Rare diseases, ALS: approval from the Ministry of Justice to the right to non-verbal communication

The Ministry of Justice officially confirmed the conclusions of National Council of Notaries on full support for the evolutionary interpretation of notarial law for non-verbal communication. The announcement was welcomed with enthusiasm by the national president of the Italian Amyotrophic Lateral Sclerosis Association (Aisla), Fulvia Massimelli: “Communication is undoubtedly an essential challenge for those living with ALS. Aisla expresses profound gratitude to the National Council of Notaries and the Ministry of Justice, for the support and welcome given to what represents an inalienable right for every individual, regardless of one's health or abilities. This right, as enshrined in the New York Convention on the Rights of Persons with Disabilities, ratified by Italy, is fundamental and undeniable”.

This – explains a note – is a step forward that demonstrates the importance of allowing people with disabilities to actively participate in legal transactions. This is equated to verbal communication, allowing the patient to communicate directly with the notary and other parties involved during the execution of notarial deeds. The press release from the National Council of Notaries underlines that “the ministry, in its opinion, offers the National Council total support to collaborate in the creation of a shared path that could lead to the development of a legislative proposal in line with the study that has already been accomplished.” Also the president of the National Council of Notaries, Giulio Biino, expresses “full satisfaction” with the ministry's green light. “The full exercise of the right to non-verbal communication – he underlines – adds an important element to the commitment of the category, which has been active on this issue for years, to promote the protection of the rights of the most fragile subjects”.

Aisla's battle for the recognition of non-verbal communication began in 2015, when the association presented the proposal at the 50th National Congress of Notaries in Milan. Since then, the process has involved the simulation of notarial deeds exploiting the use of technological tools, in particular CAAs (Alternative Augmentative Communication), mostly used by people suffering from amyotrophic lateral sclerosis.