Jun 13, 2024 11:45am
‘Organising hope, seeking possibilities together’: this is the title of the 11th national assembly of families promoted by the Lega del Filo d’Oro ETS Foundation, scheduled from 14 to 16 June at the Domus Pacis hotel in Santa Maria degli Angeli , in Assisi. An important opportunity for meeting and discussion, with around 100 families of deafblind and psychosensory disabled people, for a total of almost 400 participants.
«The desire of every family to better organize their own life plans and those of their children – reports a note from the Lega del Filo d’Oro – fuels the creative ability to activate connections with professionals and organizations, but above all with other families from which Intense relationships can arise that generate mutual growth and change. In this sense, the national assembly of families represents a precious event which aims to gather the experiences and needs of the relatives of those who cannot see or hear, so as to sow the seeds to give birth to concrete projects and identify the best strategies able to respond to the needs of those who experience deafblindness and multiple psychosensory impairments of a child or relative on a daily basis”.
«The families of deafblind people – explains Daniele Orlandini, president of the family committee of the Lega del Filo d’Oro Foundation – find themselves facing a complex challenge that requires energy, support, but above all knowledge and skills: to succeed on this path, it is necessary and essential to network, so that it is possible to build an effective support system and no one is left behind. These days – he continues – will be a favorable opportunity to receive feedback from a significant number of families on what the most important and priority needs are, from their point of view. To build a more peaceful future for our children it is necessary to start from the concrete experiences of those who experience the disability of a loved one every day, so that all the useful and necessary actions can be implemented to promote and encourage a path of autonomy and well-being for deafblind and psychosensory impaired people”.
In 2023, there were 1,230 deafblind and psychosensory impaired people who received, together with their families, one or more services from the Lega del Filo d’Oro in different modalities. Today the Foundation is present in eleven regions on the national territory, through the five residential centers and associated territorial services of Osimo (Ancona), the main headquarters of the institution, Lesmo (Monza-Brianza), Modena, Molfetta (Bari) and Termini Imerese ( Palermo) and the six territorial offices of Novara, Padua, Pisa, Rome, San Benedetto dei Marsi (L’Aquila) and Naples.
«The family assembly has always been a very important event because it allows us to get to know, through the comparison of different experiences and the rich exchange of reflections, the needs and requirements of those who are next to those who cannot see or hear every day. – declares Rossano Bartoli, president of the Lega del Filo d’Oro Foundation -. This is essential for the Foundation to provide concrete and targeted answers with a view to developing the activities we have been carrying out for 60 years. We firmly believe that networking is essential to guarantee the best possible support for deafblind and psychosensory impaired people.”
The program of the initiative
Many issues were addressed during the 11th national assembly of families, starting from the meeting that will open the three days organized by the lawyer Laura Andrao, national expert in disability law, who on the afternoon of Friday 14 June will hold a seminar on theme ‘individualized project and choice of place of treatment’. The meeting aims to delve deeper into law 328 of 2000, in particular article 14 which establishes the right of disabled people to have individual planning. On the morning of Saturday 15 June, after the opening of the proceedings by the president Rossano Bartoli, there will be the speech of the mental coach Luciano Sabbatini (‘training for small but big successes’) and those of Lorenzo Pergolini, psychologist – Case Manager Center Diagnostic (Development of the parent-child relationship: separating to reunite) and Chiara Filippini, Assistive Technology Technician (‘assistive technology to support inclusion’). In the afternoon, the general director Roberto Costantini will open the second phase of the work, which will be followed by the intervention of the social worker Ivana Lovino (‘networking to create intense and persistent relationships’). On Sunday 16 June, after the opening of the proceedings by the technical-scientific director Tiziano Gomiero, there will be a speech by Patrizia Ceccarani of the technical-scientific and ethical committee (‘building alliances and transmitting skills’). Finally, it will be the turn of the final reports by Daniele Orlandini, president of the family members committee, and Francesco Mercurio, president of the deafblind people committee. President Bartoli will close the proceedings. Over the course of the days, the testimonies of numerous families of users followed by the Foundation will alternate with the interventions, who will tell their experiences as mothers, fathers, brothers and sisters of deafblind and psychosensory disabled people. In parallel with the work of the assembly, recreational activities are planned within the host structure for children with disabilities and their brothers and sisters, to allow them to spend moments of entertainment and encourage greater inclusion.
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