Inclusive Communities = Stronger Communities - 立法會

立法會CB(2)1496/19-20(06)號文件 LC Paper No. CB(2)1496/19-20(06)

Inclusive Communities= Stronger Communities

GLOBAL REPORT ON

ARTicLE 19: THE RiGHT

TO LiVE AND BE iNcLUDED

iN THE cOMMUNiTY

October 2012

choice

support

inclu

sion

Inclusive Communities= Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

October 2012

Library and Archives Canada (LAC)

Inclusive Communities = Stronger Communities: Global Report on Article 19: The Rightto Live and Be Included in the CommunityISBN 978-0-9917430-0-1

Issued also in SpanishISBN 978-0-9917430-0-8

©2012 by Inclusion International. All Rights Reserved.

Photos on pages 66, 74, 83, 85, 110, 112, 117, 134, courtesy of Ulrich Eigner,www.ulricheigner.com

Project Director: Connie Laurin-Bowie

Translated by Matías Battistón, Andrea Quintana and Marta Trejo. ALFANEX, YourStrategic Language Partner.

Printed in Canada by is five communications

For information or copies contact:Inclusion InternationalKD.2. 03University of East LondonDocklands Campus4-6 University WayLondon E16 2RDTel: 44 208 223 7709Fax: 44 208 223 6081E-mail: [email protected]: www.inclusion-international.com

Table of Contents

List of Tables and Figures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .vList of Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .viAcknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .viiiForeword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .xi

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .1

PART I: The Global Context......................................................................................................13Chapter 1: About the Global Study.............................................................................................14

Chapter 2: People with Intellectual Disabilities, Families and Community;Understanding the Roles and Relationships .....................................................23

Chapter 3: Regional Perspectives ................................................................................................34

PART II: Our Vision of Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .43Chapter 4: People with Intellectual Disabilities and Families Define

What Living Independently and Being Included in the Community Means . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .44

PART III: Where Are We on the Road to Inclusion? . . . . . . . . . . . . . . . . . . . . .53

Chapter 5: Article 19 of the Convention on the Rights of Persons with Disabilities: Choice, Support, Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .55

Choice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .57Supports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .67

Supports to the Individual . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .68Supports to Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80

Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .89

Chapter 6: Future Directions in Advancing a Framework for Inclusion in the Community . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .99

Chapter 7: Institutionalization: Ending the Cycle of Exclusion . . . . . . . . . . . . . . . . . .109

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY iii

PART IV: Achieving Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .123

Chapter 8: The Role of Family Based Organizations in Making Change and Promoting Inclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .124

CONCLUSION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .131

Appendices

Appendix 1: List of Countries and Participants in the Global Study . . . . . . . . . . . . . . .140

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .147

Bibliography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .148

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITYiv

List of Tables and FiguresTablesTable 1 Sources of Information ...........................................................................................................18

Table 2 It’s Not Independent Living...................................................................................................32

Table 3 Euphemisms Used for Institutions......................................................................................84

Table 4 The Right to Decide. Issues and Future Direction ......................................................101

Table 5 Where and With Whom. Issues and Future Direction ...............................................102

Table 6 To Individuals in High Income Countries. Issues and Future Directions............104

Table 7 To Individuals in Low Income Countries. Issues and Future Directions .............105

Table 8 To Families. Issues and Future Directions ......................................................................106

Table 9 Obstacles for Inclusion. Issues and Future Direction ................................................108

Table 10 Second Order Deinstitutionalization .............................................................................115

Table 11 Stronger Communities for All ............................................................................................128

Table 12 Using the Results of Inclusion International’s Research on the Right to Live and Be Included in the Community. Steps to Inclusion ............................137

FiguresFigure 1 Schematic view of Article 19...............................................................................................56

Figure 2 Where do people with intellectual disabilities live. Country profiles survey....67

Figure 3 Community based programmes and services for people with intellectualdisabilities. Country profiles survey .................................................................................71

Figure 4 Forms of support given to families. Country profiles survey..................................79

Figure 5 Employment for adults with disability. Country profiles survey ...........................91

Figure 6 Policies or legislation to promote employment on people with disabilities.Country profiles survey.........................................................................................................91

Figure 7 Education for children with disability. Early Childhood education.Country profiles survey.........................................................................................................92

Figure 8 Education for children with disability. Primary and secondary.Country profiles survey.........................................................................................................92

Figure 9 Inclusive Education. Country profiles survey................................................................93

Figure 10 Educational programmes for adults with disabilities. Country profilessurvey ..........................................................................................................................................93

Figure 11 Characteristics of the health services for people with disability.Country profiles survey.........................................................................................................94

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY v

List of AcronymsADHD Attention Deficit and Hyperactive DisorderAKIM National Association for the Habilitation of children and adults with

intellectual disabilities Israel API Association for Promoting Inclusion ASNIC Asociación Nicaragüense ASDOWN Asociación Síndrome de Down de ColombiaCACL Canadian Association for Community LivingCBR The Community Based Rehabilitation CIS Commonwealth of Independent States CRPD UN Convention on the Rights of Persons with Disabilities DECLOC The Deinstitutionalization and Community Living – Outcomes and Costs DPOs Disabled People’s Organizations EEC Especial Education ClassesIDA International Disability AllianceII Inclusion International INGOs International Non-Governmental OrganizationsMDAC Mental Disability Advocacy CentreMDRI Mental Disability Rights International MENA Middle East and North Africa MENCAP Inclusion International member in the UKMHI Mental Health InitiativeNGO Non-Governmental OrganizationsOSF Open Society Foundation PWID Person with Intellectual DisabilitiesRTE Right to Education UK United Kingdom UN United NationsUNICEF United Nations Children’s FundUNESCO United Nations Educational, Scientific and Cultural OrganizationUNRWA United Nations Relief and Works Agency for Palestine Refugees in the Near

East USA United States of AmericaWHO World Health OrganizationZAPDD Zanzibar Association for People with Developmental Disabilities

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITYvi

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY vii

The UN Convention for people with a DisabilityArticle 19 – Living independently and being includedin the community

States Parties to the present Convention recognize the equal right ofall persons with disabilities to live in the community, with choicesequal to others, and shall take effective and appropriate measures tofacilitate full enjoyment by persons with disabilities of this right andtheir full inclusion and participation in the community, including byensuring that:

a) Persons with disabilities have the opportunity to choose theirplace of residence and where and with whom they live on anequal basis with others and are not obliged to live in aparticular living arrangement;

b) Persons with disabilities have access to a range of in-home,residential and other community support services, includingpersonal assistance necessary to support living and inclusion inthe community, and to prevent isolation or segregation fromthe community;

c) Community services and facilities for the general populationare available on an equal basis to persons with disabilities andare responsive to their needs.

To learn more on the Convention visithttp://www.un.org/disabilities/

Acknowledgments

THIS REPORT IS THE CULMINATION of two years of effortby countless volunteers and staff, families, people withintellectual disabilities; national members and partnerorganizations. Inclusion International is fortunate to havea worldwide network of committed and talented peoplewho generously give us their time to help make adifference in the lives of people with intellectualdisabilities.

First, thanks to our regional coordinators, Shikuku Obosi,Palesa Mphohle, Nagase Osamu, Fadia Farah, Rima Al-Salah, Camille Latimier, Julia Hawkins, David Corner andInés E.de Escallón who not only helped to collect stories,data and coordinate focus groups but provided valuableanalysis of regional issues and challenges .

Raquel Gonzalez and Manuela Hasselknippe had theenormous task of developing a webpage to share thehundreds of contributions which we received in writing,videos and pictures, while Pat Staples organized the photocontributions to be included in the report. AshwiniNamasivayam conducted a literature review whichprovided a substantive basis for our analysis. Thanks toeach of them for their dedication and hard work.

We sincerely appreciate the generosity of Geri Rocksteinwho provided her editing expertise on a volunteer basis.Thanks to the translators, Matías Battistón, AndreaQuintana and Marta Trejo who worked on extremely tightdeadlines to make the report available to our Spanishmembers and to Tom Scanlan and Gail Beglin who yetagain have worked miracles to produce a professionalquality publication under impossible deadlines.

To Inés E. de Escallón who coordinated the research, weare grateful for her tireless efforts to collect and analyze

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITYviii

information. Her insights and perspectives are reflectedthroughout this report.

Thanks to Marty Ford, Trish Grant, Donald Thompson, DonGallant, Simon Parkinson, Hedvig Ekberg and Kristine Vierlifor sharing their experience and lessons learned aboutdeinstitutionalization and the new and emergingchallenges in their countries. Their real communityexperiences were invaluable in identifying critical issuesand future directions.

A very special thanks to Steven Eidelman who dedicatedhis sabbatical to working with Inclusion International tosupport the Global Campaign, pilot initiatives in Colombia,Israel and Kenya and regional events and for providingadvice and support throughout the campaign.

To the principal writers, Steven Eidelman, Don Gallant,Anna MacQuarrie, Diane Richler and David Towell thankyou for the many hours of writing, rewriting, reviewing andediting. It was their insights and analysis that shaped thisreport, turning hundreds of contributions into a criticalanalysis which will shape our agenda for the future. ConnieLaurin-Bowie directed the project from beginning to end,pulling together the final document and drawing theconclusions from the raw material received.

We sincerely appreciate the financial contributions of ourpartners and funders. NFU Norway provided support toenable the participation and contributions of our Africanmember organizations. Fundación Saldarriaga Conchasupported regional activities in Latin America whichhelped us to reach out to members in that region. TheOpen Society Foundation through project fundingcontributed to the regional forums, the pilot initiatives,development and printing of this report. Without thesepartners this publication and the work of InclusionInternational in advancing Article 19 would not bepossible.

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY ix

To all of our member organizations and the manyindividuals with intellectual disabilities and familymembers, we thank you for your courage and willingnessto share your hopes, dreams and fears. We hope thisreport does justice to your vision for the future, yourexperiences of life in the community and all of your effortsto make our communities stronger for all.

Lastly, thank-you to those people whose voices are missingfrom this report. While people with intellectual disabilitiesremain incarcerated in institutions or hidden in theirhomes they remain invisible and voiceless. We hope thisreport helps give them a voice and helps to make thatvoice heard.

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITYx

xi

Foreword

TWO YEARS AGO we embarked on a campaign topromote the right of people who have an intellectualdisabilities to live and be included in the community. Wehave reached out to self-advocates and families aroundthe world. We listened to their stories and heard abouttheir challenges. For people with intellectual disabilitiesbeing included in the community is fundamentally aboutrelationships, to families, friends and community. Familiesplay a critical role in supporting people to be included andin building inclusive communities but justas people with intellectual disabilities feelexcluded, families themselves feel isolatedand overwhelmed.

The isolation and exclusion described in thereport faced by people with intellectualdisabilities and their families is not new butwe are facing new challenges to inclusion inthe community. The current climate has ledto increasing pressure on adults withintellectual disabilities who are alreadymore likely to live in poverty and beunemployed, more pressure on familieswho are caring for and advocating for theirfamily members without support in the community andmore pressure on communities that are divided andexperiencing political and economic crisis.

More than 60 years after many of Inclusion International’snational family organizations were founded to advocatefor inclusion in the community, we face a critical turningpoint driven by social and economic pressures andoutdated models of support. While the global financialcrisis and the corresponding austerity measures have putenormous pressure on communities and on families, weare witnessing communities becoming increasingly

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

divided along ethnic, income, religious and other lines.Reduced investment in social infrastructure and socialcapital that holds communities together and is essentialfor social and economic inclusion is impacting directly onindividuals and families who are already marginalized.

At the same time, the services and support models thatgovernments and communities use to support people withintellectual disabilities are remnants of institutional,protectionist delivery systems and continue to segregateand isolate people.

In the face of these new challenges we have a choice tomake. We can continue to try to do more with less andcontinue to focus our efforts on investment in servicedelivery; or we can fundamentally reorganize and renewour strategies to focus on high value supports and servicesthat help fulfill the promises of the CRPD and especially ofArticle 19.

Self-advocates and families, by contributing to this reporthave provided a clear vision of what living and beingincluded in the community should mean: Choice, Supportand Inclusion. They have also provided a roadmap forbuilding stronger more inclusive communities. Thechallenge for our international movement is to provide theleadership along this new road.

Klaus LachwitzPresident

Introduction

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITYxii

1

Introduction

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY2

Introduction

EVERYONE WANTS TO BELONG. We value being a part offamilies, neighbourhoods, a group of peers at school, agroup of colleagues at work, clubs and sports teams, andhaving friends and neighbours who care and look out forus. Unfortunately all too often people with an intellectualdisabilities are left out – hidden, excluded or keptseparated from the rest of their communities. That’s whyInclusion International fought for the right to be includedin the community, to be recognised as a basic human rightfor people with disabilities. Community is fundamental toour sense of who we are. Communities are stronger whenwe are all included and when everyone can participate,contribute and be valued.

Article 19 of the Convention on the Rights of Persons withDisabilities (CRPD) articulates the right to LiveIndependently and Be Included in the Community. Itobliges governments and societies to:

• Enable people to make choices about how and wherethey live;

• Provide support so that people who have a disabilitycan live in the community; and

• Ensure that mainstream services and systems areavailable and accessible to people with disabilities onan equal basis with others.

Inclusion International (II) is the international organizationthat represents people with intellectual disabilities andtheir families. Our members are national family basedorganizations in 115 countries that work to promote theinclusion of people with intellectual disabilities in theircommunities. Inclusion International adopted its name in1994 as a commitment to and a reminder of our vision: aworld where people with intellectual disabilities and theirfamilies can equally participate and be valued in all

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY 3

aspects of community life. With its member societies,Inclusion International acts as an agent for change on thebasis of four main principles affecting the lives of peoplewith an intellectual disabilities and their families:

• Inclusion in all aspects of everyday society

• Full citizenship which respects individual humanrights responsibilities

• Self-determination in order to have control over thedecisions affecting one’s life

• Family support through adequate services andsupport networks to families with a member with adisability

As a result of our involvement in the CRPDnegotiations, these principles are reflectedthroughout the Convention.

For us, Article 19 is more than just thearticulation of a human right. It providesus with a framework to understand whatthe right means, how policies to supportthat right should be developed andimplemented and how to monitorprogress. Our members report that despitegood examples and practices, there is nocountry in the world where the goals of

living and being included in the community have beenfully achieved for people with intellectual disabilities.

In the absence of services and natural supports in thecommunity and the failure of communities to buildinclusive systems, the vast majority of people withintellectual disabilities around the world depend on theirfamilies for lifelong support and care. Relationships thenbecome central to our vision of living “independently” andbeing included in the community; both the relationshipbetween individuals and their families and the relationshipof individuals and families to their communities.


Despite the promise of the Convention and Article 19 thereality for the vast majority of people with intellectualdisabilities is that they are almost always denied the rightto make decisions about where and with whom they wantto live. They have little or no access to services andsupports (other than those provided by their families) andthey are excluded from participating and contributing intheir communities because community supports are notwelcoming or accommodating and/or because they lackthe supports necessary to use these services (e.g.accessible transportation, personal supports, financialcapacity).

While many issues emerge from the collection ofexperiences and knowledge of people with intellectualdisabilities and their families in this report, the centralmessages from self-advocates and families are:

‰ Choice – People with intellectual disabilities requireand have the right to choice and control aboutwhere they live and with whom; they have the rightto support in their decision making and they havethe right to choose from the same range of optionsthat others in their community have.

‰ Support – To live and be included in the communityindividuals need disability related services andsupports on a day to day basis. Some of thoseservices are currently state sponsored but in the vastmajority of cases they come from families. Familiesneed support from governments and communitiesto play their role in promoting the inclusion of theirfamily member into the community.

‰ Inclusion – Unless communities are organized to beinclusive of people with disabilities througheducation, employment, social, cultural and politicalprocesses, investments in services alone will notenable the realization of the right to live and beincluded in the community.


A History of Exclusion

Throughout history people with disabilities have beenexcluded, persecuted, feared and discriminated againstbecause of their disability. “In ancient Sparta, children withphysical differences were thought to represent the displeasureof the gods and many were left on hillside cliffs to die or werethrown off mountains. In ancient Rome, they were drowned inthe Tiber.”1

In the mid-nineteenth century industrialized countriesbegan to build institutions, asylums and other largeresidential facilities to house, “treat” and “protect” peoplewith intellectual and psychosocial disabilities. Later theeugenics movement which originated in England andspread to Europe, North America and other parts of theworld, influenced societies’ perceptions of people withdisabilities as defective and promoted the idea that thequality of the human race would be improved bypreventing people with disabilities from existing. Theresult was the labeling and segregating of people withdisabilities from society.

From the 1920s until the 1980s in economically developedcountries institutions were the predominant form of publicsupport for people with an intellectual disabilities. Thestory of, and the role played by, institutions in the lives ofpeople with intellectual disabilities and their families variesgreatly across countries and cultures. While the majority ofpeople with intellectual disabilities have always lived withfamily, in many countries throughout the world institutionsare/were used as a primary residential response tosituations where individuals could no longer reside withfamily. Indeed in many countries, particularly in NorthAmerica, Europe, and the former Soviet Union, institutionalplacement became the accepted response and indicatedcourse of action upon the birth of a child with anintellectual disabilities.


Stories related by families throughout these countries tellof parents being advised by professionals to place theirchild with an intellectual disabilities in an institution,forget about them, and get on with their lives; that such acourse of action was in the best interests of all concerned.Coupled with a general lack of support for families raisinga child with a disability in many countries, the result was ahigh rate of institutionalization and, in many places, horrid,sub-human conditions in those institutions. Those horrid,sub-human conditions continue in far too many places.

The role of institutions began to be critically questionedwhen the collective societal view ofintellectual disabilities began to change.This change was fueled in part by theprinciple of Normalization, a conceptwhich began in Scandinavia and spreadthroughout the world. The principle ofNormalization is that people with anintellectual disabilities should have a lifethat follows the patterns, routines andcustoms of other people (Wolfensberger1972). This new approach increaseddemand by parents and self-advocates fora societal response that would enablepeople with intellectual disabilities to livein community, closer to family, and the rejection of thenotion that people with intellectual disabilities needed tobe separated, isolated or congregated for their own good.

In particular, in North America and Europe, increasedquestioning of the value of institutions led to manyexposés, investigations and litigation that revealed thealarming extent of abuse and mistreatment that wasroutinely occurring in these institutions and this in turnfurther accelerated calls for institutional closures (i.e.deinstitutionalization). In the fifty or so years since manycountries have undertaken deinstitutionalization effortsthe research and evidence continues to confirm that large



institutions are not in the best interests of people withintellectual disabilities, that a variety of other smaller, moreappropriate, more individualized options can bedeveloped and sustained, that with appropriate supportspersons with intellectual disabilities can live with family(until, in some cultures, they choose to leave) and that allpersons with intellectual disabilities, regardless of extentor level of support need, can successfully live incommunity.

In countries where large scale institutions were not built,historically, people with intellectual disabilities havesuffered prejudice and discrimination in their communities

and they have been denied their basichuman rights. A legacy of medicalization ofdisability has meant that disability continuesin many parts of the world to be consideredas a health issue to be prevented, cured ortreated. This has often meant few hours ofactual treatment or rehabilitation but areliance on medical professionals rather thaneducators or employers and little or nosupport for the family.

Even as the global disability movement hasadopted and advocated for a human rightsapproach to disability, this history of

exclusion and isolation continues to play a powerful role inthe way that people with disabilities and their families aretreated by society and their communities and even in theway that policies and resources are used to provideservices.

Purpose of the Report

Inclusion International and its member organizationsfought hard to ensure that the right to live and beincluded in the community was part of the UN Conventionon the Rights of Persons with Disabilities (CRPD). The

challenges we face in turning this right into a realityaround the world are multiple and complex.

The CRPD came into force in 2006 and has been ratified bymore than 120 countries. Yet few governments fullyunderstand the implications of implementing theConvention and specifically Article 19. In order to addressthe historic and systematic exclusion of people withdisabilities, our communities, governments and societieswill need to embrace a new paradigm (reflected in theCRPD). Shifting from seeing disability as a programme orissue area in which people with disabilities are therecipients or subjects of policy to a transformative processwhich helps to build stronger communities in whicheveryone participates and contributes. It means lookingnot only at the person with a disability but also at theirfamilies and support circles and the communities that theylive in. Understand how to strengthen the social fabric ofour societies.

Significant research and work has been done aboutdeinstitutionalization and in understanding services andsupports which people need to live successfully in thecommunity. What is missing is the voice of people withintellectual disabilities and their families who have livedthe experience of exclusion and isolation, who understandthe causes and impact of that exclusion and who have avision for what living and being included in thecommunity should look like. We wanted to know:

• What the current situation of people with intellectualdisabilities and their families is in relation to theirinclusion in the community;

• What we have learned about why people areexcluded and isolated;

• What progress has been made;

• What the new and emerging challenges are whichthreaten inclusion;

9Inclusive Communities = Stronger Communities

GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

• What we and our allies should do to achieve thechanges required to make Article 19 a reality acrossthe world.

Overview of the Report

The report will present the perspective of people withintellectual disabilities and their families on living andbeing included in the community. We want to share ourexperiences of inclusion in the community, of exclusionand isolation from the community and the impact thatthese experiences have had on the lives of people withintellectual disabilities and their families.

Part I of the report sets a global context for the study;explains the unique perspective of people with intellectualdisabilities and their relationship to family and exploresregional differences and commonalities in how weperceive living and being included in the community. InChapter 1 we describe how we did the study, and the waysparticipants in over 95 countries contributed their stories,information and knowledge through focus groups, videoand written submissions, surveys, regional forums andpilot initiatives. Understanding the relationship between aperson with an intellectual disabilities, their family,community and society is critical to advancing humanrights and building stronger communities. Chapter 2describes the inter-dependence between people withintellectual disabilities, their families and communitieswhich is the basis upon which we advance inclusion. InChapter 3 we provide a context for the regionalcommonalities and distinct issues affecting people withintellectual disabilities and their families and the right tolive and be included in the community.

In Part II we present the vision of inclusion in thecommunity which people with intellectual disabilities andtheir families strive for and desire. Chapter 4 pulls together


a shared vision created by the voices of people withintellectual disabilities and their families from around theworld.

In Part III we present the findings of our study using theframework of Article 19 as a basis for examining Choice,Support and Inclusion: we draw from those findings somefuture directions for the achievement of theright to live and be included in thecommunity; and we explore the particularexperience of institutions and the closureprocess. Chapter 5 details what we heardfrom people with intellectual disabilities andtheir families about being able to choosewhere and with whom they live; about theservices and supports they receive and moreoften about what they do not receive; andabout how communities and the systemswithin communities (education, health,employment etc) are organized. In Chapter 6we explore the implications of our findingsfor governments and communities and weidentify future directions for that work. Chapter 7addresses the legacy of institutions and the learning wehave done in the closure process.

Part IV of the report points towards directions for thefuture. Chapter 8 reflects on the role of families and familybased organizations as agents for change in theircommunities. Finally in the Conclusion we summarize thefindings of the report and provide a list of strategies forgovernments, communities and families to follow in theirefforts to advance the right to live and be included in thecommunity.




PART I:The Global Context

INCLUSION INTERNATIONAL, THROUGH participatoryaction, research efforts and the development of globalstudies, has demonstrated our capacity not only tomonitor and report on key issues facing people withintellectual disabilities and families but to contribute topolicy and practice by drawing from the knowledge andexperience of people in communities around the world.Our goal is to link local voices to global change. Over thelast decade we have developed and enhanced aparticipatory action research methodology that relies on


Chapter 1:About the Global Study

the expertise and experience of people with intellectualdisabilities and their families. Each of our reports reflectsthe culmination of a process to hear and represent thecollective voices of people with intellectual disabilities andtheir families.

In 2006, we issued our first Global Report on Poverty andDisability1. The report highlighted the relationshipbetween poverty and disability and reflected the realitythat in all countries, regardless of a country’s socio-economic status, people with disabilities and their familiesare disproportionately poor. The message in the reportfrom people with intellectual disabilities and families was“we are invisible because we are poor.” The report pointedto the need for the UN MillenniumDevelopment Goals to include people withdisabilities.

In 2009, in celebration of the 15 yearanniversary of the Salamanca Statementand Framework on Special NeedsEducation, we released a Global Report onInclusive Education2. The report confirmedthat around the world children withintellectual disabilities are more oftenexcluded from school than are otherchildren with disabilities and in manycountries are excluded from the educationsystem entirely. The report presented a platform for theinclusion of children with disabilities in global strategies toachieve Education for All.

Two years ago, at our 2010 World Congress in Berlin, welaunched a global campaign on Living Independently andBeing Included in the Community; Article 19 of the CRPD.The purpose of the Article 19 Campaign was to explorewhat living and being included in the community meansaround the world and to better understand how this isbeing achieved. Our report draws from and builds on thesignificant research on institutionalization and on the


support needs of people with intellectual disabilities in thecommunity including housing, employment andeducation.

