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SPRING 2012

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

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Living and Being Included

in the Community:
Everyone has the Right

Choice
Support
Community Inclusion
Tell us Your Views on Living
and Being Included in the
Community
How Inclusion International
Advances Living and Being
Included in the Community
Inclusion Internationals
position on Living and
Being Included in the
Community
Achieving Inclusion Across
the Globe II and the ARCs
Global Forum

editorial

elcome to the first

newsletter in a series which
Inclusion International (II)
will publish on the four key priority
areas which our members have
identified. This first edition focuses
on living and being included in the
community.
Over the last two years we have
been talking to families and selfadvocates across the Globe asking
them what being included in the
community means to them, what
they need to be included and why
they have been excluded.
As a part of IIs Global Campaign
to raise awareness of the right to be
included in the community, we have
learned about both the successes
and challenges which people with
intellectual disabilities, their families
and their communities face in
achieving inclusion. These findings
will be documented in our Global
Report on Living and Being Included
in the Community that will launch in
October 2012 at our Global Forum,
Achieving Inclusion Across the Globe,

in Washington, D.C.
For many people with
intellectual disabilities, living and
being included in the community is
not possible without supports to
their families. In addition to the
supports required by the individual,
families need a range of supports to
enable their sons and daughters to
live meaningful and inclusive lives in
the community.
During the negotiations of the
UN Convention on the Rights of
People with Disabilities II argued
strongly that the right to live and be
included in the community was a
fundamental issue for people with
intellectual disabilities and their
families. Article 19 was intentionally
crafted to recognize that living and
being included in the community
requires:
1. That a person has choice about
where and with whom they live.
2. That individuals and families
have the supports which they
need to live in the community.
3. That communities (education
systems, health systems,
recreation, transportation etc.)
organize themselves in inclusive
ways.
Taken together, these elements
describe a comprehensive picture of
the world which we aim to create.
What we have heard from SelfAdvocates, families and communities
is that living and being included in
the community is about: ChoICe,
Support and CommunIty
InCluSIon.

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Inclusion is a right
What do we want? The same things as people without
disabilities. We want employment, our own house, to
get married and have children. What can you do? Make
sure we go to school. Help us build self-advocacy.
self-advocate, Zambia

nclusion Internationals roots

are in the voices of families who
rejected the notion that their son
or daughter didnt belong in
community because of their
disability. Living and being
included in the community is
about fostering that sense of
belonging and supporting
persons with intellectual
disabilities to build meaningful
reciprocal relationships in their
community. At our core are
families advocating for their sons
and daughters to be part of their
communities because they know
its the right thing. Being
included has lifelong positive

II supports the following

definition of an institution:
An institution is any place in
which people who have been
labelled as having an
intellectual disability are
isolated, segregated and/or
congregated. An institution
is any place in which people
do not have, or are not
allowed to exercise control
over their lives and day to day
decisions. An institution is not
defined merely by its size.

benefits. People who experience

high inclusion are happier and
healthier; they have natural
relationships and supports; they
are more likely to be employed
and less likely to live in poverty.
Now, not only do we know that
its the right thing; its also a
human right.
When the United Nations
General Assembly adopted the
UN Convention on the Rights of
Persons with Disabilities, for the
first time in international law,
people with disabilities were
guaranteed the right to live and
be included in the community.
This means that living and being
included in the community is not
subject to proving ones ability,
eligibility or entitlement. It
means that people with
disabilities have the same right as
people without disabilities to live
in the community with the
supports they need.
It also recognizes that
ChoICe, Support and
CommunIty InCluSIon need
to be in place to make this right
meaningful. Article 19 is not just
about closing institutions or the
physical location of a house. It is
not just a lofty goal. It realizes
that without choice, support and
community inclusion people with

CRPD Article 19
States Parties to this Convention
recognize the equal right of all
persons with disabilities to live in
the community, with choices equal
to others, and shall take effective
and appropriate measures to
facilitate full enjoyment by persons
with disabilities of this right and
their full inclusion and participation
in the community, including by
ensuring that:
a) Persons with disabilities have
the opportunity to choose their
place of residence and where
and with whom they live on an
equal basis with others and are
not obliged to live in a
particular living arrangement;
b) Persons with disabilities have
access to a range of in-home,
residential and other community
support services, including
personal assistance necessary
to support living and inclusion
in the community, and to
prevent isolation or segregation
from the community;
c) Community services and
facilities for the general
population are available on an
equal basis to persons with
disabilities and are responsive
to their needs.

disabilities can be just as isolated

in communities as they are in
institutions. It places an
obligation on governments and
communities to respect what
families and self advocates have
been telling us all along: we want
to belong; we want to be
respected; we want to live a
typical life.
The CRPD, in particular Article
19, provides families, selfadvocates and disability
organizations with a framework
and a tool to ensure that people
are able to live and be included in
the community.

