We spoke with Roberto Speziale, national president of ANFFAS Onlus, about key aspects of Law 112/2016 on life after parental care for people with severe disabilities.
Beyond the fund for assisting people with severe disabilities who lack family support, tax breaks on inheritance for assets placed in trust, and deductible insurance policies—what are the real innovations in this law? (For instance, wasn't the trust instrument already available, and couldn't group housing arrangements already be established?)
The trust—literally a "contract of confidence," borrowed from Anglo-Saxon law—had never been regulated in Italy before. It could technically be applied, since European law recognized it, but it lacked a statutory framework. Law 112 brought that framework. ANFFAS would have preferred a separate statute, but the legislature chose to include it in this law. Article 6 now allows trusts to be established for people with certified severe disabilities under Law 104/'92, Article 3, Paragraph 3, with the tax benefits the law provides. The real novelty is that if a trust benefits someone with severe disability—properly certified—that trust qualifies for these same protections.
Group housing arrangements existed before, but they weren't legally recognized. If they did exist, they had to meet a maze of requirements—usually medical rather than practical—that had nothing to do with quality of life or what residents actually needed. Law 112 changes that. Now such arrangements require only the basics: a normal residential home, located in an ordinary neighborhood, housing no more than five people, offering private bedrooms whenever possible, allowing residents to furnish their own rooms. For the first time, Law 112 lets people with disabilities actually set up a home, cover the costs, and do it without jumping through pointless bureaucratic hoops.
The crucial innovation is that this law honors the UN Convention on the Rights of Persons with Disabilities. Article 19 guarantees every person with a disability the right to choose where and with whom to live.
Just as important: this is the first time a national Italian law explicitly addresses institutionalization and de-institutionalization. That alone matters. It means the state has acknowledged that the problem exists—the sprawling residential facilities where hundreds and hundreds of people with disabilities live—and that something must change. Law 112 doesn't solve it, but at least it names it.
From your position, close to families with very different situations—different severity levels, and different cultural, economic, and social circumstances—what problems remain unsolved?
The law targets only people with certified severe disabilities under Law 104, with the formal gravitas designation. It should apply to everyone with a disability, regardless of how we grade severity. That way, every person could receive "adequate support" to actually live out their own life plan.
To activate the law's provisions, families must request an individual project plan—as required under Article 14 of Law 328/2000—along with a project budget and assignment of a case manager. The local health service multidisciplinary teams are responsible for this, acting on requests from the person with disability or their family. The application goes to the municipality where the person lives. Here's where we see the biggest problem: many towns simply aren't equipped to do this work. They don't know what steps to take or how to take them, even though Law 328 has been on the books for seventeen years.
Then there's the funding gap. The national fund should be topped up by regional and local authorities, but frankly, we don't see that commitment materializing.
Can organizations like ANFFAS help families develop these projects—the fund's stated aim?
Since the law passed, ANFFAS and our national foundation "After Us" have been doing massive training and outreach. Any family—whether connected to ANFFAS or not—can come to us for help designing and carrying out a "During Us for After Us" plan, one that reflects what the person actually wants, expects, and prefers.
Living in one's own home, as many parents hope for their children, isn't automatically "inclusive." What safeguards can prevent this from becoming just another form of isolation?
Law 112 took this risk seriously. That's why the whole framework hinges on the individual project plan under Article 14 of Law 328. The law insists that we always work toward the best possible quality of life for the person. Any form of segregation or isolation—even within four walls—would violate the law's spirit.
If the law means to promote de-institutionalization, why didn't the legislature reform the institutions themselves?
That would require a comprehensive "Basaglia Law for Disability"—and we'd have to avoid the mistakes of Law 180. Real de-institutionalization demands far more resources and far more sweeping action. Still, it's encouraging that a law has started this conversation and allocated funding specifically for de-institutionalization efforts.
Finally, a very practical question: If a family sets up an apartment with a trust for their severely disabled adult child to live in with two other people—one or both with disabilities—what happens to those other two if the first person dies?
Right now, the trust benefits only a single designated person. We're working on a collective trust model and have asked the Ministry whether such an arrangement would qualify for the same tax breaks. Let me be clear: the trust is just one tool for protecting and directing assets. Other options exist—gifts with conditions, substitutions in perpetuity, and more—and often they work better than a trust. The real answer is to look at each situation carefully and tailor the solution to fit. That's the only way.