Abstract
The disability world is not a world apart. It is part of the world. Let’s start from these words to outline a definition of what the term ‘disability’ means today and to explain how, for eighteen years, i.e. since 2006, there has been a real change, dictated by the approval of the UN Convention on the Rights of Persons with Disabilities, the first UN Convention of the new millennium.
The Convention, which became Italian Law 18/09 in 2009, speaks clearly and must be the main point of reference for everyone: “Persons with disabilities are those with an enduring physical, mental, intellectual, neurodevelopmental or sensory impairment that — in interaction with barriers of various kinds — may hinder full and effective participation in the various contexts of life on an equal basis with others”.
The turning point was epochal and can be summarised as follows: an individual is more or less a person with a disability depending on his surroundings, and on if it is more or less adequate to allow people with disabilities to have the same opportunities as everyone else. In other words, it depends on where and how a person lives.
The consequence is logical and suggests that the welfare of protection adopted so far to ‘protect’ persons with disabilities, which during the Covid pandemic, for example, did not fulfil its function of ‘protection’ at all, must in particular make space for a welfare of inclusion, territorial proximity and participation; a welfare, in short, based precisely on human rights and on the concrete application of what the UN Convention establishes.
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As is well known, the spread of the Covid virus in our country and worldwide, the fourth anniversary of which we are celebrating in these very months, has severely tested the entire Italian system and in particular our National Health System and that of Social Protection. Remembering the thousands of victims is a duty, to say the least, but so is thinking back to the state of great concern in which so many people have lived.
These concerns, with all the associated difficulties, were even greater for the thousands of persons with disabilities in our country, whose living conditions were already largely determined by levels of protection and social inclusion that were not properly and adequately fulfilled.
The impact of the pandemic on our communities, therefore, constituted a further, dramatic milestone, obliging us to reshape certain priorities in a direction that envisages, first and foremost, the guarantee of greater protection of the health and safety of all citizens, but even more so of those who are most vulnerable and exposed to health-related risks.
If, therefore, from a cultural point of view, people with disabilities demand protagonism over all their life choices, with the overcoming of a welfare system that ‘protects’ them from above and from outside, what happened between 2020 and 2022 makes it clear that the system has failed from its very assumptions.
In our country, too, there has been a recent change, from a regulatory point of view, with the approval of Law 22 of 2021, which has been delegated to the government in the field of disability, and whose various implementing decrees are now being finalised.
This regulation, in fact, immediately establishes new assessment criteria based on the definition of persons with disabilities, referring precisely to the before mentioned first article of the UN Convention on the Rights of Persons with Disabilities, and sanctions a functioning profile that takes into account the person in his or her enablement, awareness and self-determination, through customised projects that see the person himself or herself fully involved in decisions on how, where and with whom to live.
Two Implementing Decrees have already been published in the Official Gazette, namely Legislative Decree No. 222 of 2023, containing Provisions on the upgrading of public services for inclusion and accessibility, in implementation of Article 2, paragraph 2, letter e), of Law No. 227 of 22 December 2021, and Legislative Decree No. 20 of 2024 (Establishment of the National Guarantor Authority for the Rights of Persons with Disabilities, in implementation of the delegation conferred on the Government).
Improved in the text, thanks also to the collaboration with the Institutions of our Federation, the Decree on the new National Guarantor, which will become fully operational from the beginning of 2025, will create an independent guarantee body, homogeneous in structure and competences to the Guarantor Authorities already active in the legal system, whose task is to promote and protect human rights and to fight discrimination phenomena.
Very importantly, access to the National Guarantor will be free of charge and will allow an authoritative opinion to be obtained within a few months, an opinion that will be notified to the entity and/or person who has discriminated against a person with disabilities. The opinion, although not on the same level as a court ruling, depending on the seriousness of the discrimination implemented, will, on the one hand, commit the entity or person discriminating to eliminate the discrimination within a short period of time, through “reasonable accommodation”, with the overcoming of the discrimination or the commitment not to repeat it, and, on the other hand, it will contribute to the understanding of the respect of the human rights of persons with disabilities within society in all its articulations, to ensure full participation, inclusion and full citizenship.
It will certainly be important that the figures called upon to make up the body have an in-depth knowledge of the world of disability and know how to listen to the requests of persons with disabilities and their families, but in any case, this is another important step forward for the full and effective implementation of the UN Convention, relaunching the fundamental role that persons with disabilities and those who represent them must have to promote their rights.
From the point of view of practical developments, the other Implementing Decree published so far in the Official Gazette is equally important, because it marks a big step forward for the accessibility and inclusion of people with disabilities in working contexts.
But that is not all: in addition to guaranteeing the accessibility of Public Administrations to persons with disabilities and the uniformity of the protection of employees with disabilities in the Public Administrations all over the national territory, for the purpose of their full inclusion, in compliance with European and international law on the matter, the approved text provides an even more complete definition of accessibility, speaking of it as “on an equal basis with others, of the physical environment, of public services, including electronic and emergency services, of information and communication, including computer systems and information technologies in Braille and in formats that are easily readable and comprehensible, including through the adoption of specific measures for the various disabilities or of assistance mechanisms or the provision of reasonable accommodation”.
And last but not least, on the cultural front, the draft decree, whose approval is imminent, is perhaps even more significant, and a valuable stimulus to a truly new ‘culture of disability’. It defines the condition of disability, the basic assessment, the reasonable accommodation and the multidimensional assessment for the elaboration and implementation of the arranged and participatory individual life project.
In fact, it is a text that introduces substantial changes in the Italian legislation on disability on the definition of the condition of disability, basic assessment, reasonable accommodation and multidimensional assessment for the elaboration of a personalised and participatory individual life project.
Among the main innovations, particularly noteworthy is the reunification and simplification of assessments for civil invalidity, disability and work disability in an all-inclusive definition of disability status, not to mention the introduction of a multidimensional disability assessment for the creation of customised life projects.
These are certainly fundamental steps to substantially change our system and increasingly meet the needs of citizens with disabilities, where we speak, for example, of wanting to analyse and regulate disability itself from the point of view of the individual perspective, but also of interaction with the environment: in other words, as mentioned at the beginning, it is one of the crucial points of the UN Convention.
And finally, there is a further aspect that has always been a priority for our Federation: with the approval of this decree, even at the legislative level, the language on disability will become more substantial, with the word ‘handicap’ disappearing from legal terms and being replaced by the words ‘condition of disability’. And as far as persons are concerned, we will no longer speak of ‘handicapped’, ‘handicapped persons’, ‘differently abled’, ‘persons with disabilities’ or ‘disabled persons’, but only and exclusively of ‘persons with disabilities’, again in line with the UN Convention.
Everything, of course, will have to be verified and punctually monitored, in the coming years, at the time of the concrete application of the provisions mentioned above, but we believe that the road taken is the right one, to finally respond to the request for full and integral citizenship of persons with disabilities and their families, arriving at a more just, cohesive society, respectful of the many diversities. Arriving, in other words, at that substantial reform of the present welfare system, based on the protection system, in favour of a new model based on human, civil and social rights.