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

Choice
L

iving and being included in

the community requires that a
person can choose where and
with whom they live. This means
having a voice and control in your
own life. For some this may mean
living alone or with friends; for
others this may mean living with
family. Choice is about having
true options being able to
decide where and how you want
to live instead of choosing from a
predetermined menu of options
about a placement or having no
options at all.
Being able to make decisions
in our lives is about having
options and opportunities and
knowing what is possible. To be
able to make a choice about
living and being included in the
community a person needs:
To be empowered to make
decisions about their life and
what they want.
A positive vision about
where they would like to live
and what they would like to
do.
To understand what a
decision process means and
how it is achieved.
A voice that is heard and
acknowledge by others.
Diverse options that
complement their vision.
Supports to make their
decision a reality.
Innovative and creative
opportunities to be included
in community.
Some people may make these
decisions independently. Some

may need support to understand

what their choices are and what
the outcomes of their decisions
will be. Some may need support
to articulate their decisions and to
make their voices understood by
others. Regardless of the
supports required for someone to
make decisions in their lives, it is
still up to them to decide.
What families and selfadvocates say about choice:
I get to live my life the way I
want to, make my own choices,
have dinner when I want to have
dinner, go out and come in when
ever I want! I love it!
self-advocate, UK
Ive been going out with my
boyfriend for one year and a half. I
would like to marry him and have
my own apartment. In this moment
I participate in a project of the
Foundation to share an apartment
with some mates.
self-advocate, Croatia
I just turned 20 years old and in
Japan you become an adult when
you become 20. I live with my
family; my parents, grandparents,
younger brother and younger sister.
I like where I live. I love my family
and my family loves me When I
am ready, I hope I can live in a
group housing shceme under
instructor's supervision like other
member of the Studio. Now, I am
happy working in the Studio and
living at home.
self-advocate, Japan

Busting Out
(a poem by Daniel Beimers)

Walls slowly growing closer,

the room growing smaller,
restraining, isolating, its cold,
its impersonal, forced medication,
restrictions, a group mentality.
But thats the old way,
inclusion, freedom, living level
headed,
having friends,
being an individual,
a say in what we do and when to
do it (within reason).

Article 19 means having

equal Choice.
This means that people with
disabilities should:
have the same
opportunity to choose
where they live
have the same
opportunity to choose
who they live with
not be forced to live in
a particular living
arrangement

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Support
L

iving and being include in

the community means that
individuals and families have the
supports which they need to live
in the community this means
in-home disability-specific
supports and assistance but also
the supports needed to be part
of your community to go to
school; to get a job; to take part
in community recreation; to
have fun.

Article 19 means access to

support and services.
This means that people with
disabilities and families
should have access to:
Support services within
their homes
Support services within
their communities
the personal assistance
needed to help them to
live and be included in
their communities
Supports and services
that will prevent
isolation and
segregation
Supports to fulfill their
dreams and visions
respite
planning and
information supports
Income and benefits

Supports for persons with

intellectual disabilities mean...
People with intellectual
disabilities require a range of
dierent supports to enable them to
participate and be included in their
community. It is supports that
making living and being included in
the community meaningful. It is the
dierence between being there and
being part of something.
These supports include services
such as:
Personal assistance
Financial support
Help managing household
responsibilities (rent, groceries,
meal preparation)
In-home support and
adaptations
Support to make decisions
Accessible transportation
Supports for families mean...
Supports and services for families
should never take the place of
supports and services to individuals.
Yet, families supporting a family
member with disability particularly
in the younger years but, in many
cases, as adults as well will need
direct support. These supports
could include:
Knowledge and skill
development
Financial support for disabilityrelated costs
Employment security and
income support
Supports for planning
Inclusive childcare
Respite services

