Every year, in France, thousands of children and adolescents are affected by a serious illness, such as cancer or a life-altering accident resulting in a 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 often a double penalty: in addition to the child’s illness or disability, there are administrative burdens and substantial loss of income, due to a reduction or halt in their professional activity, which is unavoidable given the severity of the situation.
The State provides a number of social benefits, such as the daily parental presence allowance (AJPP), which has seen improvements in recent years, or the education allowance for disabled children (AEEH), which still has long delays and unequal conditions of eligibility from one department to another. Parents often feel helpless in the face of the complexity of the procedures. Meanwhile, expenses do not decrease. Worse, they can increase. Many families find themselves unable to pay their rent or mortgage. They may also incur significant expenses to temporarily stay near healthcare centers when they are far away, or to acquire expensive equipment that their child needs. Low-income and single-parent families are particularly exposed to these difficulties, leading some to forgo essential therapies or support.
We know that the legislature is not indifferent, with several laws being passed in recent years to improve support for families of seriously ill or disabled children. However, these measures are incomplete. Therefore, it is proposed that strong measures be put in place to ensure equal opportunities for all children, regardless of their family’s social background. These measures include implementing a zero out-of-pocket cost for children with serious illnesses and disabilities, as long as it is prescribed by a doctor as part of the child’s care plan.
Other proposed measures include extending the response time from the departmental house for disabled persons for an AEEH request to two months, with a “silence equals agreement” clause. Currently, the law specifies a four-month response time and a “silence equals refusal” clause. It is also suggested to allow healthcare facilities to offer accommodation solutions (covered by the primary health insurance fund of the parents or legal guardians) near the medical facility of the seriously ill child, when geographic distance and duration of hospitalization justify it.
Furthermore, it is recommended to suspend mortgage, car, or professional loan installments for parents who need to reduce or stop their professional activity to care for their seriously ill child. Banks are encouraged to expedite the implementation of mortgage payment coverage, planned by summer 2025 following a decision by the Financial Services Advisory Committee, in these situations. Additionally, there should be provisions for sharing benefits, including the AJPP, for divorced parents in joint custody, as long as it is proven that the care of the seriously ill or disabled child is carried out equitably and agreed upon by both parties.
