Life project

Life project (Italian: Progetto di vita) of the person with disability (Law no. 104 of February 5, 1992, Article 3[1]) was introduced for the first time in the Italian regulatory system by Law no. 328 of 8 November 2000[2] and it represents the heart of Law no. 112 of 22 June 2016, which has among its fundamental principles the activation of paths to promote the well-being, full social inclusion and autonomy of people with disabilities.[3] A systemic approach to the Life Project also represents the guarantee element of rights and quality of life aimed at giving full effect to the principle of social inclusion expressed in Article 19 of the Convention on the Rights of Persons with Disabilities.[3] The latter provides that every person with disabilities is guaranteed the right to full integration in the community by ensuring equal freedom of choice as well as full involvement in society life.[3][4]

Individual project

The concept of Life Project was introduced in Italy by Law no. 328 of 8 November 2000 called "Framework Law for the implementation of the integrated system of social interventions and services" which in Article 14 paragraph 2 provides for the preparation of an "individual project" aimed at the full inclusion of the person with disabilities in the family and social context and within pathways aimed at school and work inclusion.[2] It is expected that this project is prepared by municipalities in agreement with Local Health Units.[2]

«Individual project includes, in addition to the diagnostic-functional assessment, care and rehabilitation services charged to the National Health Service, services to the person [...], as well as the economic measures necessary to overcome conditions of poverty, marginalisation and social exclusion.»

— art. 14 paragraph 2, Law no. 328/2000[2]

Starting with Law no. 328 of 8 November 2000, the adoption of an innovative approach to the provision of welfare services is promoted that goes beyond the purely "assistance" perspective and centralizes actions through the creation of a real project.[5] As argued by Arconzo, Ragone and Bissaro,[5] what is defined as a "project model" (in Italian "modello progettuale") is introduced, whose actions are aimed at achieving objectives defined on the basis of a multidimensional assessment of the needs of the person who is directly involved in the path.

In this direction, the definition of "individual project" adopted by Law no. 328 of 8 November 2000 focuses attention on the centrality of the person as the point of convergence of the actions implemented by the welfare services system.[6] As stated by Marco Rasconi, president of Unione italiana lotta alla distrofia muscolare (Italian Union fight to muscular dystrophy), the construction and implementation of an "individual project" promotes "the global taking charge of the person with disabilities".[6]

«In its definition and implementation, the Life project thus becomes a dynamic process capable of adapting to the needs of people who change in different stages of life, ensuring continuity in the processes. Its construction is never done by one person. It is the result of interaction between several people: the person with a disability, their family and who is in charge of her/him. We would therefore have aspects expressed, aspects detected and shared.»

— Marco Rasconi, Ci vuole un Progetto di Vita[6]

The potential that lies in the construction of the Project of Life is found in the possibility of putting at the center the person who is involved in the choices related to her/his life and pathways of social inclusion.[7] By incorporating the needs and aspirations expressed by the beneficiary within a personalized pathway, it is possible to respond through a global and concerted action among all those involved, unlike the response capacity that could arise from sectoral and distinct interventions that look at the person as the addressee of individual services without transversal coordination.[3]

Policies in Italy and Europe

"Two-year action programme for the promotion of the rights and integration of people with disabilities",[8][9] adopted for the first time by the Italian Government in 2013, reinforces the importance that lies in the drafting of the Life project of the person with disabilities.[3] As underlined by Anffas, this program recognizes in the full implementation of the life project a real "perfect subjective right and therefore fully enforceable" (in Italian ""diritto soggettivo perfetto e quindi pienamente esigibile").[3] Within the programme, specific areas of action are identified as priorities with respect to the development of interventions aimed at ensuring respect for the rights of persons with disabilities.[8][9] These action lines contribute to the achievement of the objectives of the Convention on the Rights of Persons with Disabilities and the European Disability Strategy 2010–2020.[8][10] The latter was defined in 2010 by the European Commission starting from the principles expressed by the Convention on the Rights of Persons with Disabilities and as an integration of the Europe 2020[11] strategy and the Charter of Fundamental Rights of the European Union[12] with the aim of guaranteeing the protection of the rights of persons with disabilities on the basis of the principle of equality.[10] Among the areas of action identified by the European Disability Strategy 2010–2020, in addition to promoting the principles of accessibility, participation and equality, specific reference is made to the different areas involved in the life of the person starting from the issue related to health as well as the school and work context with a view to full social inclusion.[10]

In the same way the European Disability Strategy 2021-2030[13] identifies priority areas towards which to direct interventions to be implemented through a cross-sectoral approach, following the path traced by 2030 Agenda for Sustainable Development,[14] with particular reference to the enhancement of the principle of quality of life and the promotion of pathways to autonomy aimed at deinstitutionalization.[13]