The drafting process for the UN Convention on the Rightsof Persons with Disabilities itself reflected a shift inthinking about the role of people with disabilities inshaping policy and practice that impacts their lives. It wasthe expertise of people with disabilities and families thatwas used to write the CRPD. As a result, the Conventionfirmly repositions people with disabilities and families frombeing the subjects of research and policy to being activeparticipants in research and policy.

Living and being included in the community meansdifferent things in different places. There are vast – andoften stark – differences in the socio-economic realities ofcountries; in the availability and provisioning of resources;in culture and tradition; and in the concept andunderstanding of “living independently” in the community.We knew there would be no one answer or one picture ofwhat living and being included in the community lookedlike or felt like. We turned to people with intellectualdisabilities and families to share their expertise andknowledge about what is working and what isn’t, abouttheir hopes and dreams and their challenges and fears. Welooked to people with intellectual disabilities and theirfamilies because living and being included in communityis not one picture; rather it is millions of individual picturesthat are ultimately framed by people with intellectualdisabilities and their families; not experts, governments orservice providers.

We needed a methodology and process to capture thediversity of perspectives and the complexity of the issues.Building on our methodology from previous global reportswe developed processes to gather stories in a variety offormats from people with intellectual disabilities and theirfamilies; to collect information about policy and data at a


country level from our member organizations; and toengage groups of people at regional, national andcommunity levels in interactive discussions. From ourexperience with previous reports we learned how to takebetter advantage of the vast number of stories we receivedand how to better support our members to contributemeaningful information.

The process was designed to reach down through ourregional bodies (Inclusion Africa, Inclusion Asia Pacific,Inclusion Europe, Inclusion Inter-Americana and InclusionMiddle East North Africa), member organizations andnetworks to engage directly with people with intellectualdisabilities and families. In addition, weconnected with academics, governmentofficials, human rights NGOs, and fundingorganizations to get their perspectives andinput.

Our research sought to answer three mainquestions:

1. What does living and being includedin the community mean for peoplewith intellectual disabilities and theirfamilies, and what is their vision ofthis?

2. What exists now, and how does itcompare to this vision?

3. What needs to happen to achieve this vision?

Through various processes we received contributions fromthousands of people in over 95 countries. We receiveddetailed country profiles from 41countries; individualstories from 36 countries; and input from focus groups in23 countries and 5 regional forums.



Regional Forums and strategymeetings

Americas Regional Forum: Colombia, November 2010

Africa Regional Forum:South Africa, March 2011

European Regional Forum: Portugal, October 2011

Asia Pacific Regional Forum:Nepal, October 2011

MENA Regional Forum: Jordan, March 2012

Americas Regional Strategy Meeting:Mexico, February 2012

African Regional Strategy Meeting:Kenya, March 2012

European Regional strategy Meeting:Brussels, June 2012

Organizations Consulted

MDACMDRIMHIIDAOSFHandicap International

Country Surveys

Africa 14Americas 9Europe 9MENA 4 Asia Pacific 5

Stories

36 Countries (people withintellectualdisabilities andfamilies)

Focus Groups

23 countries

Countries

95 countries

Consultations and Country-level initiatives

Consultation on countryexperiences in closing large-scale institutions, Brussels June2012

Pilot initiative with FundaciónSaldarriaga Concha:Developing alternatives toinstitutional care for childrenwith disabilities in Colombia.

Pilot initiative with the KenyaAssociation for the IntellectuallyHandicapped: Developingcommunity supports in Kenya.

Pilot initiative with AKIM:Transforming supports andservices to be more inclusiveand community oriented inIsrael.

Table 1: Sources of Information

How the Information was Collected

We deliberately developed multiple strategies forcontributing to the report as we knew that limitations intime and human and fiscal resources, numerouslanguages, and geographical hurdles were just a few of thechallenges that would be faced in the efforts to gatherinformation for this report. In some countries, focusgroups and events were held. In others, focused effortswere tacked on to existing events to take advantage of agroup of people already gathered. Regional coordinatorsin each region helped initiate data collection and contactwith families and people with intellectual disabilities at alocal level.

We invited our national member organizations, allies,families, people with intellectual disabilities and partnersto contribute to the research through:

‰ Focus Groups – We asked organizations andindividuals to host discussions with families andpeople with intellectual disabilities to share theirperspectives on what their lives are like, where theyare living and whether or not they want somethingdifferent.

‰ Country Survey – Available online and in hard copy,the survey was designed to collect national-leveldemographic data (where possible and available)and to help provide a snap shot of key issues,challenges and successes in achieving inclusion inthe community.

‰ Pilot Initiatives – We worked directly with somecountries to address particular issues they identifiedas barriers to living and being included in thecommunity. These initiatives include developingalternatives to institutional care for children withdisabilities in Colombia, developing communitysupports in Kenya, and supporting our member inIsrael, AKIM, to explore the transformation of


supports and services to be more inclusive andcommunity oriented.

‰ Sharing stories – We asked people with intellectualdisabilities and families to share their personal storieswith us. Through the submission of stories, bothwritten and oral, poems, pictures and videos, peopleshowed us and told us about their lives.

‰ Regional Forums – II hosted five (5) RegionalCapacity Building Forums – Americas, Bogotá,Colombia, November 2010; Africa, Johannesburg,South Africa, March 2011; Europe, Peniche, Portugal,October 2011; Asia Pacific, Kathmandu, Nepal,November 2011; MENA, Amman, Jordan, March 2011– and three (3) strategic regional meetings – MexicoCity, Mexico, February 2012; Nairobi, Kenya, March2012; Brussels, Belgium, May 2012.

Specific tools and resources were developed to assist ourmembers and partners to participate in the process.Presentations on both the Campaign and on Article 19were made available online in English and translated intoArabic, Japanese, French and Spanish to be regionally andlocally relevant3.

Regional capacity building forums, regional strategymeetings and focus groups provided an opportunity tohear from families and people with intellectual disabilitiesabout issues that were specific to each region of the world.The process of having people meet and share theirexperiences provided both important input for the reportand opportunities for people to develop strategies to buildinclusive communities.

In Bolivia we heard, “ This initiative helps to illustrate manyof the protests led by families and civil societyorganizations over the years, in order to acknowledge andgain the rights of people with intellectual disabilities, inthis case, the right to live in community. When trying tocontribute to the report we realize the limited written


information available on the subject, it is unusual fordisability organizations to document and share theirexperiences and best practices with others. Sharing bestpractices would enhance the impact of our interventions.It would enable us to break boundaries and distancesbetween continents, and have stronger impact by drawingon the experiences and strategies developed in diversesituations and contexts. It would be a collectiveconstruction of knowledge in which all contributions arevalued and diffused. Congratulations to InclusionInternational's initiative!”

The Campaign tools, resources andmaterials4 were used in many ways by ourmembers. For example New Zealand,Ireland, Kenya, Colombia and Nicaraguaused the tools to generate a country profileand developed publications that frame allthe work they did for this initiative.

In Colombia, Fundown Caribe inBarranquilla worked with young adults withintellectual disabilities to create personalstories that reflected their own lives usingthe personal story questions and the focusgroup strategy. They shared the stories andthey are continuing their work with this group.

Data analysis enabled inter-country commonalities to bediscovered and further investigated. For example Canada,the United States, Norway, the United Kingdom and NewZealand had similar experiences related to closing large-scale institutions. We conducted a specific consultationabout this to determine what lessons can be learned fromtheir experiences. These findings are documented inChapter 7.

Our analysis also revealed that countries in Latin-America,Africa, Asia and the Middle East faced similar realities inrelation to a lack of services and supports and the


complete reliance on families to provide support and carefor their son or daughter with an intellectual disabilitiesthroughout their life.

In countries where we were working with partners on pilotinitiatives about living and being included in thecommunity, we were able to support our memberorganization in the process of leading community changeand to better understand the role of family organizationsin transforming communities. In Colombia we are working

with a government department to explorealternatives to the current institutionalservices for children at risk. In Israel, we aresupporting the family led organization in itsefforts to transform its services to promotelife in the community.

Throughout the campaign, and as a resultof our approach, we have been able tocollect information at the grassroots,national, regional and international levelfrom diverse stakeholders around theworld. We recognize we need to workharder to hear and understand the voices ofall people with intellectual disabilities.Even with our participatory methodology,

we feel it is important to acknowledge that this reportdoes not fully reflect the perspective of all people withintellectual disabilities. While we have made an effort toinclude some of their experiences, the voices of peoplewith significant support needs, those who have higherchallenges in communicating and people who live ininstitutions remain under-represented.

Our research is the result of the collection of voices fromaround the world telling us about the reality of their lives.As you will see in this report, the richness of our data andknowledge is in the stories of families and self-advocates;in their successes and struggles to make living and beingincluded in the community a reality.


Chapter 2:People with Intellectual Disabilities, Familiesand Community, Understanding the Rolesand Relationships

People with intellectual disabilities

DURING THE NEGOTIATIONS of the UN Convention on theRights of People with Disabilities (CRPD) several disabledpeople’s organizations (DPOs) advocated for specificaccommodations related to their needs. For many of thesegroups the provision of a specific device or service such assign language interpretation, a wheelchair or a ramp



enables inclusion and participation. For people withintellectual disabilities, while some specificaccommodations are necessary and may improve access tothe community, there is no service or support that willenable full inclusion. It is not sufficient to provide a childwith an intellectual disabilities with physical access to aclassroom nor is it sufficient to give them a teacher’sassistant. Real inclusion requires a reorganization of theclassroom, curriculum and teaching strategies. Similarly,real inclusion in the community requires thetransformation of communities; education systems, labourmarket, political systems, transportation systems, etc.

For people with sensory or physicaldisabilities there has been a strong push for“Independence”. The Independent Livingmovement has emphasized the individual’sright to live independently and todetermine for themselves the life they wantto live. Article 19 refers to the right to live“independently” and be included in thecommunity. However the wordindependent is often misused to meanalone or without support and for peoplewith intellectual disabilities and theirfamilies it can create a barrier to inclusion. Ifa person cannot live “independently” thenthey are considered not capable of living

and participating in the community. In order to live“independently” people with intellectual disabilities needsupport and need to have relationships with their familiesand others who enable them to live and be included in thecommunity.

Although Inclusion International’s name, our missionstatement, and the CRPD all mention inclusion, it is inmany ways a concept that is not well understood. In ourmission statement we make it clear that inclusion isdifferent from supports and services. Supports and


services are given to the individual or to the familywhereas inclusion relates to the environment; to thepresence or absence of barriers and to the individual’ssense of belonging. Supports and services are the tools tobe used, not the outcomes to be achieved. Supports to anindividual may make participation possible, but unless theenvironment is welcoming, that individual may not be orfeel included.

The Role and Responsibility of Families ofPersons with Intellectual Disabilities

For the purposes of this report, “families” refers not only toparents and siblings but to the extended family and thosewith whom a person chooses to share his or her life. Itdoes not refer to paid caregivers or service providers orpeople one may be living with but with whom one has notchosen to have a relationship (e.g.: roommates in a grouphome where a person is “placed”).

Since the first global commitment to human rights in theUniversal Declaration of Human Rights (1948), the familyhas been recognized as “the natural and fundamentalgroup unit of society … entitled to protection by societyand the State.” The Convention on the Rights ofthe Child recognized that “the family should beafforded the necessary protection and assistanceso that it can fully assume its responsibilitieswithin the community”. The Convention on theRights of Persons with Disabilities (CRPD)recognizes that families have a role to play inensuring that persons with disabilities can exercisetheir rights and stipulates “persons with disabilitiesand their family members should receive thenecessary protection and assistance to enablefamilies to contribute towards the full and equalenjoyment of the rights of persons withdisabilities.”

25

In Siaya, Fidel has big ideas forhis future.“I want to live in an apartment inNairobi and work as a doctor in ahospital, or maybe as a footballer. Iwill have my own family, a fridge anda car.”In contrast, Fidel’s mother had simplerambitions for her son, saying:“I want him to be able to take careof himself and to live in thecommunity like any other person,without discrimination. I want my sonto be included.”

Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

While the Universal Declaration of Human Rightsrecognizes the family as the “natural and fundamentalgroup unit of society”, their role is even more critical in thelives of persons who have an intellectual disabilities. Thevery nature of intellectual disabilities, difficulty in learning,in remembering, in problem-solving and often incommunicating, means that people who have anintellectual disabilities usually require some degree oflifelong support. As we heard from our members, most ofthis support comes from family members. A mother inBolivia told us, “Most of my time is spent helping mydaughter with everything she needs.” Or as one mother inRussia told us, “It’s a shame that a mother’s life stops afterthe birth of such child”. We think it should not be a shameor an undue burden.

While most children without disabilities gradually requireless and less support from their families as they grow up,and people with physical or sensory disabilities also startto develop more and more independence and less relianceon family, research has shown that after age 10, childrenwith intellectual disabilities start to requiredisproportionately more support because:

• The family member does not go to school or workand requires someone at home caring for him or her;

• The family member can’t be left alone when parentsand others go to work or to social occasions;

• Parents need to devote time to finding supports andservices, attending doctors’ appointments, etc.;

• The family member requires assistance with daily lifeactivities – feeding, bathing, toileting, etc.;

• The family member needs help to find and keep a job.

The nature of intellectual disabilities means that a personwith an intellectual disabilities will usually require someform of lifelong support, and the responsibility forproviding that support usually falls to families. The CRPDcalls on families to “contribute towards the full and equal


Self-advocates said:IN BARCELONA ...• We know what we want and how

we want to live. We need theopportunity to express it and supportto get there.

• Few of us will choose an institutionas a place to live. Support needscannot override our wishes andwants of one's own life.

• We have the ability to assume theresponsibilities of independent living,with adequate supports.

• The environments where we live givelittle credit to our desires and abilityto manage an independent life andis a major obstacle.

enjoyment of the rights of persons with disabilities”. Giventhe situation of most individuals who have an intellectualdisabilities and of their families, this is a dauntingchallenge. If communities are not welcoming, if servicesand supports are not available, parents often find thatcontributing to the exercise of the most basic humanrights for their family member with a disability – such asgoing to school or playing in a public park – is a majorchallenge. A recurring theme from focus groups was“What will happen to my child after I am gone?” Thecountry survey from Myanmar (Burma) wrote, “Families feelthat a person with an intellectual disabilities is also one oftheir family members. However, they have been feelingthat sometime it is a burden. They don't [know] where theywill take them when they die.” However, the stories weheard also demonstrated that the more individuals wereincluded in their communities the less was the burden onfamilies.

In every country, our members confirmed that family(however defined) was the foundation to an inclusive lifein community. There was full agreementthat for children the family structure wascritical. Simply stated our members believethat children need a family in which togrow, learn, thrive and be nurtured. Wherelife within the nuclear or extended family isnot possible, then another family is thepreferred option – rather than options suchas orphanages, group homes or institutions.

The role of family with respect to adultswith intellectual disabilities is a little morecomplex. Our consultations and supportingdata confirm that the majority of adultswith intellectual disabilities live with family.What is less clear is the extent to which thislife within family is within the cultural norms of theparticular society, whether living with family is a choicemade by the individual and/or their family, or if living withfamily is simply the result of there being no other moreappropriate options.


SPAIN ¨My family did not want meto live in a home away from them,but we decided to try independentliving. If all went well perfect, but ifnot, then nothing would happen, ,Icould come back to their home. Iknow that always I have my familywith me. The problem comes whenyou have no one and you arehelpless¨


The other complicating factor in commenting on the roleof family is that invariably, both families and individuals,reported that inadequate supports were being provided tofamilies to assist in their role as primary caregivers to theirsons and daughters.

There are many situations where continued living at homeis the preferred and typical choice, but this is possible onlywhen adequate supports are provided. In many countriesit is the general expectation that adult children will leavethe family home upon reaching adulthood. This is notpossible for people with disabilities if other options do notexist. In such situations, even in the presence of adequatehome supports, choice is being denied.

Families throughout the world told us that they do notdeny their responsibilities for their family members,whether as a child or adult. They told us clearly that theydo not wish to shift this responsibility to society orgovernment. What they want – what they need – issupport in fulfilling that responsibility. They need supportthat will provide for the health and well being of theirfamily member and also their family.

The lack of a welcoming community or of supports andservices does not limit the responsibility for families to“contribute towards the full and equal enjoyment of therights of persons with disabilities”. The growth of the self-advocacy movement of persons who have an intellectualdisabilities has demonstrated that many people who havean intellectual disabilities are very skilled at expressingtheir wishes and being much more independent than theirfamilies had ever believed. The focus groups of familiesand of people who have an intellectual disabilities showedthe two sides of the coin of the right to autonomy and theneed for support.

When people are included in their communities and whensupports are provided in very natural ways those supports

The parents were concerned abouthow the self-advocates would care forthemselves and avoid harassment fromthe community. – Lesotho

often are invisible, but they are very necessary for theinclusion to be real. A survey response from India said,“One of the positive features of Indian society is that Personswith disabilities generally live with their families in majority ofcases. However there are times when natural parents are nomore and when no support available by the extended family,they face a severe problem. This problem is very acute amongnuclear families and in urban areas.”

At the same time many of the concerns of parents are veryreal. For example, there is the potential for their sons anddaughters to be exploited and abused, and sometimes thewishes of the person who has a disability may beunrealistic because of financial or other constraints;therefore parents may justifiably want to ensure that thereare safeguards to protect their sons and daughters. Theobligation on families to be responsible for their familymember who has an intellectual disabilities needs to becarefully balanced against the right of the individual tomake his or her own decisions.

However, there are challenges that persons withintellectual disabilities face with their families. The mostcommon is overprotection. A focus group in Nicaraguareported that overprotection by families limits theparticipation and free expression of people withintellectual disabilities and also leads to their feelings ofinsecurity. A group of self-advocates in Europe explained itthis way, “We need your support but we are the ones tomakes the choice!” Self-advocates in Hong Kong had amessage for their families:

“We need your support.

We need your respect.

We need your understanding.

We need you to have confidence in us.

We need you to learn to change with us.

We need you to welcome us to be part of the family.


ISRAEL ¨My family lives on aKibbutz ("Beit Alfa"). Three years agoI moved to Kibbutz Hefziba where Ilive with my friends who have downsyndrome. I wanted to live here inthis neighbourhood. I chose to livewith my friends. I am independent inmy choices in life. I sleep alone inthe room where I have my ownshower. I am independent at work. Iwork in the" Izrael" Kibbutz at thedining room. I love living here in theHefziba Kibbutz¨ – Irit Regev

We need our brothers and sisters to work together tosupport our dreams and aspirations.

We hope we can learn from each other.”

Another issue is that families sometimes fail to recognizethe rights of a person with an intellectual disabilities asseparate from the rights of his or her family. This mayresult in parents’ decisions to sterilize their daughters toeliminate any chance of pregnancy or to ease care forpersonal hygiene. In extreme cases this has led to surgeryand hormone treatments to prevent children from growingand maturing physically to make care by parents easier.

Further, the right of children to grow up as part of a familyis often ignored because of disability-specific systems. Incountries with institutions, families are given the option toplace their child in a residential facility instead of pursuingoptions for alternate family care such as fostering andadoption.



Parents and siblings said ...

KENYA “My concern is about the future and the kind of poverty that we are living in. We are aging andit’s a very bad scenario.”

UGANDA “Who’s training our child who has a disability – father not willing; mother no skill; community no time;government no resources.”

COLOMBIA "With regard to the autonomy to move from place to place me as the father of Laura would NOTallow it, I will never let her go out by herself and not because she cannot be trusted, but because I do not trust theenvironment in which we live” – Father in a focus group

BENIN “Application of this article will be difficult in our context, the ideal desire is that somebody lives all the timewith the person with an intellectual disabilities, because they can’t stay alone they need support So livingindependently is not possible, do we have to say our wishes or to make realistic suggestions?”“We are so sorry because she can[not] tell us what [is] wrong. We are tired, we cry also and we have to go to workat 8. Every night we are anxious, are we going to sleep or not? We suffer a lot but she is included at home, in thefamily. We love her so much, and give her affection, we think that she needs specialist therapist and institution, butwe don’t have it in Benin. We are not happy at all, we are afraid for the future because intellectual disabled peopleare marginalized.”

COLOMBIA “Sadly I have to say with the death of my mother and Margarita moving with me, we have been ableto open many doors," says Beatriz. She strongly believes her sister has to be more independent. Not all her othersisters believe the same but Beatriz has shown that by her sister attending an inclusive arts school, where they givepainting classes for adult women, has been a very successful experience for her and for the women who study there.

JAPAN “For it is essential to have the support of family they represent our main source of help. Many of us shareour parents concern for the future without them, but rarely talk about it together. Anticipating a life project itself isreassuring to our families and encourages the opportunity for them to see their children / as to their vital needs anddesires met when they are alive.”

ZANZIBAR “Too much freedom exposes our children to grave danger, they are prone to assault by bad people,sexually abused, over-dependent on parents, excluded, don’t feel good about themselves, people look down uponthem, they are called names.”


Table 2. It’s Not Independent Living

IT’S NOT INDEPENDENT LIVINGArticle 19 and The Declaration of Interdependence

Steven M. Eidelman – June 1, 2012H. Rodney Sharp, Professor of Human Services Policy and Leadership

The heading of Article 19 of the UN CRPD “Living independently and being included in thecommunity” is disconcerting to many families, and I think it is a misnomer.

Article 19 says “States Parties to this Convention recognize the equal right of all persons withdisabilities to live in the community, with choices equal to others, and shall take effective andappropriate measures to facilitate full enjoyment by persons with disabilities of this right andtheir full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence andwhere and with whom they live on an equal basis with others and are not obliged to livein a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and othercommunity support services, including personal assistance necessary to support livingand inclusion in the community, and to prevent isolation or segregation from thecommunity;

(c) Community services and facilities for the general population are available on an equalbasis to persons with disabilities and are responsive to their needs.”

Article 19’s language is strong and clear, although it does not specifically call for closinginstitutions. However, its provisions cannot be implemented in the context of residentialinstitutions. Article 19 (a), (b) and (c) are simply incompatible with institutionalization.

Article 19 is also interdependent with other parts of the CRPD, with everything fromtransportation, to respect for the person, to mobility, to education and so on. As with allpeople, the concept of interdependence is an important principle inherent to the CRPD. Forexample, Articles 3 and 26 of the CRPD support the concept of interdependence as well.

The whole idea of “independence” is culturally specific. In some societies we value the idea ofan individual living alone (“making it on their own”). However, in many parts of the world, forall people in a culture, the extended family is seen as a support network and link to thecommunity. The extended family may include people not related by blood or marriage, and aswith all people, people with intellectual disabilities experience community in a variety of ways,interacting and forming relationships with many different people.


To effectively implement Article 19 we need to stop telling families that people withintellectual disabilities are going to live independently. To many families that sounds as ifpeople will live alone and Article 19 does not call for people living alone nor does it call forpeople to live without needed supports. Article 19 does not define independence as peopleliving alone but rather is about choices and control of one’s life. Living alone is not the goal,though some people may prefer to live that way. However even people who want to livealone do not want to be lonely. Humans are dependent and interdependent on otherhumans. Interdependence is a good thing; it is desirable. Multiple studies show thatpeople with disabilities are all too often lonely. Studies also show that when you live with alot of people who are not your family you are more likely to be lonely than when you livewith a few people. Study after study also show that we can help people with all levels ofdisability plan and take control of decisions large and small impacting their lives. Wesometimes call this “person centered planning and supports.” The goal of Article 19 and theCRPD is interdependence, self-governance and self-determination, not independence fromother human beings. Article 19 is about people with intellectual disabilities being fullcitizens, people with meaningful and realistic choices and people with both rights andresponsibilities in their community and in their nations. It is about the quality of life aperson can enjoy when properly supported, not about how much support they need tolive. For some people this interdependence means that they need support to exercise boththeir rights and responsibilities. Article 12 provides a framework for people who may needsupport with some or most decision making.

It is of course possible for people to be independent in performing tasks e.g. dressingoneself, feeding oneself, getting around the community without support from paid staff orother people. The concept of independence as it relates to disability comes from the testsand scales used to measure functioning; can a person dress independently, can a personmake their meals without assistance, etc. Ability does not mean readiness for living in thecommunity interdependently, however. We know how to support people to beinterdependent and in control of the major aspects of their lives, regardless of their level ofdisability. However for most people with and without disabilities, an important goal in lifeis meaningful relationships, friendships and community connections. In other words –interdependence.

The interdependence of human beings builds social capital, and social capital strengthenspeople and communities. Being part of a naturally occurring network in a village, city ortown, one to which people not directly connected to disability are part of, builds value forpeople with intellectual disabilities and for families. It connects people with and withoutpaid relationships. Being part of a community, being networked with other people fulfillsso much of what the CRPD is all about.

