Having an incurable disease that forces her to undergo continuous therapies, makes a person invalid in terms of health but, often, excludes you from society. Especially if you are a child. Bureaucratic procedures, checks in competent bodies and missing rights, often creates inconveniences not only to the patient, but also to the family that needs to rack its brains to find alternative solutions. Chiara, a fantasy name, lives in Treviso with her family and although she has a recognized 100% disability, she cannot access to the benefits she’s entitled to. The 12-year-old girl suffers from methylmalonic acid, which causes her a severe disability and continuous need of assistance.
Although Inps recognized her total invalidity, she cannot have an assistant teacher because of the Italian red tape. Moreover, in order to be cured, she is forced to spend a lot of time at the hospital, where doctors can constantly monitor her. This leads to abscences from school and, although absences are due to health reasons, school decided to reject her. Chiara should face another challenge, to be in a class with new students. This happened despite her neurologist advised school to not separate her from her class.
Parents decided to address to Federconsumatori, whose managers activate to help them to overcome the bureaucratic obstacles, from obtaining a minibus that takes Chiara to physiotherapy (now her dad is spending working hours to do it), to take care of procedures to obtain an assistant teacher and a stairlift which allows parents to get her in and out of the house easily. “Instead of hastening and helping the family and realizing rapid path, they’ve been waiting for a wheelchair, bathroom aid and stairlift for months – Marco Paccagnella of Federconsumatori reported – last February the girl was admitted to pediatric intensive case, Inps has recognized a 100% permanent disability but still no allowance.