As a privileged partner of the competence center for chronic and malformative conditions of the esophagus (CRACMO), the French Association for Oesophageal Atresia (AFAO) has developed in 2021, with the support of the Health Insurance (National Fund for Health Democracy), a financial and social aid simulator for carers, which takes into account the situation of the carer and that of the person being cared for.
> Test the aid simulator for assisting families
Many aids often ignored
Emergency hospitalisation of children born with oesophageal atresia – a rare disease that affects 1 in 3000 people – is frequent. These hospitalisations cause additional costs for the parents on the family budget (transport, accommodation, care of siblings, work stoppage, etc.). In France, there is however help available but it is often ignored.
« At the university hospital, we are supported in setting up the file for access to aid. But once we get home, it becomes an obstacle course, we ask around to find out what our rights are, we fill in documents that can sometimes be very complicated and long. We are already busy enough with our children, this administrative overload weighs on us as carers, especially when it is up to us to find the information », says a mother of a child operated on for oesophageal atresia.
Social assistance law is too complex
There are many forms of assistance, but there are also many administrative procedures and conditions to access them. To alleviate this problem, each aid item in the simulation result is accompanied by a hypertext link redirecting the user to the organisation providing the aid. The aim of the simulator is ultimately to make this aid visible, to make it known, and to give users the tools to claim their rights.
« I find it unacceptable and intolerable that this law is so complex when it is intended for the most vulnerable people. » Mila Petkova, lawyer at the Paris bar and member of the legal team that built the legal database of the simulator.
« […] we note […] a great dispersion of actors and therefore of people from whom one can request help, which themselves are very numerous and fragmented. » Clément Cousin, lecturer in private law and criminal sciences at the UCO and member of the legal team that created the simulator’s legal database.
Key figures :
→ 11 million carers in France (Ipsos/Macif 2020 national survey)
→ 3 million people live with a rare disease in France (Alliance Maladies Rares)
→ 19 million people live with a chronic disease (including rare diseases) (Ministry of Solidarity and Health)
→ 160 to 200 newborns per year are born with oesophageal atresia in France
Source : AFAO
