Serious illness, no treatment Parents on guard in kindergarten – breaking latest news

SALERNO. It was December 2018. The shrill trill of the bell came softly on this side of the window of an inert car, parked on the side of the road that surrounded the village school. The misted windshield is the only indication of a presence, or rather two, in the passenger compartment. Two pairs of eyes reddened with fatigue, stuck to the walls of that school building in the center of a village in the Piana del Sele, in the Salerno area. A faint voice: “The first hour has passed.” Four more bell rings so that yet another morning of patrols would flow away in front of the gates of the Comprehensive Institute and little Luca (invented name) slipped into the car to go home: the two pairs of red eyes were those of the his parents, forced to improvise as a lookout in order to run to class at the first alarm, at the first ring of the phone, at the first crisis. Luca, who recently attended kindergarten in December 2018, lives with a severe form of Dravet syndrome: a rare disease (the estimated incidence is just one case in a range between 20 thousand and 40 thousand people), a refractory epileptic encephalopathy. In the event of a seizure, Luca must be given very delicate drugs: there is also a syringe which, in the middle of the epileptic attack, is inoculated between the cheek and the gum. And an epileptic seizure does not knock: it can also break into school. And for a long time dose horribilis, 2018/2019, Luca’s parents had to do it by themselves: a leave in companies, holidays, permits. Everything to assist the baby. But then the permits ran out. Work was calling, and the two hired private nurses: new sentries at the school doors, in white coats. Mum, dad and private nurses: Luigi’s only guardian angels, since in the meantime his Pei, the individualized educational plan, “bible” to assist schoolchildren suffering from disabling diseases, was not there yet. Then the longed-for drafting and the prescriptions left on paper. In the deaf Italy of bureaucrats.
The final sentence. That Italy that yesterday, before the judges of the Council of State, was symbolically defeated by Luigi’s parents. Or maybe not, because 1,324 euros can’t be enough. The robes of the third Section of Palazzo Spada, led by judge Marco Lipari, accepted the appeal lodged by the family of the Piana del Sele, which entrusted itself to the lawyer Simona Marotta, and sentenced the ASL Salerno, assisted by the lawyer Valerio Casilli, and the Ministry of Education, which has not even appeared before the court, to repay the damage, financial or otherwise, that Italy’s bureaucrats have caused to little Luigi. And his parents, who that year “were initially forced – the incredible report of the magistrates – to stop every day outside the school in order to be able to intervene promptly” in the event of a crisis. In the country of trampled rights, the heroic parents, “both employees, managed to guarantee attendance to the disabled minor by alternatively taking advantage of their holidays or parental leave”. Then, however, “since they could no longer be absent, they were forced to make use of private nursing staff with the task of staying outside the school and intervening promptly”. At a cost of 824 euros.
Time flows. Expenses caused by the “snail” bureaucracy, because if the battle of Luigi’s parents began the day after November 14, 2018, when the disability working group of that Institute including the Piana del Sele denied him his rights, and the first favorable pronouncement – a decree with which the then president of the first Salerno Section of the Regional Administrative Court, Francesco Riccio, ordered in vain to the “experts” of the plexus to reconvene immediately – arrived on January 15, 2019, the ASL specialist nurse crossed the threshold of the complex only on September 16, 2019. Three hundred and six days later. In February 2019, the Tar judges had ordered the ASL and the Miur to draw up the Pei: there was still no trace of it. In May of the same year, the Plan finally arrived in the hands of the judges: “The presence of the nurse at school – he expressly provided – must be daily to protect the health and guarantee the real and total inclusion of the child”. The beautiful letters: nice words, but the school doctor wasn’t there. The judges ordered the ASL and the Miur to comply in 30 days. The nurse arrived only on September 16. And the following year, in October 2020, when the TAR issued the sentence, it declared the matter of the dispute ceased and denied compensation to the family: “The question – the verdict of the first Section, with a new president, judge Leonardo Pasanisi – it must be rejected because it is generic and without any supporting allegation “.
The “burden” of the disease. The judges of the Council of State think differently: “The TAR should have accepted the request for compensation, all the conditions exist”. The 824 euros paid out? There are wire transfers. And the non-pecuniary damage? It is worth 500 euros, and “it is objectively linked – the appeal of the judges – to the heartache deriving from the minor perception of the difficulty of their integration into the educational environment, and from feeling, ultimately, a” burden “for the administration school “. A burden. In Italy of trampled rights, which then repays them 1,324 euros. The hardest lesson to learn from the kindergarten. Up to the trill of the bell: another hour has passed. Another 306 days.
© breaking latest news