The editorial of Stefania Delendatieditor-in-chief of «Superando.it» (Autism, the Cinderella of inclusion), inevitably “invited” me to jot down what you will read below. I should have written on the spur of the moment, perhaps, about the facts that I will tell, but I preferred to report to the Region and produce concrete effects (which I will tell in another article).
The real problem, therefore, is the improvisation. We are now a country where everyone can do everything. And here I think above all of the people who improvise as teachers who, obviously without tarring everyone with the same brush, in order to make ends meet, make themselves available to be called by schools to carry out a delicate role such as teaching, to raise future generations or, even worse, to support pupils and students with disabilitiesperhaps taking away from them those few opportunities to pretend to live in an inclusive context.
I am perhaps using very strong tones, but, believe me, never like in this period do we live in a dystopian system, a term that is so fashionable today. But more relevant than ever here.
As Stefania Delendati states, the indifference that surrounds us can only unleash anger. We have well written lawsat least those for which the Associations, through FISH (Italian Federation for the Overcoming of Handicap), are called to integrate and often correct with fundamental amendments, to truly respond to the needs of people with disabilities. But those rules are not implemented. Laws that date back more than thirty years, such as 104/92, twenty-four years ago, such as 328/00 for the Life Project, for socio-health integration, rules that are still far from having effective repercussions on people with disabilities and their families. Now the Legislative Decree 62/24which should (the conditional is a must) guarantee those rights that we families thought were already enforceable for some time. And we find ourselves again in the experimentation. Still.
Even today we are not sure that we can safely leave our children at school (read about it at this and this link). Eleven years have passed since I discovered that my son Danielthen still in nursery school, came mistreated by teachersand it all came out in the worst way: the police in front of the school. Just arrived, surrounded by journalists looking for the exclusive. That’s what you’re looking for, the news, you ride it until it’s high, then…
We reported it, as GOOSE Lazio (National Association of Parents of People with Autism), over the years, with articles and messages to members, also because ANGSA Lazio became a civil party in the trial. It took almost ten years to win even in the third degree of judgment, but if you search for the news on Google, we stop at 2013. And so for all current events that concern autism and, alas, there are many. The latest in chronological order, Luca e Gabriele.
By Luca (fictitious name, because the family asked me to at least respect their pain) no one “wanted” to writeperhaps too uncomfortable. I had also contacted some newspapers that are always ready to welcome facts regarding disability, and yet, nothing. Maybe too uncomfortable. And the school continues to be involved. That school that many countries envy us for its inclusiveness. Which does not exist independently, but is directly proportional to the people who try to implement it. Because it is not even right to say that everything works badly. And thank goodness!
With Gabriele, however, we enter the other grey area of our inclusive society. Health vs. Disability. The right to care for the person with complex disabilities is widely disregarded. There is much talk about hospital pathways for uncooperative people (!), about TOBIA Services, but in reality there is always a tendency to consider autism and not the person. So you end up treating a fracture or pneumonia in a psychiatric ward. And there are Gabrieles many around Italy.
I remember a boy, at the time, now a young man of 25, who for days and days was hospitalized in Neuropsychiatry at the Bambino Gesù Hospital in Rome, because he had activated problematic behaviors that were difficult to manage, and who was given strong psychotropic drugs to calm him down, completely neglecting the organic part: purulent discharge from the nose. After several days, by chance, a doctor on duty spontaneously asked the question: have we ever asked for an ENT consultation? The answer was no. Well, the boy had inserted a gauze into one nostril, which then went down and “planted” between his nose and throat, becoming infected. It had not occurred to anyone that before autism there are the Gabriele, Daniel, Claudio, Marta, Nicole of the situation.
Regarding the aforementioned TOBIA Services, precisely in these months of creation of new “centers” in Lazio (for me they are and remain Services), after the Regional Council Determination n. G01769 of 13 February 2023 (Regional guidelines for the organization of pathways aimed at people with complex and/or cognitive-relational disabilities), there are families who find themselves with children with complex disabilities having to begalas, because that’s what it’s all about, the right to care specific to every citizen, such as a person with a disability.
One of these is once again my son. And it’s not that everything happens to him, it’s simply that the most complex people are the ones for whom our inclusive society is most likely to be tend to exclude, to avoid complications. And then it happens that after a few hours in the Emergency Room for bilious vomiting (not the first episode, but this one is definitely more serious), after an antiemetic drug and a glucose and saline drip to resuscitate him – poor thing, he was completely dehydrated -, we couldn’t do any more tests, because, like Hulk, he tore everything and we had to leave. I was aware of it, I would never have gone to an Emergency Room if it hadn’t been for the dehydration. Even if it’s right from there, come on Emergency room which must, and I repeat, TOBIA Services must start. I signed and, hopefully, I said to myself, “ok, I’ll write immediately to the Service where we have already activated other exam slots and request an urgent gastroscopy”. How many misplaced hopes! In fact, twenty days later, from an interlocutory and rather vague response (“Good morning, for the requested service we are organizing the process with the reference specialists, but at the moment we cannot schedule an appointment. We will contact you as soon as the specialist is available”), I asked for explanations for the time that had passed, reminding me that it was not a check-up visit, a prevention visit, and above all the availability of the specialist had to be subordinated to the needs of the emergency. Well, at that point we receive an unacceptable response: «Good morning Mrs. Stellino, we fully understand the difficulties encountered. The TOBIA project […] at the moment it is only active for some specialists and the various operating units of the polyclinic are being gradually activated, also in relation to the availability of space and personnel, which is why to date the service is only active on Fridays. As foreseen by the TOBIA DAMA network, could try to contact the TOBIA Project San Camillo-San Giovanni-Sant’Andrea or Ostia. As soon as the requested service is activated, we will take care of notifying you promptly. Greetings Team TOBIA DAMA Project».
Do you remember the famous animated film? Inside Out? The emotions in my brain, the moment I read these lines, went crazy. Inhaling and exhaling several times to avoid a panic attack, I lined up the recipients of the response and here it is: «[…] Il “could try” is not an acceptable answer. […] it is not acceptable to use a conditional with the verb “try” which opens up the possibility of not succeeding. I think you realize that this means decreeing the failure of a service which by definition must be precisely at the service. TOBIA is a service, not a project. This is perhaps where it all started. Confusing rights with projects. But do you realize that TOBIA Services were created for people with complex disabilities abandoned by the health system? Do you realize that you chose to open the service? It is absolutely unacceptable to respond with a “you could try” delegating Once again to the family already harassed enough by bureaucracy and exhausted by a disability like autism with a need for very intensive support. Tell that to Daniel who continues to vomit bile, if you dare. My disproportionate reaction? The reaction of a parent who can no longer defend the rights of people with disabilities for almost 20 years and find himself having to read such a response. In your previous message of May 24, you did not say this. Why? In 20 and more “groups” we could have taken action. Look, the spell checker writes circles, reading minds… yes, because It really feels like being in hell.
I conclude by saying that in spite of myself, because we have always been welcomed very well by you, and Daniel had learned to trust, I was saying, in spite of myself, if something were to happen to Daniel concerning the gastrointestinal problem and the episodes of bilious vomiting, I will hold you directly responsible, for not having satisfied our request. Simple statement of facts.
I’m really sorry that once again disability has lostwhich once again a person with a complex disability like Daniel’s not be considered a citizen like the others. Not even have the right to medical care.
Thanks for what you CANNOT do!
Stefania Stellino».
I don’t think it’s necessary to add anything else.
President of theGOOSE Lazio (National Association of Parents of People with Autism).
