“Faced with cancers, serious illnesses and disabilities in children, we must guarantee equal opportunities”

“Faced with cancers, serious illnesses and disabilities in children, we must guarantee equal opportunities”
“Faced with cancers, serious illnesses and disabilities in children, we must guarantee equal opportunities”

VSvery year, in France, several thousand children and adolescents are affected by a serious illness, such as cancer or a life accident leading to major disability. This reality can last for months or years, sometimes with a tragic outcome.

Behind this painful situation for families, but also for siblings, there is too often a double penalty: the child’s illness or disability is compounded by administrative burdens and substantial reductions in resources, linked to a reduction in , or even a cessation, of their professional activity, unavoidable given the seriousness of the situation.

The State provides a certain number of social aids, such as the daily parental presence allowance (AJPP), which has benefited from progress in recent years, or the education allowance for disabled children (AEEH), whose deadlines remain long and the conditions of allocation, unequal from one department to another. Parents regularly feel helpless when faced with the complexity of the procedures.

During this time, charges do not drop. Worse, they can increase. Many families find themselves unable to honor their rent or mortgage. They may also incur significant costs for temporary accommodation near health centers when they are far away, or to acquire the expensive equipment their child needs. Low-income and single-parent families are particularly exposed to these difficulties, leading some of them to forgo certain therapies or support that is nevertheless essential.

A zero charge remaining

We know that the legislator is not indifferent, several bills having been passed in recent years to improve support for families of seriously ill or disabled children, but they are incomplete. This is why we propose that strong measures be put in place to guarantee equal opportunities for all children, regardless of the social background of their families:

  • apply zero out-of-pocket costs for children suffering from serious illnesses and disabilities, as long as it is a prescription established by a doctor as part of the child’s care pathway;

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  • extend the response time from the departmental center for disabled people to two months for a request from the AEEH, accompanying it with a “silence equals agreement”. To date, the law provides for a period of four months and one “silence equals refusal” ;
  • allow the health establishment to offer an accommodation solution (covered by the primary health insurance fund of the parents or legal representatives), close to the care establishment of the seriously ill child, when the geographical distance and the duration of hospitalization justify it. It would also be exempt from the deadline for requesting the territorially competent regional health agency, in favor of a tacit agreement, in the case of pathologies, such as pediatric cancers, which may require immediate and long-term care;
  • provide for the suspension of monthly mortgage, real estate, automobile or professional payments for parents who must reduce or cease their professional activity to support their seriously ill child. Encourage banks to accelerate the implementation of the payment of monthly mortgage payments, planned by the summer of 2025 following a decision by the Financial Services Advisory Committee, in the face of these situations, and ensure that its application is harmonious from one borrower insurance to another;
  • provide for the sharing of aid, in particular AJPP, for divorced parents in shared custody, as long as it is demonstrated that the support of the seriously ill or disabled child is carried out in an equitable manner and that this sharing is accepted by both parties.

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