Today, a family with a disabled child can find places and ways of support in society that foster growth and social inclusion—though not everywhere equally, and much could be done to improve and expand such services. The real challenge lies ahead, in adulthood. That is when families face the question squarely: who will care for their disabled son or daughter when they are gone?
A spiral of anxiety sets in. Parents and siblings grow weary, often discouraged. They look toward a future with mounting dread, imagining a time when no one will love and care for their vulnerable family member. Families know that public services will, one way or another, assume responsibility. What terrifies them is that such care may amount to mere survival—not a life of dignity.
Traditional solutions—institutional placement—strike families as increasingly inadequate. When parents begin to think concretely about what comes "after us," their deepest hope is simple: that their disabled child will be welcomed somewhere, treated as a person, not a case number.
The research presented in this volume, conducted across Lombardy, maps both the needs, fears, and aspirations of families and service providers in the public and private sectors. It also offers concrete guidance for designing better interventions. The study examines operational models, available resources, the most fitting solutions, and the most pressing gaps—all in search of good practices worth promoting and replicating.
Laura Nardini, 2006
