Autism. Faced with the lack of IMEs specialized in severe autistic disorders, the institutions sound the alarm

The medical-educational institute (IME) l’Éveil de Cormontreuil seeks help from the ARS Grand Est, following the reception of an autistic child suffering from serious disorders. The organization does not have adequate facilities and human resources to deal with it as it should.

Everything was decided very quickly by the children’s judge in early April 2021. After an incident in which little Amine, then 10 years old, put herself in danger while she was with her mother, it was decided to place him in a specialized organization near Reims.

The child suffers from severe autistic disorders and can, in case of frustration, be violent towards himself or towards others. Even going, once, to jump out of the window on the first floor.

Before his insertion, he had to do a stint in adult psychiatry. This saddens Josselin Parenté and François Le Bœuf, the leaders of the association and ofEMI Awakening, where the baby is now being looked after.

They both understand perfectly why Justice has referred Amine to their institution, which is more suitable than a dedicated service for adults. But they deplore the lack of reaction from the ARS, to which they have been asking for help for more than a year, to improve the facilities and make them more suitable for cases of severe autism like this one.

The only institute in the Marne with an adapted section is theEMI White Butterflies in Champagne. In this section specializing in autistic disorders, the organization can welcome 20 children followed by trained staff to best support them. Twenty other children are on the waiting list and hope to be cared for in the facility. It was therefore impossible for Amine to be placed there.

In 24 hours we had to rethink and renovate our entire space!

Josselin Parenté, head of the EMI l’Éveil

But behold, his arrival at theEMI Waking up was not easy. In 24 hours we had to rethink and renovate our entire space. Since Amine cannot be placed on a floor, as it poses a danger to her own safety, she cannot sleep in dorms. So we urgently rearranged an infirmary room on the ground floor so that she could sleep there. We had to block the windows, cover the walls, protect it, transform a common workspace into an individual space, adapt the teaching kitchen to a place for individual meals and secure the playground during its outings. “

The changes were made, according to officials from theEMIvery quickly. They have improved over time, in one year we obviously thought about welcoming Amine in the best possible way. But our structure is not suitable, it lacks particular spaces. And our shortcomings are also at the level of the staff who are not necessarily trained to take care of them as they should. In addition, our employees, by dint of taking a fight, are operating their right of withdrawal. Which is logical! They see that no solution is being proposed to us by the competent authorities and they have not become educators for this “.

“So we have precarious workers who change regularly and don’t know how to care for children with these disorders. They too end up being overwhelmed. This little boy needs an extremely regular framework. Unlike other children, he needs two educators one. day, from 7:00 to 14:00 and from 14:00 to 21:00. He needs habits, specific people. Today, one year after his arrival, this is no longer the case “.

Furthermore, on weekends, the institution has to entrust the child to the mother, aided by external educators, which causes a break in Amine’s retinue who loses her orientation. His psychiatrist, who is also that of the IME, does not notice any improvement in his condition, which is not surprising, since he is not supervised as he should. We do our best, but we can’t do more. It is for this reason that we have contacted ARS Grand Est on numerous occasions, which apart from a small sum of money upon Amine’s arrival, does not provide us with a solution and totally ignores the problems we encounter here. “

Those responsible for theEMI del Risveglio were able to count on that of the White Butterflies in Champagne, Stéphane Fisse, who lent some of his specialized educators so that they could take care of the child and advise them on the structures to be put in place.

Four to five new severe autism cases detected each year in Marne

Stéphane Fisse-Head of the IME des Papillons Blancs in Champagne

For the latter there is a real lack of suitable structures in the Marne. Each year, on average, we have four to five new cases of severe autism that are detected and that we cannot take care of in our department. You need a special room with space, specialized facilities that welcome children 24/7. After 4pm the child is no less handicapped and the parents do not care.

What we need is a real structure with living spaces designed for children who sometimes cannot get in touch with others and staff trained in the different singularities involved in severe autistic disorders. With proper medical monitoring. Knowing that our institutes are primarily educational institutions and therefore do not have the necessary medical follow-up for serious ailments. At the moment, there is no such establishment in the department and it would be important for this to change!

A problem that is far from reserved for the department of the Marne alone. “It is a big problem that affects the whole countryconfirms Danièle Langloys, president of the Autisme France association. Since 2013 there have been no more creations of new IMEs for children and today the waiting times vary between 3 and 5 years. This is a problem that we have had for 10 years, we ask for resources but we don’t hear from each other. There is talk of inclusive schools, but the school does not have the means to take care of these children, it would require much greater investments from the public authorities.

Furthermore, in this case, there is also the problem of homologations. Very few facilities have the permissions to be able to care for the most severe cases of autism.

Meanwhile, the two EMI The Marnais we interviewed therefore sound once again the alarm bell on these serious cases of autism and even talk about “user abuse” concerning the current care of some children, as the facilities are no longer suitable. They feel they are not giving them the help they should normally be giving.

After a letter to Arnaud Robinet, mayor (Horizons) of Reims, another to Emmanuel and Brigitte Macron last year, the institutions intend to contact the newly re-elected President of the Republic to ask him for help.

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