Charity dedicated to the fight
against childhood cancer
against childhood cancer
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, provides for the following 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 of seriously ill children who have taken out a loan . It provides for the possibility of suspending the payment of monthly payments in the event of obtaining the right to the daily parental presence allowance. Unfortunately, the scope of the article voted on in the chamber has been significantly reduced: although it clarifies the situation by indicating this possibility more clearly, parents are still forced to refer the matter to a judge. And the 1-month response period was not retained. The LFI deputies (who consider the owners as "rich and privileged") but also the government (for completely different reasons) were not in favour of this article, which nevertheless made it possible to protect the owners in the most difficulty from possible seizure in the event of an inability to pay the monthly payments, and from a refusal by the bank to postpone the monthly payments. It should be noted that referring the matter to a judge is time-consuming, with very long response times; It is not adapted to the situation of a parent fighting, for example, against a child's cancer. We therefore hope that the Senate will return to the initial article, which is much more protective and more adapted to the realities experienced by families.
- Article 2bis introduces additional concepts of protection for employees whose child suffers from a serious illness. Although the previous bill, voted and implemented, by Paul Christophe provided for protection equivalent to that of pregnant women, some deputies wanted to add the following mentions: "the employer must not take into consideration the state of health, which would require any leave for the serious illness, within the meaning of 3° and 4° of article L. 160-14 of the Social Security Code, of the dependent child of an employee to terminate his employment contract, including during a trial period or to pronounce a job transfer. He is prohibited from seeking or having sought any information concerning the state of health of the children in the care of an employee. The person applying for a job or employee is not required to reveal the state of health of his children, except when he requests the benefit of the legal provisions relating to the parent of a sick child. The recruiter is prohibited from seeking or having sought any information concerning the state of health of the children of the person concerned in the recruitment framework. When a dispute arises relating to the application of Articles L. 1225-65-3 and L. 1225-65-4, the employer shall communicate to the judge all the elements likely to justify his decision. When doubt persists, it shall benefit the employee who is the parent of a sick child."
- Article 2 ter (new, by amendment) aims to extend from 5 to 15 working days the leave for reporting the onset of a serious illness, such as cancer, for a child . This leave, obtained under the leadership of Béatrice Descamps, was 2 days. It had been increased to 5 days under the leadership of Paul Christophe and our association. The deputies therefore decided to go further, provided that the said amendment - the cost of which rests on the companies - is voted on in the Senate.
- 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 care establishment when the significant distance and the length of the hospitalization justify it. This would be without delay according to the administrators of the National Assembly. Similarly, day hospitalizations would not be incompatible with such care. On the other hand, a socialist MP wanted to provide a clarification, which tends to reduce the possibilities offered: "The healthcare establishment may delegate the service to a third party, either public or private non-profit, by means of an agreement." This means, in practice, that private accommodation not covered by an agreement could not be covered, even if the rent is reasonable. We hope that the Senate will reconsider this provision, while maintaining the rest of the article.
- Article 4 aims to conduct an experiment for families of dependent children affected by a disability requesting the AEEH (disabled child education allowance) . For a period of one year from the promulgation of this law, an experiment will be set up in twenty departments, including at least one overseas, to allow the silence kept by the commission mentioned in Article R. 541-6 of the Social Security Code for more than two months from the filing of the application for the disabled child education allowance to be considered a decision to accept it. This article, as validated by amendment, is realistic and adapted to the need. After this experiment, a national generalization of this major advance will therefore be planned, a real territorial equality of opportunity in the face of a child's disability: to date, the time taken to award the AEEH varies, for the same situation, from 2 to 12 months from one department to another.
