"'When does your son expect to be better?' the insurance company asked me while my son was in the ICU."

"'When does your son expect to be better?' the health insurance company asked me when my son was in the ICU." This is how Myriam's painful story begins, as she struggles to maintain CUME , the benefit for caring for minor children with cancer or another serious illness .

This is assistance for these families that compensates for the loss of income by reducing their working hours. This 50% reduction in minimum hours can reach 99.9%, meaning they would receive almost their full salary.

But, and here is the nuance, although this aid is recognized by law at the State level in RD1148/2011, it is granted, managed and extinguished by the collaborating mutuals of Social Security, which review every 4 months with the presentation of medical reports, if the families should receive the benefit in their opinion .

But just because a patient is stable or goes to school doesn't mean the child is healthy. In the case of 6-year-old Jaime, he was born with Apert syndrome, has a recognized 75% disability with grade III dependency, and has spent much of his life in the hospital, undergoing 44 surgeries in his first five years. Shortly after enrolling in CUME, this woman began receiving calls from the mutual insurance company questioning the seriousness of her son's condition after spending eight months in the hospital.

"An administrator from the mutual insurance company called me and said, 'Hey, I don't have your discharge report. How is it possible that a child has been in the ICU for so long?'" The doubt about whether the medical documentation presented was genuine was compounded by the anguish felt by this mother and her family, who had had to say goodbye to Jaime after he suffered a brain hemorrhage. "The last time I told him, look, if you want to take away my CUME, take it away. I'm not going to work, my son is dying, and I'm not going to abandon him in the hospital," she says.

Miryam currently maintains her CUME (Center for Medical Education) while Jaime, a miracle who thrives with the love of his family and her strength, has started school. But this mother's motherhood isn't like any other; it's atypical, and that means she's become a caregiver, nurse, therapist, administrator... "My son is treated by 23 specialists, so even if he has just one checkup with each of them a year, that's 23 hospital checkups. If each one orders at least one test, that's 46 visits."

Added to this are the therapies that consume a large portion of the benefits received. "If I didn't have CUME, we would have to live on my husband's salary, and then my son and I would have fewer opportunities to receive care, and a person who doesn't have the opportunity to receive proper care would die," she recalls.

Families also report that the numerous rejections or withdrawals they have suffered "have been met with hurtful phrases such as: 'You decided to bring this child into the world knowing that he was sick so you could collect a small allowance, and this isn't going to happen'; you've had enough time to train him in his control; 'You're not going to stay home for that, are you?'" phrases that led to the emergence of the ASFACUME Association to respond to the vulnerability the group was experiencing in defending their rights.

Like Myriam, more than 15,000 families nationwide currently benefit from the CUME benefit. "From the outside, it might seem like a 'treat' of a little money you can collect without having to go to work, but I can assure you from the inside, living with the reality of disability, that it means recognizing that your child is dependent and needs you as a caregiver, 24 hours a day, seven days a week," this mother emphasizes.

Next Monday, September 22, ASFACUME will present, at a meeting with the Minister of Inclusion, Social Security and Migration, Elma Saiz, "the situation of extreme abuse of power that Social Security is aware of and that allows such negligent actions by collaborating mutual insurance companies." Along with Miryam's testimony, thousands more cases will demonstrate the fear and emotional exhaustion suffered by families in the face of "the blatant abuses committed by mutual insurance companies," as the CUME Family Association firmly states.