What direction do you point families toward when they face the difficult task of planning their child's future—especially when that child has severe or profound disabilities?
Anffas stands alongside families across every dimension of daily life. Central to this work is the "After Us Foundation," which since its founding in 1984 has worked to build not only adequate facilities and services but, more crucially, to implement comprehensive care plans. These plans rest on shared responsibility between public agencies, a holistic vision of the person's life, personalized and humane support, the preservation and growth of the disabled person within their family and community, and the guarantee of civil and human rights and genuine quality of life.
The Foundation's mission extends beyond the "after us" moment to the "during us" moment—through the capacity to provide care, in protected settings, for both the disabled person and, when relevant, their aging parents.
How do you view legal recognition for family caregivers and early retirement legislation?
The family caregiver carries the greatest burden and responsibility for the disabled person. Often they must leave work to provide the daily, continuous care that the state fails to guarantee. Yet today this role lacks legal protection and recognition. Family caregivers cannot access insurance coverage, and when they leave employment, they lose both pension contributions and future security—a gap that does not exist in other European countries. As an association of families, we cannot but advocate for normative recognition, especially in economic and pension terms, so these people can live with some peace of mind despite the already overwhelming complexity of their daily lives.
On early retirement, while Anffas welcomes any initiative to support families of disabled people, we must raise a caution. We fear that early retirement could shift the entire weight of care onto family shoulders, replacing the integrated network of services that families urgently need—a support system that should begin at the moment a child with disabilities arrives, not end when a parent retires.
Let us be clear: financial and pension support must never reduce disability to a mere transaction. Additional resources must address the deeper reality—the systemic poverty that characterizes the lives of disabled people and their families. True support means improving their quality of life, not simply monetizing need.
What improvements are needed in current disability law?
We need to do far more to implement the UN Convention on the Rights of Persons with Disabilities, which became Italian law in 2009 and covers every dimension of disabled people's lives.
The complaints we receive daily at Anffas point to two urgent areas: employment inclusion and school inclusion both demand far greater attention.
The Individual Life Plan—mandated under Article 14 of Law 328/2000—also needs strengthening. This law grants every disabled person and their representative the right to ask their municipality to develop a personalized life plan, working with local health services and public institutions to achieve genuine social inclusion. It offers something essential: an approach that looks beyond medical diagnosis to the person's actual lived experience and circumstances. Yet this tool remains underused and underfunded across the country.
Learn More About Anffas
ANFFAS was founded in 1958 to guarantee people with intellectual and relational disabilities the right to an independent, free, and protected life. Today it operates more than 160 local branches, has over 14,000 members across Italy, serves 30,000 people daily (disabled persons and their parents and families), and employs 5,000 staff and professionals across more than 1,000 centers nationwide.
The association's greatest strength lies in the vast volunteer network of parents, family members, and friends—the organization's fundamental resource—together with over 40 Anffas-branded entities. It works across health care, social services, assistance, education, sports, recreation, motor development, scientific research, training, philanthropy, and the protection of human and civil rights.
Anffas pursues legislative, administrative, and judicial initiatives, driving research, prevention, treatment, and rehabilitation for intellectual and relational disabilities. In every arena, it represents and defends the human, social, and civil rights of citizens who, because of their intellectual or relational disabilities, cannot advocate for themselves.