“Our son will not have school for the third year in a row”, “Our son has been out of school since 2018”, “I have a disabled child and unfortunately I cannot find a place” … On marentree.org, the testimonies of parents of disabled children accumulate, in the wake of the #jaipasecole campaign, launched by Unapei, French associative movement which brings together 550 associations around disability. In Ile-de-France, the situation is no better than elsewhere, with its specific departmental features. 20 minutes has collected the testimony of three families whose children have been referred to unsuitable structures, or who have no solution for the start of the school year.
This is the case of Ewa Grajner, mother of Filip, 7 years old, diagnosed with autism at 22 months, and who lives in Villemomble, in Seine-Saint-Denis. He is what we call “non-verbal”: he does not speak at all and communicates by pointing with his finger, with pictograms. “He will probably never be able to read or write. Maybe never speak ”, explains his mother, and this is the reason why her son needs a structure which supports him with occupational therapist, psychologist, psychomotor therapist, speech therapist, etc. for it to progress.
For four years, Filip was properly cared for at the day hospital in Neuilly-sur-Marne according to his mother, at a rate of 32 hours per week. But last July, the follow-up stopped, and despite the efforts of the parents for a year, it was impossible to find a place in a medico-educational institute (IME), the only structure adapted to the eyes of Filip’s parents.
At the IME of Soubiran, however in their department, they were even told that their home was outside the “geographic sector” of the institution, which is not however supposed to sectorize. In July, an agreement between the National Solidarity Fund for Autonomy (CNSA), the Seine-Saint-Denis department and the MDPH was signed to improve processing times.
“It goes against the right to the child”
Other parents have found a solution, but at the cost of costly financial sacrifices. This is what happened for Marie *, mother of a little Mégane * aged 7 and a half, with a rare genetic syndrome, which again requires multidisciplinary care. To educate the child, Marie, who lives in Paris, decided to hire a private assistant for disabled students (AESH), the school principal having clearly told her, according to her testimony, that the child would not be taken to school with an AESH from National Education, which receives only 60 hours of training.
“This goes against the right to the child, it is as if we said” your child will not fit in that class because we do not have the right teacher “. It’s up to the school to adapt, not to the family, ”protests Sonia Ahehehinnou, vice-president of Unapei.
In the meantime the child had started to mutilate himself
Inadequate care can turn out to be catastrophic and make the situation even more difficult for families of disabled children, and especially children themselves. This is what happened to Luc *, an 11-year-old autistic child, who lives in Val-de-Marne. Originally educated at school according to the story of his father Sami *, the child had to undergo incessant changes of class, the teachers of the establishment having refused to take care of him for more than an hour in a row. . To which were added several changes of teachers, parties on maternity leave.
“The child psychiatrist alerted the school doctor the day after the start of the school year that this was going to increase the child’s troubles”, explains Sami, but it was not until December, when the deputy and Defender of Rights came, that the child was allowed to enter a class normally. In the meantime the child had started to self-mutilate, and it was finally decided to take him out of school. At the start of the school year, “inclusive school” training will become compulsory for all new teachers.
“We are in the process of creating complex cases, all because the system is basically not suitable for children,” laments Sonia Ahehehinnou. And Luc, who had been following lessons by the Cned since then, is now also deprived of this resource, according to his father, because the Departmental House for the Disabled (MDPH) notified Ulis class schooling in July, while the last allocation committees are held in June, he reports.
Territorial inequality
Waiting times can be very long, up to 4 years, and vary depending on the department, causing territorial inequality. “All the departments do not invest in the same way for the management of the handicap and the schooling: the Val-d’Oise and the Yvelines have less implication than the Seine-Saint-Denis or the Val-de -Marne ”, explains Bruno Lefebvre, president of Unapei Ile-de-France. The delays are the longest in the Val-d’Oise: it takes four years for a place in a medico-educational institute, against “only” a year and a half or two years in Seine-et-Marne or in the Essonne.
For a place in an ordinary school environment, it is in the academy of Versailles where it is most difficult, because of a lack of AESH, according to Bruno Lefebvre. “Children are said to be ‘in school’ but are in fact only half a day a week. “
Families sacrificed
The children toast, but so do the families. Ewa Grajner, who was an executive assistant in a supermarket, had to stop working, just like Marie. “I couldn’t organize my daughter’s agenda until 2 am every day,” she says. The holidays follow for the latter the rhythm of her daughter’s therapies: “Fifteen days in Spain last year for intensive care in a clinic, this year in Brittany for neuro-functional rehabilitation in a specialized center which does a lot of pediatrics. and neurology. “Not to mention the financial efforts: Mégane’s“ vacations ”cost between 2,000 and 3,000 euros, and are not reimbursed by Social Security. On a daily basis, as Marie has chosen to be financially assisted for human care, the care she may require for her daughter is not reimbursed to her. You had to choose, it was one or the other. “You can’t combine the two,” she explains.
Families who face these problems are often overworked, exhausted. Sami, Luc’s father, also put his teaching profession on hold to teach his son at home, but he was overtaken by stomach ulcers, which he attributes to the stress generated by the situation of her child. Double sentence, he was then declared unfit for any public service for life following the passage of an expert, according to his testimony, a decision against which he is now fighting in court. “Any mother will say that she is ready to commit suicide when she has to redo a file at the MDPH”, Marie abounds.
What does the government do ?
Opposite, the Minister of Education highlights the increase in the number of assistants of children with disabilities (AESH), from 70,000 to more than 120,000 today. But these numbers are widely disputed by parents we interviewed, who say they see no progress on the ground. “On paper it’s magnificent, but we do nothing,” laments Ewa Grajner. “Inclusion as we want to show it to us today is the opposite of what we want to show us in the field,” adds Sami.
For Sonia Ahehehinnou, “the school will only be truly inclusive when there is a very concrete assessment of the needs in the field”. The government affirms that 12,000 disabled children encounter difficulties in taking care of them at school each year (out of 385,000 children with disabilities enrolled in ordinary classes at the start of the 2020 school year) but Unapei considers that the figures are largely underestimated, because they encompass all support, including those deemed deficient or insufficient by the parents. Contacted by 20 minutes, Minister Sophie Cluzel’s office confirms that it is indeed the hours prescribed by the MDPH that are counted, and not the actual hours.
* The first name has been changed