Life project for "After us" (in Italian "Dopo di Noi")

The centrality of the Life Project (intended as "individual project" referred to in Article 14 of Law no. 328 of 8 November 2000) appears to be among the founding principles of Law no. 112 of 22 June 2016, better known as "After us" (in Italian "Dopo di Noi") Law, containing "Provisions on assistance for people with severe disabilities without family support".[15] As supported by Anffas in the construction of the Life project lies the principle for the activation of paths to promote the well-being, full social inclusion and autonomy of people with disabilities.[3][15]

The law provides for measures of assistance, care and protection for the person with disabilities when he/she can no longer be supported by the family through a progressive taking charge of the person during the life of parents and caregivers allowing them to deal with the concern for the future of their children when they will can no longer be with them in the so-called "After us" (in Italian "Dopo di Noi").[15]

As argued by Senator Annamaria Parente, rapporteur in the Senate of Law no. 112 of 22 June 2016, the Life Project is placed at the center of the law tracing a path that wants to lead to build the "After us" (in Italian "Dopo di Noi") in "during us" (in Italian "durante noi") to ensure that this can become an "approach of all" for the construction of an integrated and proximity welfare and for which "After us" (in Italian "Dopo di Noi") Law can become a lighthouse.[16][17][18]

The Interministerial Decree implementing Law no. 112 of 22 June 2016 defines in Article 2 paragraphs 2 and 3 the "personalized project":[19]

«The project identifies the specific supports that the severely disabled person needs, starting from the health, social and social-healthcare services [...]. The personalised project contains the project budget, as a set of all the human, economic, instrumental resources that can be used in a flexible, dynamic and integrated way. The personalised project is defined by ensuring the widest possible participation of the person with severe disability, taking into account his/her wishes, expectations and preferences and also providing for his/her full involvement in the subsequent monitoring and evaluation. Where the person with severe disability is not in a position to express his or her full will, he or she is supported by his or her parents or those who protect their interests.»

— Article 2 paragraphs 2 and 3, Ministerial Decree 23.11.2016[19]

"After us" (in Italian "Dopo di Noi") Law promotes a real paradigm shift recognizing in the subsidiary matrix necessary for the realization of life projects a fundamental and propaedeutic element for the realization of "After us" (in Italian "Dopo di Noi") in "during us" (in Italian "durante noi") activating projects triggered by a "bottom-up" approach.[20] As argued by Bollani, "Law no. 112 designs "After us" as a co-design action that involves all these stakeholders (parents and children, private social and public service operators) to work together".[20]

Since Life project approach is aimed at the deinstitutionalization of the person with disabilities, the housing situation in its dimension of inclusion turns out to be crucial, for this reason it is important to design innovative models that develop pathways of social inclusion aimed at the creation of a housing welfare.[21]

The person with disabilities, through his or her life project, is placed at the center of the system as

«the beneficiary of the project that from being the object of intervention decided by others becomes the subject of the project, in which he or she participates by right because it concerns his or her life.»

— Giampiero Griffo, 2020[22]

