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Page Title - Founding Members
Background Information from Patrizia Ceccarani of the Lega del Filo d’Oro

In 1964 a small group of volunteers together with a group of deafblind people, headed by the remarkable deafblind woman, Sabina Santilli, met during the summer holidays to discuss the state of affairs of deafblind people living in Italy. It was decided as a result that services should be developed to improve the situation of deafblind children and adults, and a plan of action was drawn up.

To create services, official recognition by the Government was needed and an association was founded.

The name Lega del Filo d'Oro (the League of the Golden Thread) was proposed and accepted. Until 1967 the major aim of the newly founded Association was to obtain formal recognition from the Ministry, while continuing its annual summer meetings. In this important year for the Lega, this commitment was finally rewarded by a Presidential Decree from the Government. The aims of the Association were, and still are, assistance, rehabilitation, and, whenever possible, social integration of deafblind and multihandicapped individuals in their natural, family environment.

 Photo of main building

This Decree allowed the “Lega” to create one of its principal activities, namely the Institute “Nostra Casa” (“Our Home”) where, in limited accommodation, a group of 4 deafblind children received their education from a small group of dedicated professionals and volunteers. The ever-growing activities of the Institute, the gathering of experience and knowledge and the creation of services were officially acknowledged by the Ministry of Health in 1974, which recognised the "Lega" as a Rehabilitation Centre (medical, social and educational services). In 1976 the Ministry of Education recognised it as an Experimental School and Research Centre (a school with all the necessary services for specialising in sensory handicaps). In the years from 1976 to date the Rehabilitation Centre, set in green countryside on top of the Marche hills, on the outskirts of the town of Osimo (AN), which is the only one of its kind in Italy, has grown considerably, providing today a specialized educational setting for 71 people (baby, preschool and school children, adolescents and  adults).

There are now 248 staff employed in the Lega. The Rehabilitation Centre offers various services: a Diagnostic and Documentation Centre, rehabilitation sectors, a research centre and health services.

Photo of rehabilitation centre     Photo of teacher performing a visual acuity test

The Rehabilitation Centre team offers services of various types: psychological, educational, social, medical, rehabilitative (with educational-rehabilitation workers, rehabilitation therapists, music therapy and speech therapists) and organisational.

In the Rehabilitation Centre, clients are taught how to understand learning basics, the various types of communication, how to achieve personal autonomy, to play, to work and to have a life of dignity.

At the Diagnostic Centre, which was created in 1994, thorough educational, psychological and medical evaluations are carried out even on deafblind and/or multisensory impaired children under the age of three (early intervention).
 

Photo of teacher and student working                    Photo of student sitting on bed

After a multidisciplinary/interdisciplinary evaluation, the specialists work together to produce a functional programme which includes a plan of the treatment to be carried out either at another institute in the user’s home area or in the rehabilitation sector of the Lega del Filo d’Oro.

The aim of rehabilitation is to enable the multi-sensory impaired person to return to their natural environment, that means in many cases to their families.  We try to encourage a uniform approach to the teaching so that improvements achieved are maintained and so that all the skills acquired can be used in the family environment. It is also important to remember that in order for the client to transfer the learning, the family must know what to do when confronted with the various behaviours of their child.  This means that parents must be informed and thus able to take an active  part in the rehabilitation process. Our approach with them is multi-dimensional and based on personal interviews, telephone conversations, written communications, direct observation of the teaching procedures and parent courses.

We therefore try to involve both parents as it is very important to us that the same style of teaching should be maintained for the client’s benefit.

Photo of group of students socialising

We pay attention to trying to stimulate positive attitudes in the parents towards their children and each other and to developing their parenting skills and we offer support to the couple from the institute to encourage maximum co-operation between us.   The Research Centre is another important element of the activities of the Association. It is coordinated by a Scientific Committee and at present the subjects being investigated are in medical, psycho-educational, rehabilitation and social-organizational areas. The research is carried out in cooperation with national and international Centres, Universities, Colleges, etc.

The Association, since its creation, has set out to promote services for deafblind people who are not actually living within the structure of the Institute itself. The activities include finding recreational, cultural and professional opportunities, for children as well as adults.

The services take the form of summer vacations, training course, visits, exchanges, etc.

The Association publishes a newsletter in Braille, a two monthly information bulletin for members and supporters, and several publications aimed at the general public and specialists, as part of its awareness programme. The Lega also publishes “Trilli nell’Azzurro”, the official bulletin of the association which publishes articles to raise awareness of all the activities of the association.  All media, including radio and television, are also regularly used to promote public awareness of the situation of deafblind children and adults.

In 1991 the Lega del Filo d'Oro created “the Italian Deafblind Committee” which allows deafblind people to participate in the Association's activities. There is also a “Family Committee” with nine members, which makes proposals and offers consultation to the Administration Council of the Lega del Filo d’Oro. It plays an active role in the various initiatives while always placing the needs of the clients first.

The "Lega" has contacted approximately 1300 deafblind or multihandicapped people since its creation, and the services have developed to give a more adequate response. As the "Lega" becomes better known and the demand consequently increases, we now have to define the future and evaluate the past. In order to respond to an ever-increasing demand, the Association is currently evaluating the possibility of transferring its experience and model to other parts of the country.

Photo of adults on an excursion

The regional office in Milan has created an adult home community which offers hospitality to 5 deafblind people.

Two years ago work started on the ComeTe Centre (Modena) to extend the activities begun in the Osimo Institute to the whole of Northern Italy, and the new Lesmo Centre (Milan) will open in a few months.

Regional offices have been opened in Rome, Naples, Ruvo di Puglia (BA) and Osimo with support activities. The Lega del Filo d’Oro, in conjunction with the European Community has taken part in the: Horizon Projects “Towards employment for deafblind and multisensory impaired people” (1996-1998) and “New Opportunities in working life for deafblind people” (1997-1999); CAUSE -Network Usher – Charge (2001 – 2003)   “GENDEAF” is working on genetic projects on sensory impairments such as deafblindness (2002-2004). The Government supplies only part of the funding. Most of the activities of diagnosis, assistance, rehabilitation and implementation of new projects are made possible by the goodwill of private individuals. Over 300 thousand of them are donors who year after year show their solidarity with the Lega del Filo d'Oro. For further information: see the Lega del Filo d’Oro’s website www.legadelfilodoro.it

 

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