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Listening
to the Person: How do we ensure that the
real wishes and values of adults with complex disabilities are
respected? Adults
with Autism may communicate in ways that others do not easily
understand, so
others may stop “listening” and may doubt their intelligence. While we
may
speak up for self-determination and want to respect the tastes and
preferences
of each person with a disability, in practice or by default we tend to
err on
the side of safety and protection. How do we protect our loved ones
from danger,
but also give them room to grow and express their individuality? This
is a hard
question. Parents may seem over-protective, offering very few choices.
Some
supporters may be so keen on choice that they would remove all
safeguards, so
that a vulnerable person may be open to exploitation. One way to both
keep
people safe and respect their choices is through a Supported
Decision-Making
Agreement...... Supported Decision-making
Agreements are recommended to ensure that adults with complex
challenges such
as Autism become “the authors of their own lives.” These
agreements should be set up while
parents are still alive to support the process. Institutional and legal
alternatives (such as funding for programs and services; regulations
and
policy; and legal guardianship) all have great weaknesses and are based
on
false assumptions. Excerpts from
introduction to chapter in CREATING A
HOME AND GOOD
LIFE OF MY OWN: Strategies and formal agreements developed
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