What families and selfadvocates say about

SupportS
"Once we needed some
psychological help. And the
psychologist told me: "Look at
yourself. You need to go to
work, the sooner the better".
But I couldn't.
How could I put aside my
child? Her problems were all
over me. But later I realized
that my life is one thing, but
there is another life passing by
me.
I arranged with my
mother about taking care of
my daughter and returned to
work. Everything changed
first of all my self-perception,
that I'm still worth something,
that I'm not any worse than
the others. It's very important
to return to the society, then
you can get your child there
with you.
You'll say what if the
grandmother hadn't agreed.
But we organized our life in
such a way that we all work,
it's possible, of course not fulltime, but anyway everybody is
satisfied and it helps our
daughter. It doesn't matter if it
is a single-parent or twoparent family, but if you have
inner strength, strong desire
for changes, you'll find
options, you should try..."
parent from Russia

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

Community Inclusion
L

iving and being included in

the community means that
communities (education systems,
health systems, recreation,
transportation etc.) organize
themselves in inclusive ways to
ensure that persons with
disabilities have equal access to
and benefit from community
services and facilities.
Families, self-advocates and II
partners have defined
Community as a place where
you belong; a place where family,
friends and neighbours enjoy life
together; where people support
one another. Living and being
included in the community
means having friends and living a
typical life; it means being
respected. Being included in
community life school,
recreation etc also strengthens
social relations and networks.
Families often tell us the best
support for them is ensuring their
sons and daughters with
disabilities have access to the
same things as their sons and
daughters without disabilities.
Having their children with
disabilities attend school,
participate in after-school
activities, have a job, have friends
are necessary for enabling a
family to live a typical life. When
these are not in place families are
at risk for financial insecurity,
unemployment and high levels of
stress and marital breakdown.
Community inclusion means
governments and societies need

to re-think the way our education

systems, health care systems,
employment sector,
transportation etc are organized.
They need to be organized in
inclusive ways. Community
inclusion is about making systems
better for everyone.
What families and selfadvocates say about
CommunIty InCluSIon
It is dicult to access health
services from isolated communities
because bus drivers and taxi drivers
wont stop to take us
parent, Nicaragua
"It helped a lot to take him to
school where he learnt a lot. When
it was time to transfer him to the
special unit at his school, I asked
him if I should take him there. He
replied, dont take me there. So, the
teachers left him to continue
learning in the regular classroom.
He felt very happy though he could
neither read nor write. He had a
leadership role in the students
committee. He was well liked and
respected by his peers."
parent, Zanzibar
I have many friends. With my
friends from junior and senior hight
schools, I go to Karaoke, go to
festivals or go to restaurants... Last
month, when I celebrated Comingof- Age, I wore formal KIMONO. All
my family, my neighbors, and friends
joined to celebrate. I was very happy.
self-advocate, Japan

"After getting education

disabled people should have the
opportunity to work, the
government should provide them
with jobs. There should be laws
which oblige employers to hire
such people and to take them
under the wing. But in our country
everything stops at the phase of
education. After that, the children
have to stay at home, they don't
have anywhere to work."
parent, Russia

Article 19 means having

access to generic services
and facilities in the
community.
Access to generic services and
facilities in the community
helps facilitate community
inclusion. This means that
people with disabilities
should be able to:
use community services
that are available to
everyone.
use community facilities
that are available to
everyone.
these services include:
healthcare; education;
employment;
transportation; housing

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wo years ago, Inclusion

International launched a
global campaign on Article 19.
The purpose of the Article 19
Campaign is to hear from families
and self-advocates about what
living and being included in the
community means to them. We want to know the
challenges and opportunities for making the Article
19 a reality and understand the policy and practical
implications of fulfilling the promises of Article 19.
the Article 19 Campaign will result in a global
report on living and being included in the
community to be released in october 2012 at
our Global Forum, Acheiving Inclusion Across the
Globe.
the Article 19 Campaign Goals Are to:
promote awareness of the isolation,
segregation, confinement and vulnerability
faced by people who have an intellectual
disability who are excluded from their
communities whether in institutions or in
institutionalized living conditions;
Share experiences and build understanding
of the essential elements of community
inclusion and community living; and
Share strategies for national and international

initiatives that move people from

institutionalized living to community
inclusion.
tell us your views
II wants to hear from you! We are always
collecting stories and information about what
living and being included in the community
means to you. These stories are posted on our
website and may be used in reports,
presentations, and/or information flyers. Your
stories raise awareness about the lived
experience of intellectual disability and
document the successes, challenges and
innovative solutions that are happening
around the world. II invites you to share your
story. We are seeking pictures, videos, and
written submissions. Submit your stories to:
info@inclusion-international.org
Visit our Global Campaign website to learn
more and to find additional resources:
www.ii-livinginthecommunity.org

