Global-Report-Living-Colour-dr2-2

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Inclusive Communities = Stronger Communities
GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY
Self-advocates said:
IN BARCELONA ...
• We know what we want and how
we want to live. We need the
opportunity to express it and support
to get there.
• Few of us will choose an institution
as a place to live. Support needs
cannot override our wishes and
wants of one's own life.
• We have the ability to assume the
responsibilities of independent living,
with adequate supports.
• The environments where we live give
little credit to our desires and ability
to manage an independent life and
is a major obstacle.
While the Universal Declaration of Human Rights
recognizes the family as the “natural and fundamental
group unit of society”, their role is even more critical in the
lives of persons who have an intellectual disabilities. The
very nature of intellectual disabilities, difficulty in learning,
in remembering, in problem-solving and often in
communicating, means that people who have an
intellectual disabilities usually require some degree of
lifelong support. As we heard from our members, most of
this support comes from family members. A mother in
Bolivia told us, “Most of my time is spent helping my
daughter with everything she needs.” Or as one mother in
Russia told us, “It’s a shame that a mother’s life stops after
the birth of such child”. We think it should not be a shame
or an undue burden.
While most children without disabilities gradually require
less and less support from their families as they grow up,
and people with physical or sensory disabilities also start
to develop more and more independence and less reliance
on family, research has shown that after age 10, children
with intellectual disabilities start to require
disproportionately more support because:
• The family member does not go to school or work
and requires someone at home caring for him or her;
• The family member can’t be left alone when parents
and others go to work or to social occasions;
• Parents need to devote time to finding supports and
services, attending doctors’ appointments, etc.;
• The family member requires assistance with daily life
activities – feeding, bathing, toileting, etc.;
• The family member needs help to find and keep a job.
The nature of intellectual disabilities means that a person
with an intellectual disabilities will usually require some
form of lifelong support, and the responsibility for
providing that support usually falls to families. The CRPD
calls on families to “contribute towards the full and equal