So let’s stop saying people are going to live independently. It scares families. It scares me.

One World, Universal Principles, Diverse Realities

AS A GLOBAL ORGANISATION, Inclusion International hasopportunities to bring its members, including people withintellectual disabilities and their families together, acrossthe diversity of geography, language, culture and otherdifferences. That is of course one function of this globalreport.

A striking aspect of these transnational encounters amongpeople with intellectual disabilities is that typically, even if


Chapter 3:Regional Perspectives

they do not share a common language – or indeed in somecases have no spoken language – almost always there is asense that people understand each other and empathizewith each other’s situation. Certainly for those who as self-advocates already have some experience of speaking upfor themselves, they are quite quick to share both somecommon features of the discrimination they face. Acommon theme is not having access to the same lifeopportunities as their brothers and sisters. They alsodiscover they have common aspirations like wanting to belistened to by those around them, get the support theyneed to lead their own lives and join in with what theirnon-disabled peers take for granted.

When family members get together, especially parents ofchildren with intellectual disabilities, they almost alwayshave an immediate and intrinsic understanding of thestories told by other families. They share their experiencesof giving birth to a child with a disability, the struggles toget an education for all their children, the need for theirchildren with disabilities to have opportunities to contributeas young adults and the almost global concern about whatwill happen to their children when they are no longeraround.

In these senses our movement is based in a very real sharedexperience of ‘being in this together’ despite otherdifferences which may include personal affluence or accessto publicly-funded services.

We published much of the material generated through our global studies on theinternet. One such publication is the national report from our member in NewZealand (IHC) which gives a particularly clear account of what people withintellectual disabilities and other family members say about their lives andaspirations. Soon after posting this report, we had a message from a Colombianreader whose younger brother is currently attending a special school there to sayboth how similar what the New Zealanders are saying is to the views of her brother– and how great it was that she and he could take inspiration from the images of abetter life shared by people on opposite sides of the Pacific Ocean!1



This of course is also the core sentiment which underpinsthe 1948 Universal Declaration of Human Rights and thelatest (2006) United Nations Convention on the Rights ofPersons with Disabilities. The human rights on which theConvention are based are universal: we are one humanity.Our challenge as a global organization is to campaign forthese universal principles while recognising andunderstanding the different realities experienced by ourmembers in different places, and therefore the need toshape strategies for making progress which recognisedifferent starting points, different opportunities andbarriers, and different priorities on the long road tobuilding just and inclusive communities across the world.

In this report we both concentrate on what is common e.g.the visions shared by people with intellectual disabilitiesand families summarized in Chapter 4 and also on howefforts to advance the three building blocks for achievingArticle 19, (choice (greater self-determination), supportand inclusion in the wider community) need to besensitive to these diverse local and national realities asanalyzed more fully in Chapter 5. In the report we try tocombine these two objectives, drawing on the material wegenerated from across the world. In addition we havedeveloped a shorter paper which offers more distinctregional perspectives written by people who have workedwith us in each of the five regions which make up InclusionInternational and who know the material from their region.Summarizing some themes from these five perspectiveshighlighted intra-regional commonalities and differencesand regionally-specific issues.

Our efforts in Europe revealed that as a region thesituation of people with intellectual disabilities andfamilies in different countries were more alike than in otherregions. Generally, participants indicated that while therehas been varying degrees of success in securingcommunity living options, in most countries residentialfacilities continue to exist and there is consensus thatimprovements are needed to better support people to live

and be included in their community. Self-advocatesexpressed that while they are consulted on decisionsabout where they want to live, the final decision is usuallymade by the family or a legal representative. In Sloveniawe heard: “Yes, person is consulted, but parent/guardianmakes the decision.” And, in Belgium a self-advocateremarked “... since there are long wait lists and no placeavailable there is no real choice.” Throughout the region aconsistent challenge identified is the impact of austerityeconomic measures on the provision of supports neededto have a life in the community.

In the Americas, we found significant intra-regional differences. The realities for peoplewith intellectual disabilities and their familiesin many countries in Latin America weremore similar to those in Africa, Asia and theMiddle East than to North America. However, similarities across all countries inthe region include that families provide themajority – if not all – of the care and supportfor their family member with a disabilityacross their lifespan; and, that people withdisabilities are most likely to live in poverty.

The extent to which individuals and familiesare supported varies greatly throughout the region. InNorth America and some countries in Latin America,supports and services – including disability-relatedsupports, income supports, and health care – are morereadily available. In other countries there is nothingavailable for individuals or for families. Similar variationsare also noticeable in the area of education. It is importantto note that while the countries currently providingsupports and services are comparatively doing better thanother countries in the region, we know that the supportsand services being provided often fall short of meeting theactual needs of individuals and families and need to beenhanced and improved.


Despite years of successful deinstitutionalization efforts inNorth America, institutions remain far too commonthroughout the region.

For this study, our regional coordinator in Africa visited 11countries to conduct focus groups and meetings andsupported the collection of 14 country surveys fromAfrican countries. Meetings were conducted in locallanguages and the regional coordinator was able toprovide an analysis of the discussions. As a result, ourknowledge about the region – one where little to no state

support is available to individuals or familiesand large scale institutions are relativelyuncommon – was vastly enriched and theAfrican perspectives on living and beingincluded in the community are betterreflected in the report.

While the lack of institutions and provision ofsupports enabled a focus on more naturalcommunity-based supports, it also reflects astark reality that there are no publicresources being used to support people withintellectual disabilities and families. Asreflected throughout this report, it is largely

families – many living in absolute poverty – who areproviding all of the support and care for people withintellectual disabilities. In addition, if a child with anintellectual disabilities cannot go to school, then themother cannot work outside the home resulting in adouble disadvantage. Commenting on the efforts offamilies the coordinator said, “Many are stumbling in thedark trying to find the right path unassisted; the vastmajority are trying to offer their child a decent life,sometimes at enormous personal cost – both emotionaland financial.” Beyond meeting the day to day needs oftheir family member with a disability, families in Africastruggle with societal prejudices and myths that disabilitywas a punishment from God.


Issues of diversity and unique religious and cultural issueswere raised in the Middle East and North Africa (MENA)region and others. Our efforts in regions where thecultural norm for all people is to continue to live within thefamily unit as adults, revealed confusion about what ismeant by living and being included in the community. Wediscovered it is often inaccurately understood to meanliving alone. Respondents informed us that cultural andreligious perspectives on living and being included in thecommunity had to be reflected in our understanding ofArticle 19.

Through focus groups, surveys and stories we heard thatstigma and shame remain a challenge. In the MENAregion, our regional coordinators reported that:“...admitting to having a girl with intellectual disabilities,especially if she has more than one sibling who is also agirl, might mean that sister/s will not be married.”Nevertheless there are currently encouragingdevelopments in the emergence of self-advocacy and theunderstanding among people with intellectual disabilitiesthat they too have rights.

Intra-regional differences were noted in most of theregions but nowhere more so than in the Asia Pacificregion. The region is vast in size and home to 60% of theworld’s population. The differences between countries inthe region – New Zealand to India to Vietnam – aresubstantial. While the study pointed to the manydifferences in the lives and experiences of people withintellectual disabilities and families from country tocountry, it also highlighted a substantive rise in the self-advocacy movement throughout the region. We receivedmany stories from self-advocates in Japan, Hong Kong,Malaysia, Myanmar, and Cambodia. These stories provideexciting examples of self-advocacy that are documentedthroughout the report.


Responding to Diversity

Inclusion International regions are mainly a response toglobal geography. It is a potential strength that eachincludes a diverse range of countries. Within countries toothere can be considerable diversity in people’s experience,e.g. shaped by inequalities in income and the differentpatterns of life in urban and rural settlements. Learningfrom comparing and contrasting these differentperspectives we can identify some of the most importantstructural, cultural, economic and historical factors whichare important in planning action to advance the principlesof Article 19 at different levels of aggregation (local,national, regional, global). These are elaborated more fullyin what follows, especially Chapter 7, but we summarizehere four important themes for subsequent consideration.

‰ Family structure, culture and personal autonomy

Family is critical to the well-being of people withintellectual disabilities but family structures varyhugely, from the single parent or small nuclear familycommon in economically rich countries to the largeextended families and indeed membership in localclans which are still common, for example is somerural parts of Africa. Alongside these structuralfactors there are also differences in familyexpectations e.g. whether and when (adult) childrenshould leave home and the family members’responsibilities to each other. Another aspect ofculture relates to the basis on which people withdisability experience discrimination, e.g. fromtraditional views about disability being apunishment for wrong-doing or a condition which isinfectious, to the medically-inspired attention to theperson’s “deficits” as the cause of their problems. Aswell in many parts of the world the concept that aperson with an intellectual disabilities has rights andhas the legal capacity to exercise those rights is notunderstood or accepted. In turn there are widely


different expectations in different cultures about theextent to which individuals are “free” to make theirown choices or instead bound by what thecommunity deems appropriate for their social status.

‰ The strength of civil society

Overlapping with these issues of family structure andculture is the nature of community and the forms ofvoluntary organisation which societies encourage. Insome high income countries, traditional social capital(e.g. in extended family structures) isweak but there are many ways in whichcitizens can come together voluntarilyfor mutual aid and to advance theirinterests, as indeed we see in some ofthe family associations whichconstitute our movement. In otherdeveloped countries such as theformer Soviet bloc, non-governmentalorganisations (NGOs) are both a recentand a relatively fragile network forsupporting people with intellectualdisabilities and their families. In othersocieties such as in Africa and Asia,there is very strong social capital but itis based on traditional clan and local authoritystructures. Choices and control for many people inthose cultures are dictated by the clan or tribe.

‰ Economic development and social inequality

Beyond these social connections there are of coursealso massive global inequalities in the extent ofeconomic development and the distribution ofaccess to the world’s material resources. Withincountries too there can be huge disparities in wealth(including between urban and rural areas) andtherefore in the resources available for action, e.g. tofund support for people with disabilities and theirfamilies. Indeed the absolute poverty experienced by


so many families in most countries of the global“South” is a huge constraint on their scope forachieving better lives. Everyday reality is aboutsurvival and the ‘vision’ of people with disabilities islikely to be highly practical, concerned only with howto get by and make a contribution to theirhousehold.

‰ State investment in equal citizenship and itshistory

Finally, and overlapping strongly with economic andpolitical development, there are huge variations inour reports from countries in the extent to whichgovernments have accepted responsibility forensuring equal citizenship for all the population, e.g.through investing in universal education, access tohealth services and social security benefits or bycontrast the extent to which people, especiallypeople with disability are dependent for support onfamily and charity. As we shall see however, there arealso significant differences in how governments haveinvested in social welfare, especially in the extent towhich historical and current investments eithersupport the full inclusion of people with disabilitiesin their communities or promote (for examplethough institutionalization) their social exclusion.

We will keep referring to these four aspects of diversity aswe report the findings from our study in the coming pagesand show how they are relevant to weaving together thestrategies required to achieve fuller implementation ofArticle 19 in different places.



PART II:Our Vision of Inclusion

Chapter 4:People with intellectual disabilities andFamilies Define What Living Independentlyand Being Included in the Community Means

IN THE DEVELOPMENT OF THIS REPORT we collectedcontributions from families and self-advocates in over 95countries. Through focus groups, interviews, written andvideo stories as well as regional forums, we heard fromthem about what they believe being included in thecommunity means.


In some regions of the world the question and the ideawas difficult for both self-advocates and families to define.Self-advocates who live at home and receive little or nosupport often could not imagine alternatives and familiesfeared for the safety of their family member in poor andviolent communities. In many countries living away fromone’s family is not the norm. For those families imaginingand developing supports and services to help the family isthe challenge. For others the limited options available forhousing, poor access to education, employment andtransportation and the denial of the right to exercisechoice made the question of what inclusion in thecommunity might look like especially difficult. Yet despitethe challenges of imagining real inclusion, self-advocatesin every region expressed clearly what inclusion shouldlook like from their perspective.

Self-Advocates Have A Clear Vision

Self-advocates told us very clearly that livingindependently and being included in the communitymeans being able to make decisions for themselves:choosing where and with whom they live, deciding whenand what they eat and how they spend their days. Theymay need help and assistance with shopping, withfinances and with day to day tasks. For some moresignificant supports such as assistance withcommunicating and eating are needed. They may wantto have that assistance from their family but there aretimes that they need other people in their lives to helpwith these things. In the receipt of support and assistancethey want choice and control in from who and how thatsupport is provided. Most of all self-advocates describedhow inclusion meant having friends, going to school,having a job, participating and being accepted andrespected in the community. One self-advocatecommented that living in the community meant “realizingour dreams”. Another said “you only know that you are


In Swaziland they told usinclusion means:• Freedom of speech and being free

to live anywhere one wants • Having employment like other

people who do not have disability• Being included in community

activities• Being helped to have fulfilled

future • Being respected and honoured• Being heard and listened to • Having self esteem

From the stories in Barcelona“Living alone means: more freedom,not rely on what anyone else says.What I like is that after work and gethome I can relax and be calm. Visitfamily whenever I want. For me itmeans I can do whatever I wantwithout been controlled. By having lesscontrol I have more freedom.”“Independent Living means havingobligations. Before I came home andeverything was done, now I have to doeverything myself. If I do not do thethings, no one will do them for me andif I do not do them well will be myresponsibility. For example, with themoney, now I know the value of thingswhat they are worth, I know I have tomake ends meet, I have to organizemyself to pay all expenses. I know thatnot everyone has the opportunity tolive alone and I am very lucky to beable to choose where to live. Living inan institution is not independent ever.”

respected when you live in the community.” Self-advocates know what it means to be excluded and theyalso defined inclusion. In Kenya self-advocates said,“Inclusion is to do what other people do.” In Nicaraguaself-advocates said, “(Community) is the grouping ofpeople who live and communicate with each other,whether they have a disability or not.”


We need ...• the labour market to open for us as

the gateway to live in thecommunity. Disabled people live invery vulnerable economic situationthat limit their ability to work.

• personal support services to ensuresafety and wellbeing to those of uswho live independently and ourfamilies.

• the development of public housinginitiatives

• to broaden our very limited socialenvironments. Our families,professionals and other people withdisability remain our main and onlyconnections

A focus group in Hong Kong told us: Living in the Community meant ...

• To have the key• To have total freedom• Free to shop whatever I like• Have choices in what I want to eat• Free to choose how to spend my leisure• Free to choose where to hang around• To be with my parents• Be able to do all the house work• Free to date my girl friend• Able to plan my schedule• Free to meet friends• Being an adult• Being independent.• Free to enjoy life• Free to enjoy the cultural performance until the show ends.• To have privacy• Have more personal space• Need support to guide me in daily living, to get a job or even my

dating and marriage• I need to pay rent and organize my activities• I need to find social workers to guide me to all the housework and

manage my finance• Best to have a helper to do the housework• Be with my family

Self-advocates in Spain told us:Community living is ...• a personal challenge and an

opportunity to grow and perform• access to independent living and

adult life• about quality of life and personal

satisfactions• encouraging more social presence• being treated with respect and

dignity

A Family Perspective: Imagining a BetterFuture

Families who participated in the focus groups and regionalforums told us their stories of the struggle to support theirfamily member. The idea of a better future and inclusion inthe community inspired both hope and fear. When askedto describe what inclusion in the community might looklike for their family member, families talked about havingtheir sons and daughters respected, valued and supported.They talked about the family member going to school,being able to play with other children, participating inreligious groups and having neighbors whoaccepted and supported their familymember. Even as they imagined a betterfuture, the hope was always tinged with fear– fear for the safety of their family member,fear for the future when they would nolonger be there to provide care and support.

In Chile, we were told “This initiative seemsexcellent to me because it will help usunderstand [that] although sometimes wethink we are far from the goal, [this is] not atragedy, the tragedy is if we lose hope inchange and when we get discouraged bywhat we lack to reach the goal. Those whosay this is IMPOSSIBLE, stray from the path ofwhich people, as you and I, have undertaken,the path of change!”

In our regional forums families defined community as aplace where you belong; a place where family, friends andneighbors enjoy life together; where people support oneanother. Living and being included in the communitymeans having friends and living a typical life. Participantsalso recognized the challenges and fears about living inthe community. Often communities are not verywelcoming or accepting. A participant expressed


“community has no respect for people withdisabilities”. Families expressed anxiety abouttheir sons and daughters with an intellectualdisabilities living in community and concernsabout safety and protection. Living in thecommunity can be difficult and isolating ifthere aren’t supports in place and if strategiesto meaningfully include people are notadopted. Many countries provide no supportto help people live apart from their families andthey have to rely on their families for lifelongsupport. This also means that parents are neverdone parenting, even as they themselvesbecome elderly.

Inclusion Is Possible

While the vision and goal of full inclusion in thecommunity has yet to be fully realized in anycountry, we heard about good examples fromaround the world of people with intellectualdisabilities living, working and participating intheir communities. So, we know it is possible.We heard about people being given theopportunity to decide where they wanted tolive, having control over their day to day lives,being given support for the things they neededhelp with and being accepted by people intheir communities – or on a journey wheremore and more of these things are graduallybeing accomplished through personal effort,increasing opportunities and support from acircle of friends. These success stories are aboutpeople with different kinds of needs and theyare from very different economic, social andpolitical contexts showing that inclusion is notjust possible for those most able who live inwealthier parts of the world but rather it ispossible regardless of the level of disability andit is not only about services.


In Ghana they said ... “It takes the whole community to make Article 19happen.”

BOLIVIA, COCHABAMBAWe need “To learn to respect the rights of our childrenand acknowledge that they are actually self-advocatesand trust them”“We don’t want our son/daughter at home, dependingon us for life” “Sometimes is easier to do things for them, than toteach them.” “…never is too late to promote theindependence of our children, teaching them, trustthem and let them lead a life in the community freely.”“We are struggling with faith and hope for our childrenwith disabilities so they have more opportunities in oursociety”

BENIN, AFRICAThat it is quasi impossible to dream that children withintellectual disable can be independent fully because oftheir small IQ. He wanted to understand the meaningof article 19 in this case. He said after the focus group“Maybe the key to make them independent is toinclude them to all work and activities as possible.”

JAPANSeven years ago many of the residents ofHyakuninchou-3-choume opposed having a livingaccommodation for people with intellectual disabilitiesin their neighbourhood. It was because the residentswere uninformed and biased about intellectualdisabilities. Also, some had a strong feeling that suchan accommodation would devalue their real statevalue. Big signboards opposing the group home wereput up in the neighborhood. But today the residents ofGroup Home Pocket are very much included in thecommunity and living an independent life with thesupport they need.


SPAIN Montse tells us “I would like to marry and have my ownapartment” I would like to marry my boyfriend and have my ownapartment. In this moment I participate in a project of the Foundation toshare an apartment with some mates. I use my mobile as an alarmclock, I get dressed and have breakfast while watching the news, and at8.20 I take a train to Plaza Catalunya and then the tube to Muntaner.From the tube station I walk to the chemist’s. I work in the store, labelling products, placing orders or attending thehome delivery service. I work four hours a day from 9.15 to 13.15. On Mondays, Wednesdays and Fridays I go to the Down SyndromeFoundation in Conte Borrell Street. There we attend workshops oncomputing, oral expression and ballroom dancing, we write a magazineand we chat about our worries. I’ve been going out with my boyfriend for one year and a half. His nameis Carles and he’s 26. He works in a supermarket. I go to the disco, to the cinema, to have lunch or dinner with friends andsome instructors that come with us… Weekly, in the meetings of thefoundation, we decide where to go at the weekend and how much wewill spend.

NEW ZEALAND Matthew David Corner I live in Wellington NewZealand in a three bedroom home with my flat mate who owns thehouse, my neighborhood is friendly and it is easy to find my way aroundit. I have a village within walking distance, I go to holidays togetherwith my family and have a good time, we live in different cities. I have avolunteer buddy that I chat with and have coffee with.I work 4 days a week and I am employed by the IIHC to support andencourage other people to learn about self advocacy I have been doing itfor over 15years.I am involved with different organisations and am on different boardsand I am a member of People first. I have never lived in an institutionand have always lived with my family while I was growing up becauseof my back ground and education in special classes I have a livedexperience of disability and have wanted to be treated the same as otherpeople regardless of my disability. I have visible and invisible supportsfrom people using different communication tools for example face bookSkype emailIf it wasn’t for the support and guidance and people believing in me Iwouldn’t and couldn’t achieve what have in life so far.


In Romania, we heard from three young self-advocateswho successfully moved from an institutional environmentto small apartments in Timisoara. In the institution theylived in a large group, had little to do and, experiencedpunishment. The three women now have paidemployment, get support from NGO Pentru Voi, and areliving in their community. One of the women realized herdream of owning a dog.

A young man in Japan told us the following:

“I live by myself. I decided live by myself after I consultedwith my mother, sister, brother and the staff of myinstitution. I like where I live. In my free time, I enjoywatching baseball games and my favorite girl announcersand AKB48 (J-pop girls group) on TV. I also go shoppingand read some books. To live by myself, some neighborshelp me. And sometimes I talk to them. I use home careworkers to live in the community independently. Alsoneighbors help me when I am in trouble.”

ISRAEL Gili achieved targets whichonly few people reach. He lives a fulland fulfilling life: for the last 20 yearshe performs in the AKIM "othertheater", performing throughoutIsrael. He is the proud winner of goldand silver medals at the "SpecialsOlympics International" and nationalgames in aquatic sports – swimming.In 1994 he parachuted – tandemstyle. Gili is often invited to speak before aforum of people –describing his lifeand the meaning of down syndromerecently, He was part of a smallcommittee that examined themodification of the term "mentalretardation". The committee consistedof the director of the ministry ofwelfare, the legal advisor of theministry, two representatives of theministry and representatives of AKIMIsrael. Gili expressed the commonfeeling of dissatisfaction from theterm and the conclusion of thecommittee was to officially changethe term to "intellectual disabilities". Gili has been employed for the last13 years at the Cellcomtelecommunications company – andperforms a regular job wellappreciated.


JAPAN Moe UchIyama lives with herfamily, she is an artist, she works,enjoys swimming and horses, she turn20 majority age in Japan and she saysI hope to create many good art worksbecause people around me are happywhen they see my work.I am helping my mother in cooking,cleaning, and laundry. I like cooking.My work includes key chains, postcards. They are sold at shops. When Iam ready, I hope I can live in a grouphousing scheme under instructor'ssupervision like other member of theStudioNow, I am happy working in the Studioand living at home. I worry about mygrandparents because they becomeweak and old. But I can help them.Now I am an adult, I should be kind toall people.Last month, when I celebrated Coming-of- Age, I wore formal KIMONO. All myfamily, my neighbors, and friendsjoined to celebrate. I was very happy.

COLOMBIA Juana is 32 years old, lives in Bogotá Colombia with herfamily.She works as an ambassador for Special Olympics, volunteers in BestBuddies and works one day a week as an assistant teacher in an NGOthat works with children with Down Syndrome, serving as a role modeland as an inspiration to new families.She plays the flute and is taking English lessons. She swims withSpecial Olympics so trains twice a week with the city league and withthe swimming team on her club.She goes out with Kristian her boyfriend for the last 7 years, enjoysbeen a connector for friends and others that have an intellectualdisabilities. She perceives herself as a leader.She likes watching funny videos and comedy, playing Nintendo, WII andWIIIFIT plus, watch videos on YouTube, connect with friends by email,skype and facebook.Her brothers and sisters are able to move around the city as they wishand she is not, she thinks that the fears of people around her aboutwhat can happen to her is an obstacle for her independence.She feels people see her and think she is not able. That hurts; they donot let me tell them what I think.She would like to become a preschool teacher, be a leader with herfriends, travel by herself without having to be recommended andcontinue to be a volunteer.Live with my parents them in their world and myself in mine. I want tomake decisions, be more independent in my outings with my friends andmove around the city alone.I would like to go out with my boyfriend anyday we want, she says.


PART III:Where Are We on theRoad to Inclusion?

IT IS NOT A COINCIDENCE that the description by familiesand people with intellectual disabilities that we heard inChapter 4 of what it means to be included in thecommunity is reflected in Article 19 of the Convention onthe Rights of Persons with Disabilities. Article 19, as withthe CRPD as a whole, was structured to represent theunderstanding of people with intellectual disabilities andtheir families, not only of the right to live and be included


Chapter 5:Article 19 of the Convention on the Rights ofPeople with Disability: Choice, Support, Inclusion

in the community but also the elements of what isnecessary to achieve inclusion. We learned from familiesand persons with intellectual disabilities that physicalpresence in the community is necessary, but not asufficient condition for being included.

