New bill for families of seriously ill children - 02 mai 2024

Every year in France, several thousand children and adolescents are affected by a serious illness, such as cancer, or by an accident resulting in a major disability. This reality can last for months or even years, with sometimes tragic outcomes.

Behind this painful situation, which impacts these families but also the siblings, there is too often a double penalty: in addition to the illness or disability of their child, there are administrative burdens and substantial reductions in resources linked to a reduction or even a cessation of their professional activity, which is unavoidable given the seriousness of the situation. Meanwhile, the costs do not decrease, which leads to difficulties.

Faced with this situation, the State provides a certain amount of assistance, but it is often unsuited to the urgency of the situation. Families must multiply the steps with the administration, face waiting times of several weeks, even several months for the MDPH to benefit from their rights in terms of financial or educational support or even to obtain a disability card for their child. They also sometimes suffer from the lack of understanding of their debtors. Parents' associations intervene punctually, but they do not have the power and the means to replace the State.

This bill, drafted in close collaboration with the association Eva pour la vie and the Grandir Sans Cancer federation, which brings together nearly a hundred parents' associations, as well as researchers, doctors, social workers and professionals, would, if passed, make France exemplary for these families, by implementing significant progress :

- Article 1 aims to extend the assistance provided by the community to access or maintain decent and independent housing and to have access to water, energy and telephone services.

- Article 2 concerns parents who have taken out a loan . It provides for the possibility of suspending payment of the capital portion of the monthly payments in the event of obtaining the right to the daily parental presence allowance provided for in Article L544-2 of the Social Security Code. It then applies to other co-borrowers to avoid transferring the burden to the second parent. This suspension of repayment is intended to reduce the financial burden on parents. It also makes it possible to avoid a future financial risk at the end of the payment of the allowance by maintaining the credit system and the payment of its interest while extending its duration.

- Article 3 aims to allow the healthcare establishment to be able to offer an accommodation solution to parents or legal representatives, close to the child's healthcare establishment when the significant distance and the duration of the hospitalization justify it, while being exempt from the deadline for requesting it from the territorially competent regional health agency, in favor of a tacit agreement. Indeed, the deadline set at thirty days for this service provided for in Article R6111-50 of the Public Health Code is unsuitable for situations requiring urgent care.

- Article 4 aims to conduct an experiment on the system mentioned in Article R541-6 of the Social Security Code for families of dependent children affected by a disability . This experiment increases the response time to two months, a time limit adapted to the processing time of the medical file and the needs of the families. Furthermore, it will also be accompanied by a "silence is consent" and no longer a decision of rejection.

- Article 5 corrects the adequacy between the maximum foreseeable duration of one year and the maximum compensation of 310 working days, or 14 months , in order not to force families receiving full-time daily parental presence allowance (AJPP) to make a new request for only 2 months.

- Article 6 adapts the payment of the daily parental presence allowance to the cases of children in alternating residences . Indeed, with the increase in divorces, both parents are sometimes required to continuously care for a disabled or seriously ill child and the terms of payment of the current daily parental presence allowance oblige separated parents to take paid or even unpaid leave.

- Article 7 aims to exempt from property tax parents of sick children who are below the resource ceiling already provided for the elderly.

- Article 8 aims to ensure free parking at healthcare facilities for families caring for children with a serious illness.

- Article 9 allows for the application of a zero remaining charge for children suffering from serious illnesses , provided that the prescription is issued by a doctor as part of the child's care pathway.

Link to the full text: https://www.assemblee-nationale.fr/dyn/16/textes/l16b2570_proposition-loi