Author: Gaia Patarini, Visiting PhD Researcher, ALL Institute and University of Milan (Università degli studi di Milano).
Historically, persons with disabilities have been systematically denied the right to live independently and to make free choices about all the aspects of their lives. This was frequently based on the stereotype, still difficult to eradicate, that a person with disability is assumed not to be able to decide on their own life, to self-determine and to live independently in their chosen communities. This belief, combined with the physical and cultural inaccessibility of structures as well as with the placement of persons with disabilities in segregating structures, has led to a situation of institutionalisation, abandonment, exclusion and isolation. The UN Convention on the Rights of Persons with Disabilities (CRPD) has strongly countered stereotypes and institutionalisation by recognising in Article 19 «the equal right of all people with disabilities to live in the community, with choices equal to others». Several states parties have implemented and fulfilled this obligation by adopting a variety of different instruments and within this context, Italy has put in place a new legal framework. Such a framework offers an interesting example to reflect on how best to support independent living and inclusion within society.
These themes are at the heart of ALL research and link with the interdisciplinary research conducted here.
This blog post, after briefly recalling the core obligations laid out in Article 19 CRPD, presents the new Italian legal framework and highlights its strengths and weaknesses. In doing so, the present blog post intends to explore such a framework highlighting why it could be considered good practice, fuelling a stimulating debate on the subject.
Article 19 requires States Parties to «take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion, and participation in the community». The article is grounded in the fundamental human rights principle that all individuals are inherently equal in dignity and rights, and that every human life holds equal value. Further, using the words of the Committee on the Rights of Persons with Disabilities, it is also «one of the widest ranging and most intersectional articles of the Convention and has to be considered as integral to the full implementation of the Convention» (General comment No. 5, 2017, on living independently and being included in the community).
In the Italian legal system, the main instrument for safeguarding the right to independent living is the so called “Life Project”, which was at the forefront of the new ongoing Italian disability reform.
Originally the Life Project was regulated by the Law No. 328/2000 (Framework law for the realisation of the integrated system of interventions and social services) at article 14. This law provided an innovative idea of integrated planning based on the concept that individual interventions- about inclusion in school, work, social and family environments of people with physical, mental or sensory disabilities must be co-ordinated through the preparation of individual projects. Under Article 6 of this law, municipalities are recognized as the key institutional actor responsible for providing individuals with a truly effective, comprehensive, and personalized system of care. In partnership with local health authorities, they are tasked with drafting the Life Project, which consists of a personalized plan aimed at fostering the full social inclusion of persons with disabilities, following a thorough multidimensional assessment of their needs and circumstances. The overarching goal is to ensure that the care process is not fragmented or limited to isolated services but instead reflects a coordinated understanding of the individual’s needs – considering their family life, social relationships, educational journey, vocational training, and employment opportunities. The personalized plan thus becomes the core instrument through which the well-being and quality of life of the person with disabilities are promoted.
Recently, article 14 of Law No. 328/2000 was repealed by Legislative Decree No. 62/2024, which is part of a broader legal reform on disability, that marked the beginning of a new era of reform in the field of disability rights in Italy. In fact, this decree introduced not only a significant shift in the language used within the legal framework – moving toward terminology that is more respectful and aligned with contemporary principles – but also established a new procedure for assessing disability status, in accordance with the biopsychosocial model enshrined in the UNCRD.
The second part of the decree specifically addressed the Life Project, which has now been redefined as “personalized, individualized, and participatory”. This redefinition reflects a deeper commitment to recognizing and enhancing the role of persons with disabilities in the design, and planning of their own lives, thereby promoting their autonomy and freedom of choice in all aspects of daily living. According to Article 18 of the Decree n. 62, the Life Project is intended to implement the personal goals of individuals with disabilities, with the aim of improving their personal and health conditions across various areas of life. It aims to facilitate their social inclusion and participation in all life contexts on an equal basis with others.
More specifically, the Life Project identifies, in terms of quality, quantity, and intensity- the tools, resources, interventions, benefits, services, and reasonable accommodations necessary to eliminate and prevent barriers, and to provide the supports required for the individual’s inclusion and participation in different life domains. This includes but is not limited to education, higher education, housing, employment, and social life. Within this context, the most significant and genuinely respectful aspect of the autonomy and the right to independent living lies in the fact that it’s the person with disability, the holder of the Life Project: they may request its activation, contribute to its content, and exercise the right to propose amendments and additions in accordance with their wishes, expectations, and personal choices.
This model might prove a source of inspiration for other legal systems in implementing a person-centred model of choice in all the areas of life. It is, in fact, one of the few systems that effectively guarantees the right to independent living through a comprehensive, person-centred approach.
It reminds us that this is not merely about enabling choice in isolated areas of life but about providing a tool that allows individuals to make decisions regarding every aspect of their lives, on an equal basis with others, within a framework of interconnected services and support.
The individual is at the centre of this decision-making process, and the outcome – a personalized, individualized, and participatory project – is a flexible instrument that can and indeed must be adapted whenever the person’s desires, aspirations, living conditions, or family circumstances change.
It is perhaps precisely this aspect of “comprehensiveness” that is lacking in other systems aimed at protecting the right to independent living. While mechanisms to safeguard this right do exist, they are often fragmented and limited to specific areas of life for persons with disabilities.
Consider, for example, the proposed Irish “Personalized Budgets”, which offer people with disabilities choice and control over the supports they receive, by providing a budget to source their own supports rather than be supported through a disability service provider but that are limited to the health care system. In the Action Plan for Disability Services 2024-2026 – in according with the recommendations of Task Force on Personalised Budgets – it is expected that different models must be tested and evaluated before presenting proposals to Government on wider adoption of this approach. In that regard, Ireland might look at the Italian model where the concept of Life Project as laid out in the new Decree represents a significant step toward the full implementation of Article 19 of the CRPD. In this sense, Italy has once again leads he way in the field of tools for the protection of persons with disabilities, as already noted by Beth Ferri and Arlene Kanter in the article from which this blog takes its name, albeit with reference to the development of the right to education under Article 24 of the UNCRPD in Italy.
Legislative Decree No. 62/2024 demonstrates a concrete will to overcome a fragmented welfare model to embrace a person-centred perspective oriented toward self-determination, participation and inclusion. Recognizing the ownership of the project to the person with disabilities marks a profound cultural and legal change, which can be a virtuous example for other systems as well.
In summary, Italy’s refined “Life Project” is a significant advancement in operationalizing independent living rights- particularly through its person-centred and comprehensive approach. Addressing potential implementation challenges will be crucial for its sustained success and its role as a global exemplar.
