Question 12009 — people with disabilities

Summary

Ms. Claire Marais-Beuil draws the attention of the Minister of National Education to the need to improve the coordination of the different ministries in terms of disability prevention and management policy in schools. Recently, a dramatic case occurred, in this case the death of a child suffering from methylmalonic acidemia (MMA), a rare and invisible metabolic disease. His condition required stable schooling and secure as well as particular attention paid to the medical opinions concerning him. Despite the efforts of the hospital establishment which followed him to alert national education of the need to grant him suitable schooling, no satisfactory solution was provided. The various players in schooling - admissions committee, school psychologist and doctor, academy inspectorate - do not seem to having understood the seriousness of the situation. The child tragically died shortly after, victim of psychological shock and rejection of his liver graft. Due to a lack of appropriate support, sometimes leading to dramatic situations, parents are often forced to finance their children's education as well as AESH costs on their own. Faced with this abnormal situation, it is urgent to address the problem. In Consequently, she asks him to kindly provide an overview of the situation as well as to inform him of the measures that could be implemented in order, on the one hand, to ensure better consideration of the opinions of medical reference centers for schooling decisions and, on the other hand, to strengthen controls on educational establishments and, more generally, of the solutions to be provided to the difficulties. linked to the adapted schooling of children affected by rare diseases.

Machine translation from French. The official text remains authoritative.

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