Notes

  1. ^ "Legge 5 febbraio 1992, n. 104, Legge-quadro per l'assistenza, l'integrazione sociale e i diritti delle persone handicappate" [Law no. 104 of February 5, 1992, Framework law for assistance, social integration and rights of disabled people]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-18.
  2. ^ a b c d "Legge 8 novembre 2000, n. 328, Legge quadro per la realizzazione del sistema integrato di interventi e servizi sociali" [Law no. 328 of 8 November 2000, Framework Law for the implementation of the integrated system of social interventions and services]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-17.
  3. ^ a b c d e f g Anffas Nazionale. "Progetto di vita - Anffas" [Life project]. Anffas.net (in Italian). Retrieved 2021-06-17.
  4. ^ "Convention on the Rights of Persons with Disabilities – Articles". www.un.org. 2015-05-14. Retrieved 2021-06-17.
  5. ^ a b Giuseppe Arconzo; Giada Ragone; Stefano Bissaro (2020). "Il diritto delle persone con disabilità al progetto individuale" [The right of people with disabilities to individual project]. Le Regioni (1): 31–74. doi:10.1443/97276. ISSN 0391-7576.
  6. ^ a b c Rasconi, Marco (2018). "Ci vuole un Progetto di Vita" [It takes a Life Project]. welforum.it (in Italian). Retrieved 2021-06-18.
  7. ^ Faini, Marco; Gioga, Gianmaria; Milani, Paola (2007). "La presa in carico delle persone con disabilità. Norme, esperienze ed analisi da Campania Lombardia e Sardegna, Empowernet, FISH (Federazione Italiana per il Superamento dell'Handicap)" [Taking charge of people with disabilities. Norms, experiences and analysis from Campania, Lombardy and Sardinia, Empowernet, FISH (Federazione Italiana per il Superamento dell'Handicap)] (PDF). www.fishonlus.it (in Italian). Retrieved 2018-01-18.
  8. ^ a b c "Decreto del Presidente della Repubblica 4 ottobre 2013, Adozione del programma di azione biennale per la promozione dei diritti e l'integrazione delle persone con disabilità" [Decree of President of Italian Republic of 4 October 2013, Adoption of the two-year action programme for the promotion of the rights and integration of people with disabilities]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-18.
  9. ^ a b "Decreto del Presidente della Repubblica 12 ottobre 2017, Adozione del secondo programma di azione biennale per la promozione dei diritti e l'integrazione delle persone con disabilità" [Decree of President of Italian Republic 12 October 2017, Adoption of the second two-year action programme for the promotion of the rights and integration of people with disabilities]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-18.
  10. ^ a b c "Communication from the Commission to the European Parliament, the Council, the European economic and social Committee and the Committee of the Regions. European Disability Strategy 2010-2020: A Renewed Commitment to a Barrier-Free Europe". eur-lex.europa.eu. 2010. Retrieved 2021-06-18.
  11. ^ "Europe 2020. A European strategy for smart, sustainable and inclusive growth" (PDF). ec.europa.eu. 2010.
  12. ^ "Charter of Fundamental Rights of the European Union (2000/C 364/01)" (PDF). europarl.europa.eu. 2000.
  13. ^ a b Communication from the Commission to the European Parliament, the Council, the European economic and social Committee and the Committee of the Regions. Union of Equality: European Commission presents Strategy for the Rights of Persons with Disabilities 2021-2030. ec.europa.eu
  14. ^ "Transforming our World: The 2030 Agenda for Sustainable Development" (PDF). sdgs.un.org. 2015.
  15. ^ a b c "Legge del 22 giugno 2016, n. 112, Disposizioni in materia di assistenza in favore delle persone con disabilità grave prive del sostegno familiare" [Law no. 112 of 22 June 2016, Provisions on assistance for people with severe disabilities without family support]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-18.
  16. ^ Parente, Annamaria (2020). "Dalla legge sul dopo di noi al Coronavirus: l'urgenza di ripensare l'assistenza per anziani e disabili" [From "Dopo di Noi" Law to Coronavirus: the urgency of rethinking care for elderly and people with disabilities]. Vita.it (in Italian). Retrieved 2021-06-18.
  17. ^ Parente, Annamaria (2019). "Tre anni di legge sul "dopo di noi": passare dal bisogno ai diritti" [Three years of the "After us" Law: moving from need to rights]. Vita.it (in Italian). Retrieved 2021-06-18.
  18. ^ Marina Morelli (2021). "Voglio diritti per le mie figlie anche "Dopo di noi"" [I want rights for my daughters also "After Us"]. www.editorialedomani.it (in Italian). Retrieved 2021-06-18.
  19. ^ a b "Decreto Ministeriale 23 novembre 2016, Requisiti per l'accesso alle misure di assistenza, cura e protezione a carico del Fondo per l'assistenza alle persone con disabilità grave prive del sostegno familiare, nonché ripartizione alle Regioni delle risorse per l'anno 2016" [Ministerial Decree of 23 November 2016, Requirements for access to the measures of assistance, care and protection borne by the Fund for the assistance of people with severe disabilities without family support, as well as allocation of resources to the Regions for the year 2016]. www.gazzettaufficiale.it (in Italian). Retrieved 2021-06-18.
  20. ^ a b Bollani, Marco (2021). "Dopo di noi: immaginare comunità di destino o servizi residenziali?" ["After us" (in Italian "Dopo di Noi"): envisioning destiny communities or residential services?]. Vita.it (in Italian). Retrieved 2021-06-18.
  21. ^ Cia G., Morena M., Oberti I., Pavesi A.S., (2019). L'impatto sul processo edilizio dei progetti di residenzialità inclusiva per persone fragili. In (pp 73-82): Lauria M.; Mussinelli E.; Tucci F. (eds) (2020). Producing Project. Maggioli. Santarcangelo di Romagna. 531 pp. ISBN 978-88-916-4308-7
  22. ^ De Carli, Sara (2020). "Le persone con disabilità nel Piano Colao" [People with disabilities in the Colao Plan]. Vita.it (in Italian). Retrieved 2021-06-18.