Vincent Henry, a child psychiatrist at the Montpellier University Hospital, has just created an association, Addena, unique in France: it helps parents of disabled children with care that is unsuitable for their situation to take the State to court. Saadia Afakir, mother of an autistic teenager, gives her testimony.
Ten years after the law “for equal rights and opportunities” of February 11, 2005 which “requires the state to put in place the necessary means for the reception and schooling of all children with disabilities”, professionals in childhood and disability are throwing a spanner in the works: “In principle, we are talking about non-discrimination, the disabled child referred to an adapted structure must be welcomed there. In reality, there is still a gap between the demand and the concrete possibilities of care”, notes Dr. Vincent Henry, child psychiatrist at the Montpellier University Hospital.
To “change” the situations, the doctor, supported by a lawyer, a jurist, a social worker, the president of the Halte Pouce association and parents, have just created the Addena association, “dedicated to defending the rights of children and adolescents with a neurodevelopmental disorder”.
“We are not going to find more places quickly”, warns the doctor. But “by putting pressure”, he is projecting himself “in the long term”.
How ? By seeking compensation from the State via a “compensatory action” for “failure to provide care”of a child with a neurodevelopmental disorder, who benefits from a notification from the MDPH (Departmental House for Disabled People) to integrate an IME (Medico-Educational Institute, for mental retardation or severe autism), Itep (Therapeutic, Educational and Pedagogical Institute, if there is a behavioral disorder), Sessad (Special Education and Home Care Service).
Due to lack of space, they are not taken care of in the structure adapted to their disability. “In the IMEs, there is a wait of up to four years… families find themselves without schooling for their child all this time, who sometimes only have two or three hours of school per week”, specifies Dr. Henry.
How many children concerned ?
“Neurodevelopmental disorders affect 10% to 15% of children”, says Solange Colas, from the Halte Pouce association, a resource center for “families affected by disabilities”. “For most families, the support of an AVS and speech therapy sessions are enough. We intervene in more complicated situations”, explains Solange Colas.
A reality that is difficult to grasp. But this is where most of the blockages appear:“It takes four to eight months to put together a file with the MDPH, then four to seven years of waiting to join an establishment”, says Solage Colas.
“When we make a diagnosis and refer families, we often get this type of feedback: “You told me to go see a speech therapist, I called 18, none of them can take me. Or else, “I have a referral notice to an IME, I am told I have a four-year wait”, reports Dr. Henry. In the report “Early identification and management of mental disorders in children and adolescents”, published in 2020, the Regional Center for Studies and Information on Health and Disability (CREAI/ORS) reports a “lack of speech therapists in all departments, even the best-equipped”.
In Hérault alone, the doctor reports, based on official data communicated in the summer of 2022, a capacity of 920 places in EEAP/IME/IEM, establishments which accommodate children with severe disabilities. At the same time, 1,608 families had open rights to access these establishments.
For the Sessad, the capacity is 1,071 places, well below the open rights, 3,621.
“The situation must have gotten worse since”, estimates the doctor.
At the start of the 2023 school year, the Ministry of National Education indicated that “more than 436,000 students with disabilities are welcomed in schools”. A figure “out of step” with reality “, insists Me Betrom.
“The parents gather the documents in the file, they don't have to pay anything, we take care of everything”, indicates Gaëlle Betrom, lawyer of the association, who explains that“the administrative courts consider that there is a deficiency if the situation is not suitable”.
Based on case law, it announces compensation of between “20,000 euros and 150,000 euros”. With a waiting period of “18 to 24 months before the administrative court”.
200% Deposit Bonus up to €3,000 180% First Deposit Bonus up to $20,000The situation is well known: in a decision communicated on April 17, 2023, the European Committee of Social Rights considers that France violates the European Social Charter, and does not respect “the rights of people with disabilities”.
“We feel like we are non-existent, so we are doing this appeal to exist”
Saadia Afakir, mother of Jassim, 14, who has severe autism, is one of the first to join the system, unique in France, which is starting in Hérault.
Jassim and his mother, Saadia, on January 8, in Castries: she has taken legal action with the help of Addena and is seeking compensation. Midi Libre – MICHAEL ESDOURRUBAILH
Her situation is a textbook case: “For two years, my son was integrated, by default, into the Ulis class of a middle school, with a pedagogical organization adapted to the disability, but insufficient for him. He had been on the waiting list for a place in IME since 2019, the situation was not resolved in December 2024”.
While waiting, the teenager's health deteriorated, the mother had to stop working. “The consequences are financial, economic, mental… We feel like we're disappearing, we're non-existent. So we don't necessarily do this appeal for the financial side, we do it to exist”, explains the Héraultaise, one of the first families supported by Addena, around fifteen others have taken a similar approach while the psychiatrist estimates that “500 to 700 are concerned in Hérault. We're looking at 40 to 80 cases per year”.
As with Jassim, in the majority of cases, an alternative to the MDPH referral has been put in place, but it is not satisfactory, “a child will be welcomed one day a week in a school when he should be joining an IME”.
Saadia Afakir: “I no longer recognized my son”
"My child never said "mom", "yes", "no"&hellip he had a shifty look"… for Jassim, the diagnosis of autism is obvious, it is made very early, when the child is three years old. Saadia Afakir, her husband and her two children, Jassim is the youngest, then live in Vaucluse. The care is initially fluid, the child enters the middle section of nursery school, an AVS, school life assistant, at his side.
In 2018, the "single mother" arrived in Hérault, with her eldest daughter and her son, whom the departmental house for disabled people (MDPH) referred to an IME. "I applied throughout the region", remembers the young woman, who found an alternative in a private school in Jacou, Parents-Thèse : "He was in school from Monday to Friday, ate in the canteen. I was able to start working again". In a private laboratory, on the management of clinical research data.
"In a few months, there will be no more solution for Jassim" : when Parents-Thèse announces to Saadia Afakir that her son will have to leave the establishment, the situation changes: “I found myself facing a wall. I reactivated all the IME files, I knocked on all the doors, but I had to negotiate a dismissal while my work was passionate to me, and our family fell into absolute distress. For the first time in my life, I had a breakdown, I consulted a psychologist", says the Hérault woman, who can't find the speech therapist or the specialist educator she recommends to support her son: "They're saturated".
By default, Jassim joins a Ulis, a specialist class in a middle school. Despite the kindness of the educational team, “very attentive”, the situation becomes even more complicated: “I would drop him off at school, and I would end up waiting in the parking lot, because after 20 minutes, the situation was no longer manageable. I no longer recognized my son, his behavior changed, I saw him regress in his skills, he was putting himself in danger".
The good news came a few days ago, at the end of December: Jassim is joining an IME in Palavas-les-Flots. "My life is going to change", said his mother, relieved to be assisted in her legal proceedings: "We know that we are in an unfair situation, but it is difficult to take further steps, find a lawyer… I am suing the State for failure to provide care, for my son, but also for my daughter, who has also suffered greatly from this situation.
“We are not in a position to attack at all costs. We are attacking the State, because the problem is systemic, and we are not questioning the goodwill of the actors on the ground, nor the professionals of national education who are doing what they can. We only intervene when there is a clear failure, for severe neurodevelopmental disorders, autism, ADHD, intellectual disability, “dys”… and for ethical questions, I do not include my patients”, specifies Dr. Henry, who is triple motivated: “Because there must be recognition, even symbolic, of the harm, because the financial issue is not trivial and many families are in precariousness”, because “disorders appear because of the lack of support charge”.
Finally, he hopes that similar initiatives will flourish in France, forcing, “in the long term”, the authorities to move: “We have little room for maneuver to change things”.
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