- Article 4a, introduced by amendment by the socialist MP Sébatien Saint Pasteur, offers a broader and complementary advance to Article 4 with regard to the AEEH : "On an experimental basis, for a period of one year from the promulgation of this law, the disabled child education allowance and its fourth category supplement benefiting minor insured persons suffering from one or more disabling illnesses and the mobility inclusion card bearing the words "parking for disabled persons" mentioned in Article L. 241-3 of the Social Action and Families Code are granted to the legal guardians of said insured persons. The territorially competent regional health agency determines the structures authorized to grant said allowance and said card. These structures include hospitals. The allowance and card thus granted are notified to the departmental house for disabled persons and to the territorially competent family allowance fund. The granting of the allowance and the card is revised on the occasion of the decision of the Commission for the Rights and Autonomy of Disabled Persons. In the event that the said decision is more favourable, a regularisation is carried out within three months. This experiment is conducted in ten departments, including at least one overseas department. At the latest one month before the end of the experiment of this system, the Government submits to Parliament a report on the advisability and possibility of extending this system throughout the territory. A decree specifies the arrangements for setting up this experiment. The list of departments participating in the experiment is set by joint decree of the ministers responsible for health and local authorities."
- Article 5 corrects the adequacy between the maximum foreseeable duration of one year and the maximum compensation of 310 working days, i.e. 14 months , in order not to force families receiving the full-time daily parental presence allowance (AJPP) to make a new application for only 2 months. Similarly, a doctor may, in order to adapt to the needs of short-term support requiring work stoppage and therefore the AJPP, issue a certificate for 3 months. Ultimately, the words: "six months or more than one year" are replaced by the words: "three months or more than fourteen months" in order to offer, at the same time, greater freedom to the doctor in view of the child's medical situation while simplifying the procedures in the most serious situations, requiring continuous use, for 14 months, of the AJPP days.
- 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 aimed at exempting from property tax the parents of sick children who are below the income ceiling already provided for the elderly (i.e. below the minimum wage) was deleted by LFI and the left . This decision, denouncing a "tax loophole for wealthy property owners", was also supported by the entire left who had not understood the scope of this article, even though it was easy to examine. Indeed, it was limited, like the property tax exemption for people over 75, to the same income ceiling, located below the minimum wage. In practice, this exemption would have been granted in particular to single mothers or fathers who had to stop working completely to support their seriously ill child. Couples continuing to have a more comfortable income (for example, if one of the parents continues to work full-time) would not have been eligible, this exemption being "ultra social". We are surprised by this rejection, which goes against families in the greatest difficulty. We hope that the Senate will be kind enough to reintroduce this article.
- 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 it is a prescription established by a doctor as part of the child's care pathway. This includes in particular city therapies, such as psychomotor therapists, occupational therapists, psychologists and more generally, all medical auxiliaries. This is therefore a major step forward.
- Article 9a (new, subject to amendment) invites the Government to conduct a detailed assessment of the scope of this Act . Within six months of the promulgation of this Act, the Government will submit to Parliament a report proposing a detailed assessment of the scope of this Act and studying avenues for expansion in order to guarantee that the State and social security cover all direct or indirect costs incurred by parents of children suffering from cancer, serious illnesses or disabilities in respect of their children's serious illnesses. This report shall assess and consider in particular the arrangements for full coverage of the parents' travel, health, childcare and psychological monitoring costs.
- Article 9 ter (new, subject to amendment) specifies that within one year of the promulgation of this law, the Government shall submit to Parliament a report on the impact of combining the disabled child education allowance and its supplements with the daily parental presence allowance. The aim is to assess the possibility, under conditions that remain to be defined, of such a combination, which we do not consider desirable (our preference being for the allocation of rapid, sufficient aid and zero remaining costs so that the allowance is a replacement income for current expenses, and not for care not covered).
We warmly thank MP Vincent Thiébaut, the co-signatory parliamentarians and those who intervened during the writing of this bill based on the realities experienced by families and children suffering from serious illnesses, accidents in life and disabilities. We now hope that the Senate will quickly take up the subject.
Link to the full text and the entire legislative file: https://www.assemblee-nationale.fr/dyn/16/textes/l16b2570_proposition-loi
Video: https://videos.assemblee-nationale.fr/video.15908906_674f67488bab2.3eme-seance--optimiser-la-protection-et-l-accompagnement-des-parents-d-enfants-atteints-de-cancers-3-decembre-2024