Article 19 provides a framework for thinking about thenecessary elements for achieving full inclusion. In additionto the main commitment that, “States Parties to the presentConvention recognize the equal right of all persons withdisabilities to live in the community, with choices equal toothers, and shall take effective and appropriate measures tofacilitate full enjoyment by persons with disabilities of thisright and their full inclusion and participation in thecommunity…”, the article specifically identifies three inter-related measures to achieve this right: Choice, support andinclusion.

19 (a) clearly requires that people have choice in wherethey live and with whom. “Persons with disabilities havethe opportunity to choose their place of residence andwhere and with whom they live on an equal basis withothers and are not obliged to live in a particular livingarrangement;”

19 (b) refers to the kinds of supports including servicesthat a person may require to live and be included in thecommunity, “Persons with disabilities have access to a rangeof in-home, residential and other community supportservices, including personal assistance necessary to supportliving and inclusion in the community, and to preventisolation or segregation from the community;”

19 (c) describes the need for inclusion in community,“Community services and facilities for the general populationare available on an equal basis to persons with disabilitiesand are responsive to their needs.”

In listening to the key messages from families and self-advocates about their vision of inclusion as well as the


realities which they currently face in achieving the right tobe included in the community, it is evident that the threeelements of choice, support and inclusion each impact theother. The messages delivered by self-advocates andfamilies about the right to live and be included in thecommunity fall into these three categories.

Figure 1: Schematic view of Article 19


ARGENTINA Juan Cobeñas – I havesome disabilities that can besummarized as multiple disabilities.When I was a kid, they considered Iwas uneducable. They excluded mefrom special school because I did notspeak, I did not make understandablegestures, or used my hands, andneither did I look well. They left me outof any kind of social participation. The outcome of being left out of schoolwhen you should have to be startingyour school life is that you remainisolated. The excluded person suffersfrom a cultural handicap, thereforebecoming different from the rest. Thatwas how I felt, although I could not putit in words at that time, when I foundmyself in a group of “normal” babies ina nursery school, the only place thatwould accept me, at eight years old.

Choice

19 (a) “Persons with disabilities have theopportunity to choose their place of residenceand where and with whom they live on an equalbasis with others and are not obliged to live in aparticular living arrangement;”

The first section of Article 19 about choice has twoimportant aspects; the right to exercise one’s choice on anequal basis with others and having the same optionsavailable to chose from as others in the community.Through our consultations and surveys we heard that forthe vast majority of people with intellectual disabilities thedecision about where and with whom they live is made byfamily members, guardians or service providers. Peoplewith intellectual disabilities are limited in the optionsavailable to them because communities continue to createalternative and segregated residential options which aredifferent from those available to others in the community.

The Right to Make Decisions

From focus group discussions, surveys and stories from self-advocates, we heard about how people’s rights to makedecisions for themselves are restricted. People withintellectual disabilities are consistently denied the right toexpress their preferences, to make decisions and to havetheir voices heard. Formally, through guardianship orders,or informally through an accepted practice that a thirdparty makes all the decisions for a person with anintellectual disabilities, people with intellectual disabilitiesare not having their voices heard. As a result they are nothaving a say in the big decisions (e.g. where to live, whothey want to live with) or the day-to-day decisions (e.g.when to eat, when to go out, what to do when they go out)that impact their life. For self-advocates in all regions of theworld, a key issue in achieving the right to live and beincluded in the community was having control in their lives.


ZANZIBAR I get financial support frommy family and whenever I am going out,I am asked to return home early. If Idon’t listen, I get beaten up so I rectifymyself. I like to have more freedom,work and a wife. I would also like to trainto be a doctor. I would also like to travelto other areas, such as the rural areasand attend all sports functions.¨

In the UK, a self-advocate talked about what she liked bestabout living in the community: “I get to live my life the way Iwant to, make my own choices, have dinner when I want tohave dinner, go out and come in whenever I want! I love it!”

Having the right to make decisions in our lives isfundamental to our right to live and be included in thecommunity. Some people may make these decisionswithout any formal support. Some may need support tounderstand what their choices are and what the outcomesof their decisions will be. Others may need support toarticulate their decisions and to make their voicesunderstood by others. Regardless of the supports requiredfor someone to make decisions in their lives, it is still up tothem to decide.


NEW ZEALAND My name is Moana Parker and I am nearly 50 years old. I live Wellington, New Zealand. I am Maori and myancestors come from the Wanganui area. When we were all small we were split up by the social workers and went to live withdifferent people. I went to stay with my Aunty and Uncle but my brothers and sister went to live in foster homes with people theydid not know. When I was 10 I went to live at a place called Salisbury Home for Girls- It was in the South Island a long way frommy family. All the girls at Salisbury needed to live there because they could not live with their own families. I lived there for 6 years. I hated the food at Salisbury because it was different from what I was used to. I had to stay at the tablefor hours until someone said I could leave the table. I slept in a big room with about thirty other girls. We went to school there tooand I liked doing my maths- that was my favourite thing. We were not allowed to go home in the holidays. Some of the staff werenot good to us and they smacked us with a ruler and that hurt. They used to tell us off. If we didn’t do what they said they wouldsometimes lock us up in a “jail”. It was horrible the girls did not like it. I was really happy to leave Salisbury when I was 16 yearsold. But I didn’t know where to go or have anyone to pick me up at the airport. A Maori Police lady came and got me and took meto my aunty and uncle’s place. She told me not to put my feet up on the car seat.After a while I went to live in an IHC home near them in Gloucester St. Then I moved to Miramar. I have lived in fifty differentplaces in a lot of different ways. I have flatted with one other person and lived in a house with four others and in the last 10 yearsI have lived with a family who I board with. I like living with a family especially when we laugh and have fun. I don’t like living onmy own. When I was 19 I started working at IHC. I answered the phones, did the mail, filing and all sorts of jobs. I worked at IHCfor 22 years. I left that job two years ago because I wanted a change. I have not been able to find a job since then even thoughsomeone was meant to be helping me to do that.

The right to make decisions (Article12 of the CRPD) isintertwined with the right to live in the community (Article19 of the CRPD) and these two rights must be readtogether. Article 12 of the CRPD secures that all peoplewith disabilities have the full and equal right to makedecisions in their lives. It further recognizes that usingsupport to make those decisions does not diminish theindividual’s right to make their own decisions.


CRPD Article 12Equal recognition before the law

1. States Parties reaffirm that persons with disabilities have the right to recognitioneverywhere as persons before the law.

2. States Parties shall recognize that persons with disabilities enjoy legal capacity on anequal basis with others in all aspects of life.

3. States Parties shall take appropriate measures to provide access by persons withdisabilities to the support they may require in exercising their legal capacity.

4. States Parties shall ensure that all measures that relate to the exercise of legal capacityprovide for appropriate and effective safeguards to prevent abuse in accordance withinternational human rights law. Such safeguards shall ensure that measures relating tothe exercise of legal capacity respect the rights, will and preferences of the person, arefree of conflict of interest and undue influence, are proportional and tailored to theperson’s circumstances, apply for the shortest time possible and are subject to regularreview by a competent, independent and impartial authority or judicial body. Thesafeguards shall be proportional to the degree to which such measures affect theperson’s rights and interests.

5. Subject to the provisions of this article, States Parties shall take all appropriate andeffective measures to ensure the equal right of persons with disabilities to own orinherit property, to control their own financial affairs and to have equal access to bankloans, mortgages and other forms of financial credit, and shall ensure that personswith disabilities are not arbitrarily deprived of their property.

Key Issues in Decision Making:

‰ Formal Guardianship and Substitute DecisionMaking

While guardianship and substitute decision makingwere not the principle subject of our consultationwith members, our research showed thatguardianship and other forms of substitute decision-making deny people with intellectual disabilities avoice and control in their own lives. It is clear that thislack of control has resulted in people with intellectualdisabilities not being able to choose where and withwhom they live. We heard that it is often families orthird parties that make this decision. As a result,people with intellectual disabilities are beinginstitutionalized against their will and living in placesnot of their choosing. Law reform is needed but lawreform alone cannot achieve the level of changerequired. Investments in families is needed tosupport them to understand the rights of their childwith an intellectual disabilities and how to empowerthat child as s/he grows and develops, to make theirown decisions. Investments are needed incommunity supports and systems that recognize andenable supported decision making.

‰ Culture of Substitute Decision Making

Even where formal guardianship does not exist weheard that in practice families and communities oftendo not even consult the person when makingdecisions for them. Throughout our lives ourexperience with and ability to make decisions growsand develops. Certain cultures recognize decision-making in terms of individual autonomy, while othersemphasize group and mutual responsibilities. Toooften people with intellectual disabilities arepresumed by others to not able to make their owndecisions. A participant in one of the focus groups inAfrica told us: “Starting from the home, intellectually


disabled children are not benefiting. People have notaccepted the idea that these people can be educatedand that they can live independent life.”

Ensuring that people with intellectual disabilities havethe right to make their own decisions requireschanging the practices that deny people withintellectual disabilities a voice in their daily lives. It’sabout transforming communities and societalrelationships so that people with intellectualdisabilities have their decisions heard and respectedby others. It’s about building the capacity ofcommunities to understand how supports can beprovided so that all persons with disabilities,regardless of perceived level of support need, are ableto make their own decisions.

‰ Lack of Models and Infrastructure for SupportedDecision Making

In some of the focus group discussions it becameclear that while families understood that their familymember could and should be enabled to expressthemselves and make decisions in their lives, they(the families) lacked the tools and support from thecommunity to put supported decision making intoplace.

From the focus group facilitator in Kenya we heard,“The parents were concerned about how the self-advocates would care for themselves and avoidharassment from the community.” One parentcommented: “Their ideas are good but there is no waythey can achieve them.” Youthful vision and ambitionremains a distant dream to many and sometimes failsto be endorsed by parents worn down by communitydisapproval, negative attitudes and a lack ofopportunities and resources. The stories andexperiences of families and people with intellectualdisabilities demonstrate that this has a lot to do witha lack of understanding about supported decision-


making and the lack of legal mechanisms toenable supported decision-making. Thehistory of families making these decisions isan uneasy one. We know the vast majority offamilies are driven by love and their desire to“protect” their sons and daughters. Yet,under the name of protection, individuals arebeing denied their rights. Families are oftenled to believe that “protection” is bestsecured through substitute decision-makingarrangements. In many countries there islittle experience or understanding thatpeople with intellectual disabilities can maketheir own decisions. Particularly, for peoplewith significant challenges in communicatingin traditionally understood ways, it is difficultfor others to see how a person can maketheir own decisions. As we witness the rise inself-advocacy movements around the worldwe are seeing people with intellectualdisabilities challenge stereotypes andtraditional assumptions. They are pushingfor change and leading the way forward.They are challenging “protectionism” and tellus they want to make mistakes and learnfrom them like people without disabilities.They are demonstrating that with supportthey can make their own decisions.

Despite the fact that Article 12 obligesgovernments to develop supported decisionmaking models, formal recognition ofsupported decision making exists in only avery few countries and is not always wellunderstood by families, professionals orcommunities. Supported decision-making isan approach to decision making that can beused when an individual needs help to makedecisions in their lives. Supported decisionmaking recognizes that everyone makes


The Swensons’ storyCharlie Swenson does not communicate in traditionalways and has significant support needs. His familyand support team, based on their deep knowledge ofwho he is, what he likes and does not like, worktogether to articulate Charlie’s decisions. His mother,Sue knows the dangers of guardianship—of havingone voice speak for Charlie—and believes in theneed for a collective approach to ensure thatalthough Charlie doesn’t communicate his decisionsthe way others do, his decisions are still his. Thiswas evident in the way the Charlie’s family andsupport team helped him find his own place in thecommunity. Charlie informed the family he was ready to moveout on his own. Charlie, who uses a wheelchair tomove around, had taken to wheeling himself to thefront door and knocking on the back of it. Peoplewho do not know Charlie might not have understoodwhat he was communicating—or that he wascommunicating at all. But the Swenson’s knew, andso began a long journey to find appropriate housingin the community for Charlie. A possible roommatewas quickly found. On paper it was a great match.The families knew each other, shared similar valuesand a commitment to inclusion, the young adultsknew each other and got along well. But there was ahitch. Charlie liked Opera and he liked it loud. Hispotential housemate didn’t and preferred a quietliving environment. Under guardianship, or if lesscare and consideration was given to Charlie’s will, itwould have been easy to have the two becomehousemates. However, through supported decision-making and a dedicated family, the Swenson’s knewthis would not be the decision Charlie would makefor himself. So they went on a new search until theyfinally found a house that Charlie can call home.

decisions with the help of the people who they areclosest to and who they trust, like family, friends andcolleagues. For people who require support to makedecisions, supported-decision making is a processthat grows and changes as the person does.

Supported decision-making can take many formsand encompasses a range of supports. It couldinclude minimum levels of support such asassistance in understanding a decision. This couldrequire the provision of plain language and/orsupport to understand a decision or more intensivelevels of support like a support circle or network thatarticulates an individual’s decision throughknowledge about the individual’s will orpreference. Even for those who canarticulate with words their vision forliving and being included in thecommunity or other decisions intraditional ways, the right to support indecision making is critical to inclusion.Supported decision-making is a way forensuring that all people – regardless ofhow others perceive their capacity tomake decisions – are able to havecontrol in their own life.

‰ Denial of the Right to Enter into Contracts

Not only do people with intellectual disabilities needto be able to decide where and with whom they live,living in the community requires being able to entercontracts. We heard from families and self-advocatesabout people being denied the right to enter rentalagreements, utilities contracts, employmentcontracts, marriage, etc. whether because of aguardianship order or because of the perception bythird parties of their “incapacity”. Third partiesincluding medical professionals, service providers,financial institutions, lawyers, etc, who have liability


concerns about consent and informed decisionmaking can refuse to provide treatment or service tothe individual. With no decision-making alternative,families are required to seek guardianship to securetreatment and/or services.

Where and With Whom

Around the world, people with intellectual disabilities havebeen clear that they want to live and be included in theircommunity in the same ways people without disabilitiesare. We know that the vast majority of adults withintellectual disabilities live at home with their families andreceive little or no support from governments. Residentialinstitutions continue to exist in a number of countries andsegregated settings which are highly regulated by serviceproviders and separate different living arrangementscontinue to be developed and presented as “communityliving” options in many countries. We heard from self-advocates and families about some of the reasons why theresidential options have been limited, segregated andisolating.

Key Issues About Having Options for Whereand With Whom We Live

‰ Families are the Only Source of Support

For the majority of people who have an intellectualdisabilities the only support which they receive intheir day to day lives is from their families. This meansliving at home with their families is the only placethey can get the support that they need. Manygovernments, even those that have ratified the CRPD,have failed to provide individualized flexible supportsand services (these supports and services are furtherdiscussed in the next section of this chapter).


‰ State Sponsored Residential Options areSegregated and “Institutional”

When families break down or are unable to care for aperson with an intellectual disabilities, statesponsored supports and services are tied toresidential facilities that are institutional in structure,and segregated or isolating in the way they aredelivered. Where people with intellectual disabilitiesare admitted to institutions our members report thatusually there is not even a process for consulting theperson. The breakdown of families is often the resultof the failure of governments and communities toadequately support families and individuals to thepoint of crisis. A mother in Canada expressed herfrustration with the lack of supports provided toenable families to allow their sons and daughters withintellectual disabilities to grow-up at home, “Facedwith inadequate services and supports, parents areessentially being told that unless we can find a way todo it all ourselves, our choices are to turn our kidsover to the Children’s Aid or to the criminal justicesystem. Really? Is that the best we can do?”

‰ Daily Living Supports Attached to Real Estate

Where some efforts have been made to developsupports and services which are physically in thecommunity, many continue to be separate andisolating either because services are attached tospecific homes, apartments or facilities or becauseinstead of allowing people to use the housing optionswhich are available to others in the community,governments and community agencies continue tocreate separate “disability-specific” options specificallyfor people with disabilities. In the Netherlands, theeligibility criteria for support needs were identified asa significant barrier to access residential options.Under the General Act on Extraordinary HealthcareCosts, “one group is not entitled for residential careand receives support based on individual needs. Onegroup is considered to be in high need for support


KENYA “I am not worried because Iknow her cousin will treat her welland knows how to communicate withDamaris. She is still nearby and wetalk on the phone every day so Iwould know if anything was wrong.As well as learning hairdressing at hercousin’s home salon Damaris ishelping to take care of the twochildren and learning about family lifeand looking after a home Ndumberi inKiambu county.”“Not everyone accepts people withdisabilities in the communities wherewe live. Some people who do notknow people with intellectualdisabilities treat them as dirty peopleand not all teachers accept them inclassrooms. We want our children tobe included in the community.”In addition many of the female self-advocates commented that they worryabout cases of rape and are scared togo out. They also reported beingpressured into sexual activity by theirpeers. Such sexual violence andexploitation is indicative of a lack ofrespect within the community.

and is then eligible for residential care. People withdisabilities cannot choose themselves to belong toeither of these groups. The choice is up to theindependent Agency CIZ who decides on careeligibility in all cases.” 1

‰ Limited Vision of Options

Too often people’s vision and choices become limitedby what is available and by attitudes and beliefs. Anumber of the stories we received from self-advocatestalked about wanting to live in group homes because

this was the only option that was offered tothem in the community. In focus groups andmore in-depth discussions, more often thannot, it was revealed that group homes werethe only option other than the family home.In Jordan and Nepal discussion participantswere seeking group homes as it was the onlymodel for supporting people to live in thecommunity that they had ever heard about.In Mauritius we heard families and self-advocates say that living at home was theironly option. They told us they have “no realchoice and nothing else is available.”

‰ Safety and Violence

Sometimes our vision is limited by our fears andconcerns about safety and life in the community. Weheard from families and self-advocates that“community has no respect for people withdisabilities” and that life in the community can bedifficult and isolating without support. Familiesexpressed concerns about safety and protection fortheir sons and daughters with intellectual disabilities.Some self-advocates expressed frustration that theirparents won’t allow them to live apart from theirfamilies in the community while others expressed fearthat if something happened to them they would haveno one to help them.


Photo: Ulrich Eigner

Supports

19(b) “Persons with disabilities have access to arange of in-home, residential and othercommunity support services, including personalassistance necessary to support living andinclusion in the community, and to preventisolation or segregation from the community;”

The vast majority of people with intellectual disabilitiesaround the world live at home with their families and thevast majority of those people who live at home do notreceive the supports they need to live “independently” inthe community, nor do their families receive the supportthey need to enable their family member to be included.While there is little reliable national census data to show

67

Figure 2: Where do people with intellectual disabilities live. Country profiles survey.


where people with intellectual disabilities live, onehundred percent of our members who responded to thecountry survey indicated that the vast majority of peoplewith intellectual disabilities in their countries live at homewith their families.

While access to formal services for people with intellectualdisabilities vary across regions and countries, the primarysource of support that people with intellectual disabilitiesreceive wherever they live in the world is from theirfamilies. Yet families consistently reported that they receivelittle or no assistance (financial support, services,information or planning support). This means we need tounderstand both the individual’s need for services andsupports at home in the community but also we need tounderstand the needs of the family in fulfilling their role ascaregivers, advocates and as the economic and social linkto the community.

Supports to the Individual

For people with intellectual disabilities the kinds ofsupports and services which they need to function andparticipate in their communities vary greatly acrosscultures and regions and by the nature of support theindividual wants and needs. For our purposes we refer todisability related services, financial assistance, informationand planning provided or funded by governments asformal supports and unpaid assistance provided byfamilies, neighbors, friends and others in the communityas informal supports.

Supports may be focused on the person with anintellectual disabilities, or on the family or both. They caninclude assistive devices and physical aids but more oftenthey are assistance with personal care, support ineducation or employment, support in decision making orsupport in housekeeping, preparing meals or managingfinances. The type and availability of services and supports


for people with intellectual disabilities and their familiesvary greatly around the world and are largely dependentupon location. The services and supports that are readilyavailable in urban areas are vastly different than those inrural areas, if they are available at all. In some countriesservices and supports are available for some or mostpeople, though rarely did we hear families and self-advocates speak in glowing terms about the formalservices and supports that are available to them. In Israel,a father of two sons with intellectual disabilities said “Wefight for inclusion for our sons. Why should it be so hard?Why is the burden always on the parents?” This was acommon theme in high income countries. In low incomecountries the population at large receives only limitedaccess to school (for families who can pay forfees and uniforms) and some public healthservices. In these countries access todisability related supports and services isalmost nonexistant. In large parts of theworld specialized services (when they exist) –those tailored to the needs of people withintellectual disabilities and their families –have primarily been created through thehard work of families of people with anintellectual disabilities, sometimes withfinancial support from government butoftentimes with no such support at all.

We found no comprehensive and reliable source for dataon what services and supports are available in eachcountry, though there is one invaluable resource available.In 2007 the World Health Organization Published and Atlason intellectual disabilities the introduction states,

“At present, information on resources and services forpersons with intellectual disabilities is scarce, fragmented,and relates mainly to high-income countries. To find dataabout availability of services, their nature, and access tothem for a given country is hard, and such data does notexist at a global level. Large differences are seen betweenhigh-income countries and countries with low or middle


incomes with regard to the availability and the type ofinformation about national services and resources.Considerable information exists for some high-incomecountries; detailed reports have been published, based onextensive information systems. By contrast,documentation is much more scarce and inaccurate incountries of low or middle income. Most of the time, suchdocumentation is based on specific experiences of a givengroup of individuals, a type of diagnosis, or a territory.However, at all income levels, to find an overall figure thatwill describe the situation at the national level is difficult.”2

The World Report on Disability published in 2011 by theWorld Health Organization and the World Bank describesbarriers to assistance and support for the population ofpeople with disabilities and highlights some particularissues for people with intellectual disabilities.

“Most assistance and support comes from family membersor social networks. State supply of formal services isgenerally underdeveloped, not-for-profit organizationshave limited coverage, and private markets rarely offerenough affordable support to meet the needs of peoplewith disabilities.”3

While these resources present policy and legislative levelinformation, there is little information about services andsupports for people with intellectual disabilities andfamilies. The information that is available speaks to what is“on the books”, not the availability, quality orappropriateness of services and supports. The stories andexperience of parents and people with intellectualdisabilities which are presented here are an important andpowerful source of knowledge and so crucial to improvingtheir lives in the years to come.

Our survey respondents were clear that the services andsupports that are available are segregated and institutionalin nature:


Supporting People in High Income Countries

In countries where government and community resourcesare being spent to support people who have an intellectualdisabilities and their families we heard consistently aboutwaiting lists for services, a continued emphasis onsegregated programmes like group homes, shelteredworkshops and isolation in the community. While manycountries have moved away from former institutionalsettings, we heard from self-advocates and families thatisolation and exclusion continue to be the norm. Theservices and supports that were set up in the community tomove people out of institutions or to keep people fromentering institutions, while they have improved people’slives, have often failed to achieve real inclusion.


Figure 3: Community based programmes and services for peoplewith intellectual disabilities. Country profiles survey

Some of the policy issues that we heard about included:

‰Waiting lists

A consistent issue reported by our memberorganizations was waiting lists for home care, foremployment supports, respite and residentialservices. In the USA our member organization The Arcof the United States reported that, “One-third (32%) ofparents/caregivers report that they are on waitinglists for government funded services, with an averagewait of more than five years. They are waiting forpersonal assistance, respite, housing, therapy,employment supports, transportation and more. Aconservative estimate is that there are more than1 million people with people with intellectualdisabilities waiting for services that may never come.”(Finds, 2010)

‰ Eligibility for disability supports tied to income

Many jurisdictions access to disability related servicesdepends on whether a person falls below the povertyline or is eligible for financial assistance fromgovernment. This results in several problems forpeople with intellectual disabilities: Firstly, unless thefamily has low income the family member is noteligible to receive supports which they need (rentsubsidies, disability allowance, medical coverage); ifthey leave the family home, the disability and incomesupports provided are not sufficient to cover theirneeds. Secondly, if a person with an intellectualdisabilities gets a job and begins to move towardsindependence in the community, their income willoften render them ineligible for assistance making itimpossible for them to stay in the workforce. Policiesthat link eligibilty for disability supports to incomeneeds effectively trap people and prevent them fromparticipating in the community and the labourmarket.


In Israel ...• The government encourages living

independently in the community.Community living in Israel meansapartments and hostels and 30% ofpeople with intellectual disabilitieslive in out-of-home facilities.

• In Israel there are about 34,500persons with intellectual disabilities,24,000 out of which live with theirfamilies. Out of the 10,000 living inresidential facilities, 7,500 live ininstitutions (over 60 persons perinstitution), 1,500 live in hostels (upto 24 persons per hostel) and 1,000in apartments (up to 6 persons perapartment). Very few live on theirown in a home with 1 or 2 others oftheir own choosing and very fewcouples live together in group homesor institutions.

