Chronic autoimmune diseases: “Wonder”, a pilot project for school integration, is underway

5 schools will be involved in the first phase of the EDI Cooperative initiative

Five different schools in different areas of Italy will be the starting point for the pilot phase of the “Wonder” projectorganized by Cooperative EDI – Childhood and Adolescent Rights Education and funded by the UniCredit Foundation. “Wonder” aims to prepare school operators to be truly and effectively close to the needs of children with autoimmune diseasesobstructive and chronic such as asthma, diabetes, thyroid.

L ‘asthma, for example, it is the most common chronic disease in children, with an incidence equal to one in 10. It does not involve cognitive problems, but these children need to pay special attention in the management of their discomfort, which ” ‘adoption of preventive Measures as well as a rapid capacity to intervene in an emergency. The Type 1 Diabetes on the other hand, it affects a wider range of children: in fact, about 20,000 minors are affected in Italy.

In order to guarantee the full participation of these children in the normal learning activities, it is necessary that the school staff or the educational institute that welcomes them be properly trained, that is to say that they have the basic ideas to be prepared to better deal with any emergencies that occur during school hours.

“Parents who complain about the associations, due to the lack of availability of management staff and the lack of administrative flexibility, probably in terms of school hours and food management, have grown significantly compared to the past,” he says. Dr. Alessia Maso, Head of the Development and Design Office of EDI. “The refusal to take responsibility for the management of a pathology is mainly due to the lack of knowledge of the sameas well as the lack of specific protocols with regard to heterogeneous situations, which vary significantly depending on the schools, local administrations and regions to which the whole national school system belongs, but are rare realities that make the principles of so-called comprehensive. Primary health care, through which multidisciplinary primary care teams have a strong connection with the territory and with the communities.

It is to deal with this situation that arises the Wonder project, which aims to increase the capacity for inclusion for the identification and preparation of proper management practices that increase the well-being of children, as well as the education and awareness of teachers. “TToo often – says Dr Maso – to meet these needs, we rely on the interpretation and goodwill of the school people.because it is generally the parents who provide the teacher with useful information about the pathology of their children and how to intervene in an emergency. The support of ASLs or patient associations is only present in a few cities in Italy. Leisure and sports centers tend to exclude these people altogether, thus avoiding taking on a responsibility they can barely maintain: a situation exacerbated by the pandemic, which has further limited access to many activities.

In an interview with the Rare Diseases Observatory, Dr. Maso had the opportunity to better explain to us what needs and with what perspectives this project emerged, which starts from the most common diseases but does not exclude the possibility of rare disease experiences around Way to meet. .

Dr. Maso, what’s the parents’ request? What do they expect from the schools for their children?

They all agree to ask for more cooperation, understanding of situations. Parents are the ones who turn to the school, but never all the teachers together, with enormous communication difficulties, explain what their children need, are often in a “fight” situation to confirm the actual exercise of the right on the upbringing of their children, if on the contrary, they should be the ones receiving support. In this sense, the parents’ associations play a fundamental role. I would also like to emphasize that we wanted to involve the schools in the north and south of Italy in the project, because in that sense there are major discrepancies in the services offered. A significant difference in treatment, which also exists between provinces belonging to the same region, such as Milan and Monza, a gap due to the inequality in the assistance services of the municipalities, which vary greatly from region to region. This project is a bit ‘pilot’ in that sense, because in the closing conference we really want to emphasize what comes out of the workshops, with children and teachers, sure there are a lot of hidden aspects, alarming indications of major dysfunctions within the school ..

Have you ever considered involving local authorities, which are the ones that have to provide materially different services than those that already exist?

We will involve them in the dissemination phase of the results. We must first gather the voices of those who touch the events with their own hands, otherwise it will be difficult to go over the principle speeches, without a doubt absolutely shared, but which have no solid foundation. There will certainly be a second post-design step of joint work, between school and local institutions, that will give completeness to this project, to culturally change the approach and attention to each diversity, or rather, to the uniqueness of each person.

What are your expectations about the project?

To have a pool of motivated teachers who bring these instances into different contexts: I think of the different associations of teachers, or those of teachers. We want to learn from this experience to become more active in the field of the right to health of minors. The UniCredit Foundation, which finances the project, believed in “Wonder”, a partnership that makes us proud. Now we need to find additional funding to also produce the teaching kit for teachers. Our goal is actually to involve many more schools and territories, but for that we need a clear, readable tool designed specifically for classroom work, capable of “going independently” because it is comprehensive and easy to understand.

THE EDI COOPERATIVE

EDI-Education in the Rights of Childhood and Adolescence is a cooperative, founded in 2012, which operates in the field of education, education and the promotion of human rights with a specific focus on the rights of children and adolescents. In EDI, the content and instrument of the intervention and of the education and training relationship are the UN Convention on the Rights of the Child, in particular with projects that promote the centrality of the individual, as rights, through activities that promote their inclusion, participation and well-being of the school, as well as actively engaged in the fight against educational poverty, to media education and the protection of minors. The modus operandi of the cooperative is to engage the largest number of people with a common vision to bring about radical cultural change.

THE WONNER PROJECT

The Training course that “Wonder“Goals will be achieved at the national level, will have teachers and educators as recipients, will be held by experts, doctors and family associations, and will involve all the protagonists of the education process, such as children, parents, teachers and school managers. Training promoted by the project also includes the activity of Workshops for primary school children, through co-planning and experimenting with actions that favor inclusion, understanding diversity, knowledge about chronic autoimmune diseases, and increasing peer empathy. A right will also be made multimedia educational kit which consists of a theoretical part, consists of a series of maps about the tested activities, pedagogical material that can be used freely by teachers and educators. They will also be organized interregional thematic tablesto share and disseminate the culture of inclusion.

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