A little over a year and a half ago, before the presentation of the State Strategy for Deinstitutionalization and the announcement of the preliminary draft of reform of laws on Disability and Dependencywas born State Platform for Primary Caregiversan initiative of a group of mothers who dedicate their lives to caring for their disabled children. Their goal was to take advantage of this paradigm shift to ask to be heard, to stop being invisible in the eyes of the system and to stop being considered “unprofessional caregivers.”
During this time, they organized themselves to make themselves heard and presented all kinds of proposals. But they still do not feel recognized, since today, reforms to laws on dependency and disability They don’t include any of their claimssomething that they will see again during a rally scheduled for this Thursday, December 11, the day in which they will present the amendments to this law to all of the Junts and Esquerra.
“The reform of the law is very focused on autonomy of people in a situation of disability, professional workers in the dependency sectorbut primary caregivers who don’t appear anywhere. There are no measures for us at the work, economic, social or health level…” explains Patricia Giménez, one of the spokespersons for the Platform.
Carers, in the feminine sense, because the vast majority of people they care for are still women, they are, in their own words“those of us who support the dependency system“, but they do it on the basis of resignations, they abandon work, their social life and even their health, because being busy 24/7 is tiring and takes its toll.
Their work allows the system to save a lot of money, which is why they hoped that, although it was a recognition, their requests would be taken into account, among which they stand out: having a SMI to be able to take care, right to unemployment if your child diessupport for finding a job, the possibility of taking early retirement if you work in addition to caring, the increase in benefits with the annual CPI, paid leave, work flexibility or even specific health measures for caregivers…
However, none of these have been reflected in the projects so far, “there are no specific measures to recognize the needs of us, the primary caregivers”, they complain. And other demands, which concern them less directly but which also demanded, or not, in a resounding way, such as the question of incompatibilities between services“the reform includes it, but They leave this to the discretion of the autonomous communities“There are certain communities which do not have incompatibilities, few in number, but the majority have incompatibilities, which is why we will continue like this,” he laments.
There are no specific measures to recognize the needs of primary caregivers.
Without caring about those who care, the system “collapses”
Failing to care for those who care will make the system, as they warn, unsustainable; this could even cause, if structural measures are not taken, a social collapse, because the number of dependent people continues to grow“children who previously did not thrive or were locked up at home, now they are no longer even locked up at home, they are thriving and living, and, in addition, there are more and more elderly people… The State will not be able to take care of all these people, because it is impossible and because we will have to continue to do so as caregivers, unless they recognize it or compensate us in some way from another. The only thing we want is to be able to live, to be able to fill the fridge or go to the doctor if we need to, we can’t even get sick.
It is for mothers who only take care of themselves, which is not little, but for those who, in addition to taking care of themselves, work outside the home, request a early retirementsomething that was raised, but only for those who have “difficult” jobs, something that seems insufficient to them, “we do not all work in the same thing, but we all care, and if there is a “difficult” job, which is exhausting and which affects health, it is that of caring 24 hours a day, so what we ask in this regard is that those of us caring for a large dependent and we also work outside the home, whatever work we do, we can retire earlyjust like other professions.
Even though there is nothing in the world that resembles what they are legitimately demanding, there are models that they think Spain could focus on, like the Dutch, “they have made a lot of progress on the question of personal budgetswhich means that the State makes a calculation of what the care of this dependent person may involve in expenses and gives it directly to the family or person so that they can spend it on what they think they need: hiring a nurse, whether she is the mother or father who takes care of her and stays at home and it is her salary, whether she goes to an institution, whether she spends it on therapies, etc. and we think this model could apply to me too,” says Patricia.
Since, as long as there is life – like those they support – there will be hope, caregivers will not give up and will continue to demand what they believe they need for them and their children to have a dignified life. And they don’t lose hope because, at least, they feel heard, “All the political groups received us and they all told us that they would support us in our demands.we therefore hope that our proposals will be added to the new law during the parliamentary process. In the meantime, we will continue to move forward“.
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