The future terrifies parents of mentally disabled children and adults. What they long for their children—a place where they might live as a family would, after the parents are gone—remains almost unknown. A handful of such initiatives exist, but their doors are closed; there are no places left.
It is hard to imagine solutions, harder still to invent them. This is true whether the disability is severe (total dependence on others) or milder (capable in some ways, yet unable to live alone).
Parents who want to secure a home for their child "after we're gone" live with a thousand questions:
- Who will their child live with, and where?
- Who can love and help them as we do? Who will shield them from so many dangers?
- Who will understand the suffering they struggle to express?
- How will they survive the move away from home, from the familiar room and objects and faces they have known all their lives?
- Who will stand beside them and help them live without our support, without our unconditional love?
These questions have no certain answers. Most parents wait in anguish, postponing and denying the problem, pushing it away—defending themselves from the dread that occupies their nights.
They speak of it to others. They complain under the weight of this unknowable future. And still they live each day, unable to find solutions.
Some have knocked on the doors of the powerful, the officials, those who might have power to help.
No answers come. These fears seem not to matter. Even those who appear interested only thicken the wall, defending themselves behind slogans: "It costs too much money!" "We need proper facilities!" "We need trained, motivated staff!" Words, all of it—empty words.
Ombre e Luci hears this problem daily. It rings through our phones—a tired mother calling from the north, a desperate sister from the south. It echoes in our hearts.
We have collected names and addresses of places we have visited or learned of. We have conducted interviews, taken urgent calls. All of this has made one thing clear: we cannot wait any longer.
The crisis deepens:
- There are no places in institutions, whether for the severely or mildly disabled;
- The few group homes and family houses that exist, designed to be small, have filled their places quickly;
- Parents grow older, more tired, less able to organize themselves, to trust, to act together;
- The disabled young people, now adults, begin to sense the problem. They absorb their parents' fear. The result is sometimes regression, withdrawal, forms of autism or unexplained aggression—new behaviors, unknown to those who have always cared for them.
The need for a place where a child unable to live alone can make a home is a real one, hard and difficult to create—but it is a legitimate need that demands an urgent solution.
What can we do? How can we help?
In this issue, we offer what help we can, though we know it is limited.
We have set ourselves modest goals, at least to begin. We offer a contribution that will not, we know, satisfy parents seeking immediate answers.
Here we have tried to take stock of the situation, to answer some questions we have been asked repeatedly, to offer some suggestions and direction, to provide practical advice, and to present examples of family homes and group homes that exist or are being formed. We also list the associations and foundations working on this problem, and excerpts from the proposed national disability law (not yet approved) and the volunteer law, which show at least some legislative interest at the state level.
For now, we can only offer you this work, hoping it will help someone—if nothing else, to begin preparing the ground.
– Mariangela Bertolini, 1991