Beyond funding for assistance to people with severe disabilities who lack family support, tax breaks on inherited assets placed in trusts, and deductible insurance premiums—what are the real innovations in this law? (For example, trusts were already available as a legal tool, weren't they? And group housing didn't already exist?)
The trust—literally a "contract of confidence" drawn from Anglo-Saxon legal tradition—was not previously codified in Italian law, though it could still be applied since it was recognized at the European level. With Law 112, the legislator introduced (and ANFFAS would have preferred a separate statute for this) a provision allowing the establishment of trusts in favor of people with severe disabilities certified under Law 104/'92, Article 3, Section 3, with the tax benefits the law provides.
So the innovation is this: under Law 112/2016 (which houses this mechanism in Article 6), when a trust is created for a person with severe disability who holds the required certification, that trust qualifies for the law's stated tax benefits.
Group housing arrangements already existed, but the law did not formally recognize them—or they had to meet a long list of requirements, often purely medical in nature, that had nothing to do with quality of life or what residents actually needed. Law 112 finally establishes that such living arrangements need only meet the standards of ordinary homes: they must be in residential neighborhoods, house no more than five people, preferably provide single bedrooms, and allow residents to furnish them with their own furniture and belongings. In short, Law 112 allows people with disabilities to set up a home for the first time, with financial support and without unnecessary bureaucratic obstacles.
The major innovation is that this law was written in respect of the UN Convention on the Rights of Persons with Disabilities, which states in Article 19 that every person with a disability has the right to choose where and with whom to live.
Another key point: for the first time in Italian law, the state explicitly addresses institutionalization and de-institutionalization. It recognizes that large residential facilities housing hundreds of people with disabilities are a real problem. Law 112 doesn't solve it, but at least it names it.
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From your perspective, working with families facing very different challenges—not just varying degrees of disability, but also different cultural, economic, and social circumstances—what knots remain untied?
The law addresses only people with severe disabilities certified under Law 104 as severely disabled. It should apply to all people with disabilities regardless of "severity," guaranteeing each one "adequate supports" so they can carry out their life project.
To activate the law's provisions, families must prepare an individual plan as required by Article 14 of Law 328/2000, along with a project budget and identification of a "case manager." This falls to multidisciplinary teams in local health services, at the request of the person with a disability or their family. The request goes to the municipal office where the person lives. We worry this is already one of the biggest obstacles. Many municipalities lack the training or knowledge to implement this requirement—even though Law 328 has been in place for seventeen years.
Another problem: the national fund's resources should be supplemented by regional and municipal governments, but in general we don't see that commitment.
Can organizations like ANFFAS help families develop these projects, which the law's fund is meant to support?
ANFFAS and its national Foundation "After Us" have been conducting massive training and information campaigns since the law was passed. All ANFFAS families and associations—as well as those outside our network—can turn to us for help designing and implementing a "During Us for After Us" project that responds to their wishes, hopes, and preferences.
Staying in one's own home, as many parents hope for their child, doesn't necessarily mean truly "inclusive" living. What safeguards can you suggest to avoid this trap?
Law 112 addressed this risk carefully. The whole framework depends on preparing an individual plan under Article 14 of Law 328/2000. Essentially, the law requires that we always work to ensure the best possible quality of life for the person with a disability. Any form of segregation or isolation—even at home—would contradict proper implementation of the law.
If the law aims to promote de-institutionalization, why didn't the legislator overhaul the conditions governing the very institutions it mentions?
That would require a specific "Basaglia Law" for disability—without repeating the mistakes of Law 180. De-institutionalization needs far greater resources and measures to succeed. For now, it's positive that a law has begun to address the issue and allocate funding, specifically prioritizing de-institutionalization pathways.
One very practical question: if a family places an apartment in trust for their son with severe disability to share with two other people (with varying degrees of disability), what happens to the others if the son dies?
Right now, a trust under Law 112 can be set up only for a single beneficiary. We're working on a collective trust model and have asked the Ministry whether it would qualify for the same tax benefits as an individual trust. I should stress that the trust is just one tool for protecting and designating assets. There are others—such as conditional gifts and substitutive wills—that often prove more effective and appropriate. The bottom line is that each situation requires analysis case by case, and you need to tailor a solution that fits the specific circumstances as well as possible.
By Cristina Tersigni, 2017
