They concern 6 to 8% of children, ie up to two to three pupils per class. “Dys” disorders, otherwise known as specific language and learning disorders (TSLA), constitute a public health priority, estimates the High Authority for Health which published in 2018 a “Health trail guide” pediatric to help with “Effective implementation of a coordinated, fluid health course centered on the needs of the child”.
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Two years later, families still testify to the obstacle course to obtain a diagnosis. Overcrowding of professional practices, lack of coordination between the various specialists, high cost of care … “The framework does not exist. To date, there is no structure other than the CHUs which brings together enough specialists and coordinates them in favor of monitoring children ”, notes Nathalie Groh, president of the French federation of dys.
A three-year experiment
To answer this, the Occitadys association, located in the Occitanie region, has just set up, with the regional health agency, a “TSLA Occitanie health course” to improve the detection of disorders, the training of doctors, but also financing of care. Experimented for three years with 10,000 children, it should then be extended, if the results are convincing, to all of France.
“If such a device had existed, I would have been a more fulfilled mother, I would have had less to turn my professional life upside down to help my son, testifies Nadia Chebaiki, mother of a dys child whose neurodevelopmental disorders were slow to be diagnosed. At school, no one understood him. My son was treated for epileptic seizures, but over the years, motor and language difficulties, both written and spoken, appeared. The diagnosis of dyspraxia was not made until very late. “
It considers in particular that “Teachers are not sufficiently trained in these disorders”. For the president of the French federation of dys too, “School is the key, but a clarification of the role of each is necessary”.
Train first-line contacts
From educational teams to family physicians, including pediatricians and school psychologists, the TSLA course provides for the training of 600 first-line contacts. “In the articulation of the system, these professionals will then become referents, known to their colleagues. We have enormous communication work to do in parallel, in particular through the regional Union of health professionals ”, explains Laurent Raffier, project manager of the TSLA course.
The stake is twofold: “It’s a question of‘equal access to care, but we must also prevent families from being lost in the process: a child who has been taken care of early will avoid an overhandicap ”, he explains. Failure to diagnose can indeed cause comorbidities in children: according to the French Federation of Dys, 93% of these children suffer from anxiety and 30% are subject to depression.
Finally, the experiment also includes the question of costs. If we add the sessions of psychomotricity, speech therapy, orthoptist, occupational therapist and psychology – professions in the first line of diagnosis -, the bill can rise to more than € 1,000 for families, according to Occitadys . However, only speech therapists and orthoptists are covered by social security, on medical prescription.
“Because of the cost, there is a renunciation of some families. Others sacrifice their professional life to manage and run to medical appointments ”, deplores Nathalie Groh. The experienced course includes reimbursement of 35 sessions, renewable twice, with these practitioners.