«My son does not know how to eat, speak or wash himself. At 18 years of age, I don’t think the miracle will happen that the disability will be removed »


MADRID

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“At 18 years of age, I don’t think the miracle will happen that Lucas’s disability is removed, he becomes autonomous and independent. My son will unfortunately go to a situation of more dependency, because his illness It is degenerative: it is a child who does not know how to eat, does not know how to speak, does not know how to wash. It is absolutely dependent. Lucas has a genetic malformation due to the duplication of the short arm of chromosome 7, a condition that led Eloisa to request, when the child was four years old, the benefit established in Royal Decree 1148/2011 by which the caregivers of a child with a serious illness are entitled to a reduction in working hours without economic reduction.

Until, precisely, the age of majority. That deadline is the turning point in the lives of many families, who demand that it be extended in time. Faced with the re-vindication of many families in the same situation of Eloisa, which have also been heard from different associations such as the Spanish Federation of Rare Diseases, CERMI or ASPACE, the Congress of Deputies debated a proposal not of law a week ago (PNL ), at the proposal of the popular group, to urge the Government to expand this benefit.

The NLP was approved unanimously, although the families believe that this “is not enough” and urge to modify the Royal Decree “immediately”. Families need to “eliminate the 18-year limit or offer another alternative rule that allows us to maintain this right.”. Because when these children reach that age, «Lucas, probably, will be even a little worse, and for my part I will have gotten older and on top of that I will have to take away my income and disconnect more from the world of work if I want to continue taking care of him. It’s absurd ”, concludes Eloisa.

Professional bonding

Lucas was born in December 2008 and she has been receiving this benefit since February 2013. “Until the child was four years old,” Eloisa recalls, “he had a reduction in working hours for caring for a dependent minor with a consequent reduction in salary . I reduced myself to the minimum so as not to suffer a strong impact, and because I wanted to continue keeping my job and maintaining the employment relationship ». Despite everything, as Lucas meets all the requirements that are needed, “I saw the possibility of receiving 100 percent of the income, and being able to take a 50 percent reduction, which on the one hand,” he admits, has improved my quality of life and that of my son, because I have already taken Lucas, to bring him, and I can dedicate the time to him as he deserves. Then I keep working, which is what I want to do ».

The future after school

At the moment, Lucas’s day-to-day takes place at school because, Eloisa clarifies, «education in the school stage is compulsory, there my son has his needs covered, which we are always trying to improve, increasing his well-being with therapies going from here and there and so on. But, Eloisa wonders: «What happens when Lucas turns 18? It does not have to be in any center. Lucas may be at home, or it may be that we won’t get a center tomorrow where he can be. And he will have the same needs as now or more because many of these diseases are more dependent, because they are degenerative and involve much more care. So from the age of 18 is when this reduction is really needed the most. In fact, this is when I am most concerned because, what will become of my son after 18 years of age? », This woman wonders.

«Maybe I can’t get a Day Center, or not the one I want. I’m going to have to stop working to take care of him or have to hire someone. All that if you don’t get an income, how do you do it? For me the problem really begins at 18, which is when these children require a lot more care and dedication. And then I take into account that we get older, everything costs us more, physically you have a deterioration ». “This benefit,” this mother continues, “has to be prolonged whatever it takes.”

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