The Lega del Filo d’Oro ETS Foundation – Philanthropic Institution presented, in the Sala della Regina of the Chamber of Deputies, the “Manifesto of deafblind people”: a document in ten points which aims to draw the attention of the institutions on the rights of this non-negligible segment of the population, which numbers over 360 thousand people with sensory and multiple visual and hearing disabilities and, at the same time, with motor limitations, whose overall estimate must however be seen upwards, taking into account also taken into consideration are minors under the age of 15, not included in the survey, and people who have, in addition to sensory impairment, also an intellectual disability. These are often invisible people, who risk being confined to the isolation imposed by their disability.
The institutional event, which kicked off the celebrations of the 60th anniversary of the Foundation, was attended by the vice-president of the Chamber of Deputies Giorgio Mulè for the greeting address and the deputy minister of Labor and social policies Maria Teresa Bellucci, to which were followed by the introductory speeches, via video message, by the Minister for Disability Alessandra Locatelli, by the Undersecretary for the Economy Lucia Albano and the message by the Minister of Health Orazio Schillaci. For the Lega del Filo d’Oro, the resident Rossano Bartoli, the president of the Technical Scientific and Ethical Committee Carlo Ricci, the president of the Committee of Deafblind People Francesco Mercurio, the president of the Family Committee Daniele Orlandini, with the touching testimonies of the educator Manola Tamburo and volunteer Antonella Nibaldi. Furthermore, the event saw the presence of testimonials and historical friends of the Foundation, Renzo Arbore and Neri Marcorè.
“There is only one word to acknowledge the work, or rather the mission, that those who collaborate with the Lega del Filo d’Oro carry out on a daily basis: thank you. And to thank volunteers, staff, therapists, family members and above all the living miracles that populate the Golden Thread, I am proud to host them at the Chamber of Deputies on the occasion of the 60th anniversary of its foundation – says the vice president at the Chamber of Deputies Giorgio Mulè -. We do this with a concrete signal from the Government, because with the expansion of the rule on the recognition of the rights of deafblind people, just announced by the Minister for Disabilities Alessandra Locatelli, the executive has demonstrated the centrality of the issues linked to the activity of the Filo Golden”.
“Today is an important milestone for the Lega del Filo d’Oro, for Rossano Bartoli and for all the people who are part of this great family. – underlines the minister for disabilities Alessandra Locatelli -. I am happy to be able to celebrate this anniversary with important news. Yesterday, on my proposal, the Council of Ministers approved a provision amending law 107/2010 regarding the recognition of the rights of deafblind people, inserting this topic in the simplification bill presented by Minister Zangrillo. The constant collaboration with Rossano Bartoli and the legislative staff of the Lega del Filo d’Oro has allowed us to go in the right direction: we are finally adapting the definition and expanding the law to guarantee the recognition of the condition of deafblindness, regardless of the age of onset . An important signal, which will allow all deafblind people to access services.”
“The Lega del Filo d’Oro is a flagship for the world of associations and therefore of the Third Sector, but not only, because the heritage of solidarity, knowledge and advocacy carried forward makes us all, institutions and citizens , proud of the important results achieved in years of work in favor of deafblind people. – declares the deputy minister of Labor and social policies Maria Teresa Bellucci -. Today another fundamental piece has been added in terms of recognition of the specific situation of deafblind people within the vast family of disabilities, allowing greater protection and guarantees for a better life. Thank you friends of the Lega del Filo d’Oro for what you do and for the path you have traced and which allows many other associations to follow your example and your dedication”.
“Today the Lega del Filo d’Oro reaches another, fundamental, goal. On the eve of this celebratory day, a very important bill was approved for all deafblind people, which recognizes deafblindness as a unique disability, without discrimination between people with the same conditions developed at different ages. This significant step makes us look to the future with greater hope and lays the foundation for a more inclusive and respectful society. – he declares Rossano Bartoli, president of the Lega del Filo d’Oro Foundation –. Today’s event seals the commitment that, as Lega del Filo d’Oro, we have been carrying out for 60 years now and looks at the further goals that we hope to be able to achieve thanks to everyone’s support. Our goal is to guarantee a better future for those who cannot see or hear and their families, who place their trust in us every day. We firmly believe, and we have had proof of this, that with the support of the institutions and the population as a whole, the current challenges can be overcome to create a more equitable and accessible society. I would therefore like to thank all the institutions for having accepted our requests and having guaranteed this precious opportunity for discussion”.
