Olivier, 10 years old and a pupil of CM1 in Lyon, suffering from autism, is forced to have lunch outside with his mother, in front of the gates of his school. This striking affair, relayed by BFM TV Lyon, caused great emotion on social networks. The child was excluded from the school canteen for “an indefinite period” after a crisis that his establishment had not been able to manage, for lack of available trained staff. “The law of 2005 is not respected, the inclusion of children with disabilities is not respected”, moved Cécile Duvernet, the mother of the student who, since November 24, had to make a hour drive from his office every lunchtime to bring a sandwich to his son. The law of February 11, 2005 provides that any child with a disability has the right to enroll in a school, it is up to the institutions to implement the means necessary for this schooling.
The town hall of Lyon pointed to the shortage of supervisory staff to justify this decision. Since then, a solution has been found for this family: Olivier will now be able to benefit from the help of a new support for students with disabilities (AESH), recruited for this purpose. But the story of young Olivier is far from being an isolated case since several hundred other children and adolescents find themselves in a similar situation today. “Certainly, Olivier’s situation is now provisionally settled. But what about all the others?” Protests Claire Lambert, who was behind the creation of the Inclusion scolaire en danger collective. Since the start of the school year, this mother of a disabled child, for a time faced with the same situation as Olivier, has been contacted by more than 500 families in distress and 200 of them have joined the collective to try to be heard. .
Because, to the shortage of AESH, regularly denounced in France, another aggravating factor has recently been added: decision of the Council of State, rendered on November 20, 2020, recalls that the supervision of the lunch break, and extracurricular time in general, is the responsibility of local authorities and not that of National Education. This decision set a precedent and led to a de facto withdrawal of the State. Without the town halls, departments or regions benefiting from an additional financial allocation. “This is why many of us today see our children kicked out of the canteen”, explains Claire Lambert who, in recent months, has been constantly knocking on all doors to try to alert elected officials and administrative or political leaders on this inextricable situation.
“But everyone passes the buck and nothing moves. It’s unbearable!”, She denounces, pointing to the administrative headache that AESH are faced with. “This profession, which is already very precarious, is affected by the decision of the Council of State: it sometimes finds itself deprived of canteen hours, for lack of funding. In addition, it must juggle several contracts issued by their various employers, which are the State, municipalities or private actors”, she explains. The Ministry of National Education, contacted by L’Express on December 7, claims to have heard the distress of these families. “A circular aimed at specifying the procedures to be followed and standardizing them should be released in the coming days”, explains rue de Grenelle.
“A real descent into hell”
But as it stands, the problematic situation remains. For Claire Lambert, there is urgency. This resident of Loire-Atlantique found herself, the first 15 days of return, having lunch in her car with her son Arthur, 12, semi-paralyzed on the right side following a stroke in utero and suffering from disorders of orality. “At the beginning of September, we learned with amazement that the AESH in charge of Arthur’s follow-up, could no longer be present at his side in the canteen, for lack of funding”, she says. The only solutions proposed: that his son become an extern or that one of his parents or grandparents come to assist him in the refectory. “This last perspective is unimaginable for a teenager! So I had to manage to leave my office and pick it up at lunchtime. A real descent into hell. I really believed that, like many ‘other parents, I was going to have to quit my job because the situation was not tenable,” she says.
To get out of it, she then decides to remunerate the AESH herself by offering her a private contract. “Which is illegal because normally, it is not up to the parents to pay them. We received a notification from the MDPH (Departmental House for the Disabled, editor’s note) which stipulates the number of hours of support to which we were entitled , on public funds. But I had no choice”, continues the young woman who then decides to make her story public by posting on social networks a photo of her son, sandwich in hand, in the car. Its publication will collect more than 200,000 views and will generate many reactions. Since then, an “exceptional endowment” has been awarded to him so that Arthur finally benefits from the help of an AESH during the meridian break.
Laëtitia Loheac, also at the head of the Inclusion scolaire en danger collective, encountered the same hassle. Her 11-year-old son Ewan, autistic and epileptic, was very disturbed by being excluded from the canteen for three months. “It was complicated for him to no longer be able to eat with his friends. For an autistic child who particularly needs landmarks, it’s extremely destabilizing. He chained the attacks of tears and anxiety”. As she prepared to go to court, she too obtained a specific endowment. “But this is only an individual and temporary solution. Claire and I will continue to move heaven and earth until our rights are respected,” she explains.
Excerpt from a report by human rights defender Claire Hédon
Mounir Belhamiti, MP (Renaissance) for Loire-Atlantique, is one of the few elected officials to have taken up the subject through a written question posed on October 18 to the government. In his text, he insists in particular on the need to implement “tripartite agreements between AESH, the State as sole employer, and the community which undertakes to finance the share corresponding to the time of school catering”. The defender of rights Claire Hédon, in a report dedicated to “human support for students with disabilities” published last August, clearly stipulates that “the reception of the child during extracurricular times, in particular at the canteen, is the corollary of the fundamental right to the education of children”.
And yet. Tony Taglione, father of little Marco enrolled in a small kindergarten section, in Bayonne, is also forced to employ, at his expense, an AESH during meals. “My son has DeSanto-Shinawi syndrome which causes developmental delay. This translates into difficulties in understanding, balance, digestion,” he explains. Impossible for him, therefore, to do without the help of a trained person. “Caring for an AESH on the lunch break costs us around 200 euros per month. We are lucky to have found someone but also to have the means to do it, which is not the case of everyone”, continues Tony Taglione. Within the Catholic establishment where Marco is registered, five families in total are concerned. All are required to find a solution on their own.
Parents forced to quit their jobs
The situation is all the more complicated in private establishments under contract since the general financing of the canteen is not provided by the local authorities as in the public. The responsibility lies with the management bodies, specialized associations… which, for the most part, claim not to have the means. “The decision of the Council of State of November 2020, stipulating that it is up to the communities and not to the State to take charge of the salary of AESH does not take into account the specificity of the private sector. We did not asked the question of what would happen to the children suddenly deprived of support”, regrets Claire Lambert.
Children with disabilities registered in the public are also concerned. Mélanie Mureau, mother of 9-year-old Manon, is in conflict with the town hall of her village near La Rochelle. Long fed by a probe, the little girl, enrolled in CE2 in her neighborhood public school, had completed a 6-week weaning course in December 2020. Subsequently, the doctors had prescribed individual support to help the little girl feed and to stimulate it. “We had asked the municipality to explain the facts to him and ask him for support. We were listened to but nothing was done”, says Mélanie Mureau. Alone in front of her plate, Manon was not eating. “She started wasting away. Suffering from cardiomyopathy, she was at risk of a heart problem”, continues her mother. In January 2022, the latter was finally forced to quit her job in the restaurant industry to be able to keep her for lunch.
Since September, thanks to the work of dieticians and outside professionals, the little girl has been able to feed herself better and can go back to the canteen two days a week. Meanwhile, last April, his mother had seized the administrative court of Poitiers to have his rights heard. “No news either since,” she sighs. “Having a disabled child is already an obstacle course on a daily basis. If we are also taken away from the canteen, that’s really too much. It’s exhausting to have to fight every time”, continues Mélanie Mureau, who denounces to in turn the silence of the institutions. Contacted by L’Express, the Ministry of Solidarity, Autonomy and People with Disabilities did not respond.