiresuch people and to take themunder the wing. But in our countryeverything stops at the phase ofeducation. After that, the childrenhave to stay at home, they don'thave anywhere to work."

parent, Russia

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Two years ago, InclusionInternational launched aglobal campaign on Article 19.The purpose of the Article 19Campaign is to hear from familiesand self-advocates about whatliving and being included in thecommunity means to them. We want to know thechallenges and opportunities for making the Article19 a reality and understand the policy and practicalimplications of fulfilling the promises of Article 19.the Article 19 Campaign will result in a globalreport on living and being included in thecommunity to be released in october 2012 atour Global Forum, Acheiving Inclusion Across theGlobe.

the Article 19 Campaign Goals Are to: promote awareness of the isolation,

segregation, confinement and vulnerabilityfaced by people who have an intellectualdisability who are excluded from theircommunities whether in institutions or ininstitutionalized living conditions;

Share experiences and build understandingof the essential elements of communityinclusion and community living; and

Share strategies for national and international

initiatives that move people frominstitutionalized living to communityinclusion.

tell us your viewsII wants to hear from you! We are always

collecting stories and information about whatliving and being included in the communitymeans to you. These stories are posted on ourwebsite and may be used in reports,presentations, and/or information flyers. Yourstories raise awareness about the livedexperience of intellectual disability anddocument the successes, challenges andinnovative solutions that are happeningaround the world. II invites you to share yourstory. We are seeking pictures, videos, andwritten submissions. Submit your stories to:info@inclusion-international.org

Visit our Global Campaign website to learnmore and to find additional resources:www.ii-livinginthecommunity.org

resources

Council of europes Commissioner for human rights Issues paper on living and Being Included in theCommunity released

Commissioner Thomas Hammarberg, the Council of Europes Commissioner for Human Rights, issued apaper on Living and Being Included in the Community. II was involved in providing input to the paper and isrecognized in the paper for its contributions. The paper can be accessed on-line at:https://wcd.coe.int/ViewDoc.jsp?id=1917847.

A Community for All: Implementing Article 19 open Society Foundations Issues Guide and Checkliston Article 19

The Community for All guide and checklist offers a detailed look at the rights identified in the UNConvention on the Rights of Persons with Disabilities (CRPD), especially Article 19 of the CRPD whichprovides for the right to live independently and be included in the community. The guide and checklist areintended to help advocates and program implementers identify the obligations on States to realize theserights. Community for All promotes the right of all people with disabilities to live and participate in thecommunity as equal citizens, particularly in countries in which people with disabilities continue to besegregated in institutions. For more information and to download the guide and the check list visit:http://www.soros.org/initiatives/health/focus/mhi/articles_publications/publications/community-for-all-20111202.

Choice, Support and Inclusion: What we need to live and be included in the community7

What II and its Partners are DoingII CAt member supportingcountry level initiatives onArticle 19

Steve Eidelman, an Article 19CAT member and a globallyrecognized expert ondeinstitutionaliza tion from theUnited States, is working inpartnership with II to supportcountry level initiatives on livingand being included in thecommunity in Colombia, Israeland Kenya. Steves work in thesecountries and elsewhere willcontribute to InclusionInternationals Global Campaignon Article 19. Steve has started ablog to share information abouthis work on Article 19. Check outhis reflections on his blog:www.crpdnineteen.blogspot.com.

Convention Action teamsInclusion International has

built expert teams calledConvention Action Teams (CATs).CATs are comprised of individualsand organizations from across theglobe working in key policy areasaround the world. CATs providetechnical expertise and advice tonational groups, upon request,working on implementation ofthe CRPD. The goal of the CATs isto strengthen the capacity offamily based organizations andself-advocates to use the CRPD asa tool to leverage change and foraddressing and challenging thediscrimination and human rightsviolations faced by people withintellectual disabilities and theirfamilies.

Inclusion InternationalConvention Action team onArticle 19

The CAT on living in thecommunity will work withInclusion Internationals memberorganizations to support thedevelopment of strategies toclose or prevent the constructionor renovation of institutions andto build inclusive communities.The efforts include:

Support and training for self-advocates and families aboutthe right to live in thecommunity;

Assessment of thecommunitys capacity tosupport and include peoplewith intellectual disabilitiesand development of plans toincrease that capacity;

... Inclusion International demands the right of all peoplewith intellectual disabilities to decide where and with whomthey live and to receive the supports they require in thecommunity. Specifically promoting:

That persons with disabilities have the opportunity to choosea place of residence and where and with whom they live on anequal basis with others and are not obliged to live in aparticular living arrangement.

That people with disabilities must be supported by a range ofsupport and community services.

The closure of segregating residential institutions That no further investments are made into the renovation of

existing institutions or building of new segregating residentialinstitutions...

Approved by the General Assembly of II in June 2012

Inclusion Internationalposition

Review of policy, programmesand financing provisions thatperpetuateinstitutionalization;

Development of strategies toencourage governments andservice delivery agencies toshift from institutional tocommunity support systems;

Development of plans to closeexisting institutions and buildsupports in the community.

Provision of on-the-groundtechnical assistance andexpertise to members andpartners. For more information on the

CAT on Living and Being Includedin the Community visit ourwebsite or contact:info@inclusion-international.org.

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Inclusion International, inpartnership with the ARC of theUnited States, will host a GlobalForum, Achieving Inclusion Acrossthe Globe, in Washington D.C. 25 28 October 2012. The forum willbring together families, self-advocates, professional andpartners from around the worldto discuss inclusion and key issuesfacing people with intellectualdisabilities and their families.

Article 19 of the UNConvention on the Rights ofPersons with Disabilities secures,for the first time in internationallaw, a right to live in thecommunity. The Forum willexplore what Article 19 means tofamilies and people withintellectual disabilities and whatobligations it creates forgovernments and others.Inclusion International will launchits Global Report on Living and

Being Included in the Community the result of a two-yearcampaign on Article 19.

Achieving Inclusion Across theGlobe will have informationsessions and dynamic discussionon issues related to: employment,supporting families, achievinginclusive education, ensuringpeople with intellectualdisabilities are supported to maketheir own decisions and what itmeans to live and be included inthe community.

Participants will hear frompeople with intellectualdisabilities and families about thelived experience of living in thecommunity. The Forum willprofile innovative and progressivepolicies and efforts to make livingand being included in thecommunity a meaningful realityfor all people with intellectualdisabilities.

Join us in Washington to talk about CHOICE, SUPPORT and INCLUSION

Achieving Inclusion Across the Globe: a Global ForumWashington DC, october 25 28, 2012

KD.2.03University of east London4-6 University Way, Docklands CampusLondon E16 2RdUKTel.: +44 208 223 7709Fax: +44 208 223 6081www.inclusion-international.org