OPTIONS FOR ACTION

by John O'Brien and Connie Lyle O'Brien

To Make Children Safer

More Powerful Families

We need to keep focus on strengthening and informing families with children with developmental disabilities. A child's parent or parents are the key to safety. Grandparents, aunts and uncles matter too. So do brothers and sisters.

Purple Arrow When children live away from their families, it is important to make sure that families are welcomed, involved and listened to. If a child lives away from a family and has no family involvement, it's vital that that child have substitute family members.

Reduced Isolation

We need to work on ways to reduce family isolation and children's isolation. Nondisabled school mates and university students have made a big difference for some of our families. We need more ways to increase the chances that each child with a developmental disability will get a chance to meet "the other people" who can give the gifts of acceptance and participation.

Purple Arrow We need to strengthen the sense of expectation that all children will be involved with their age peers in school and in recreation. Nondisabled children need to come to expect the presence of children with disabilities. This begins to overcome isolation and reduce the chances of abuse.

Purple Arrow We need clearer, more detailed ideas about how to get the resources we all rely on to be involved with children with developmental disabilities without smothering them. We need good schooling without all containing special education; we need recreation without isolated special olympics.

More Effective Services

How do we encourage the development and employment of more teachers who have the desire, the ability, and the assignment to facilitate the development of relationships between disabled and nondisabled students?

Purple Arrow We need to increase the range of alternatives available. People with disabilities are more vulnerable when they are uncooperative. They are more uncooperative when they are trapped in a situation that doesn't work for them. Most of the time there is only one situation possible. This increases the changes of a person getting trapped.

To Make Adults Safer

There needs to be clear avenues of recourse for people in every program, no matter what its type. We need to insure that someone who is in a dangerous situation has a way to let someone outside the setting know if there is a problem.

Purple Arrow We have to work systematically on the essential issue: changing attitudes and expectations about the place of people with developmental disabilities in their lives, in our communities, and in society. The essential work begins with our own personal relationships with people with developmental disabilities and our own active involvement with our fellow citizens in the life of our own communities.

Purple Arrow This kind of social change moves slowly, from person to persons in social networks. This means keeping a long- term perspective on our policies and investments. People with developmental disabilities will be safer as more other citizens become personally involved with them.

Purple Arrow We need to continue learning about what it takes to build and strengthen personal relationships and social involvements for those people with developmental disabilities who would otherwise be isolated.

The best way to learn about this is through investments in local people's efforts.
We should support a variety of efforts to be sure that communities have people who will be there to ask for and support personal involvements.
At this body of evidence grows from projects focused on assisting people to become part of community life, we need to invest in communicating their lessons and sharing their tools.

Purple Arrow We need to help systems explore more ways to put power, money, rule making, and monitoring in the hands of people with developmental disabilities and those people closest to them.

The system we have now generates increasingly detailed rules within a system that institutionalizes major inequalities and disempowers people. We need to experiment with major changes in these systematic ways of keeping people unequal and without the resources to stand up for themselves.
Just offering more of what we have now can't work to give the people the power they need to be safer. But demand on the system-- from people who have little or no help now or from advocates for people who are especially and obviously hurt by the worst of current services--means big pressure for more. We need to focus influence and money on efforts to create windows for action to make the system different.
There is much to learn about alternative ways to help people with developmental disabilities and the people closest to them to see, understand, and respond to the real risks in people's lives.

We need to face and explore the possibility that our social systems, including our service systems, are collapsing. Many people have not considered this possibility and some people who have think it unlikely. But a number of thoughtful people believe this is already happening, though they may not see the same causes or predict the same consequences. We need to find ways to assess this possibility (some would say, certainty) and help people explore the role of citizens in a collapsing situations.

Minimizing the Costs of Regulation

Understanding and achieving a balance of risk and safety is complex.

Risk can come from strangers or outsiders, but it can also come from people you know and rely on such as service staff or family members. It would be easier to deal with this issue if all risk came from "outsider" or if we could be confident that family and friends or professionals very seldom pose a significant risk.
There is a theory that people are safer in community settings, which are more open, than in institutional settings, which are more closed. But what does "openness" mean? Does "openness" mean having lots of government inspectors visiting? How can a place be "open" and still be private? Does "openness" mean that a person has lots of friends visiting? If so, just locating people in small houses doesn't automatically mean they are in an open environment.
Regulation can contribute to people's safety by insuring that sufficient authority is available to deal with bad situations. But regulation can make balance hard to achieve. It's very hard to develop regulations that are both powerful enough to rescue people from abuse and subtle enough to support people striving for balance.
The idea of "the dignity of risk" is a valuable corrective to the tendency to overprotect and overregulate. But it doesn't provide much guidance for knowing when to choose for safety.

Purple Arrow We need to do some thinking to place this issue in the context of larger social trends. Over the long term, demand on human service systems will make strong demands for new ways to organize and manage. Formal systems will get more fragile and more erratic.

Purple Arrow We need to ask what we can do to shape an environment that promotes the development of alternatives to widening the existing regulatory system.

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