• There are 9 government institutions.All the other residential facilities areoperated either by NGOs or privatecompanies and all are financed bythe government

PORTUGAL Portugal considered“Group Homes” as community livingsince the homes are located insidecommon neighborhoods. However theydescribed the group homes “more likeinstitutions”.

‰ Disability supports and services tied to housing

When a person with an intellectual disabilities decidesthat he/she would like to move out of their familyhome or when their family is no longer thereto care for them, the residential optionsavailable to them are significantly limited bythe fact that the supports and services whichthey need are only available in certain settingssuch as care homes (group homes, seniorshomes etc.). Having access to services andsupports which could be used in theresidential setting of their choice wouldsignificantly change the way in which peopleare included in the community.

‰ Access to inclusive services

Families reported that even when they have thefinacial resources (personal or funded bygovernment) to purchase services, the range ofappropriate and reliable services available isextremely limited. From a public policy perspectivethis may be a result of the fact that governmentfunding is heavily weighted towards the supply-sideand the service agencies have not been forced to beaccountable to what people with intellectualdisabilities and their families are demanding. Forexample, government funding to shelteredworkshops, group homes and day programmesmeans that people with intellectual disabilities whowould chose to work in the open labour market or tolive on their own or volunteer in the community oftencannot access the supports they require to do so.

We learned that in many cases the lack of access toinclusive services stems from a misunderstanding ofwhat “community based” should mean. Governmentsand those who deliver services believe that thelocation of services in the community in itself meansinclusive services as is the example from a provincialgovernment in Canada;


CANADA “Across the province ofOntario, there are 23,000 people witha developmental disability languishingon waitlists for services – 12,000 ofthose individuals are waiting forresidential supports. 44-year-oldHamilton resident, Akhil Agarwal, is oneof them. His 70-year-old father, NareshAgarwal, is worried that families liketheirs have to go into crisis to get thesupports and services they need.”4

The Developmental Services Act made someattempts to respond to the social model ofdisability. For example, the Act provided for publicfunding of community-based services and supportsfor people with intellectual disabilities. Suchservices include group homes, individual livingarrangements in which people with disabilitiesreceived support services, sheltered workshops,day programmes and life skills trainingprogrammes.5

‰ Government cut backs and austerity measures

In countries impacted by the global financial crisis weheard that government cutbacks are making peoplewith intellectual disabilities more vulnerable, thatservices are being cut and that eligibility for incomesupport is being further restricted. Globally,

governments and service providers areexperiencing significant economic pressure...pressure to do more with less and to reduceoverall expenditures. In such a contextservices and supports to people withintellectual disabilities and families oftenbecome the targets of “cost-saving”measures. We have heard stories fromindividuals and families whose lives havebeen negatively impacted by such measures.We witness countries that choose to invest in“fixing-up” institutions rather than investingin community based supports and a processof deinstitutionalization with a rationale thatsuch will reduce costs. We also heard that

families once again are picking up the additionalresponsibilities when services are not accessible.

“Following cuts to services in England, our nationalmember’s survey reveals that one in four people with anintellectual disabilities now spends less than one houroutside of their home everyday.”

– UK Country profile for the initiative MENCAP’s online survey



‰ Institutions

The continued existance of institutions in highincome countries reflects in part the failure of servicesystems to deliver adequate, flexible and self-directedsupports to people with intellectual disabilities. Weheard from our member organizations in countrieswhere residential institutions continue to exist thatthey continue to consume a disproportionatepercentage of resources while serving a comparitivelysmall percentage of people needing supports. Theycontinue to exist due to pressure from staff,sometimes from families and from local legislatorswho are focused more on jobs than on the best wayto support people with an intellectual disabilities.

Supporting People in Low Income Countries

In low income countries the infrastructure of services forthe general population is limited and the services availableto support people with disabilities and particularly peoplewith intellectual disabilities are almost non-existent.Where disability related services do exist they are oftenprovided by internationally funded NGOs and most oftenthey are focused on services for people with physical andsensory disabilities. They are heavily centered on medicalprogrammes and continue to be based on a medicalmodel of disability.

We heard from national member organizations in LatinAmerica, Africa, MENA, Asia and Eastern Europe about theparticular issues that impact on living and being includedin the community.

Key Issues:

‰ Poverty

One of the key factors which members reported thatprevent people from being included in their


SOUTH AFRICA “We used to haveour children with intellectual disabilitiesin the institutions before – We did notknow what to do with regard to theircare. But we were not happy with thecare at the institutions we thereforetook them out.¨ Some of the parentsof children with disabilities are thinkingof starting a day care centre to keeptheir children busy during the day andteach them different sports includingdancing. But they are challenged bylack of resources and appropriatespace to carry out the activities. Theydo not prefer institution life for theirchildren. They said chances are thatthey could be ill-treated as abuse isrife in the institutions.

communities was poverty. While we heard aboutthe issues of poverty from families and self-advocatesacross all countries, poverty in low-income countrieswas especially definative of the exclusion whichindividuals and families faced in their communities.For families who are poor the added cost of caring fora family member with a disability coupled with theneed for someone (almost always the mother) to stayhome and therefore not work results in extremepoverty.

Additionally, employment options for people withintellectual disabilities continue to be extremelylimited and programmes that provide segregated daycentres and sheltered workshops do not providefinancial compensation. Where there are people withintellectual disabilities working it tends to mirror theactivities of the family (for example cattle, agricultureetc.)

‰ Invisibility

Even in countries which have ratified the CRPD, it isclear from our members surveyed that governmentsand society in general do not include people withdisabilities in their national plans for health,education, transportation or employment. Supportsand services for people with disabilities where theyexist tend to focus on aids and devices for physicaland sensory disabilities. Over and over we heard thateven within the disability movement people withintellectual disabilities were invisible in societalprocesses and in government policy and planning.

In Africa, over 15 million people are believed to haveintellectual disabilities and the majority live in abjectpoverty, neglect and social isolation. Many more arevictims of catastrophic human rights violations. Themost marginalised underclass lives in the remotest,most isolated places in Africa, with hardly any safetynets. They are always at the bottom of the pile, evenwithin the disability movement. The few national


KENYA “The community doesn’t payme any attention. Often when there isa big event like a wedding or funeralmy family is not told about it eventhough we would like to be included. Ithink they don’t like me because I amoften hungry and ask for food.”

SWAZILAND The latest Swazilandcensus of 2007 has statistics of peoplewith all disabilities except that ofpeople with intellectual disabilities. Thedisability grant of E250 (approximatelyUSD 30) that people with disabilitieswho are registered receive every threemonths, is not given to those withintellectual disabilities.

action plans that target people with disabilities donot routinely recognize those with intellectualdisabilities in education, health and povertyreduction.

‰Medical Model of Disability

Many of the services offered for people withintellectual disabilities, where there are services, aremedically oriented and based on the medical modelof disability which focuses on rehabilitation andinterventions focused on fixing or preventingdisability. International development assistance andinvestments through International Non-Governmental Organizations (INGOs) continue to beweighted towards vaccinations and programmes for“training” people with disabilities e.g. The CommunityBased Rehabilitation (CBR) model is implemented anddelivered by professionals and centres aroundadaptations for the individual rather than thecommunity. While the World Health Organization(WHO) is making efforts to adapt the CBR modeltowards a human rights approach, in its currentapplication in communities it fails to address systemicdiscrimination such as the exclusionof children withintellectual disabilities from regular education, oraccess to regular employment at later ages.

‰ Investment in Segregated Programmes

The lack of any kind of service or support to enableparticipation in meaningful activities such aseducation or employment results in efforts toestablish and invest in segregated programmes.Governments, family organizations, disabled peoplesorganizations, INGOs and international developmentassistance programmes continue to invest insegregated and isolating programmes.

In Kenya, family support groups meet to learn abouthow to obtain the benefits government offers and to


COLOMBIA There remains a paradigmabout disability based on a medicalmodel and low value of people withintellectual disabilities in our country.Parents continue to receive supportivecare focused on deficit and weaknessesgenerating attitudes of protection, fearand fear of letting their children attendinclusive settings. The alternative foradult life remains sheltered institutionsor artistic and cultural centres. We hopethat this report will give us ideas onhow to transform existing institutionsthat simply provide care in segregatedplaces so that we can advance newideas of life in the community.

NEPAL “I was advised to take myson to physiotherapist. Regularphysiotherapy was too expensive formy family. So I enrolled in aphysiotherapy course through adistance learning programme. Thisallowed me to tend to my children,while gaining knowledge ofphysiotherapy. My experience, coursework, and compassion for children withDown Syndrome led me to open aclinic in front of a renownedgovernment hospital. The clinicsproximity to the hospital allowed me toconnect with other parents of childrenwith Down Syndrome. In 2005, Iregistered and started Down’sSyndrome Association, Nepal – thefirst and only one of its kind in Nepal.

work on projects to raise money to support theirorganization. With no residential institutions to speakof and with strong family networks, these families allwanted their sons and daughters to have somethingmeaningful to do during the day other than to just beat home. The families that we spoke to could notconceive of adults who are not married living awayfrom their families. This was an entirely foreign conceptfor them. For people with intellectual disabilities andfamilies day supports serve two purposes; providingactivities and socialization for the adult with intellectualdisabilities and giving the family the ability to work andto take care of other people in the household.However, creating day programmes takes the emphasisaway from working and contributing to society throughlabour or through entrepreneurship. As withinstitutions we have learned that day centres andsheltered workshops are best avoided. They mayprovide respite for families but actually interfere withincluding people in their communities. In economieswhere many people cannot find work, extraordinaryefforts are needed to support people with intellectualdisabilities in securing and maintaining productivework. While it is tempting to develop day centres,experience shows that people stay in them for alifetime and they do not lead to inclusion in thecommunity. In fact, quite to the contrary, they areisolating and stigmatizing.

From the MENA region we heard, “Since the politicalproblems started in the region (and this goes back toright after the Second World War), we have witnessedmore and more violations to the human rightsunderstanding. In Palestine for instance, children weredenied education and the only way they could accesseducation was through United Nations Relief andWorks Agency for Palestine Refugees in the Near East(UNRWA). The agency's main focus was not onlyeducation but health and social assistance as well.


NICARAGUA Most sectororganizations work with people withphysical and sensory disability,although there are initiatives fromsmall local organizations that developspecific activities with small groups ofyoung people with intellectualdisabilities. It is noteworthy that theseactions, while remaining positive, havein most cases a special focus, as theybecome special centers only for peoplewith intellectual disabilities that providea free service for a period of 3-5 hours.

BOLIVIA Many parents aredemanding the creation of institutionsfor placing their children with severeintellectual disabilities, because theyhave limited access to rehabilitationservices and information that provideadequate support within the familyand community. Rehabilitationinstitutions are located in intermediatecities, so there is a need to doboarding to children out of town, buttheir capacity was exceeded largelybecause of high demand.

Despite the good intentions of the agency, theirapproach played a major role in excluding childrenfrom regular education, emphasizing that children andyoung adults with disability in general, and intellectualdisabilities particularly, are unable to learn alongsidetheir peers and they needed to be isolated in specialsettings. This was a model that governments in theregion especially those that had UNRWA, working intheir countries due to high number of refugees, such asJordan, Syria, Lebanon and Iraq adapted a charitable,segregated medical model and felt that who is betterto follow but the United Nation and their way ofdealing with persons with disability.”


Figure 4: Forms of support given to families. Country profiles survey

Supports to Families

Our members report that families are the main source ofsupport to people with intellectual disabilities whereverthey live in the world. Families not only provide care, theysupport participation in the community (education,employment, recreation, building relationships andaccessing services). Yet families report that they receivelittle or no support from governments or the communityto fulfill this role.

Our focus groups of self-advocates consistently recognizedthe support provided by parents. A Spanish participantsaid, “I get a lot of support from my family. I know verywell that without their help to pay my rent I never wouldhave been able to leave home for a place of my own.”

Countries such as Japan and China have policies clearlystipulating that the responsibility for persons withintellectual disabilities rests with their families. Othercountries may not have explicit policies, but families feelthat responsibility. In a major survey done by The Arc ofthe United States in 2010 families reported the failure ofcommunities to support them in their role.

“While families continue to be the primary source of supportand care for people with people with intellectual disabilities,the promise of community support to lighten the load is notbeing met. Parents, siblings and family members strugglemightily so that their family member with intellectualdisabilities can continue to live at home, or independently,and have a typical life. The majority of families report thatthey provide personal care – such as bathing, feeding (61%),administer medications (69%), provide direct financialsupport (72%), maintain the home (74%), manage financialaffairs (78%), arrange/monitor outside services (76%), makesocial arrangements (76%), cook, clean and do laundry (80%),provide transportation (84%) and emo¬tional reassurance(86%) and more.


UNITED STATES Shareen is themother of a beautiful son, Stefon,18, who has multiple disabilities,including Angelman syndrome (agenetic deficiency of the 15thchromosome), cerebral palsy, anintellectual disabilities, epilepsy,asthma, language impairment, andneuromuscular scoliosis. Stefon usesassistive devices for ambulation andrequires support 100% of the time. For many years, Shareen was unableto work and unable to afford the typeof services her son required. She andher son lived in distressedneighborhoods in public housing andrelied on food stamps to survive.

• 58% of parents/caregivers report spending more than 40hours per week providing support for their loved oneswith intellectual disabilities, including 40% spendingmore than 80 hours a week.

• Nearly half (46%) of parents/caregivers report that theyhave more caregiving responsibilities than they canhandle.

• The vast majority of caregivers report that they aresuffering from physical fatigue (88%), emotional stress(81%) and emotional upset or guilt (81%) some or mostof the time.

• 1 out of 5 families (20%) report that someone in thefamily had to quit their job to stay home and supportthe needs of their family member” (Finds, 2010)

The commitments to families in the Universal Declarationof Human Rights, the Convention on the Rights of theChild and the CRPD, should help to support people whohave an intellectual disabilities to live and be included inthe community. Unfortunately, our members have told usthat both the State and society fall short in meeting theseobligations. The capacity of families to provide thissupport depends on the way in which communities andgovernments provide assistance to them.

Key Issues For Families:

‰ Need for Short Term Breaks

Families need relief from the sole responsibility fortheir sons and daughters 24 hours a day, 365 days ayear. This is best accomplished by guaranteeing thatchildren with intellectual disabilities have access toearly education and education programmes as well aschild care for non-school hours so parents can work.The inclusive pre-school programmes in Bogota,Colombia provide a good example as does theinclusive education system in New Brunswick,


UNITED STATES Analee lives withher 21-year-old son Nicky, who hasautism, in North Carolina. She quit herjob three years ago to stay home withNicky after he graduated from highschool with no real idea of what wouldcome next. Meanwhile, money is tightand Nicky’s dad has taken work inFlorida to support the family. Theywould like to be together, but afterchecking into the possibility, theyrealize that the situation in Floridawould be even worse that what theyface in rural North Carolina. RecentlyAnalee found a small group homeabout an hour’s drive away that shefeels would be a good place for Nickyto make the transition from hisfamily’s home to living semi-independently as an adult. That wouldalso allow her to go back to work. Shesays, “it felt just right! I just couldn’tbelieve we had lucked out to find sucha right fit for Nicky!” She has notbeen given a place there because ofregulations and policies.

Canada. The United Kingdom has invested heavily inproviding parents with short breaks, which may be tocatch up on sleep, to go out socially or to have shortvacations. Non-government organizations such asBest Buddies and Special Olympics often provide theonly opportunities for people with an intellectualdisabilities to participate in an activity away fromtheir family, which is a break for them and theirfamilies.

‰ Poverty

The high correlation between disability and povertydue to lost income and the cost of disability supportsmeans that many families of persons with intellectualdisabilities find themselves in desperate situationswhere they are grateful for any support that is given.(e.g. Residential institutions that might seem like badoptions to families who have a range of choices mayseem like a salvation for a family that can’t afford tofeed all its children and who sees the institution as atleast providing a roof and three meals a day.) Thesefamilies can’t imagine a better alternative.

While many countries have some sort of cash transferprogramme which provides some relief for the extracosts of having a family member with an intellectualdisabilities, these rarely cover the actual extra costsand families reported that supports have beenreduced due to the current economic situation. SomeWestern research shows that it costs 60% more tosupport a child with intellectual disabilities than atypically developing child.

‰ Social Exclusion and Lack of Natural Supports

Families often also suffer because of the stigma andprejudice against having a family member with adisability. The family member may be kept hidden soas not to jeopardize the marriage possibilities forother siblings. In addition, many of the mothers in


Income benefit programmes“Applying a lens of social and economicinclusion to income security of people withdisabilities means asking some difficultquestions about the purpose and rationaleof an income benefit programme: Is itwelfare? Pension? Disability-relatedsupport? Income security? Replacementof employment income? Compensation forinaccessible labour markets? Under mostbenefit programmes that are currentlyavailable there is little clarity about thesequestions. The underlying rationale of anincome programme affects every aspect ofthe way that it operates- from benefit ratesand eligibility to rules that affect subsidizedhousing, student loans, employmentsupports, assets and even family andrelationships. Policy analysis is needed thatcan assess income benefit programmes interms of whether they enable a povertyexit strategy and access route to social andeconomic inclusion. Research has to takeon some of these difficult questions andapply a lens of social and economicinclusion to income security in hopes offurthering discussion about how we canmore effectively break the link betweenpoverty and disability.” – Canadian Association for CommunityLiving.

the focus groups for this report feltabandoned by the father. A motherfrom Namibia complained that a childwith disability is “always the mother’schild”, not the father’s.

In high income countries the state alsoinvests in the building of organizationsof families of persons with disabilitiesso that they can play the rolerecognized in the CRPD ofcontributing to the full and equalenjoyment of the rights of their family member with adisability. Parent organizations in Africa havereceived such support from Norway, Sweden andFinland in particular.

As the mother of a child with autism, I’ve seen mysocial circle shrink over the last ten years. I’ve fallenout of touch with friends and family while I devote allof my spare time to fighting for the services my sonneeds. It’s no one’s fault, really—it’s just hard to goout for a coffee or invite someone over for dinnerwhen you live with someone with autism, and thatreality takes a slow but steady toll on socialrelationships. I’ve learned to live with it, and manypeople who were a huge part of my life in the pasthave now drifted away.6

One of the implications of the CRPD for persons withan intellectual disabilities is the need to focus notonly on supports and services for the individual whohas a disability but to focus on the family as well. Inmost situations, families are the constant in a person’slife and so the individual who has an intellectualdisabilities may be helped the most when his or herfamily is supported so that they can continue toprovide the love, care and attention that their familymember needs and has a right to receive.


MALAWI The school however, was notso easy. The Principal told me that allSami needs is a kick in the butt andsome good old discipline. I resigned frommy full time job as an early childhoodsupervisor and took a part time job inorder to help the KG teacher with Samiand the other children. I soon realizedthat having an ADHD child in theclassroom is a nightmare to aninexperienced teacher. At night, Iattended Special Needs in EEC classes inorder to learn more on behaviormodification. I would come back andtranslate them to my husband who wasFrench educated.


‰ Access to Information

Families talked about the need for information notonly about disability related information but alsoabout accessing services and supports in thecommunity. They reported that the information theyreceive (often from doctors) was negative andoutdated. In addition to care giving and day to daysupport, families play a critical role in securing accessto education, employment, health care, recreationand community services. Without their efforts mostpeople with intellectual disabilites would have noaccess to disability supports or to the community. Yetfamilies report that they receive no assistance inaccessing information in their communities exceptthrough family based organizations and other familieswho have a member with a disability.

‰ Institutionalization

Institutions remains a powerful and negative force forpeople with intellectual disabilities in both highincome countries where they continue to exist anddraw resources from the provision of services in thecommunity and in low income countries (e.g. EasternEurope) where the centralized state continues toinvest in refurbishing and reinventing institutions.Despite many years of advocacy by self-advocates,families and other human rights activists, institutionscontinue to exist as a significant violation of the CRPDand other human rights conventions. In addition tothe challenges of closing those institutions thatremain there continues to be a real threat that theywill continue to be built in different forms in thefuture. (See Table 3 on Different words forInstitutions).

Despite advances made in our understanding ofintellectual disabilities, successful deinstitutionaliza -tion efforts and our global efforts to ensure the rightto live in communities for all people with intellectual


Table 3: Euphemisms forInstitutions

4 Homes for Special Care

4 Special Care Homes

4 Personal Care Homes

4 Farms/Ranches

4 Gated Community

4 DevelopmentalMaximization Unit

4 Community Living Centres

4 State Schools

4 Neuro-behaviouraltreatment Centres

4 Long Term Care homes

4 Centers of Excellence

4 Cottages

4 Living Centres

disabilities, arguments are still advanced to justifyinstitutionalizing people.

Typically, these arguments include notions thatinstitutions provide better care or ensure betterhealth, that people are happier “with their own kind”,or that people with “severe” disabilities, complexhealth or behavioural issues cannot be supported incommunity. The reality however, is that researchconsistently demonstrates the benefits of communityliving and the harmful effects of institutionalization.Studies conducted over the past 50 years in NorthAmerica, Europe and New Zealand have documentedthe following outcomes for people with disabilities inthe community as compared to institution life:

• Maintained or improved healthand health care

• Increased independence andadaptive skills

• Decreases/elimination ofchallenging behaviour

• Increased family involvement andsupport (families overwhelminglysupport community livingfollowing institution closures,even if they had previouslyopposed it)

• The benefits and improvement in the quality oflife for people leaving institutions continue tooutweigh the costs

• Successful transitions to community byindividuals with the most complex needs(people with severe disability, challengingbehaviour, medical issues, or advanced age)

While we witness Norway, United Kingdom, NewZealand, Sweden, the United States, and Canada who



had previously relied on institutions as a residentialoption, closing or in the process of closinginstitutional facilities, there are other countries thatare in the process of building (new) institutionsand/or refurbishing existing facilities e.g. In Hungary,“Despite having a 30-year strategy to shut institutionsand move people with disabilities into thecommunity, the Hungarian government will buildnew 50-bed institutions – which it euphemisticallycalls “living centres” – instead of integrating and

supporting people into the community.”7Even in those countries that have a history ofsuccessful closures (i.e. Canada, the USA, theUK) we are seeing continued investment ininstitutional models of support.

There are also countries, particularly lowincome countries in Africa, in which thetraditional concept of institutions does notexist. In these countries however, institutionsdo not exist not because other moreappropriate options are provided, but ratherbecause families were (and are still being)left to struggle on their own to raise andsupport their family member with little or no

outside support or assistance. Sometimes familieswho are desperate for any kind of support willsuggest the creation of institutions because theycannot imagine any other options.

In Colombia families face a stark choice. They cangive up custody of their son or daughter and inexchange a bed in a residential institution with threemeals a day and some daytime activities will beprovided. The one residential institution we visited inBogota was stark, with little activity and no realpersonalization or sense of personal space or privacy.Should the family not want the institutional option,there are few services for children and virtually nonefor adults unless the family has the financial resources


to pay privately. The incentives are clearly in thewrong place and as with many places, it is a matter ofdecision making, a clear violation of the intent ofArticle 19, from a country that has ratified theConvention.

In Israel families and people with intellectualdisabilities have an array of choices, running thespectrum from very segregated to inclusive, with (asof 2009) over 7,000 people with all kinds of disabilitiesliving in large residential institutions. Where a personlives is a function of when they started to receiveservices more than a function of their wants andneeds. Inclusion International’s member organizationAKIM, provides a range of places for people to livefrom apartments with six people in regular residentialneighborhoods, to hostels with over twenty residents.Public policy in Israel currently supports six peopleliving together, no fewer, and while many of thepeople become friends, would they have chosen tolive together given the freedom to choose betweenmore meaningful options?

In Central and Eastern Europe including countries ofthe Commonwealth of Independent States (CIS) thereis reliance on large institutions for people withintellectual disabilities. The Deinstitutionalization andCommunity Living – Outcomes and Costs: Report(DECLOC) showed that over one million people withdisabilities live in institutions.8 The actual numbermay be higher because of the local control ofinstitutions in many countries and “under the table”arrangements to admit people. Yet it does not haveto be this way. In Croatia, The Association forPromoting Inclusion, API, is helping people who hadspent their lives in residential institutions move intoregular housing in the community. They are alsohelping other organizations start programmes tosupport people with intellectual disabilities andfamilies in communities throughout the region. Soon,


they will open their first apartment for people withsignificant physical disabilities as well as intellectualdisabilities, demonstrating for their government andfor the region that all people can be included in theircommunities. They even made a movie showing howpeople who had been institutionalized, now living inthe community, could enjoy a full life, includinggetting married!9

In Bahrain a young self-advocate said this in responseto the question, how can life be better for people withintellectual disabilities? “There are some facilities forchildren with special needs and support for them, buteventually children grow up and there is nothing foradults.” This is true in many places. Schooling is acommon frame of reference for all families, andservice for the population at large. There is not aframework for how best to support adults withintellectual disabilities living with their familiesanywhere we surveyed. Person and family centeredplanning and attention to the needs of the entirefamily as well as the family member with intellectualdisabilities must be considered. Not one or the other,but both.

