In Rome, four parents of children with severe physical and intellectual disabilities—young people who had been part of the «S. Francesco» community of Fede e Luce for years—decided to act while they still could. They wanted to secure a peaceful future for their sons and daughters. So they began, gradually, to establish a group home. Here, briefly, are the reasons that drove them to this decision, how they've proceeded, and what obstacles they've met along the way.
But why start now, when the children (ages nineteen to twenty-eight) are doing fine at home?
Every parent, they answer, helps their children launch into independence according to what they can afford—buying furniture, helping them buy a house, financing a workshop, a business, professional training. We believe this should apply equally, and perhaps even more so, to children who have a handicap. Yet many parents we know say: we'll leave them an apartment, maybe two, government bonds, money in the bank. The real problem our children will face is not money. It's this: who will they live with? Who will take care of them? How will they adapt to life without us?
We wrestled with these questions for a long time. The first step was hardest: we had to overcome the guilt of taking our children away from homes where they were safe and settled.
One of us owned a house in Lavinio, a seaside town about fifty kilometers from Rome. On weekends, we could test out this new arrangement—the five young people together, three boys and two girls (one family later withdrew, unable to bear the cost).
Two things turned out to be essential. First: someone the young people already knew well, someone we trusted completely, who could serve as both a practical and emotional anchor—for us and for the children, who suffered what felt like abandonment. Second: we needed local staff who could help the young people truly belong in the town.
Through a nun in Lavinio we already knew, we found a psychologist who proved invaluable. He meets regularly with all the staff to shape the program. On weekends, there's always a core caregiver present—someone who also drives the van that takes the young people everywhere. During the day, other staff rotate in, each with specific skills (teachers for different practical activities). Gradually, the young people became part of the town. People know them. They can go out briefly on their own to do errands. They attend the parish. They've had short work experiences in a tailor shop, a fruit market, a mechanic's garage. We've made arrangements with the swimming pool and a trattoria, where they're welcomed warmly and given good meals at a low price. The young people have taken two vacations together—one of four days, one of eight. We've been doing this for more than a year now.
At first, the young people didn't want to go. Now they insist on it. They've developed a real spirit of solidarity—they support each other, help with practical tasks, protect one another. For us, this has been the most important result, and we believe it will let them feel they truly belong to a family.
Getting Official Recognition
Our goal is to move gradually toward five weekdays in the group home and weekends with us—or later, with their siblings and friends, when we're gone.
To prepare for this, the young people have learned to do all the normal household tasks: cooking, washing up, shopping, and so on.
The total cost so far is five million lire a month, everything included. That's steep, but would be lower if split among several families. In our view—and also according to regulations here—a group home should have four to seven residents. For the life and activities to work, the young people must be compatible physically and in temperament. What we've done wouldn't have been possible with someone who had no physical autonomy at all.
In the meantime, we've begun the long process of seeking official recognition and public funding.
The first step was to form a proper association—Associazione Socio Culturale «Ancora»—with bylaws and members (us parents, our other children, friends). The bylaws protect our right to choose the staff and set criteria for admitting other young people based on compatibility and complementarity. We then applied to Rome's Department of Social Services for either grants or a formal agreement. An agreement takes longer to secure; it requires more references and technical reports, and it gives the public agency the right to monitor us and apply its own—sometimes complicated and costly—criteria. But it lasts. Once the group home is established, services from the city will be joined by healthcare coverage from the region.
The association is nonprofit. It aims to promote rehabilitation and community integration, to challenge the idea that disabled people belong in institutions, and to share what we've learned with anyone interested.
The Future of Our Children
We know that in the future our children will grieve when caregivers they've grown close to move on, and when their primary contact—the one person with the most stable bond to the «family», chosen for affection as much as competence—eventually leaves. But we believe they'll find strength to weather these hard moments through the bonds of help and friendship they've built with each other.
What we've concluded is this: it's better to spend money now, while the young people are still young, to create the right environment for them than to leave them an inheritance; it's better to pool resources from several families than to go it alone; it's better to move forward and then seek public support than to wait for institutions to act.
At the start, we were afraid of everything. But we've found that many things have worked out better than we feared.
And the Caregivers?
Yes, there's an essential chapter missing from these reflections on group homes. We've offered practical advice. We've talked about attitudes and laws. We've given examples. But we've barely touched on the people called «caregivers» or «volunteers» or by other names. They are the PEOPLE who will accompany our children, who will live with them, and who are the cornerstone of any real plan for their future. Who are they? What kind of people do we want them to be? What draws them to this work? Is it just a job like any other? How have they prepared themselves? These are the questions we'll answer in the next issue.
- Sergio Sciascia, 1991
N.d.R. The Arca community remains active today. For more information, visit ancoraonlus.it