• Tue. Oct 26th, 2021

Healthcare, Aism: ‘7 million caregivers without rights but with more work during the pandemic’


May 11, 2021

In Italy there are about 7 million family caregivers (Istat data), in particular women between 45 and 54 and elderly between 65 and 74, who care for fragile and vulnerable people due to advanced age, a disability or a chronic disease. During the pandemic their role has increased “and yet their role is not yet recognized at the legal level. The figure of the caregiver is not new. It exists in various measures that have been gradually issued over the years by the state, in health planning documents, or at the level of individual regions. However, still today there is a lack of a certain framework of recognition, of subjective rights and protection for these figures who live in a situation of uncertainty and precariousness ”. Thus Paolo Bandiera, Director of General Affairs of the Italian Multiple Sclerosis Association (AISM) on the occasion of the fourth Talk of Allies for Health (www.alleatiperlasalute.it), the new portal dedicated to medical-scientific information created by Novartis. Title of the debate: “The caregiver: what role in taking charge of the fragile patient and in society?” which was attended by Raffaele Donini, Councilor for Health of the Emilia-Romagna Region and the journalist Silvia Bencivelli. In his speech, Bandiera recalls “the advanced points of recognition in some regions that have led the way, such as Emilia-Romagna” but also situations in which the “caregiver – he stresses – is left to himself, forced to reckon with the enormous responsibility of providing assistance without any protection or connection with the NHS, but also and above all with the drama of impoverishment. Having to provide assistance is often the cause of expulsion from the world of work, with the consequent economic difficulties, particularly acute in this moment of pandemic “. According to a survey conducted by the National Coordination of Families with Disabilities (Confad) during the first lockdown – emerged from the debate – for 90% of caregivers the workload has become more burdensome, 86% suffered physical / emotional damage, 71% did not feel supported by the institutions and 98% judged the measures insufficient provided for by the Decrees for family caregivers. “The caregiver activity – recalls Bandiera – was recognized by the 2018 Budget Law which established a fund of 20 million euros per year for the three-year period 2018-2020, defining caregivers people who, by virtue of relationships of familiarity, coexistence and affinity, provide care and assistance activities that are not occasional but long-term, therefore they are people who need a sos long-term intensive effort. With this law we arrive at an endowment of 68 million that can be spent. A decree published in the Official Gazette in January 2021 finally provides for 68 million euros for the Regions to be used for quick, immediate interventions to support caregivers who in the pandemic context have been particularly exposed to stressful and critical situations “. For the director of General Affairs of AISM it is unacceptable that the text of law n.1461 which provides, among other things, that caregivers receive three years of figurative contributions equivalent to domestic work, is “blocked in the Public and Private Labor Commission, social security of the Senate waiting to be discussed “. “It is a very important bill – points out Bandiera – but it has been in the Senate for almost a year. It must be removed from this situation in which it is substantially frozen, because there is a real need to define a framework rule that guarantees the unitary application of subjective rights throughout the national territory. Without this Consolidated Law, the call of the PNRR on the inclusion of the role of the caregiver risks being only a programmatic indication ”. The Consolidated Law, according to Bandiera “has the advantage of having a unified vision, of framing the figure of the caregiver in an organic way. Among the positive aspects – he lists – reviewing Lea’s and introducing essential levels of performance with respect to the figure of the caregiver; provide for simplified paths that guarantee access to services for the assisted person and for the caregiver but also training, education and qualification courses because otherwise the caregiver finds himself having to manage enormous care complexities by himself “. Then there is the social security part on which “you need to have a little more courage – Flag has no doubts -: figurative contributions are good but we also think about the possibility of early retirement, a check for those who do not have sufficient income, assimilation of weary workers. Furthermore, when a caregiver cannot provide assistance, it is necessary to think of a formula that guarantees the takeover by a professional operator. With the pandemic it emerged that the caregiver is an essential resource but cannot be forced into the dilemma of “work or soon assistance?”. “For this reason – underlines Bandiera – we must find sustainable, innovative formulas, starting also from the experiments carried out in the field of agile work, which allows a balance between care and work. home, because this would mean further isolating the caregiver and forcing him into the home. Instead, we must ensure that he is able to live a real working dimension, that he continues to provide assistance and is strongly supported by the network of services. employment centers, we have had evidence of many caregivers who have been expelled from the world of work this year. The bill is a good law, it is a good starting point, certainly improved, but – he concludes – it must be unlocked: they are the funds but paradoxically the norm is missing, usually the opposite happens ”.