Mothers of dependent children: "We can't take it anymore."

BarcelonaThis Tuesday's protest is the second in two months that the Union of Mothers with Functional Diversity (SinMaDiF) has called before the Ministry of Social Rights and Inclusion to demand more financial and human resources to cover the needs of dependent people and their primary caregivers, a role that falls in 90% of cases on mothers, women, or women. They denounce that "the abandonment" they suffer is institutional sexist violence because, when a family member is diagnosed, "rights go out the window" and the family is left with the "horrible loneliness" of having to seek services, resources, and support to get by. "We can't take it anymore!" they exclaim.

One of these mothers is Olga Espasa, who has a 21-year-old daughter with a 97% disability due to childhood herpes encephalitis. Any rights she's earned over two decades have been a "struggle" that has caused her "physical and emotional exhaustion," and she can't allow this, as she now has to fight to get the department to reverse the incompatibility between services and benefits for adults. Since her daughter attends a day center, the home care service (SAD) worker who assisted her for an hour every day for the past year has been removed, and her dependency benefit has also been halved. "Now that I need that help, because I'm 63 years old and my whole body hurts, they're taking it away, when I've always been doing it alone," she says. She must now repay the Generalitat (Catalan government) "the extra money" she received in dependency benefits.

Cristina Cano has been waiting for a year for the disability rating of her six-year-old son, diagnosed with non-verbal autism, to be reviewed. It wasn't until the child turned four that she learned that a minor was also entitled to benefits under the dependency laws, and she wonders why disability and dependency should be processed separately when they are often interconnected.

In fact, the simplicity of procedures and documentation is one of the demands the union has taken to the regional government. "We live 24 hours a day, seven days a week, focused on caring for our children; we make our lives based on their medical appointments," says Cano, who also complains that when children turn six, they are left without public psychological care. Early intervention centers only provide care up to that age.

Families who can afford to pay out of pocket for private therapies, which can cost more than 200 euros. But the worst comes when they reach the age of six. "Then it's hell, everything gets complicated," Cano laments. Furthermore, mothers complain that there are few resources to temporarily leave their children in nursing homes so that families—90% of whom are women as the primary caregivers—can rest and disconnect from caregiving duties. few public places and private offers are expensive, about 200 euros for a weekend. "A luxury you can't afford to overindulge in," Espasa points out.

Among their demands are more adapted transportation services for adults, faster waiting lists for residential or day care, and a reduction in bureaucracy. The mothers' concerns are not limited to current problems; they also share the anguish of what will happen to their children who cannot care for themselves once they are gone. "As our children grow, we get older, so aid should increase because we can do less," says Montserrat Roca, who has a dependent daughter of forty.

Following the protest, the Secretary of Children and Family, Carolina Homar, met with members of SiMaDiF. The mothers formed a working group on disability and dependency as "experts" and decided to include urgent cases in a nursing home. Both parties have urged each other to meet again in early July.