Down Syndrome Legislation in the U.S. and Italy: A Comparison

Abstract

How do we guarantee dignity and quality of life to individuals with Down syndrome? If a family cannot commit to granting a dignified life, or if there are other health concerns at issue, how do we balance the right of the mother, parents, and unborn child? This article offers a comparative perspective of the disability legal framework in the U.S. and Italy, focusing on Down syndrome. In Italy, healthcare is public and universal, while in the United States healthcare is mostly privatized. In this context, in the U.S. people with mental and physical disabilities are particularly vulnerable due to the high costs of healthcare, stigma, and the need for additional advocacy. This work compares the Americans with Disabilities Act (ADA) in the U.S., the Legge 104/1992 in Italy, and the Convention on the Rights of Persons with Disabilities (CRPD) internationally. Numerous policy considerations impact the lives of individuals with Down syndrome, from conception to delivery, and from early childhood throughout development. There is a controversial legal debate concerning abortion if the fetus has an identified genetic abnormality. Additionally, once individuals with Down syndrome are born, how does the legal framework support these children and their families? Law and policy regarding access to care make a big difference in the quality of life of people with Down syndrome. At first glance, the standpoint of protecting and supporting a child with Down syndrome, and that of protecting the parents' right to terminate a pregnancy, might seem antithetical. However, they are, in fact, part of the same (difficult) conversation. By adopting a person-centered approach, paired with a relationship-centered care approach, we can pursue the holistic and humanistic ideals that our society aspires to achieve.