Work for social change...
People with disabilities and
their families are on the short end of social power. Remedying
this means more than just increasing participation in service
planning or service delivery. To get to the root of the problem we
have to increase the political power and cultural standing of
people with disabilities. Any responses that simply focuses inside
the service system will be incomplete, no matter how desirable it
may otherwise be.
The key theme is keeping people together.
Disabled and able together in all life experiences from preschool on
up, in work, in recreation, and in all of community life. Making
this happen takes caring coaches for both able and disabled
people.
We need to make it clear that powerlessness
equals abuse. That information, plus support from someone who
cares, plus access to effective methods of recourse are the
minimums necessary to safety for people with little power and
control.
Personal relationships are an essential part
of any system to discover and act on abuse and neglect. People
need others to confide in, others to see what's happening for
them.
We need to encourage everyone--starting with
ourselves--to inventory our own abilities and disabilities so that
we know what we all have to give and so we can start working on
ways that each of us are weak in living well with other people.
We are talking about increasing symbiosis
among people. We need to talk more about humankind and less about
people with disabilities as a "special" kind of human.
We need to find more ways to link the
interests of people with disabilities to other community members;
for example, through the development of cooperative housing
associations.
We lack a technology for changing attitudes.
And some of us think a formula can't ever be found for the kind of
change that's needed. But we can set the stage for attitudes to
change. We can be sure that people have role models of people with
disabilities whose lives are successful.
Support the contribution of families &
friends...
Many people would be sunk without the support
and advocacy of their family and friends.
We have to think carefully and face some hard
facts about family life and committed relationships.
Vouchers for family support and (early)
education services could increase access to integrated
settings.
Many families need opportunities to plan
seriously about, "What happens when we no longer can provide what
our disabled son or daughter needs?"
We need to develop better ways to get
information to families in ways that make sense.
Families need to know from their child's
earliest years how important it is for disabled and nondisabled
children to learn with and from each other.
Support the contributions of
service workers...
Service workers (and
regulators) need methods for "role release": ways to give up some
control in favor of people with disabilities and their
families.
Service workers can gain in ability to "walk
in people's shoes"; to look at decisions from the point of view of
people with disabilities and to appreciate the life experiences
that have influenced many people with disabilities.
Service workers need to clarify and change
their own possible contributions to disempowering people through
everyday practices and routines.
Service workers need to practice hearing what
people with disabilities have to say.
Building personal relationships between
service workers, family members, and people with disabilities is
important.
It takes a lot of common sense to deal with
people in a way that keeps them safe. Education and credentials
don't necessarily mean empathy for people.
Service workers need opportunities to reflect
their work and their commitments to people with disabilities in
small, soul-searching events.
Service workers need to reflect on the kinds
of educational experiences and back-ups that will help people with
disabilities make good decisions in risky situations.
Work on services system issues...
Lots of people need at least some help from
services. But as people with disabilities represent increasing
cash value to service providers and service system operators, the
incentives grow to find things wrong with people and to keep people
dependent. Under these conditions services necessarily must push
people with disabilities away from community association. We need
to find counterforces to this threat.
Some people have nobody to count on except a
busy case manager, who has too many people and too much
paperwork.
High turnover among direct service staff makes
it very hard for staff to know a person well enough to make good
judgments about acceptable risks.
The contradictions between how services are
funded and regulated and people's sense of what is right creates a
problem. The stronger staff commitment to positive rules and
experiences for people, the more likely a conflict with rules and
funding patterns. This increases staff frustration which could
lead them to quit or withdraw from their work. We need to
experiment with alternative ways to monitor and regulate
services.
It's important for writers and enforcers of
regulations to see the real effects of their work on what we value
in people's lives.
We need to create windows of opportunity to
maintain contact and respectful discussion between people concerned
with administration, people concerned with advocacy, and people who
are lifesharing. Our discussion shows that each way needs the
other; each can contribute to mutual education. All must learn to
focus on social and cultural change. It's easy to divide
ourselves; we have to work at coming together.
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