When turning 18 leaves you without a future


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Since Lucía – a severely dependent and 83 percent disabled person – came of age last July, her mother has not been able to enjoy CUME. That’s what it’s called the benefit to which, in accordance with Royal Decree 1148/2011, caregivers of a child with a serious illness up to 18 years of age are entitled, through a reduction in working hours without economic reduction. Since then Marina Alcaide has had to take medical leave to care for her daughter, who requires direct and permanent care due to her rare disease (syncope minus syndrome): «She needs care 24 hours a day, 7 days a week, 365 days a year. She doesn’t know how to eat alone, she doesn’t dress, she doesn’t have toilet training … You have to do everything for her. At 18 the benefit ends, but the disability is not removed, “he says wryly.

Social claim

The hopes of this woman, and of thousands of families like hers, are placed on the Non-Law Proposition (NLP) proposed by the PP and approved in the Congress of Deputies unanimously by all groups last October and by which it is established that the age criterion is eliminated to continue receiving the aforementioned aid. Now, specifies Alcaide, who is dedicated to advising other parents in this situation, “the issue of the CUME, which is how aid is called, depends on the Government, which is the one that has to shape so that the expansion of the provision and included in some way in the General Budgets ».

The general fear of this group is that NLP “is not enough and is only a patch”. It is true, Álvaro and Rocío Villanueva, Alvarete’s parents, also with a rare disease, lament that “they are considering expanding from 18 to 22 years old, or at most 26 years old, but the family disaster remains the same.” The serious situation of his son, who suffers from tuberous sclerosis and polycystic kidney disease, both of which are very virulent, also led his wife, an employee of a large bank, to avail herself of these benefits to care for Alvarete, now 15 years old. “My leave ends in three years, and I don’t know what will happen then,” says Rocío, who left a promising professional career after a personal collapse. “It is implantable to combine the care of a minor with a severe disability with a working situation at full capacity,” he emphasizes.

In fact, she continues, “my son is taller than me, and it is very difficult to manage the frustration caused by his pain or anger: he cannot speak and his reaction is to bite, pull his hair … He has even broken the harness with which he goes back in the car and has been placed in the passenger seat. The illness and behavioral problems of these n children multiply with age. I don’t want to think about the future, but the reality is that my son has only three years left to turn 18 and I, therefore, three years of relative tranquility ».

“Perfect Tsunami”

The age limit “does not make any sense,” Álvaro Villanueva remarks, “because at 18 years of age (or 21 in many of these cases), the child’s compulsory schooling ends. This will be better or worse attended in the school to which they go, but until that moment it is attended. The problem is therefore aggravated just when schooling ends: there are not enough day centers, not enough residences, and definitely not resources to care for these kids ».

In addition, warns this parent, also founder and president of Fundación AVA, “it is evident that the average age of the parents also increases, therefore, the physical situation of the parents is combined with the economic situation, because as They are approaching the third age, some parents may even be retired. It is the perfect tsunami, families with large dependents, limited financial resources and health that is likely to fail.

Savings to the State

In its foundation they know the case of a boy who is under the care of his elderly mother “and it is not very clear who cares for whom”, adds this father. Age, confirms Marina Alcaide, “does not forgive. The wear and tear, the tiredness of what it means to be the caregiver of a large severe dependent … are not taken into account, but without a doubt they are also taking a toll on all these families ».

The extension of the benefit is something of “social justice”, he insists. “Actually, the Administration – this mother clarifies – knows that we are savings. Marina Alcaide does not say it, the INE says it. We become doctors, nurses, drivers … in everything, when it should be the public powers that facilitate the care of these people. But of course, we get cheaper if we assume it the families, specifically, the women. Because unfortunately, many couples end up divorcing. In the end, we stop being people, professionals … The only role we play is that of a caregiver, ”she concludes.

Possible alternatives

These families also urge to modify the Royal Decree “immediately” to “collect diseases that are off the list, let’s say, and that leave thousands of families without the possibility of availing themselves of this help.” In Villanueva’s opinion, “instead of making the selection due to illness, it should be done based on a real situation. Because it is not only a matter of coming of age, but of the capacity and the situation of each minor, who is very likely not to be able to eat or go to the toilet alone. They should not only eliminate the 18-year limit “immediately, but offer another alternative that allows us to maintain this right,” suggested the president of the AVA Foundation. For example, he proposes, “Among the feasible long-term options, perhaps granting the mother or father a work disability can be considered.”

Along with that, suggests this father, it is necessary «the creation of socio-health centers where both their social and relationship needs are attended to (for his serious behavioral and communication problems …), like your health problems, which can range from refractory epilepsy, brain damage, or degenerative disease … You just have to look at nearby countries like France or England, where these resources already exist. In fact, he recalls, «in the Community of Madrid alone, where we live, there are about 3,000 minors with disabilities. The problem is that until now there are no centers capable of gathering and coordinating their different classes, therapies and medical care. This situation, Alcaide concludes, “Yes that is a true social emergency”

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