"The mutual insurance company told me they won't give a "supplement" to everyone who has a sick child."

BarcelonaInformation about the CUME (National Insurance Benefit), a benefit received by parents who must care for children with serious illnesses, circulates among families as classified information. The Spanish government has had it under the Social Security umbrella since 2011, but these families complain that hospitals or social services often don't know that they can qualify for a reduction in working hours of at least 50% while receiving their full salary so they can dedicate themselves to accompanying their child to the doctor or keeping an eye on them. They also complain that the labor mutual insurance companies pressure them to return to work as soon as possible and have the final say, even overriding a medical report.

"We won't give a stipend to everyone who has a sick child," María recalls the staff at her mutual insurance company telling her when they denied her the benefit. "I had to restrain myself from crying in front of him, but now I know it's his." modus operandi", he emphasizes. He has an eight-year-old son with a disordergrade III autism spectrum and another severe behavioral disorder. He doesn't communicate verbally or have any awareness of danger, and needs constant supervision to prevent him from getting hurt.

The first time Maria tried to receive CUME, the child was 3 years old, but they denied it because the mutual insurance company understood that, since he was in school, his work schedule allowed for a good work-life balance. The technicians didn't take into account the number of times Maria had to pick him up from school during a crisis or the number of medical visits that required her to miss work. Luckily, she says, the company always made it easier for her to leave.

A Matter of Luck

Luck also played in Gemma Luna's favor when she found herself eligible for CUME (Meaningful Living Benefit) and was able to care for her son, who has a serious rare genetic condition that makes him dependent on older children. In her case, the condition wasn't included in the list established by Royal Decree 1148/2011, and when a social worker explained the existence of the benefit to her, she mistakenly thought he wouldn't be eligible. The report included medical records on the child's health, as well as all appointments for visits and medical tests for a year and a half. It took up 70 pages. The goal was to "prove that he needed the benefit" and that it wasn't a "whim," as she says she's often heard from people close to him.

Following his own experience with a lack of information, Luna's partner, David de las Heras, has been exclusively advising on CUME for the USOC union for just over a year. Each week, she sees one or two consultations in Girona alone, and has even had to advise professionals on how to direct families toward the benefit. Both are civil servants at the Education Ministry and decided that Luna would be the one to receive it. "Until then, I hadn't set foot in the center for weeks," she says, pointing out that CUME provides "stability," not only for the beneficiary family, but also for the companies, which can hire substitutes at zero cost because their salaries are funded by Social Security.

The bureaucratic complexity of this aid leads many families to hire the services of specialized lawyers to handle the paperwork. Thus, it was born. Asfacume, the state association that tries to illuminate the families who arrive "exhausted and desperate""to find solutions to the stress of having a child in the ICU, in danger of death or with a chronic and serious lifelong illness," explains Ainhoa ​​Urones, vice president of the organization. Urones highlights that the vast majority of beneficiaries are women, often single with children, who become "caregivers, psychologists, and lawyers."

More than 3,000 families

Today, there are 3,606 Catalan families benefiting from the 17,400 that exist across the country. The CUME has been their "salvation," but also their "executioner," Urones points out, because receiving and maintaining the benefit represents another administrative ordeal, even in the case of chronic illnesses for which they don't provide treatment. According to the law, salaried and self-employed workers must renew the benefit every four months. Civil servants, every two. It is a "burdensome and painful" process because it requires updating reports from pediatricians, oncologists, and neurologists and, according to Maria, means "focusing on all the negative aspects of the child's health." During one of these renewal processes, she says the mutual insurance company expressed displeasure: "They told me that I had told them my son was going to die at age four and that he hadn't died yet," she says.

Urones and De las Heras corroborate this inhumane treatment by mutual insurance companies, which are merely managers. For Maria, "they lack humanity," while the head of Asfacume warns of the "absurdity" of "their daring to contradict the sworn statement of the doctor in charge of the children." Furthermore, they agree on the families' feeling of "guilt" for "taking advantage of their children's weaknesses."

Anguish at Renewal

Asfacume has repeatedly called on the Ministry of Inclusion to reform the CUME Royal Decree to "limit" the power of the mutual insurance companies, as families live "with fear and great anguish" regarding the request for and periodic renewal of the benefit. So much so that she indicates that some mothers prefer to take sick leave for depression "because they don't feel like taking the heart" to take on the battle with the mutual insurance company. "The rights of their children are violated, and families are left with their hearts in their mouths," she complains.

Luna admits to the "nerves" that arise with the bimonthly renewal, although she says she is confident that it will be approved because it more than meets the requirements. "It's very tiring and leads to added stress," says Maria, a member of the Union of Mothers with Disabilities, who explains that one of her "recurring nightmares" is "being at work with my daughter by my side because I had no one to leave her with."

In response to a question from ARA, Elma Saiz's ministry states that there is a commitment to analyze the criteria used by mutual insurance companies, but not to make a regulatory change as the family association is demanding. The same sources point out that in the last "four or five years, the benefits granted have increased significantly."