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

A Community for All: Implementing Article 19 open Society Foundations Issues Guide and Checklist
on Article 19
The Community for All guide and checklist oers a detailed look at the rights identified in the UN
Convention on the Rights of Persons with Disabilities (CRPD), especially Article 19 of the CRPD which
provides for the right to live independently and be included in the community. The guide and checklist are
intended to help advocates and program implementers identify the obligations on States to realize these
rights. Community for All promotes the right of all people with disabilities to live and participate in the
community as equal citizens, particularly in countries in which people with disabilities continue to be
segregated in institutions. For more information and to download the guide and the check list visit:
http://www.soros.org/initiatives/health/focus/mhi/articles_publications/publications/community-for-all-20111202.

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

What II and its Partners are Doing

II CAt member supporting
country level initiatives on
Article 19
teve Eidelman, an Article 19
CAT member and a globally
recognized expert on
deinstitutionalization from the
United States, is working in
partnership with II to support
country level initiatives on living
and being included in the
community in Colombia, Israel
and Kenya. Steves work in these
countries and elsewhere will
contribute to Inclusion
Internationals Global Campaign
on Article 19. Steve has started a
blog to share information about
his work on Article 19. Check out
his reflections on his blog:

www.crpdnineteen.blogspot.com.

Convention Action teams

Inclusion International has
built expert teams called
Convention Action Teams (CATs).
CATs are comprised of individuals
and organizations from across the
globe working in key policy areas
around the world. CATs provide
technical expertise and advice to
national groups, upon request,
working on implementation of
the CRPD. The goal of the CATs is
to strengthen the capacity of
family based organizations and
self-advocates to use the CRPD as
a tool to leverage change and for
addressing and challenging the
discrimination and human rights
violations faced by people with
intellectual disabilities and their
families.

Inclusion International
Convention Action team on
Article 19
The CAT on living in the
community will work with
Inclusion Internationals member
organizations to support the
development of strategies to
close or prevent the construction
or renovation of institutions and
to build inclusive communities.
The eorts include:
Support and training for selfadvocates and families about
the right to live in the
community;
Assessment of the
communitys capacity to
support and include people
with intellectual disabilities
and development of plans to
increase that capacity;

Review of policy, programmes

and financing provisions that
perpetuate
institutionalization;
Development of strategies to
encourage governments and
service delivery agencies to
shift from institutional to
community support systems;
Development of plans to close
existing institutions and build
supports in the community.
Provision of on-the-ground
technical assistance and
expertise to members and
partners.
For more information on the
CAT on Living and Being Included
in the Community visit our
website or contact:
info@inclusion-international.org.

Inclusion International
position
... Inclusion International demands the right of all people
with intellectual disabilities to decide where and with whom
they live and to receive the supports they require in the
community. Specifically promoting:
That persons with disabilities have the opportunity to choose
a place of residence and where and with whom they live on an
equal basis with others and are not obliged to live in a
particular living arrangement.
That people with disabilities must be supported by a range of
support and community services.
The closure of segregating residential institutions
That no further investments are made into the renovation of
existing institutions or building of new segregating residential
institutions...
Approved by the General Assembly of II in June 2012

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Achieving Inclusion Across the Globe: a Global Forum

Washington DC, october 25 28, 2012

nclusion International, in
partnership with the ARC of the
United States, will host a Global
Forum, Achieving Inclusion Across
the Globe, in Washington D.C. 25
28 October 2012. The forum will
bring together families, selfadvocates, professional and
partners from around the world
to discuss inclusion and key issues
facing people with intellectual
disabilities and their families.
Article 19 of the UN
Convention on the Rights of
Persons with Disabilities secures,
for the first time in international
law, a right to live in the
community. The Forum will
explore what Article 19 means to
families and people with
intellectual disabilities and what
obligations it creates for
governments and others.
Inclusion International will launch
its Global Report on Living and

Being Included in the Community

the result of a two-year
campaign on Article 19.
Achieving Inclusion Across the
Globe will have information
sessions and dynamic discussion
on issues related to: employment,
supporting families, achieving
inclusive education, ensuring
people with intellectual
disabilities are supported to make
their own decisions and what it
means to live and be included in
the community.
Participants will hear from
people with intellectual
disabilities and families about the
lived experience of living in the
community. The Forum will
profile innovative and progressive
policies and eorts to make living
and being included in the
community a meaningful reality
for all people with intellectual
disabilities.

Join us in Washington to talk about

CHOICE, SUPPORT and INCLUSION

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