In New Zealand the last of their public institutions,the Kimberley Centre, was closed in 2006. The arrayof services and supports there shows that everyone,regardless of their level and type of disability, can besupported in community environments. Strongadvocacy by families and people with intellectualdisabilities themselves helped create the political willto close the institutions and to create a communitysystem of services and supports. While much hasbeen done, much remains. One father said, “While mydaughter is living in the community, she is not yet afully participating member of her community ... butwe are making progress.”


Inclusion

19.(c) “Community services and facilities for thegeneral population are available on an equal basisto persons with disabilities and are responsive totheir needs.”

The concept that communities should be organized toensure the inclusion of all its citizens is not a new idea, yetit is one that distinguishes the movement of people withintellectual disabilities and their families from otherdisability groups. For many people with physical orsensory disabilities, they may be able toreceive a service or accommodation whichwould enable them to participate fully in theexisting education system, accesstransportation or health care in much the sameway that others in the community do. Forpeople with intellectual disabilities there areno single or simple adaptions which enablethem to participate on an equal basis withothers. In order for real inclusion to be realizedfor people with intellectual disabilities,communities and mainstream systems(political, economic and social) must bedesigned to include all its citizens. While thisparadigm shift is reflected in the CRPD, it is one thatInclusion International adopted in our work years beforethe Convention was negotiated.

The CRPD was crafted to make a paradigm shift in the waypeople think of disability. Part of that shift is therecognition that persons with disabilities are activemembers of society with something to contribute. Inorder for people who have a disability to participate andbe included in society, several articles of the CRPD addressparticipation and inclusion specifically:

• General principles (article 3)

• Right to education (article 24)



• Right to work and employment (article 27)

• Right to take part in the conduct of public affairs(article 29)

• Right to take part in cultural life (article 30)

• Right to live in the community (article 19)

• Right to habilitation and rehabilitation (article 26).

The general principle of non-discrimination in the CRPDincludes both direct and indirect discrimination and

requires that there be reasonableaccommodation made for persons withdisabilities; that is that there is “necessary andappropriate modification and adjustments notimposing a disproportionate or undue burdenwhere needed in a particular case to ensure topersons with disabilities the enjoyment orexercise on an equal basis with others of allhuman rights and fundamental freedoms”. Thismeans that in order to ensure the fullparticipation and inclusion of persons withdisabilities to live in the community on anequal basis with others, people withintellectual disabilities may require somespecific supports or reasonable

accommodation, but it also means that in order to ensurethere is not direct or indirect discrimination systems mustchange.

We asked our members whether people with intellectualdisabilities were able to access mainstream services andparticipate in community and citizenship related activities.While the results were uneven, the majority reported thatpeople with intellectual disabilities continued to be deniedmeaningful education and employment opportunities.They fared somewhat better in accessing health serviceswhere they exist but overall they reported a continuedfailure of communities to build inclusive systems.


Figure 5: Employment for adults with disability. CountryProfiles survey

Figure 6: Policies or legislation to promote employment onpeople with disabilities. Country Profiles survey


Among those who areworking, people withintellectual disabilitiesare most oftenemployed in shelteredworkshops or doingvolunteer work.

While many high andsome low incomecountries reported thatthere is legislation orpolicy that promote theemployment of peoplewith disabilities,respondentscommented that thosepolicies have beenineffective and poorlyimplemented. Wherethere has been someemployment progress itusually is for peoplewith mild physicaldisabilities e.g. a personwith low vision.

Figure 7: Education for children with disability. EarlyChildhood education. Country Profiles survey

Figure 8: Education for children with disability. Primary andsecondary. Country Profiles survey


Survey respondentsindicated that wherechildren withintellectual disabilitiesare accessingeducation it is stillusually in a segregatedenvironments orprogrammes and thatas children advance tothe secondary levelthey are even morelikely to be excludedfrom regularclassrooms or any typeof education.

Figure 9: Inclusive Education. Country Profiles survey

Figure 10: Educational programmes for adults with disabilitiesCountry Profiles survey


For adults withintellectual disabilitieslittle or no vocationaltraining is available butfor those that do accesssome programmemingit is most likely to be inprogrammes designedfor people withdisabilities andrespondents indicatedthat many of theseprogrammes are “life-skills” programmeswhich do not provideemployment skills.

Barriers to inclusion may be attitudinal or exist in policy orlaw. Several key issues were identified as critical factors inthe exclusion faced by people with intellectual disabilitiesfrom their communities.

Key Issues:

‰ Societal Attitudes

The overwhelming message from self-advocates andfamilies was that communities and societal attitudesincluding religious beliefs were negative towards theinclusion of people with intellectual disabilities. Fear,prejudice and ignorance characterized the responsefrom communities when people who had beenexcluded previously attempted to participate. Amother in Russia told us “I wanted to take my child tothe children’s party devoted to the New Yearcelebration, but they didn’t let me. This is the attitudenot only of our society but also of government and


While people withintellectual disabilitiesseemed to fare better inaccessing health carethan education andemployment, caretends to be deliveredthrough disabilityspecific programmesand services and is notdelivered on an equalbasis with others in thecommunity. Peoplewith intellectualdisabilities are morelikely to live in povertyand people who arepoor are much lesslikely to access healthcare in both high andlow income countries.

Figure 11: Characteristics of the health services for peoplewith disability. Country Profiles survey

every individual.” A self-advocate said, “Some peoplejust don’t understand how passionately we want tobe accepted as we are, to be understood andsupported.” In MENA when a family with a daughterwith intellectual disabilities was approached aboutcompleting her education in an integratededucational setting her religious father interfered byresponding. "God created them like that; he decidedthat they cannot be like others. Who are you to goagainst the will of God?” A mother added, “Thebiggest problem is not transport or education, it’sthat people don’t know how to communicate withsuch children. If they don’t overcome this fear andhostility, nothing will change. Some people even taketheir “normal” children away from our kids.”

A group of self-advocates in Spain had the followingdiscussion.

M: There are discotheques where they won’t allowpeople with Down Syndrome. I saw it on television.

C: I go to a discotheque but there is special sessionfor people with disabilities.

A: I go to a discotheque for people withoutdisabilities and I never had a problem.

MC: There are discotheques where they won’t letanyone come in with sport shoes either.

AC: Not allowing sport shoes is one thing, but notbeing allowed in because of having DownSyndrome – that doesn’t seem fair to me!

A parent in Colombia recounted:

“It was fine and successful when she was little andher Down Syndrome wasn’t so evident. Then, inadolescence her isolation became morepronounced. Then no one invited her or includedher in social events and everyday activities withfriends. They left her out and she felt lonely.”


Other self-advocates in Latin America and Africatalked about being mocked for their looks, ignored byneighbors or called names. Bolivian families talkedabout discrimination on the bus, in the street, inpublic squares and in parks. A mother in Bahrain said“I wish there would be someone to call my daughter andinvite her for activities or to meet people.”

Juan Carlos told us what it means for him to be partof a community.

“I help my friends with math, playing the guitar,piano and flute. I like where I live. I feel part of thecommunity and I belong to a political party and havean identity card so I can exercise my right to vote.”

– Colombia

‰ Lack of Inclusive Education

Both Families and self-advocates talkedabout the importance of inclusive educationas a key building block in achieving realinclusion in the community. We heard thatwhen children with intellectual disabilitiesgo to school with their non-disabled peersthe natural supports which they receive inthe classroom and from their community arefundamental to their inclusion in thecommunity as they grow into adulthood.

Article 24 on education requires that StatesParties ensure “an inclusive education systemat all levels” and that “persons with

disabilities are not excluded from the generaleducation system on the basis of disability.” TheUnited Nations Special Rapporteur on the Right toEducation recommended that this means having onesystem responsible for the education of all students,rather than having a social ministry responsible foreducating children with disabilities. It also meansmaking certain practical accommodations.


“I was told by teachers in the local secondary schoolthat when a child on a wheelchair has to attend aclass on a top floor, the whole class moves to theground floor. There was a situation where the grade12 could not be moved to the ground floor for otherreasons, (so) the pupils had to carry their colleagueon a wheelchair up and down every day”.

– South Africa

In Africa we heard: “What do we want? The same thingsas people without disabilities. We want employment, ourown house, to get married and have children. What canyou do? Make sure we go to school. Help us build self-advocacy.”

Families in the focus groups in Colombia found manybarriers to education for their children including theunwillingness to accept children, lack of knowledge inthe schools and the lack of an accessible inclusiveeducation system. The result was that these familieshad to leave their children in special institutions withlow expectations and targeted to rehabilitationprogrammes. Families have been convinced that theirchildren cannot develop skills and therefore mustspend the rest of their lives with them. This leads to thebig concern; what will happen to their children whenthey are not around?

A parent in Benin said that “disabled people aremarginalized by the government himself, there areschools for some disable but nothing for intellectualdisabled children and without education noindependence, no inclusion. We must work together tofind the way to make them independent.”

The country report from India talked about the realitycompared to the policy;

Under the policy of Education for All, governmenthas been trying to include all students with disability(6-14 yrs) in the mainstream education. They have


the assistance of resource teachers. These resourceteachers are very few and not adequately trained.Regular education teachers are provided a shortterm orientation on disability which is whollyinadequate. The new act Right to Education (RTE)has mandated compulsory, free education for allchildren. The reality is too far from satisfactory.

‰ Employment

For adults with intellectual disabilities one of thebiggest barriers to living independently and beingincluded in the community is exclusion from the labourmarket. Having an income in addition to the benefits ofnatural supports in the community when one isworking is critical to real inclusion. Yet families and self-advocates reported that the kinds of support thatpeople with intellectual disabilities need to find andkeep a regular job are not available. While supportssuch as job coaches and supported employmentagencies exist in high income countries access to themis extremely limited and their effectiveness is uneven atbest. In low income countries the approach by familyorganizations, INGOs and governments has been torepeat the segregated approach of shelteredworkshops and day programmes which we know to beineffective in achieving inclusion in the community.Most often the programmes which people have accessto during the day are segregated life-skills programmeswhich do not develop the necessary employmentrelated skills and most people who enter theprogrammes continue to go there without ever being“ready” to move into real jobs.

Sometimes when there are no supports or services toguarantee inclusion, families take matters into theirown hands as reported from Korea. “My son wants tobe a barista. I think he needs experience in a coffee shop.He wants to work in a Macdonald or so, but it is verydifficult to get a job there. I am thinking of being anowner of a coffee shop so that he can work there!”


CANADA In talking with a group ofparents eager to learn about supportedpaid employment for their children anexperienced advocate on jobdevelopment for hard to place groupswhich include people with intellectualdisabilities said “Everyone talks aboutlife skill classes preparing people withintellectual disabilities to work but weknow these are not the needed skills.People with intellectual disabilities needsocial competency skills, knowing howto move in the world, useful survivalskills and interviewing skills. To keep ajob they need motivation so we have tofind jobs that are within their interests”.

NICARAGUA Exclusion in the labourmarket in Nicaragua is very high.Although the law provides for a 2% ofpeople with disability for companieswith 50 employees or more, this is notmet, both by the state and privatecompanies. There are very fewinitiatives for people with intellectualdisabilities in ASNIC we believe wehave a moral debt to the persons withintellectual disabilities and their families

AUSTRALIA The majority of peoplewith intellectual disabilities are not inemployment; of those who are mostare in sheltered employment.

MYANMAR (BURMA)Jobless population is high.

Chapter 6:Future Directions in Advancing a Frameworkfor Inclusion in the Community

ARTICLE 19 PROVIDES A FRAMEWORK for understandingthe barriers and opportunities for achieving the right to liveindependently and be included in the community. We heardfrom people with intellectual disabilities and their familiesabout the issues that impact on the realization of this humanright. In this section of the report we point to futuredirections which will enable the realization of Article 19.


Choice

Choice, in the context of living and being included in thecommunity, is about having housing options and supportoptions that meet an individual’s vision for living andbeing included in the community and being supported inmaking decisions about those options. Recognizing we allhave realities that restrict and define our housing optionssuch our financial means, location, etc., we know thatoptions cannot be open ended. Choices for everyone areshaped by socio-economic, cultural and geo-political

realities. However real choice is onlypossible when we have a voice andcontrol in our own lives and when theoptions available to us are the same asoptions available to others in ourcommunity. It is about ensuring thatadults with intellectual disabilities havethe same options and choices as adultswithout intellectual disabilities to liveand be included in their communities.For some people with intellectualdisabilities this may mean living aloneor with friends; for others this maymean living with family. What mattersis that the choice is reflective of theindividual’s preference and notrestricted by a lack of options and/orsupports.

Families and self-advocates may need support to developa vision of possible options and/or to think beyond what iscurrently available. Governments need to invest inensuring that housing options and supports are availableand delivered in ways that are responsive to and reflectiveof the vision that people with intellectual disabilities haveabout living and being included in the community

To be able to make a real choice about where and withwhom one lives a person needs:


• To be empowered and supported to make decisionsabout their life and what they want

• A positive vision about where and how they wouldlike to live and what they would like to do

• A voice that is heard, acknowledged and respected byothers

• Diverse options that complement their vision

• Supports to make their decision a reality

• Innovative and creative opportunities to be includedin community

Table 4: The Right to Decide: Issues and Future Direction


Issue Future Direction

Guardianship and Substitute Investment in support networks, self-advocacy and Decision Making supported decision-making mechanisms

Legislative reforms to eliminate guardianship

Culture of Substitute Development of self-advocacy networks and family basedDecision Making organizations to strengthen and enable people with

intellectual disabilities to have their voices heard in theirown lives and in the community

Lack of Models and Investment in pilot initiatives, model legislation and Infrastructure for Supported individualized supports to develop good practice inDecision Making supported decision making

Denial of the Right to Review of law and policy at the national level to remove Enter Contracts restrictions in employment law, family law and other

relevant legislation

Establishment of mechanisms to enable recognition ofsupported-decision making in contracts

Support

Services and supports for people with intellectualdisabilities and their families will vary with a country’sculture, history and tradition. There is no one “model” orway of doing things, however we do know from a halfcentury of research and practice that institutional care is amodel that does not and cannot work. The CRPD andespecially Article 19, calls for people with intellectualdisabilities and families to have the same access to servicesand the community as others in their society. It does notcall for all services and supports to be of one type, or to alllook alike. In the developed world challenges remain,



Families are the only source Investment in formal (state sponsored) and informal of support (friends, neighbors and community) supports for day to day

living that are individualized and flexible

State sponsored residential Shift the focus of investments from group homes and options are segregated and “institutionally” operated housing to more individualized institutional living arrangements which might include support to live at

home with the family

Daily living supports are Disentangle other supports from the provision of housingattached to real estate

Limited Vision of Options Build and support family based organizations and self-advocacy groups to enable sharing of experience andexamples across communities, countries and internationally

Safety and Violence Educate people with disabilities about their rights

Ensure access to justice by people with disabilities (Article13 of the CRPD)

Table 5: Where and With Whom: Issues and Future Direction

including second order deinstitutionalization (See Table 10below). Another challenge is the separation fromdetermining what a person wants and needs from theprovision of those services and supports. In far too manyplaces, eligibility and design of services and supports aremade by the same entity providing them. This is clearly aconflict of interest. In other places people who have anintellectual disabilities risk losing their place to live if theydon’t “behave”. This is entirely at the discretion of those incharge and with no recourse. In yet other places, peoplewith intellectual disabilities remain segregated in largeworkshops or day programmes which are dependent uponthe income from contracts for services withbusinesses or income from government forthat person; thus the person who might wantto do other things with their life is denied thechoice and control to do so. For services andsupports to be truly person centric, moneyfrom governments must be in tune with thewants and needs of the person. The CRPD isabout the rights of persons with disability,not the rights of organizations providingservices and supports. There is a bigdifference.

In countries without institutions, efforts shouldbe made to help policymakers, advocates and national andlocal governments determine and implement the path tofulfillment of the promises of Article 19 without resorting tobuilding institutions. The temptation of creating largeplaces for people with intellectual disabilities to live is greatand on the surface a ready solution to supporting people.However we know from countless studies, exposés, theexperience of policymakers and experts and conversationswith people who were previously institutionalized thatregardless of the amount of money spent, that institutionsby their very existence, separate and segregate people withintellectual disabilities from their community, and from theirfamily. In addition, once an institution is built or remodeledit takes decades, not years to build community capacity andto get people out and eliminate the institution as an option.


In countries with large residential institutions theimplication of Article 19 is that community capacity for allneeds must be developed, and that people currently ininstitutions need to be supported to move to community-based settings, with those settings being consistent withwhat others in their society can access. Institutions, aslong as they exist, consume important resources that couldbe better utilized in community based supports and are ontheir face, a violation of the intent of Article 19.

A challenge for those countries where institutions havebeen closed, as well as for countries developing systems ofservices and support for people with an intellectualdisabilities, is developing alternatives. We have beencalling this development “Second OrderDeinstitutionalization.” Many of the services and supportsdeveloped over the past decades have been smallerimages of what took place in the institutions. Family basedorganizations can be a driving force to help systems ofservices and supports improve to meet the needs offamilies and of people with an intellectual disabilities.



Waiting Lists Timely access to needed services and supports

Eligibility for disability Eligibility tied to objectively assessed needsupports tied to income

Access to inclusive services Inclusion as the “default” option and gradual elimination ofsegregated options

Government cut backs and People with disabilities receiving guarantees of supportausterity measures

Institutions Regular housing in the community and support for families

Table 6: Supports to Individuals in High Income Countries: Issues and Future Direction



Poverty Economic opportunity and income support

Inclusion of people with disabilities in national povertyreduction plans.

Inclusion of people with disabilities in planning andinvestment in the UN Millennium Development Goals andfuture poverty reduction strategies

Inclusion of people with disabilities and their families inInternational Development Assistance planning andfinancing

Invisibility Participation and presence in the community

Awareness raising strategies by governments andinternational NGOs

Medical Model of Disability Strengthen the capacity of the disability movement, familyorganizations and self-advocacy groups to promote ahuman rights approach to disability issues

Investment in Segregated Transformation of NGO strategies and programmes such asProgrammes Community Based Rehabilitation and sheltered workshops

into programmes that provide support to developcommunity capacity and support to enable participation

Institutions and Risk of Adoption by international agencies and donor Institutionalization governments of a policy of no new capital investments in

institutions

Support to individuals, families and communities toeliminate the need for institutions

Table 7: Supports to Individuals in Low Income Countries: Issues and Future Direction

Inclusion

The United Nations has stated that the CRPD demands a“no-gap” policy, stating that no entity can achieve the goalof equality for persons with disabilities on its own.Nowhere is the need for ensuring a “no-gap” policy morenecessary than in the pursuit of the right to live and beincluded in the community. Awareness-raising (Article 8 ofthe CRPD) is required “throughout society including at thefamily level, regarding persons with disabilities and tofoster respect for the rights and dignity of persons with



Need for Short Breaks Reasonable availability of supports and options for familiesto take short breaks either through informal supports orthrough state sponsored supports

Poverty Development of policies to off-set the additional costsrelated to disability

Promotion of programmes for inclusion school and workthat enable parents to be free to work during the day

Economic opportunities such as microenterprise andentrepreneurial ventures as part of overall povertyreduction efforts

Social Exclusion and Lack Strengthen the capacity of family based organizations, of Natural Supports self-advocacy groups and community planning processes

Lack of access to Information Information presented in multiple user friendly formatsthrough schools, community centres, doctors’ offices,parent resource centres, religious institutions, etc.

Table 8: Supports to Families: Issues and Future Direction

disabilities, to combat stereotypes, prejudices and harmfulpractices relating to persons with disabilities, and topromote awareness of the capabilities and contributionsof persons with disabilities.”

The general principle of full and effective participation andinclusion in society means that major changes need tooccur in society “to facilitate full enjoyment by personswith disabilities of the right to live in the community. Thismeans making our communities fully accessible andwelcoming of people who have intellectual disabilities andtheir families. When communities are fully accessibleeveryone benefits – not just people with disabilities andtheir families. This means that individuals and families mayrequire direct supports, but also that there isa range of accessible housing optionsavailable and that people are guaranteed:

• Equal recognition before the law(Article 12)

• Access to justice (Article 13)

• Liberty and security of the person(Article 14)

• Freedom from torture or cruel,inhuman or degrading treatment orpunishment (Article 15)

• Freedom from exploitation, violence and abuse(Article 16)

• Protecting the integrity of the person (Article 17)

• Liberty of movement and nationality (Article 18)

• Personal mobility (Article 20)

• Freedom of expression and opinion, and access toinformation (Article 21)

• Respect for privacy (Article 22)

• Respect for home and the family (Article 23)


• Education (Article 24)

• Health services (Article 25)

• Habilitation and rehabilitation (Article 26)

• Work and employment (Article 27)

• Adequate standard of living and social protection(Article 28)

• Participation in political and public life (Article 29)

• Participation in cultural life, recreation, leisure andsport (Article 30)



Societal Attitudes Efforts to change attitudes using a variety of approaches,including public awareness and inclusive policies andpractices (inclusion in education, in recreation and culturalprogrammemes, in political processes and in the labourmarket)

Lack of Inclusive Education Inclusive education with training and support for teachersand school personnel

Employment Employment in the general labour market for the prevailingwages through the development of microenterprises,supported employment, partnerships between communityagencies and private sector businesses

Table 9: Obstacles for Inclusion: Issues and Future Direction

Chapter 7:Institutionalization: Ending the Cycle of Exclusion

WHILE THE PRIMARY FOCUS of this report is the majorityof people with intellectual disabilities around the worldwho are living with their families but continue to live inisolation from their communities with little or no supportsfor themselves or their families and with poor access toeducation, employment and other community services, amassive human rights violation continues to exist in theform of institutionalization. Article 19 cannot be achievedwithout the eradication of existing institutions and the prevention of new ones.


This section will present and discuss some of the majorlessons learned as a result of past and ongoinginstitutional closures and some of the challenges that stillremain as we move toward fuller compliance with Article19 of the UN Convention.

Institutions are a direct contravention of the CRPD, Article19 and the right of persons with disabilities to have thesame opportunity to choose where they live, with whomthey live, and not be forced to live in a particular livingarrangement.

“I want to go back to Fukushima!” “I cannot stand thelife in this institution, since I cannot have my privacy.”“I want to go shopping and hold the event of self-advocacy activity as I want.” “I feel like I time travel tothe old days when I was institutionalized.” “I want tohave my own room as before.” “I want to work again inFukushima as soon as possible.”

– Self Advocate, after the Tsunami in 2011 Japan

We have learned that when asked, peoplewith intellectual disabilities choose not tolive in institutions. We know that institutionsdeny people basic rights of citizenship,personal control, personal privacy, decision-making and inclusion in community. Basedon personal stories as told by people whohave lived in these facilities, we know of theabuse, isolation and personal suffering thatinvariably occurs in these facilities. Not onlydo we continue to face the challenge ofclosing the institutions which exist, we alsomust address the legacy that institutional

care has left on our approach to supporting people in thecommunity and we must guard against the threat of newinvestments in institutions and institutional approaches.To do this it is helpful to understand what we havelearned about the closure process which has taken placein many countries.



“An institution is any place in whichpeople who have been labeled ashaving an intellectual disability areisolated, segregated and/orcongregated. An institution is anyplace in which people do not have,or are not allowed to exercisecontrol over their lives and the day-to-day decisions. An institution is notdefined merely by its size.”

– The Canadian Association forCommunity Living – People First ofCanada Task Force on the Right toLive in Community

‰ Deinstitutionalization is more than closure

Perhaps the first and most important lesson learned isthat deinstitutionalization is not just about closinginstitutions – not just about the evacuation of peoplefrom one environment to another. We have learnedthat deinstitutionalization involves assisting people toleave institutions and take their rightful place incommunity and also that it involves the developmentand provision of appropriate and adequatecommunity and family based supports and servicesfor both those leaving the facility as well as for thosepersons who are currently living in community. Wehave learned from past efforts thatdeinstitutionalization must be as much aboutsupporting people to continue to live in thecommunity (e.g. prevention) as it is about closingfacilities. To do otherwise simply means that overtime persons leaving the facility will be replaced byothers from the community who cannot accessneeded supports to continue to live in community.

‰ Everyone can live and be included in thecommunity

Another major lesson learned is that all people livingin institutions can live more successful and inclusivelives in community. We have learned that communityliving is for all people – not just those who have lesssignificant challenges. Experience in countries such asthe UK, Canada, USA, New Zealand, Norway andSweden have demonstrated beyond doubt or debatethat institutions do not need to exist (or continue toexist) to serve the needs of certain groups of people.Research from numerous institutional closures haveunequivocally demonstrated that persons with“severe” disabilities, those with challenging behaviors,people who are “medically fragile”, and persons ofadvanced age (who have lived in the institution formany years) can all be successfully supported incommunity.


