Deafblindness, inclusion, autonomy and recognition of rights: the 60-year battle of the Lega del Filo d’Oro

OSIMO – People with deafblindness and multiple psychosensory disabilities, over one million and 400 thousand in Europe (0.3% of the resident population, 2.5% for the elderly) and over 360 thousand in Italy (0.7% of the population), they represent a non-negligible segment of the population, often invisible, who risks being confined to the isolation imposed by their disability due to the absence of effective processes for analyzing their specific needs, the barriers and inequalities that they are forced to face.

The little-received invitation from EU member states. In 2004, the European Parliament recognized deafblindness as a distinct disability for the first time, calling on Member States to ensure adequate support in various areas. In Italy, Law 107 of 2010 implemented this recommendation, but in practice it proved difficult to implement. The recognition of deafblindness, in fact, remains linked to the verification of two distinct disabilities, effectively excluding from full legal protection people who, despite being blind, became deaf after the twelfth year of age, or were born without any disability sensory, have become deafblind after the age of twelve.

An important bill from the Italian government. 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.

Perhaps there will be a crucial change. “This very important day – says Rossano Bartoli, president of Lega del Filo d’Oro Foundation ETS – Philanthropic Organization – allows us to remember that the new definition of deafblindness, which it is hoped can also be quickly approved by Parliament, represents a crucial change for those living with this disability. Recognition of deafblindness, regardless of age, is fundamental to fully guarantee the right to health and care, as well as promoting self-determination –

The challenge to live a better life. The challenge of full recognition of deafblindness as a specific disability cannot be limited to an improvement in health and social care, although necessary and expected, but must translate into inclusive policies. The Lega del Filo d’Oro has been committed for 60 years to promoting a better quality of life for those who cannot see or hear, the full recognition of their rights, the breaking down of barriers that hinder their autonomy and their real inclusion in the world. within society, but to do this we need everyone’s support, starting with that of the institutions.”

For 60 years alongside those who cannot see and hear. For 60 years Lega del Filo d’Oro has been alongside those who cannot see or hear, providing concrete answers to their complex needs through an approach that sees the organization engaged in three fundamental challenges: improving the quality of life and autonomy of deafblind people by strengthening psychoeducational practices, validating their scientific effectiveness and promoting mutual adaptation between people and their environments, taking into account individual needs; develop personalized assistive technologies through studies and research aimed at identifying innovations that allow simpler and more accessible control of living environments, with a high degree of customization to respond to specific needs; disseminate knowledge and skills in order to share the know-how acquired to influence the system of welfare and create a new paradigm for caring for people with complex disabilities, promoting a more inclusive society that is attentive to their rights.

Projects in 11 regions close to real needs. The Lega del Filo d’Oro accompanies deafblind people and people with multiple psychosensory disabilities, enhancing their potential with personalized educational-rehabilitative projects, developed by the interdisciplinary team of the Diagnostic Center and implemented in the territories. This commitment extends throughout the life of users and has led the organization to be present in 11 Italian regions, to respond to their needs where they live, planning the creation of new offices in Sardinia and Calabria in the near future, as well as to a new Residential Center in Lazio.

A summary of the work carried out. In 2023, thanks to the expansion of available places, users on the waiting list went from 152 to 146 (-4%) and waiting times were reduced. In the 5 Residential Centres, 70,285 days of hospitalization were provided (+0.5%). The Territorial Offices promoted 237 social and cultural initiatives (+35%) and 451 workshop activities (+15%). 55 family activities and 22 respite weekends were organised. The Lega del Filo d’Oro collaboration network across the territories includes 1,094 organizations (+43%), of which 678 are involved in a stable and continuous manner.

Investments in research. The needs of people with deafblindness and multiple psychosensory disabilities are constantly evolving and to respond to them in an increasingly adequate manner, the Lega del Filo d’Oro innovates its services through educational-rehabilitative research projects, listening to users and families, the periodic collection of data and comparison with the institutions and the national and international scientific community. In 2023, there were 8 research projects carried out in the Lega del Filo d’Oro Centres.

The importance of training. Continuous training is a cornerstone of the Lega del Filo d’Oro strategy. The staff represents the engine that allows the organization to pursue its mission, building meaningful relationships with deafblind people and their families. In 2023, the Training Plan promoted the growth of staff skills in crucial thematic areas, such as healthcare, education, rehabilitation, quality and safety. But to guarantee the full inclusion of deafblind people, it is necessary to transmit the Foundation’s know-how externally as well.