“The Lega del Filo d’Oro represents an invaluable resource in support of deafblind and psychosensory impaired people who, thanks to assistance, rehabilitation and education, can make progress towards greater autonomy. – underlines the Minister of Health Orazio Schillaci -. With yesterday’s approval in the Council of Ministers of the measure on the recognition of deafblindness, the Government gave a strong signal of attention and listening to the needs of deafblind people. A very important result that goes in the direction of full recognition of the right to health.”
“The Lega del Filo d’Oro is a source of pride for all of Italy and for the Marche region. 60 years is an extraordinary milestone achieved thanks to dedication, care but also to innovation, research and study achieved thanks to the commitment of all doctors, healthcare professionals, volunteers and donors who do their utmost every day to make a dream come true in 1964 – commented the Undersecretary for the Economy Lucia Albano -. Yesterday’s approval in the Council of Ministers of the recognition of deafblindness represents a big step forward towards the full guarantee of the right to health and self-determination and an important signal of attention towards the Lega del Filo d’Oro”.
The regulatory framework
The initiative anticipated an important anniversary in the history of the rights of those who cannot see or hear, since on 1 April 2004 the European Parliament, with the “Declaration on the rights of deafblind people”, recognized deafblindness for the first time as a distinct disability, inviting all Member States to recognize the specificity of this disability and to guarantee deafblind people adequate support in the health, welfare, inclusive, communication and mobility fields. However, despite regulatory progress, there are still significant challenges to address in ensuring full implementation of the rights of deafblind people.
In Italy, Law 24 June 2010, n. 107 “Measures for the recognition of the rights of deafblind people”, has implemented the recommendation of the European Parliament. Although appreciable in intent, the practical implementation of this law has proven difficult. In practice, in fact, the recognition of deafblindness remains linked to the verification of two distinct impairments, effectively excluding from full legal protection people who, despite being blind, became deaf after the twelfth year of age, or were born without no sensory impairment, have become deafblind after the age of twelve.
To overcome this criticality, the Council of Ministers recently approved a very important bill (the so-called simplifications-bis) aimed at guaranteeing the recognition of deafblindness to all people who demonstrate total or partial combined impairments of sight and hearing, congenital or acquired, regardless of the age of onset. This measure is part of the broader reform plan launched with the Delegation Law for Disability (Law 22 December 2021, n. 227), which will accompany the update of the definition of deafblindness with a simplification of the criteria and assessment methods.
The new definition of deafblindness – which it is hoped can also be quickly approved by Parliament – marks a fundamental change of pace for deafblind people. Having a definition that finally recognizes deafblindness, regardless of age, is of crucial importance to fully guarantee the right to health and assistance of deafblind people, as well as to promote their real self-determination. The challenge of full recognition of deafblindness as a specific disability must not, therefore, be limited to a – desired and necessary – improvement in health and social care, but consists in translating inclusion policies generally aimed at people with disabilities into fully enforceable rights for all deafblind people.
The Manifesto of deafblind people
Starting from the recognition of deafblindness as a unique disability, the Lega del Filo d’Oro, with the “Manifesto of deafblind people”, intends to identify some of the main barriers that prevent deafblind people of all age groups from being able to concretely enjoy their rights, asking the Institutions to commit to: Recognizing as deafblind all people affected simultaneously by blindness and deafness, regardless of the age at which they develop these disabilities, updating Law 107/2010; Guarantee access to healthcare services outside the Region for all deafblind people and people with psychosensory disabilities who need specialist care; Promote a greater presence of LIS and LIST interpreters in public structures, especially in the healthcare sector; Promote the educational inclusion of deafblind children and young people in primary and secondary schools, through the training of staff and volunteers in the use and knowledge of Braille, LIS, LIST, Haptic and/or the most suitable communication system for the individual person; Promote the autonomous mobility of deafblind people through the training of assistance personnel in public transport, in particular railways and airports; Promote the full implementation of the so-called After Us Law (Law 112/2016), recognizing the role of the family caregiver (art. 1, paragraph 225, Law 205/2017); Promote the development of inclusive working policies; Promote forms of housing and cohousing for the specific needs of deafblind people and guarantee forms of assistance suited to the needs of elderly people; Promote the accessibility of institutional (and non-institutional) websites for people with psychosensory, auditory and visual impairments; Promote access to sport and culture for deafblind people and people with psychosensory disabilities by breaking down physical, sensory and cognitive barriers.
