Disability vs Bureaucracy: the never ending story

written byarticolo-marta Marta Moglie

This morning I’ve met Arturo: almost a year old, dynamic and smiling, he has welcomed me showing how he can go up and down the stairs, crawling and rolling over to the right and to the left. The only support has been his loyal cat Macchia, standing next to him to provide help, just in case.
Arturo crawls all over the living room. It looks like he wants to achieve his goals pretty soon! This boy has experienced his first three weeks of life in the NICU of the Hospital of Rimini when he was born a year ago. Due to a not completed saturation at birth time, his mum Valeria didn’t have the chance to hug him for more than a few minutes. After two weeks, when he was finally ready to be discharged, Valeria and
Roberto, her husband, began to cope with a slow and complex bureaucracy, because a disability always
makes things more difficult.

Arturo was born with Down Sindrome, but his phenotype was so slight that it made it difficult to be diagnosed at birth time. Only after a week the genetic test confirmed the suspect. But when mum and child were both ready to come back home, the doctors told them that they wanted them to have all the medicines and technical appliances Arturo had been used into the hospital (liquid oxygen, masks, oximeter). His pediatrician was requested to make a prescription for the next sixth months to get all this. And here started the dilemma: the pediatrician, since Valeria’s family lives in a town that is not the one where she decided to give birth, wasn’t able to make the famous prescription. The public offices of the Regione Marche, which were supposed to solve the issue, couldn’t be reached. After a week of evasive answers Valeria decided to call the Regional Health Council Member and asked him directly for help. Only after this turning point Valeria and Arturo got dismissed, but with a bitter pill. Trauma after trauma the situation became difficult to bear: after a rushing delivery which didn’t give Roberto the time to be with his
wife, the low saturation that denied Valeria to stay with her son, in the same room, the post Covid 19 situation in which visitors are still allowed for only a very restricted time and subjected to a negative swab. An extremely difficult circumstance couldn’t prepare the family to bear the enormous burden of a diagnosis.
Yes, because a diagnosis of disability is indeed, a trauma. Psychological support, which would be appreciated, was not provided; Valeria and Roberto had to find themselves private professionals to support their child because the public sector proved to be, another time, ineffective. To this we have to add the fact that a year has passed and, after the expiration date of the famous prescription for the medical devices, nobody has already given Valeria instructions to send back all the stuff. She can’t pack them and send them back to the pharmacy without an official letter, but thousands of calls have been made and emails have been sent. In response to their calls, nothing more than silence. We’d better not think about an hypothetical similar situation: another family, another baby who desperately needs oxygen and can’t have it supplied because Valeria’s family can’t send it back! What – a – shame!

To the long and exhausting awaits we must add the fact the Bignamini, the public center for therapies and rehab, physiotherapy and psychomotor activities, hasn’t still taken Arturo in care, due to endless waiting lists. The same happens in the unit of genetic syndromes of the Salesi hospital in Ancona: waiting lists for a routine check are too long.

Now, you’re probably asking yourselves which can be the result of such a fight. How a family can pull itself back together to fight against the label of a disability. Because the word disability is a label that is stuck to a person and sometimes it makes the society make opinions based on prejudice. Valeria shouts out loudly: Arturo is not is syndrome! He is a smart baby who’s already proved that, with the right and continuous support of his family, his grandpas, all the professionals who take care of him, he has all the capabilities to win. “ We’ll fight to make sure that he’ll be receiving the educational model which better suits his needs, the one which allows his growth and his inclusion into the society”.

Disability often means not to be able to think about the future without being left breathless. Nobody knows how his life will be in the future. Who knows if it’s gonna be thought? Arturo is already running fiercely to go find it and it’s not us who are going to block him.

This is the english version but you can also find the italian version on our website

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