Families of sick children: Paul Christophe's report - 17 avril 2022

RV at the National Assembly with Stéphane Vedrenne (Eva for life), Stéphanie Ville (Aidons Marina), Wilfried Briand (expert in financial and insurance issues for EPLV), MP Paul Christophe and a representative of IGAS to present, at the request of the Prime Minister, a report containing 35 proposals to improve the daily life of families of seriously ill children, victims of an accident

When we created Eva, pour la vie, we first committed ourselves to the problem of funding research into childhood cancers, our in-depth investigations - consolidated by the work of researchers and then parliamentarians - allowing us to claim that it was too weak.

Then quickly, we discovered other realities: raising the AJPP to the level of the SMIC, over the actual duration of the illness, and extending the public death benefit to children (it was then reserved for the beneficiaries of salaried adults) part of the changes to be obtained. These advances will have been achieved by the end of 2021.
The proliferation of testimonials from parents and committed associations made it impossible to stop there. How to accept, for example, that a family of a sick child can be evicted because they can no longer pay their mortgage or their rent, and that nothing is planned to protect them? That it takes 6 months to obtain a disabled parking card where it takes less than 5 days to obtain a Crit'air sticker? That the AJPP or the MDPH aid take months to be granted, at the cost of cumbersome procedures? That the CAF does not accept that social assistance takes the lead directly to do the work on the phone and relieve the family? That aid sometimes arrives after the child's death when it could be granted tacitly? That an orphan or foster child find themselves alone during treatment? That schooling is often sacrificed during the child's illness? That a family who lives several hundred kilometers from the place of care cannot benefit from assistance to find accommodation near the hospital?

This is why it was natural to involve elected officials in a global way. Very committed to the issue of caregivers since the beginning of his mandate in 2017, MP Paul Christophe mobilized, being entrusted with a government mission dedicated to the issue of support for families of seriously ill children, victims of an accident of life, more particularly when they have to reduce or stop their work, and therefore their income.

Ministries, founding associations of Grandir sans cancer , professionals (teachers, social workers, etc.) and institutions were interviewed as part of this exemplary mission. Some of the proposals:

  • That the agreement (for social benefits such as the AJPP) is deemed favorable (and therefore accelerated, as is the payment of aid) and that the control is carried out a posteriori (knowing that the rate of fraud is almost non-existent ). The urgency is particularly strong when it comes to cancers, for some incurable…

  • Accompany the development of the insurance offer to integrate the indirect risk linked to the loss of income associated with the illness of the child in the borrower insurance contracts.

  • Improve family protection against the risk of unpaid rent, breach of lease, foreclosures and eviction.

  • Change the labor code to strengthen the protection of the employees concerned.

  • Review the system for covering parents' travel expenses and parking near the hospital (often chargeable today)

  • Pay for accommodation near the hospital for parents or legal representatives, depending on the distance and duration of hospitalization.

  • Promote the establishment of Maison des parents near specialized care centers

  • Improve the conditions for covering expenses associated with the disease through experimentation in a "100% health" approach (no remainder payable after combined intervention of the compulsory health insurance and the complementary health insurance (this concerns especially the reimbursement of benefits related to the child's disability, which is often found with illness).

  • Substantially improve access to home schooling for seriously ill children: Create in each academy a "volunteer base" for home educational assistance on a national scale.
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