“In the face of cancer, serious illness and disability in children, we must ensure equal opportunity.”

AGAINSTEvery year in France, several thousand children and adolescents suffer from serious illnesses such as cancer or an accident resulting in serious disability. This reality can last for months or years, sometimes with a tragic outcome.

This painful situation for families and siblings too often conceals a double penalty: the child’s illness or disability is compounded by the administrative burden and significant reduction in resources associated with the reduction or even cessation of his or her professional activities. activities that are inevitable given the gravity of the situation.

The state provides a certain number of social benefits, such as the Daily Parental Presence Benefit (AJPP), where progress has been made in recent years, or the Education Benefit for Handicapped Children (AEEH), the terms of which remain long and the conditions for allocation vary from year to year. one department to another. Parents regularly feel helpless when faced with complex procedures.

During this time, the charges do not subside. Worse, they may get bigger. Many families find themselves unable to pay their rent or mortgage. They may also incur significant costs for temporary accommodation near health centers when they are far away, or for expensive equipment needed by their child. Low-income and single-parent families are especially susceptible to these difficulties, leading some to forgo certain treatments or supports that are nonetheless necessary.

Zero charge left

We know that the legislator is not indifferent; in recent years, several bills have been adopted to improve support for families of seriously ill or disabled children, but they are incomplete. That is why we propose to take decisive action to guarantee equal opportunities for all children, regardless of the social background of their families:

• apply zero out-of-pocket expenses for children with serious illnesses and disabilities, provided it is a prescription issued by a physician as part of the child’s care;

• extend the response time of the departmental center for disabled people to two months upon request from AEEH, accompanying him “silence equals consent”. Currently, the law provides for a period of four months and one “silence is tantamount to refusal” ;
• allow a medical institution to offer a placement solution (paid for by the primary health insurance fund of parents or legal representatives) near the care facility for a seriously ill child, if justified by the geographical distance and duration of hospitalization. It will also be exempt from the deadline for submitting a request to the territorially competent regional health agency in favor of a tacit agreement in the case of pathologies such as childhood cancer that may require immediate and long-term care;
• provide for the suspension of monthly mortgage, real estate, car, or professional payments for parents who are forced to reduce or stop their professional activities to support their seriously ill child. Encourage banks to accelerate the implementation of monthly mortgage payments scheduled for summer 2025 in accordance with the decision of the Financial Services Advisory Committee in the face of these situations, and ensure that they are applied harmoniously when insuring one borrower to another. ;
• provide for the distribution of assistance, particularly AJPP, for divorced parents in joint custody, provided that the support for the seriously ill or disabled child is provided on an equitable basis and that the division is accepted by both parties. .

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