LESOTHO “We believe that people withdisabilities should not be kept ininstitutions, since it’s like treating themlike animals, where their minds arerestricted. They have the right to be partof their families and siblings. Familiesand communities should learn how totake care of them”

AUSTRALIA Not explicitly, butthrough funding people are hinderedfrom living in the community.

JAPAN There have been initiativesin Japan, but at the same time wehave the fact that the number ofinstitutions is growing. From theresearch only 3.4% has beendeinstitutionalized and two of themain new placements are their homesand group homes. We have to addanother fact that almost the samenumber of people are newlyinstitutionalized.

We are now aware that the many of the limitationsusually associated with disability are as much relatedto the surrounding environment and rules of societyas they are to the individual. We know that people,regardless of type or extent of disability, do not needto live in institutions. Most importantly, we know thatpeople flourish and thrive when they live in thecommunity, with appropriate support.

We have learned that efforts to assist people to leaveinstitutions must be guided by those values andprinciples that are known to achieve positiveoutcomes. A deinstitutionalization plan must ensurethat people have:

• The right to choose where they will live, andwith whom

• Services/programmes that are personcentered, directed and controlled by theperson and that are respectful of thatperson’s right to make choices and takerisks, within the context of their culture

• The right to individualized livingarrangements and control over the neededresources

• The necessary disability related supportsneeded to fully participate in thecommunity

• Support, as necessary, fromfriends/family/advocates to assist in decisionmaking (supported decision making)

• Services that meet all of their needs and are ofhigh quality, portable and accessible

• Help in developing natural supports includingfamilies, neighbors, friends



Drawing on the Canadian and USA experience, the Canadian Association for Community Living – People First of CanadaJoint Task Force on the Right to Live in Community has identified 10 key recommendations as critical to creating realhomes and planning the closure of an institution (The Right Way, 2010). To summarize, these are:

• Involve champions for community living

o The decision to close an institution requires vision, passion, leadership— and champions. While these championscan come from many sectors, traditionally family members and self-advocates take the lead role in demandingboth institution closures and community supports.

• Ensure that the needs and preferences of the person come first

o Each individual must be empowered to choose where and with whom to live and the resulting living arrangementmust truly be that person’s home.

• Respect the experiences and roles of families

o The perspectives of families must always be taken into account when initiating planning for an individual to moveto his or her own home in the community. Families will often be the best source of information about the personand often form the nucleus of the person’s support network in the community.

• Facilitate person centred plans and create a real home for each person

o Engaging in respectful, person-centred planning will maximize the potential for achieving positive personaloutcomes. The goal is to support the individual in ways that meet his or her needs and allow him or her to live ina real home, to participate meaningfully in community life, to make real choices and have his or her rights andwishes respected.

• Create quality supports, services and safeguards

o Resources previously allocated to the institutions are reallocated to communities to ensure adequate capacity tosupport everyone in the community. The need for increased capacity in communities is identified in a systematicand timely way, so that planning can occur and supports are in place when individuals make the move to theirnew homes.

• Recruit and develop qualified support staff

o The availability of skilled, knowledgeable employees to provide the individualized supports needed by individualswith intellectual disabilities in their homes and communities is vital to success. Many former institution staff cansuccessfully transition to community-based environments and strategies for accommodating these staff need to bedeveloped.

• Establish community partnerships

o The successful closure of an institution depends on sound collaborative working partnerships between individuals,


families, government and community organizations. Alliances should be nurtured with family supportorganizations, local advocacy groups, social justice advocates, service groups, unions, business leaders and otherpossible allies.

• Establish a clear plan and time frame for closing the institution

o Government and community leaders must share a clear, unequivocal, public commitment that the institution willbe closed, that resources will be allocated to the community and that planning will ensure that each personresiding in the institution will be supported to move to his or her own home in the community.

• Communicate the announcement clearly and effectively

o Careful consideration must be given to how the closure decision is announced and how messages will beconveyed. Undoubtedly there be will at least some opposition to the closure, from various sources, andgovernment and community leaders must be prepared with clear information about what is planned and why.

• Carefully coordinate/support each person’s transition to the community

o Many individuals make quick transitions to living in their new home with little to no negative impact. Others mayrequire a more gradual change from the old environment to the new one. The people who know the person wellwill be in the best position to help plan the transition and any intermediate steps, if needed.

Also in the consultation our member in New Zealand said it was also important that:

• Where individuals do not have families involved, independent advocates should be appointed

• People with disability who are moving from institutions and their families being able to visit goodexamples of community living so they can see how it works and undertake an evaluation

While the real life stories of people who have leftinstitutions, testimonials from families, andoverwhelming research point to the world wide successof institutional closures, the process has not beenwithout its share of mistakes. The way in whichdeinstitutionalization has taken place in manyjurisdictions has left us with a legacy of institutionalthinking which continues to characterize the way peoplereceive supports and the way service systems areorganized.


Table 10: Second Order Deinstitutionalization

SECOND ORDER DEINSTITUTIONALIZATIONSteven M. EidelmanH. Rodney Sharp Professor of Human Services Policy and Leadership

Over the past six decades it has been family run organizations that have led the way in thetransformation of systems of support for people with intellectual disabilities, from large custodialinstitutions to a life in the community. In the 1960’s and 1970’s, the early days of the movementtowards community based supports, families who were struggling without any services, providing care24 hours a day, were frequently the first to open programmes in community settings for their sons anddaughters. Most often it was a programme that provided something to do during the day, both forchildren who did not have the right to education and for adults. Later it was group homes. Thosefamily run organizations applied what was known at the time, which mimicked the model of care thatexisted at that time – facility based services, but on a much smaller scale. As families and advocatesworked to get people out of institutions, these models became the foundation for the service system.

These services changed how people in institutions lived and provided relief for families who weregrowing tired and wanted permanency for the future. While those changes were more than a changein real estate and geography and were a considerable improvement from the institution, they lacked anaffirmative philosophy of person centeredness, self-determination, inclusion and full participation in thelife and fabric of the community. While that was certainly not the intention, in all too many instances ithas been the result.

Now, in light of the CRPD and the promises it puts forth about community living and supportingfamilies, we must prepare for Second Order Deinstitutionalization: The Remodeling or Transformationof Existing Community Services, including traditional building-based day supports and many grouphomes.

What is Second Order Deinstitutionalization? It is the remodeling or transformation of existingcommunity services. It is also difficult and important work. Many of the community programmesdeveloped in the past as alternatives to institutions are now the very programmes which must change.Many of those programmes were developed by people who remain in leadership roles in family basedorganizations and are invested in the programmes they helped to create. We have learned that physicalpresence in the community does not necessarily assure integration and inclusion. While manycommunity services remain traditional, based on what we knew how to do in years past, we also seeexamples of programmes that have learned how to include people with intellectual disabilities in bothorganizational decision making as well as having them self-direct and choose their own supports andservices. We see programmes that support people living how they want, and with whom they want.We see programmes supporting people to volunteer in their communities, gain jobs in the maineconomy of their community and even in the creation of small businesses.

And all too often, programmes located nearby those fully including people with intellectual disabilitiesare segregating and isolating people with intellectual disabilities. There is expertise, globally, in how to


impact the transformation and remodeling of services. Individuals, families and family basedorganizations need partners and allies to cause these changes to happen. And we have to recognizethe reality that remodeling existing services does not happen without transactional costs during thetransformation process, and does not happen without opposition of multiple fronts and therefore can’thappen without strong leadership.

Sometimes leaders of family-based organizations that run traditional congregate supports justify theseby saying that the people who receive supports “like” these programmes; and don’t object to the lack ofchoices and control in their lives. Sometimes people are in services that their families want or are havesimply become accustomed to but the individual, him or herself, if presented with alternatives, wouldnot choose. These arguments for traditional group homes, day programmes and sheltered workshopsare much like the arguments families of people in institutions made, and make, e.g. “they are safer here,they like it, and we know this programme will be here as long as we need it.”

There is security in buildings and in things that are known and familiar. For family based organizationschanging supports and services often means asking families to imagine a different future and helpingthem do so. In the past we’ve asked families to trust the professionals, to work with them and their sonsand daughters and, often, to agree to things they have never seen. But with person-centered planning,self-direction and choice, we can engage families in planning a new future by focusing on what theirfamily member might want and building in the supports to minimize risk. In this process there areconstant surprises about what is both better and possible. For all families, such change is hard. But iffamily run organizations do not take the lead, others will do so and family organizations risk abdicatingtheir power and credibility by lettings others act while they remain passive or even oppositional.

But, in the current global economic situation, resources, never plentiful in most places, are now in evenshorter supply. There simply are not enough financial resources to maintain three levels ofprogrammes:

• Large public/private institutions

• Medium sized facilities/Older community programmes

• Inclusive community supports and services

The leadership challenge for family based organizations, including self advocates, is to help shiftservices and supports from low value, segregated and isolating services to high value supports andservices, those that help fulfill the promises of the CRPD, and especially of Article 19. There is risk instaying with what we know well – with service models from the past. If family based organizations donot lead by example, other service providers may take the lead, thereby weakening the voices offamilies. If family-based organizations do not take the lead in assuring fully included lives for peoplewith disabilities, they may well lose some of their moral authority and the ability to impact change withother providers of services and with governments. People with intellectual disabilities and their familiescannot afford for this to happen. Family organizations must create the vision and the passion fortransformation, both for family based organizations themselves, and for service providers andgovernments. It is too important to leave to chance.


Both mistakes that we have learned from and in someinstances mistakes that we continue to make. Some of themost important of these would include:

‰ Cost Savings

Many of the early efforts to close institutions weremotivated, at least in part, by the lure of reducedcosts of community supports as compared toinstitutional costs. This initial cost saving was dueprimarily to the disparity between institutional wagesand community-based wages. In some countries thisgap has been closed but it continues to be an issue infinding and keeping good support people in thecommunity.

While reduced costs should never bethe predominant consideration, the costneutrality of the conversion frominstitutional model to a community-based model does pose increasedchallenges to securing neededgovernment and community approvaland endorsement. Furthermore injurisdictions where only those peoplewho live in institutions receive statesponsored support, the shift tocommunity supports would require theopening up of resources to all peoplewith intellectrual disability.

Finally, while the average cost per individual living inan institution may be higher than for that person tolive in the community with support, there aretransactional costs associated with the closureprocess which require an initial investment. In theshort term, using cost savings as a motivation forclosing institutions is a mistake.



‰ Post Institutional Placements

Many early closure processes developedcommunity based residential options(usually group homes) into which residentswere “placed”. While certainly preferable tocontinued life in a large institutional setting,such a process did not make necessaryaccommodation for individual choice norwas attention given to ensuring the use of aperson centred planning approach. Overtime many of these “community options”became as restrictive and ‘institutionalized’ innature as the institutions they were designedto replace. People want homes, not houses;people want meaningful lives, not entry intoservices.

‰ Specialized Services

In the transition to community many individuals wereprovided with supports and services as delivered bydisability specific agencies. People lived in homes inwhich only people with disabilities lived, went toschool or vocational/employment programmemesthat served only people with similar labels. Thus whilehaving an increased presence in the community as aresult of their move from the institution, many peoplewere still isolated and congregated in services andprogrammes not typically used by other members ofthe community. In more recent times, greater successtoward full inclusion and community participationhas been achieved by linking resources to the personrather than to an agency, which enables the persongreater choice and control over the supports theyneed and use in community.

‰ Easiest to Support

One of the basic mistakes made in institutionalclosures is that only those persons deemed “easiest tosupport / most able to live in community” were


SWEDEN Within many areas thereare adequate laws and rulings – butthey are not followed in practice. Anexample of this is a recent surveyshowed that only 6 of 271government authorities had followedthe regulations concerning accessibilityfor persons with disabilities.Additionally the report showed that theCRPD does not yet play an importantrole when studies and inquiries arecarried that concern people withdisabilities. And the CRPD is still nottaken into consideration to any greatextent in terms of court decisions orthe practices of governmentauthorities.

moved to community options while those with moresignificant challenges were often relocated to otherinstitutional settings such as nursing homes,rehabilitation centres or other similar long term carefacilities.

We know that deinstitutionalization is not a simple matterof closing a facility and moving residents to thecommunity. To be successful and sustainable, the processmust involve careful individual and systems level planning.

Additional community based supports must often becreated and/or expanded to support those returning tocommunity as well as those who are already in community(usually with families). Adequate and appropriate supportmust be provided to both individuals and families. Fullconsideration must be given to ensuring that individualsbecome full and participating members of theircommunity and not have simply exchanged oneinstitutional setting for another that is merely different insize and location. Self-advocates from across the worldhave told us that life in community – inclusion incommunity – is possible only if it comes with the ability tomake choices, take risks and have control.

As countries complete their deinstitutionalization efforts,continue to close existing facilities and/or begin toconsider the merits of initiating such a process, there areseveral emerging and ongoing challenges that must beaddressed.

‰ Other Institutional Settings

Stories told to us by families and self-advocates,particularly in countries where traditional institutionsspecifically for people with intellectual disabilitieshave been closed reveal an increasing trend of usingother institutional placements as an acceptableoption. In countries such as Canada, the USA, Japan,New Zealand, Australia and the UK families and self


AUSTRALIA There are a variety oflessons learned – eg. peopleinvariably live better lives, familiesoften resist the move, governmentcommitment is influenced primarilydriven by the cost, it is harder todevelop individual alternatives thangroup ones (e.g. group homes).

INDIA “Our students sometimescome from home with nothing: noschool equipment or basic necessities.We are starting to keep chickens andgrow vegetables so we can improve thechildren’s diet and help them stayhealthy.”One young boy at the school adds: “Ilike to board at the school becausethere I have a bed with a propermattress. We play with children fromthe mainstream classes at breaktimes.” His friend, a young girl, adds:“I would even prefer to stay atweekends too.” Their parents reportedbeing pleased that their children werenow in school, where they are learningmore than they were at home, and theydo not have to travel so far each day.

advocates are often given little or no choice inhousing options, often being referred to seniors’residences, nursing homes, and/or otherinappropriate long term care settings. Additionally,the size of these settings also continue to grow asgovernments cut back spending in the social sector.

‰ Something is Better Than Nothing

In many countries, particularly low income countrieswhere community supports and services to familiesand individuals are minimal or nonexistentinstitutions are being considered as a legitimateresponse to the critical need for support services.Sometimes, due to cultural issues, but more oftenbecause no other services are available or beingoffered, families mistakenly see this offer ofinstitutional care as a step forward.

‰ Services as Outcomes

Many deinstitutionalization processes still measuresuccess in terms of the number of buildings closed,placements made, and residential options created.Doing so however confuses “tools” with outcomes.The closure of an institution is not the goal; it ismerely the result of assisting people to take their

rightful place in community. If in helpingpeople leave an institution we do not ensurethat they have meaningful lives in community,then the process is seriously flawed. Manycountries continue to rely almost exclusively ontraditional residential models such as grouphomes. Yet a move to a group home is a“success” only if it provides a vehicle throughwhich the person can create for themselves ameaningful and participatory life in community.Experience has taught us that options such asgroup homes, while an expedient tool to assistin the deinstitutionalization process, do notnecessarily enable meaningful lives in


AUSTRALIA “Governments are notbeing held accountable for what theyhave agreed to under the CRDP. Thereare not “a lot of votes” in the provisionof disability services, and little pressurefrom the public to deliver or improvedisability services. Many people withdisabilities and their families and carersdo not have a strong voice to influencethe delivery of services. There is animportant place for campaigns andexternal advocates to hold governmentsaccountable and to raise awareness ofpeople's needs and rights.”

community; indeed many times they are an obstacleto achieving that goal. Buildings do not providemeaningful lives – choice, access to appropriatesupports, and relationships are the elements neededto establish and maintain inclusive lives incommunity.

Based on institutional closures in many countries acrossthe world we now know that to ensure successful andpositive outcomes, efforts toward deinstitutionalizationmust reflect the following elements:

• Individuals and families must be given status andsupport to exercise personal choice

• Supportive relationships for peoplemust be built that give people valueand respect

• Opportunities and support must beestablished for people to learn andwork in the community

• Community services and structuresmust be available and accessible (thatis they must be usable by all people,free of barriers, etc.)

• Flexible and responsive personalsupports must be provided to meetdisability related needs

We must learn from our mistakes, not repeat them.Deinstitutionalization must be about more than simplyclosing large institutions, about more than simplyreplacing large institutions with smaller ones, about morethan creating networks of group homes, and ultimatelyabout more than substituting isolation outside thecommunity for isolation within the community.Deinstitutionalization must be about creating capacitywithin community to support people with intellectrualdisability and their families, to live as full and equalcitizens, in ways that reflect and respect the prevailingculture and traditions. The outcome must be lives that aretypical and ordinary, yet valued.



PART IV:Achieving Inclusion

DESPITE THE VAST DIFFERENCES in their lives, peoplewith intellectual disabilities and their families all aroundthe world share a common experience. Through theprocess of sharing those experiences like the ones thatresulted in this report, we are able to learn about systemicbarriers and identify common challenges. We also learnabout which strategies are successful in overcoming thosebarriers. In turn, this shared knowledge enables us toprovide our members with another lens through which


Chapter 8: The Role of Family Based Organizations inMaking Change and Promoting Inclusion

they may do a critical analysis of the challenges in theircountries. By linking local voices to global change andglobal knowledge to local change we create a cycle oflearning and a vehicle for using knowledge sharing toaffect change. For example, while national memberorganizations work to get children with intellectualdisabilities in school, Inclusion International draws fromtheir experience and knowledge to influence agencies likeUNICEF and the World Bank to develop policies andinvestment strategies to promote inclusion.

For over 50 years Inclusion International has worked withits member organizations around the world to improve thelives of people with intellectual disabilities. Our membersare national family based organizations thatvary from large agencies that providesupports and services in the community tosmall grassroots organizations that have nostaff, budget nor offices. All of theseorganizations were established by familieswho wanted to develop something betterfor their sons and daughters.

Historically, many parents in all parts of theworld were told by doctors and otherprofessionals that their sons and daughterscould not function in society and that theyshould be put in institutions or kept athome, out of school, out of sight, out of thepublic eye. In some parts of the world families withchildren with disabilities were shunned by theircommunities. Family based organizations providedfamilies with information and peer support and theybegan to develop programmemes and services to meetthe needs that were not being served.

As the organizations matured, they began to include thevoices and perspectives of adults with intellectualdisabilities. Self-advocacy, organized groups of peoplewith intellectual disabilities, are well established in someparts. People with intellectual disabilities have organized


themselves to raise awareness, to make demands ofgovernments and to claim their rightful place incommunities. However, not everyone’s voice is heard;those who remain in institutions, those in parts of theworld where self-advocacy is not yet supported orunderstood and those who cannot communicate in waysthat people outside of their closest supporters canunderstand are all still ignored or unheard. Today, family based organizations serve a globalmovement of people with intellectual disabilities and theirfamilies that has advocated for a vision of “a world wherepeople with intellectual disabilities and their families canequally participate and be valued in all aspects ofcommunity life.” 1

During the negotiations of the UN CRPDInclusion International was mandated by itsmembers to ensure that the perspectiveand priorities of people with intellectualdisabilities and their families was reflectedin the Convention. The real impact that thevoice of self-advocates and families had onthe Convention was not the inclusion of alist of specific accommodations for peoplewith intellectual disabilities but rather ashift in understanding that clearly calls ongovernments and societies to takeresponsibility for building inclusion. The

Convention is about more than ramps and laws, it is aboutbuilding inclusive societies, schools, labour markets andcommunities. The shift towards inclusion which isreflected in the CRPD is the legacy of the inclusionmovement.

The challenge we have now is to consider our role inmaking change happen at the local, national andinternational levels. The activities and mandates of familybased organizations that are the members of InclusionInternational reflect the demands and needs expressed bypeople with intellectual disabilities and their families.However, in attempting to address these immediate and


urgent needs, we are often limited to short term, stop gapmeasures which serve only a small number of those whorequire support and tend to be focused on protection. Families would like to be assured that their family memberwith an intellectual disabilities is safe, has opportunities tobe included in the community as a contributing memberand that he/she be valued for who they are. They wouldlike their family member with a disability to have a life liketheir brothers and sisters but since they are the mainsupport in their family member’s life, their greatest fear iswhat will happen when they are not around. They knowsegregation has led to isolation and exclusion for theperson with a disability and for them as families but theyare tired and they are struggling to develop strategies forthe future.

To be effective in meeting the challenges ahead we mustidentify new strategies, shifting from the role of fillinggaps to one that focuses on affecting social change. Asagents of change in our communities, we need to deployour limited resources to strategies which will have a lastingand transformative impact on our communities by:

• Building partnerships with other communitystakeholders (employers, cultural and religiousgroups, political parties, colleges and universities,media etc.)

• Working with governments to ensure mainstreamsystems are inclusive (Education, employment,housing, transportation, justice etc.)

• Strengthening the voice of self-advocates andfamilies in their call for inclusion in the community

As we contribute to making our communities moreinclusive for people with intellectual disabilities, we helpmake them more inclusive of all people who are at risk ofbeing excluded, and thereby strengthen our communities.Shifting our priorities to focus on building strongercommunities for all will mean shifting from filling gaps tobuilding inclusive communities (Table 11) ;


Table 11: Stronger Communities for All

From Filling Gaps To Building Inclusive Communities

Providing segregated Providing supports to individuals to access regular employment, housing and employment, housing and educationeducation services for a few

Working with community stakeholders to identifyexisting systems and supports

Training self-advocates in Building and supporting self-advocacy groups“life skills”

Training parents in “intellectual Developing family resource and training programmes disability” to enable families to access and use supports in the

community

Providing supports to families to assist in planning

Assisting families to build and sustain natural supportsin the community

Rehabilitation: skills measured Community development: Inclusion in the community as outcomes as outcomes

Supports defined and delivered Supports defined by needs and demands of individuals by service providers (supply side) with intellectual disabilities (demand side)

Advocating for budget Advocating for budget allocations for disabilityallocations for disability supports supports and inclusion in mainstream budgets

Low expectations and negative Raising Public Awareness of human rights and attitudes inclusion

Sharing examples of people with intellectualdisabilities living and being included in the community


By shifting our strategies to focus more attention oncommunities and systems and less on the person’sdisability, we are helping to build communities that aremore inclusive of all groups and therefore stronger. Whenteachers learn how to teach students with a range oflearning styles, with different types of intelligence, how toadapt curriculum, they become better teachers of allstudents. Likewise, an education system that makessupports available to the teacher, that draws on allpersonnel to help problem solve, that is committed tomaking every student succeed rather than banishing theones having trouble is a better system overall.

The presence of a worker with a disability inthe workplace can help build morale and itmeans fewer people dependent on incomesupport. Inclusion and inclusive strategiesthat develop relationships and strengthenthe informal connections between peoplecontribute to social capital for both familiesand individuals. The inclusion of people withintellectual disabilities in the communitycontributes to social cohesion; theacceptance of difference in the community.

While inclusion in the community isimportant to individuals and families, it is also essential tobuilding stronger social and economically cohesivesocieties. Families and family organizations have oftenbeen the drivers of change in communities, as volunteersas advocates and as support systems but they need helpto play those roles. We need to invest in families and infamily organizations to achieve inclusion in thecommunity for people with intellectual disabilities andstronger communities for all.


130 Inclusive Communities = Stronger CommunitiesGLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY

Conclusion

131



Conclusion

ACHIEVING THE RIGHT TO LIVE AND BE INCLUDED inthe community for people with intellectual disabilitiespresents a multi-dimensional and complex challenge for arange of actors including families, educators, employers,community stakeholders, governments and people withintellectual disabilities themselves. If we examine the keyfindings from consultations with self-advocates andfamilies, what emerges is a roadmap for public policywhich will lead the process for change in our communities.

Key Findings and Policy Recommendations:

‰ The majority of people with intellectualdisabilities have no voice or control in thedecisions about where and with whom they live.

Recognition of the right of each person to makedecisions about their own lives will require change inlegislation, societal attitudes and the role of families.It is tempting to assume that legislative reform alonewill achieve this shift. However, to ensure that realchange happens in people’s lives, several otherimportant investments need to be made. First,families and people with intellectual disabilities needsupport to develop personal support networks intheir daily lives which will enable adults withintellectual disabilities to express their voice andexercise control in their lives. This support can bedeveloped through investment in self-advocacy andsupport to family based organizations and training forfamilies. Second, supported decision makingstructures and processes need to be developed. Whilesome models of supported decision making are beingtested in different jurisdictions, there are only a fewexamples internationally of these models beingrecognized in law.



