Question 17568 — people with disabilities

Summary

Mr. Romain Eskenazi draws the attention of the Minister of Health, Families, Autonomy and People with Disabilities to the administrative and financial difficulties encountered by families of children suffering from a rare and disabling disease. The situation of Romy, a 5-year-old girl living in Val-d'Oise, offers a concrete illustration of this. Diagnosed on May 7, 2026, she suffers from SHINE-DLG4 syndrome, a disease rare genetics which only concerns around thirty children in France and around 250 worldwide. This pathology combines sleep disorders, neurodevelopmental disorders, intellectual disability and epilepsy and has earned it recognition as more than 50% disabled by the departmental center for disabled people (MDPH). Despite eight rehabilitation appointments per week, Romy remains in mainstream school, in an inclusive logic, with the support of a medical-educational institute (IME) operating outside the walls, within the school. Maintaining this balance, precious for the child, relies largely on the involvement of both parents, who work full time. However, two difficulties, common to many families, weigh heavily on this support. Firstly, the connection between parental leave (CPP) and The daily parental presence allowance (AJPP) places working parents in a very restrictive situation. The CPP gives the right to a maximum of 310 days of absence over a period of three years, up to a limit of 22 days per month. The AJPP, paid by the family allowance fund upon monthly declaration of the number of days taken and upon certification from the employer, amounts to a fixed amount of around 66 euros per day. This amount remains much lower than the usual salary, so that recourse to this system results in a significant loss of income, particularly heavy when both parents work full-time. Added to this financial loss is a repeated monthly administrative process and uncertainty over payments, sources of fatigue and additional mental burden for families already suffering. A A simpler and more protective mechanism would consist of allowing salary to be maintained by the employer, with the latter then being reimbursed by the family allowance fund, like the subrogation already practiced for daily social security allowances. Such a development would eliminate the loss of income and significantly simplify procedures. Secondly, the rights opened by the MDPH must be the subject of periodic renewals, even though SHINE-DLG4 syndrome is an irreversible genetic disease, the nature of which will not change during the child's life. The decrees of December 24, 2018 and December 27, 2019, however, allow the granting of certain rights without time limit, or for long periods, when the disability is not likely to develop favorably. However, many families of children affected by irreversible genetic pathologies remain subject to regular reviews of their file, without the child's state of health justifying such a repetition. These renewals represent a significant administrative and psychological burden, with no real benefit for the child. Consequently, he asks it to indicate, on the one hand, the measures that the Government intends to take to simplify the payment of the AJPP and avoid families affected by a loss of income, in particular through a salary maintenance mechanism by the employer combined with reimbursement by the family allowance fund; on the other hand, the provisions envisaged to guarantee the effective and systematic application of the attribution of long-term rights, or even without limitation of duration, to children suffering from rare genetic diseases not susceptible to a favorable evolution, in order to spare their families from repeated and unjustified renewals.

Machine translation from French. The official text remains authoritative.

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