One genuine strength of the "After Us" law is that it has brought the question to the table for all stakeholders—local authorities, health agencies, families, advocacy groups. Families were already deeply invested, of course, but the law should give them clearer guidance and stronger incentive to address the issue sooner rather than later. We hope it clarifies things rather than complicates them.
As the Fondazione Promozione Sociale notes in the piece below—an organization that has long tracked Italy's care system with care—much of what the law promises was already guaranteed by existing legislation. Many good life projects for disabled people living away from family were already underway before this law passed. That matters to remember. But many rights, already enshrined in law or newly described in it, still must be claimed through legal channels to become real. The law's real gift may be a fuller, more conscious vision of the question itself, one that allows us to tailor a life plan suited to each person.
We keep talking with one another to gather many important viewpoints, so that the good practices this law should spark are truly good and truly possible for everyone. We're waiting, too, for your experiences and assessments.
More than a year after Parliament passed law 112/2016—the so-called "After Us" law—it seems right to trace both its shortcomings and potential fixes as we monitor its application and ensure that the resources it allocates actually reach disabled people as concrete, enforceable benefits. Some of these corrections are already emerging in the fund-allocation decree (November 23, 2016) and could be fully adopted in regional budget decisions.
Additional Services
Despite being presented as an "innovative" law—the first in Italy to formally address the "After Us" question—law 112/2016 actually provides services that "add to the essential care levels and other health and support interventions already in place under current law for disabled people," as the National Council of Notaries observed in an agreement with Anffas on April 28. Additional to what, exactly? To existing law on health and care coverage for people with severe intellectual disability, those with minimal or no independence, and those with autism. Let's look at what's already there.
A Brief History
In Italy, the "After Us" question has been legally settled for a very long time. As far back as the Royal Decree of 1889 (no. 6535), municipalities were legally required to cover the costs of care for people unable to work—that is, "persons of either sex who, because of chronic illness or incurable physical or intellectual defects, cannot secure their own means of subsistence," unless other care agencies assumed those costs. A major step forward came with Royal Decree 383/1934, which obligated municipalities to "maintain" people unable to work and thus also to provide support allowing them to live at home.
Essential Care Levels
Today, under the LEA (Essential Levels of Health and Care Services) established by law 289/2002, article 54, local health agencies and municipalities are legally required to provide people with severe disabilities the necessary home care, day services (day centers), and residential care. The best residential solutions, in our view, are small group homes modeled on family living—8 to 10 residents maximum, set in normal neighborhoods—or shared apartments for people with disabilities and limited independence. These are all services already fully operational (thousands of facilities, cooperatives, and social enterprises now work in this field, contracted to care for thousands of users). Yet health agencies often refuse them through non-enforcement of law. Despite this, the health and care services mandated by law are enforceable—that is, you can formally request them, and if denied, you can pursue them in court. All the practical tools for requesting these services are available at www.fondazionepromozionesociale.it, tel. 011.8124469.
After "After Us"
What happens next to ensure the law's allocated resources actually reach people as essential-level services guaranteed by health agencies? Regional budget decisions must tie these resources to services chosen in regional planning and grounded in the LEA framework. Piedmont already did this through decree 2/2017, which targets care for chronic patients, with special attention to autism spectrum disorders. The path forward is clear.
A few examples. Building and running a day center or group home for disabled people makes no sense—and has no future—outside the structure of the National Health Service (which is required to pay 70 percent of the residential care costs). The same goes for home-based services: they're pointless, even harmful, if launched without health service involvement, which guarantees rights. It would be a tragedy to waste the hopes and concrete work that many families want to undertake, but equally damaging to mislead them—as political propaganda has often done—by letting them shoulder solutions they cannot sustain, propping them up with temporary grants that mask an unsustainable burden.
Interest in understanding law 112/16 has also reached organizations like Fede e Luce. Many families are searching the law for answers, given the funds now distributed among regions and the implementation guidelines each has issued (so far, only some regions have). Last October, in Genzano, family members and friends from Fede e Luce communities across central Italy (Kimata) met with several experts to dig deeper into the law and its technical details during a training day titled "Raise the Sails!" Individual speakers' contributions are available at www.fedeeluce.it. Below you can read reflections from Letizia, a sister, on how the need arose to address the question of life away from family for people with intellectual disabilities. And impressions from Nicla, a mother, on the meeting from her perspective.
Andrea Ciattaglia, 2018
Fondazione Promozione Sociale ONLUS, Editor, Prospettive Assistenziali