‰ People with intellectual disabilities have limitedchoice and options for where and with whom theylive.

The public policy response to supporting people tolive and be included in the community (where therehas been a response) has largely focused on thesupply of housing specifically designated for peoplewith disabilities serviced by disability supportagencies. While there are good examples ofprogrammes that give individualized or directfunding to be used by individuals to purchasehousing and services from the open market, the mainapproach taken by governments has been to fund the“supply-side”. Too often, the housingmodels and programmes that receivefunding are disconnected from the realneeds and demands of people withintellectual disabilities. A more evenbalance between funding of the“supply” and “demand” sides, wouldachieve: better accountability for thequality and responsiveness of publiclyfunded housing; a greater range ofhousing and support options available;and greater choice, control andflexibility in the lives of people withintellectual disabilities and theirfamilies.

There is a risk that in low income countries wherelittle or no public investment has been made tosupport people to live in the community, increasedawareness by governments as a result of the CRDPmay mistakenly lead to investments in congregateliving (group homes, small or large institutions)instead of demand side investments (income support,housing subsidies, support for daily living activities).When deciding how to best use limited resources,governments should choose policies andprogrammes that enable individuals to make the best


use of existing mainstream services and supports intheir communities.

‰ Institutions continue to be a major source ofhuman rights violation and there is evidence insome regions that the admission of children isincreasing and that new forms of institutions arebeing created.

Without exception governments must commit toclosure of institutions and a clear and sustainedstrategy to invest in community and communitysupports. The continued institutionalization of peoplewith intellectual disabilities is a direct violation of the

CRPD. Pressure from all human rights actorsmust force governments to adopt no newadmissions policies and no capitalinvestments while individualized plans forpeople living in institutions to return to thecommunity are developed. We havelearned from the closure processes indifferent jurisdictions of the risks infocusing only on the closure process andnot on the corresponding communitydevelopment required to achieve living andbeing included in the community. Whileindividualized support plans are critical toensure successful return to the community,

processes to develop community supports andmainstream inclusion are equally important.Vigilance is needed to ensure that new forms ofinstitutions are not built.

‰ The vast majority of people with intellectualdisabilities live at home with their families withlittle or no services or support to the individual.

Children and adults with intellectual disabilities areusually unable to access disability related supportswhich they require because they live at home withtheir families. In the case of children, public policies



continue to make more services available to childrenif the child lives outside the family home (institutions,foster homes, long term care facilities). Despite therights of the child to a family, public policy continuesto force families to give up their children to the statein order to access basic supports. For adults withintellectual disabilities, existing disability and/orincome supports are either not available orinsufficient to support people to becomeindependent.

There is a clear need for investment in the provision ofdisability related services and supports to childrenand adults with intellectual disabilities. In highincome countries, these services and supports needto be separated from eligibility for income supportsand they must be flexible and portable. In lowincome countries, few government-funded supportsexist and some inconsistent and limited supports aredelivered by International NGOs (INGOs).Governments must develop a clear overarching policyconsistent with the CRPD and in particular the right tolive and be included in the community which guidesdevelopment spending and to which INGOs must beaccountable.

‰ The major source of support and care whichpeople with intellectual disabilities receive is fromtheir families yet families receive little or nosupport from communities or governments.

The preamble to the CRPD and Article 23 clearlyrecognizes that families require supports to assisttheir family member with a disability to realize theirrights. Nowhere is this more important than in therealization of the right to live and be included in thecommunity. Families are the main vehicle throughwhich this right may be achieved. Families are thefirst and often main advocates for inclusion ineducation, access to services, employment andhousing. Yet public policy in most jurisdictions has


not been developed in “family friendly” ways; theyreceive little or no information or emotional supportin caring for their family member; they do not receivecompensation for lost income due to caregivingresponsibilities; they have little access to serviceswhich provide short breaks in their caregivingresponsibilities and as they age and become unableto provide care and support, they have no access tosupports to plan for the future of their familymember. Many of these supports can be developedin both low and high income countries at thecommunity level through investments in communitybased organizations and existing mainstream servicesand programmes. Where some good examples inpublic policy have been developed to support therole of families, concerns have been raised aboutreinforcing the dependence of adults with intellectualdisabilities on their families. It must be absolutelyclear that supports to families are not to be used as asubstitute for supports to the individual but ratherwithout both, inclusion in the community cannot beachieved.

‰ Even when people with intellectual disabilities livein the community they are often isolated andexcluded from the community.

In high income countries where serviceinfrastructures have been developed they continue tobe professionally driven, modelled after institutionalcare; segregated and isolating. Governments mustintroduce a reorganization of the service deliverysystem which requires a paradigm shift by all actors(disability and other service providers, public policyactors, families, employers, educators etc.) towards asystem which is directed by the needs and aspirationsof people with disabilities. This shift will meanchanges in a service industry which has beenentrenched in a way of working for many years, but aswith the processes of deinstitutionalization andinclusive education have taught us, progress requires


leadership and vision. That vision should come frompeople who themselves use and require services tolive in the community.

In low-income countries the experience of isolation inthe community is, in part, the result of lack of services(or limited and poorly directed services delivered byINGOs) but also a result of social and cultural attitudesabout people with disabilities generally. While thereis clearly a need to develop aconsistent and inclusive approach tothe delivery of supports, a lot can beachieved through the development ofcommunity programmes which raiseawareness of the rights of people withdisabilities and which demonstrate byexample the ways in which peoplewith intellectual disabilities cancontribute and participate in society.

‰ Communities fail to organizesystems to be inclusive (education,health, transportation, politicalprocesses, cultural and religiousgroups, employment etc.).

The most central and important finding of this reportis the clear message from self-advocates and familiesthat no matter how successful we are in providingchoice and control to people with intellectualdisabilities in their lives and in providing services andsupports to them and their families, without afundamental rethinking about the way that ourcommunities are organized (education, labourmarkets, health care, political processes, cultural andreligious groups etc.) we cannot hope to achieve realinclusion in the community. We know that ourcommunities benefit from and are stronger as a resultof inclusive planning and approaches. While theprocesses for making these changes in ourcommunities are multiple, there are some key


building blocks for governments to use as first steps.Public policies and practices that support theinclusion of children with intellectual disabilities inregular classrooms with their peers and of adults withintellectual disabilities in regular workplaces withothers in their communities will result in bothimproved capacity of individuals to contribute andparticipate in the community and in betterunderstanding and capacity of communities tosupport inclusion.

These changes will not be easy, and some may takedecades, not years. The CRPD recognizes that someprovisions will be subject to “progressive realization” andthat each country will proceed in its own way, and atdifferent rates. Some obligations in Article 19 should beconsidered urgent and immediate action such as theclosure of institutions. But all countries can makeprogress. The CRPD offers people with disabilities andtheir families hope for a better future. InclusionInternational is committed to that better future for allpeople with intellectual disabilities and their families. Weknow that by working together, locally, nationally,regionally and globally, we can contribute to a betterfuture and better communities for all.

Table 12: Using the results of inclusion international’s research on the right to liveand be included in the community. Steps to Inclusion

139

Strategies

• Encourage and support children andadults who have an intellectualdisabilities to speak for themselves and toexpress their hopes and dreams.

• Focus on planning with individuals sothey can create futures around theirinterests and desires.

• Take advantage of services, programmes,jobs that are available in the communityfor all and provide support options there.

• Don’t build new large centres to housepeople with intellectual disabilities.

• Don’t invest in refurbishing existing largecentres.

• Start planning for the people now livingin large centres so that they can becomeincluded in their communities.

• Remove all incentives that give moresupport to children or adults if they moveaway from their families.

• Provide supports to families AND toindividuals with disabilities. Supportorganizations of families as well as self-advocacy.

• Conduct public awareness about peoplewith intellectual disabilities to reducestigma and prejudice.

• Invest in making communityprogrammemes and services accessibleand inclusive rather than in programmesexclusively for people with disabilities.

Research Finding

People with intellectual disabilitiesdon’t have the chance to decidewhere and with whom they live.

People with intellectual disabilitieshave few choices about where theycan live.

Institutions deprive people of theirrights.

Most individuals with intellectualdisabilities live at home with theirfamilies and receive little or nosupport.

Families receive little or no supportto help care for a person with anintellectual disabilities.

Even when people with intellectualdisabilities live in the communitythey are often isolated.

Community systems – education,health, transportation, politicalprocesses, cultural and religiousgroups, employment, etc. – excludepeople with intellectual disabilities.

1

2

3

4

5

6

7



Appendix 1:Contributors to the Report

AFRICA

Country Participants in the Regional Meetings:Ethiopia, Kenya, South Africa, Lesotho, Malawi, Mauritius, Namibia, Swaziland, Tanzania, Uganda, Zambia,Zanzibar, Zimbabwe, Benin, Ghana

Country Organization Representative

Benin La Chrysalide Claudine Daizo

Burundi Association communautaire pour la Umwana Nk’abandi promotion et la protection des droits de Programme Partnership –l’homme UAPP « A.C.P.D.H. »

Ethiopia Ethiopian National Association on Intellectual Gessesse TadesseDisabilities (ENAID) Mihret Nigussei

Ghana Inclusion Ghana Auberon Jeleel Odoom Carrie BrownCindy LairdMary Kufuor

Kenya Kenya Association for the Intellectually Allys WilliamsHandicapped (KAIH) Erastus Waicha Ngure

Fatma WangareJohn OkanyaPeter Oyundo OduolStephen Waweru

Lesotho Lesotho Society of Mentally Handicapped Kgomoco Motsamai Person (LSMHP) Palesa Mphole

Malawi Parents of Disabled Children Association Enock Mluka MithiMalawi (PODCAM) Hanneck MdokaMirriam Namanja

Mauritius Inclusion Mauritius Irène AlessandriMary Margaret Zamudio

Namibia Namibia Association of Children with Pamela Beverly Somses Disabilities (NACD)


AFRICA (continued)


South Africa Fever Publications Sandra AmbroseDisabled Children Action Group (DICAG) and Shellique CarbyDown Syndrome South Africa (DSSA) Vanessa dos Santos

Swaziland Parents of Children with Disability in Swaziland Grace Bhembe

Tanzania Tanzania Association for Mentally Handicapped Abdallah S.Mng'obwa(TAMH) Francis Silihela

Sijali Mogella

Zambia Inclusion Zambia/Zacald James Mungomba

Zimbabwe Zimbabwe Parents of Handicapped Children Casper Boriondo Association (ZPHCA)

Zanzibar Tanzania Zanzibar Associations for People with Ali Haji Mwadini Developmental Disabilities (ZAPDD) Fauzia Mwita

Khalid A. Omar


AMERICA

Country Participants in the Regional Meetings:Mexico, Nicaragua, Guatemala, Panama, Ecuador, Chile, Bolivia, Argentina, Brazil, Paraguay, Canada, USA,Colombia


Argentina Asociación Azul Elena Dal BóSabemos que pueden, Pinamar Incluir Asociación Rosa Liliana AlmironCivil

Bolivia Asociación Rehabilitación Integral en la Carmiña De La CruzComunidad RIC Carolina SolízCEINDES Cecilia LaimeCentro Arnoldo Schwimmer Claudia Valda Fe y Alegría Fabiana Vargas Aywiña Fabiola Acha

Jacha UruJanet Santa CruzMagdalena Cuevas Marcela Morales QuirogaMargoth PeláezOfelia Bustillos Ramiro Iquize – Defensoría del Pueblo

Rocío SuarezRuth Magne

Brazil Pastoral das Pessoas com Deficiência da Ana Rita de PaulaArquidiocese de São Paulo Tuca Munhoz

Canada CACL PLAN TORONTO

Chile FUNDACION DOWN21 Irma Iglesias ZuazolaDown Chile Fundación Complementa Uberlinda Astorga Cardenas

Veronica Brito Bustamante

Colombia Asdown Colombia Betty RoncancioFundown Caribe Brenda HernándezLiga Colombiana de Autismo Claudia RitzelFamilias Down de Cali Graciela IbañezFundación Raudal Marta SepulvedaCreemos Bogotá Martha RoblesFundación Aprendo Barranquilla Mónica Cortés Centro de Educación y Rehabilitación Sandra GalánCreciendo Juntos Barranquilla

Fundación FE Bogotá


AMERICA (continued)


Ecuador FEPAPDEM Ana Lucía Arellano Instituto de Educación Especial Riobamba Carlota Quevedo

Glenda Astudillo Gloria CabreraGloria RiveraJaime LogroñoJohanna AlmeidaLiliana Pelaia de Rudich María Elena Yépez Sandra Borbúa Yanira de la Cadena

El Salvador

Nicaragua Asociación Nicaragüense para la Integración Indiana FonsecaComunitaria, ASNIC María del Socorro Luna López

Rosario García Dávila

Peru Cebe San Martin de Porres Clemencia Vallejo Dina Chuquihuamani Edith Acuña Lucia Fano

USA The Arc Julie Ward Marty Ford Maureen Fitzgerald Suniti Sarah Bal


ASIA PACIFIC

Country Participants in the Regional Meetings: Hong Kong, China, Beijing, Myanmar, Vietnam, Japan, Nepal, New Zealand, Bangladesh, Australia, Cambodia,India


Australia Department of Human Services Melbourne Mark Pattison National Council on intellectual disabilities (NCID) Peta Denham Harvey

Hong Kong Chosen Power People First Hong Kong Emily Wai Ying Fung

India PARIVAAR Navnit Kumar National Trust for welfare of Persons with Autism, Vijay Kant Cerebral Palsy, Mental Retardation & Multiple Disabilities

Japan Inclusion Japan Keiko SodeyamaMasahiro MutoMikako Noguchi

Korea Korea Institute for the Family of the Developmentally Disabled

Myanmar(Burma) Unity Self Advocacy group of Intellectual Kaung Htet Naing disabilities Min Shwe Htet

Salai Vanni Bawi

New Zealand IHC New Zealand Claire Stewart Trish Grant

Vietnam Disability Resource and Development (DRD)


EUROPE

Country Participants in the Regional Meetings: Hungary, Israel, Bulgaria, Croatia, Poland, Austria, Norway, Great Britain and Northern Ireland, Romania, CzechRepublic, Slovenia, Spain, Palestine, Moldova, Ireland, Portugal, France, New Zealand, Finland, Germany


Belgium Marabout asbl Sylvette Norré

Germany Bundesvereinigung Lebenshilfe Ulrich Hellmann

Hungary Hungarian Association for Persons with Eva Graf-Jaksaintellectual disabilities Reka DanoEFOESZ

Israel AKIM Sigal Peretz YahalomiShirley Galor

Netherlands NGO Foundation Perspectief, expertcentre on J.C. Smitsinclusion and self determinationNational Democratic Association Inclusion Netherlands

Portugal FENACERCI Sandra Marques

Russia PERSPEKTIVA Denis Roza

Slovenia SOŽITJE-The Slovenian Association for Persons Katja Vadnalwith intellectual disabilities

Spain FEAPS Azahara BustosFUNDACION CATALANA SINDROME DE DOWN Daniel Paredes(FCSD) Cataluña Katy Trias AFANIAS OCUPATIONAL CENTER Pep Ruf “Furgonetas Blancas”

Sweden Riksförbundet FUB Judith Timoney

Great Britain and MENCAP Ciara EvansNorthern Ireland Maureen Piggot


MENA

Country Participants in the Regional Meetings: Egypt, Qatar, Yemen, Lebanon, Jordan, Kuwait, Arab Emirates, Libya, Bahrain, Iraq, Palestine, Syria, Tunisia.


Bahrain Christine Gordon

Iraq Iraqi Down Syndrome Association Sahira Abed El Latif Moustapha

Jordan Special Olympics Jordan Ali Al Shawahin

Lebanon Fadia Farah

Libya Altahadey Association for Disability Mahmoud Etriki

Palestine West Bank Swedish Organization for Individual Relief IM Dayana Salah Hamda

OTHER ORGANIZATIONS

Organization

Fundación Saldarriaga Concha

Handicap International

International Disability Alliance

Mental Disability Advocacy Centre

Mental Disability Rights International

Open Society Foundation

Mental Health Initiative


Endnotes

Introduction1 Roeher Institute, Disability, Community and Society: Exploring the Links, North York, Ont:

1996

Chapter 11 http://ii.gmalik.com/pdfs/Hear_Our_Voices_with_Covers.pdf2 http://inclusion-international.org.cluster.cwcs.co.uk/wp-content/uploads/Better-

Education-for-All_Global-Report_October-2009.pdf3 http://www.ii-livinginthecommunity.org/ 4 The tools and resources used to collect information as well as reports from each of the

regional forums are available on Inclusion International website http://www.inclusion-international.org/

Chapter 31 http://www.ii-livinginthecommunity.org/

Chapter 51 Letter to Parliament from the minister of Health, Welfare and Sport, 30597, nr 158.2 The Atlas-Global Resources for Persons with intellectual disabilities, 2007, p. 13. 3 The World Report on Disability. 2011. World Health Organization and the World Bank

page 1374 http://cupe.ca/developmental-disabilities/a4e09f6875a5cd5 http://www.lco-cdo.org/disabilities/joffe.pdf6 Kirby-McIntosh, Laura. No, it's not getting better. Sorry. Autism Canada Foundation, 26

October 20107 Mental Disability Advocacy Centre (MDAC) Press Release August,13, 20128 For a complete copy of this report, covering 28 countries, see

http://www.kent.ac.uk/tizard/research/DECL_network/Project_reports.html9 The movie can be seen, with English subtitles at http://inkluzija.hr/eng/publications/

Chapter 81 Inclusion International Strategic Plan


Bibliography

Anderson, L., Larson, S. A., Wuorio, A., & Lakin, C. K., (2011). Still in the shadows withtheir future uncertain. A report on family and individual needs for disability sup-ports (FINDS). Summary of key findings and a call to action. Washington, DC: TheArc of the United States.

Barrows, M., Braddock, G., Durbin-Westby, P. C., Kirk, S., Lakin, C., Milbern, S., Ne’eman,A., Robertson, S. M., Thaler, N., Topper, K., Valnes, B., Ward, N., & Williams, B.(2010). Keeping the promises: Self advocates defining the meaning of commu-nity living. CMS Summit on Community Living.

Canadian Association for Community Living Web Editor. (2012). CACL InstitutionWatch Blog. [Web log comment]. Retrieved from: http://www.cacl.ca/news-sto-ries/blog/spring-2012-edition-institution-watch

Chowdhury, J.(2005). Disability and Chronic Poverty: An empirical study onBangladesh, MPhil Thesis, Oxford University, cited in Marriott, A and K. Gooding,(2007) Social Assistance and Disability in Developing Countries, DFID andSightSavers International, UK.

Gates, S. (2008). The Impact of Deinstitutionalization on the Staff of the Kimberley Centre.Dunedin, NZ: Donald Beasley Institute.

Inclusion International. (2006). Hear Our Voices: A Global Report. Inclusion International:United Kingdom. Retrieved from:http://ii.gmalik.com/pdfs/Hear_Our_Voices_with_Covers.pdf

Inclusion International. (2006). Oigan Nuestras Voces: Un Informe Global. InclusionInternational: United Kingdom. Retrieved from: http://www.inclusion-interna-tional.org/wp-content/uploads/Hear-Our-Voices-Spanish2.pdf

Inclusion International. (2009). Better Education for All: A Global Report: When We’reIncluded Too. Inclusion International, United Kingdom. Retrieved from:http://inclusion-international.org.cluster.cwcs.co.uk/wp-content/uploads/Better-Education-for-All_Global-Report_October-2009.pdf


Inclusion International. (2009). Mejor Educación Para Todos: Un Informe Global: Cuandose nos incluya También. Inclusion International: United Kingdom. Retrieved from:http://www.inclusion-international.org/wp-content/uploads/Mejor-Educacion-para-Todos_Un-Informe-Mundial_Octubre-2009.pdf

Mansell, J., Knapp, M., Beadle-Brown, J., & Beecham, J. (2007). Deinstitutionalizationand Community Living- Outcomes and Costs: Report of a European Study. Volume2: Main Report. Canterbury: Tizard Centre, University of Kent.

Milner, P., (2008). An Examination of the Outcome of the Resettlement of Residents fromthe Kimberley Centre: Version 1.1. Dunedin, NZ: Donald Beasley Institute.

Milner, P., Gates, S., & Mirfin-Veitch, S., (2008). An Examination of the Outcome of theResettlement of Residents from the Kimberley Centre: Short Report. Dunedin, NZ:Donald Beasley Institute.

Mirfin-Veitch, B., Ross, N., & Bray, A., (1998). Templeton Resettlement Family ExperiencesProject: Preliminary Report: Phase One. Dunedin, NZ: Donald Beasley Institute.

Mirfin-Veitch, B., Ross, N., & Bray, A., (1998). Templeton Resettlement Family ExperiencesProject: Progress Report: Phase Two. Dunedin, NZ: Donald Beasley Institute.

Mollett, J., & Campbell, S. (2002). Deinstitutionalization: Issues and Challenges for Peoplewith intellectual disabilities Discharged from Tokanui Hospital Between 1996-1998.Hamilton, N.Z.: Waikato Health Board.

O’Brien, P., (1996). Fast Forwarding the Long Wait Through to a Reel Life, in Fast Forward:People with intellectual disabilities Returning to the Community Conference.Palmerston North; Centennial Convention Centre.

O’Brien, P., & Thesing, A, C., (1999). Living in the Community for People with a LongHistory of Insitutional Care. Aukland, NZ: Auckland College of Education, HealthResearch Council of New Zealand.

Parker, C. (2010). Forgotten Europeans Forgotten Rights: The Human Rights of PersonsPlaced in Institutions. United Nations Human Rights Office of the HighCommissioner.


Parker, C. (2011). A Community for All Checklist: Implementing Article 19 of theConvention on the Rights of People with Disabilities. Open Society Foundations;New York, New York.

Parker, C., & Clements, L. (2012). The European Union and the Right to Community Living:Structural Funds and the European Union’s Obligations Under the Convention onthe Rights of Persons with Disabilities. Mental Health Initiative: Open SocietyPublic Health Programme: Open Society Foundations: NY, NY.

People First of Canada. (2010). The Right Way: A Guide to Closing Institutions andReclaiming a Life in the Community for People with Intellectual Disabilties. CACLJoint Task Force on Deinstitutionalization: Winnipeg, MB.

People First New Zealand, Inc. (Ed.) (2010). A Place of Our Own: Living With the Legacy ofInstitutionalization. Wellington, NZ: People First New Zealand, Inc.

Steward, C., & Mirfin-Veitch, B., (2008). The Impact of Deinstitutionalization on theFamilies of the Kimberley Centre Residents. Dunedin, NZ: Donald Beasley Institute.

Tilly, L. (2011). Final Report by the Money, Friends and Making Ends Meet Research Group.Building Bridges Training. Retrieved from: http://www.ii-livinginthecommuni-ty.org/Money%20Friends%20and%20Making%20Ends%20Meet%20final%20report%2010%2011%20(smaller%20file).pdf

UNESCO. (1994). The Salamanca statement and framework on Special Needs Education.Retrieved from http://unesdoc.unesco.org/images/0009/000984/098427eo.pdf

UNICEF. (2010). At Home or In a Home? Formal Care and Adoption of Children in EasternEurope and Central Asia. UNICEF Regional Office for Central and Eastern Europeand the Commonwealth of the Independent States (CEE/CIS).

United Nations.(1948). The Universal Declaration of Human Rights. Retrieved fromhttp://www.un.org/en/documents/udhr/index.shtml

United Nations. Millennium Development Goals Retrieved fromhttp://www.un.org/millenniumgoals/

United Nations General Assembly, (2006). U.N. Convention on the Rights of Persons withDisabilities and Optional Protocol. Retrieved from http://www.un.org/disabili-ties/convention/conventionfull.shtml

Walsh, J., & Becker, W., (2010). Extraordinary Journeys: 12Extraordinary People Retrace Their Journeys fromInstitute Care to Supported Community Living....Aukland, NZ: Spectrum Care Trust Board.

Wolfensberger, W. (1972) The Principle of Normalization inHuman Services. Toronto: NIMR.

World Health Organization. (2007). Atlas: Global Resourcesfor Persons with Intellectual Disabilties. World HealthOrganization; Geneva, Switzerland.

World Health Organization. (2011). 2011 World Report onDisability. World Health Organization and WorldBank. Geneva, Switzerland: WHO Press.


Inclusion InternationalUniversity of East LondonDocklands Campus, 4-6 University Way KD.2.03LondonE16 2RD, United KingdomTel: 44 208 223 7709Fax: 44 208 223 6081E-mail: [email protected]: www.inclusion-international.orgPrinted in Canada

Inclusive Communities = Stronger Communities - 立法會

Documents

Transcript of Inclusive Communities = Stronger Communities - 立法會