“Children with disabilities are continually denying us the right to make our children a life just like others.” This convincing is affirmed by Eva Maura, Dídac’s mother, the four -year -old boy with two Ultrararas diseases. The child’s mother has moved from Tamarite de Litera (Huesca) to the doors of the Pignatelli building, headquarters of the Government of Aragon, to claim the right that Dídac and two children with disabilities more to go to the summer camps of the correspondible plan. It is an initiative of the Ministry of Equality that allocates money to the Aragonese Institute of Women to organize campus in the regions.
With two banners, a fridge and a beach umbrella, Eva Maura has been planted in front of the doors of the Pignatelli building without an expected date to leave the place, tired of ignoring him and does not give him explanations. “I don’t know how many days I will be here, but my child is going to have a summer campus,” he says. With this “sitting”, Dídac’s mother represents the three families with children with disabilities who are in this same situation in the town.
A mother denounces the “exclusion” of her child with ultra -ran diseases in summer camps
Eva Maura reports that for three years her son has been denied access to the summer camps of the plan responsible for a “lack of resources.” However, he denounces that this plan marks as a priority to enter their campus to a series of groups among which are “people with disabilities”. “They have rights in law,” says Maura, who adds angry that “the inclusion signed in paper that wonderfully well, but has to be equipped because if you ensure that there are priority places for these children, but if there is no money it is useless.”
Eva Maura managed to register her child’s request before they eliminated registration
Although the legislation does not establish a fixed ratio of monitors per child, it does force to adjust the necessary human supports based on disability and the degree of dependence of the minor. In this case, according to Maura, two of the children have recognized degrees II and III of dependency, while the third is pending evaluation, although everything points to another grade III. According to the usual criteria, these three minors would require the attention of at least two specialized monitors. “At first we asked for one, worse as we have been denied, now we go with everything,” he says.
Private campus
Last year, Dídac went to a private campus that they perform at his school because he was “subsidized” so that he could participate. In this sense, he affirms that it was a strategy to “take off me” and that “they on their public campuses did not have to put specialized personnel.” The three families agree that this camp is the best option for their children, but not everyone can “allow it.” Therefore, the public campus of the plan are the only “affordable” option they could access even if they have to move to other locations.
“I need my son to go during the summer months to a camp because we live in a town and we have no family network. For him, for me and for my mental health because I also have a mental disability,” he says.
Likewise, the mother says that there is another option that is a “very expensive” private campus carried out by the Tamarite City Council in a celebrations pavilion, “without windows, without air conditioning and multisport.” “We already know that children with disabilities are not great athletes and less so small, so the three mothers have refused because it is going to kill heat children in the middle of July.” In addition to the situation of this campus is not adapted to this type of children.
Campus information disappears
The latest novelty in this odyssey for the families of these little ones is that all the information of the summer campus of the Plan correspondible in the Litera region has disappeared from the web, as well as the page to request a place. However, Eva Maura managed to make the application at the end of last week.
Dídac, the Aragonese baby who fights an ultrarara disease with only three cases in Spain
“These children have some rights that skip year after year. It is unfair. We have to fight for everything because there is no protocol. We have to fight so that children have someone in the classrooms or to get them to give them therapy,” he exclaims, already exhausted, Eva. It will fight during the days that are necessary until they give explanations and the children get a place on these public campuses. At the moment, he has sent instances to the Government of Aragon and the region to denounce and investigate this situation. “We only ask that children can access the camps,” he claims.
“My son is my priority is my life and I have nothing better than to fight for the rights of my son. Because if I do not do it now, the day I miss no one will raise his voice for him,” he says.
