School and disabled people, 8 days from the start, first stop: Roberta’s story (and many others)

8 days have passed since the first bell that marked the return to school after the summer holidays and Roberta, an 8-year-old girl from Milan affected by a variant of a rare diseaseacampomelic campomelic dysplasia, he already had to give up the first day of classes. There will be other forced absences. Reason: yesterday it was not possible to secure the nurse who was supposed to assist her during classroom hours. So no school, we stay at home. And “like her, many other children in Italy with the need for health care, as well as education”, see their right to education guaranteed only on alternate days, denounce Roberta’s parents, Fortunato Nicoletti and Maria Coppola, who lead a volunteer organization, ‘Nessuno è escluso’, dedicated to families with people affected by rare diseases and disabilities. “Another year begins with the sword of Damocles of the unknown of attendance”, Nicoletti underlines to Adnkronos Salute.

“All this is happening while the Minister for Disability is praising the upcoming G7 of inclusion in Umbria and the Minister of Education is talking on TV about how important it is to ban cell phones in school without taking care of support teachers and the fact that school is forbidden for thousands of students with disabilities. The national system in general is not able to respond to the needs or even guarantee these fundamental rights”, warns the father.

“In our case, we are talking about Lombardy, a region that defines itself as being at the forefront: an Asst, specifically Santi Paolo e Carlo, only 15 days ago, through the multidimensional evaluation unit, approved and signed Roberta’s life project pursuant to law 328/2000, a project in which it is indicated (and shared by all) that school nursing care must be provided (and all other necessary support provided) for every day and every hour in order to guarantee the ‘mirage’ of the right to study – Nicoletti reconstructs – But it happens that the Asst, despite its prerogatives, tasks and responsibilities, is unable to oblige the accredited body on duty (or does not want to), in this case the Maddalena Grassi Foundation, to provide and guarantee the necessary operators”. “We remind you – intervenes Laura Andrao, a lawyer expert in these issues, who follows the battles of various associations – that if you define a project as unfeasible, because you then do not make the necessary resources available, you are immediately condemnable by a court”.

“And the Municipality of Milan? Not even this latter is free from responsibility – observes Nicoletti – indeed, precisely with the approval of the life project, of which it is the director but also the referent and responsible, it becomes a protagonist in this case clearly in a negative way. So on the one hand we have the usual imaginative narrative of ministers, mayors, councilors of every color and level who talk about disability and inclusion without knowing the facts, on the other we have the real world that tells of incompressible rights denied, of exclusion, marginalization and discrimination”.

“It’s time to stop making propaganda on the living skin of people and families with disabilities – he insists – holding public offices of a certain level is first and foremost a burden, which means taking responsibility for choices. Politics as a whole has long decided that disability, and not only this unfortunately, is not a priority for this country, but only a great nuisance. To be resolved with a dedicated ministry without portfolio, with observers, experts and technical working groups of all kinds that do nothing but muddy the waters. In the media it works, politically too, perhaps. But everyday life brings out a situation that is completely upside down compared to the narrative of fantasy and in the end the numbers won’t add up even for politics. Because what are the missed investments today – investments not costs – will be expenses multiplied beyond measure in the coming years”, he concludes.