ABSTRACT Introduction This thesis explores the concept of the “After Us” (Dopo di Noi) framework as an expression of the evolution of community-based health and social welfare services for people with severe disabilities who are deprived of family support. The study originates from professional experience within territorial services and from the direct observation of the organizational, care-related, and relational challenges involved in managing complex frailty. Particular attention is given to the implementation of Italian Law No. 112/2016, examining the relationship between the regulatory framework, the organization of territorial services, and the development of pathways promoting autonomy and social inclusion for people with disabilities. The aim of the research was to understand how territorial services have adopted the principles of the “After Us” legislation almost ten years after its introduction and to identify the critical issues that still affect the practical implementation of care pathways. Materials and Methods The research was conducted using a qualitative approach based on legislative analysis and the observation of organizational dynamics developed through professional experience within ASL Roma 1, District 15. The empirical component consisted of structured information gathering and interviews with 15 professionals working within the territorial health and social care network, including nurses, social workers, and other professionals involved in the management of complex frailty. The main areas investigated included the activation of services provided under the “After Us” framework, independent living and housing pathways, difficulties faced by families in accessing services, the level of integration between health and social care sectors, and organizational challenges within territorial care pathways. Results The analysis highlighted a gradual development of territorial models focused on multidimensional care for people with disabilities, with increasing attention to independent living and housing autonomy. However, significant challenges remain, including organizational fragmentation, staff shortages, and difficulties in ensuring continuity of care and long-term project sustainability. Interviewed professionals also reported that many families continue to experience a substantial caregiving burden and difficulties navigating the service network. The territorial experience confirmed the strategic importance of integrated collaboration among health services, social services, Single Access Points (PUA), Territorial Operations Centers (COT), and Third Sector organizations in developing truly personalized care pathways. Conclusions The findings confirm that the “After Us” framework represents one of the major organizational and cultural challenges of contemporary territorial welfare systems. The quality of care pathways depends on the ability of institutions to build integrated care networks based on continuity of care, personalization of interventions, and the centrality of the person with disabilities. Recent reforms introduced through the National Recovery and Resilience Plan (PNRR) and Ministerial Decree 77/2022 provide an important opportunity to strengthen community healthcare and integrated health and social care models. However, these reforms must be supported by structural investments, professional training, and effective collaboration among services, families, and local communities in order to achieve their full potential.
ABSTRACT Introduzione La presente tesi affronta il tema del “Dopo di noi” quale espressione dell’evoluzione del welfare sociosanitario territoriale rivolto alle persone con disabilità grave prive del sostegno familiare. L’elaborato nasce dall’interesse professionale maturato all’interno dei servizi territoriali e dall’osservazione diretta delle difficoltà organizzative, assistenziali e relazionali che caratterizzano la presa in carico delle fragilità complesse. L’analisi si concentra in particolare sull’attuazione della Legge n. 112/2016, approfondendo il rapporto tra quadro normativo, organizzazione dei servizi territoriali e costruzione dei percorsi di autonomia e inclusione sociale delle persone con disabilità. L’obiettivo della ricerca è stato quello di comprendere come, a quasi dieci anni dall’introduzione della normativa, i servizi territoriali abbiano recepito i principi del “Dopo di noi” e quali criticità risultino ancora presenti nella concreta applicazione dei percorsi assistenziali. Materiali e metodi La ricerca è stata sviluppata attraverso un approccio qualitativo basato sull’analisi normativa e sull’osservazione delle dinamiche organizzative territoriali maturate nell’esperienza professionale all’interno dell’ASL Roma 1 – Distretto 15. La parte empirica è stata realizzata mediante la raccolta di informazioni strutturate e interviste con 15 professionisti appartenenti alla rete sociosanitaria territoriale, tra cui infermieri, assistenti sociali e operatori coinvolti nella presa in carico delle fragilità complesse. Le principali aree indagate hanno riguardato l’attivazione dei servizi previsti dal “Dopo di noi”, i percorsi di autonomia abitativa, le difficoltà delle famiglie nell’accesso ai servizi, il livello di integrazione tra area sanitaria e sociale e le criticità organizzative presenti nei percorsi territoriali. Risultati L’analisi dei dati raccolti ha evidenziato un progressivo sviluppo dei modelli territoriali orientati alla presa in carico multidimensionale della persona con disabilità, con una crescente attenzione ai percorsi di vita indipendente e autonomia abitativa. Dall’indagine emerge tuttavia la persistenza di criticità significative legate alla frammentazione organizzativa, alla carenza di personale e alla difficoltà di garantire continuità progettuale ai percorsi attivati. Gli operatori intervistati hanno inoltre evidenziato come molte famiglie continuino a vivere condizioni di forte sovraccarico assistenziale e difficoltà di orientamento all’interno della rete dei servizi. L’esperienza territoriale ha confermato l’importanza strategica del lavoro integrato tra servizi sanitari, sociali, PUA, COT ed enti del Terzo Settore nella costruzione di percorsi realmente personalizzati. Conclusioni La ricerca conferma come il “Dopo di noi” rappresenti oggi una delle principali sfide organizzative e culturali del welfare territoriale contemporaneo. La qualità dei percorsi dipende dalla capacità delle istituzioni di costruire reti integrate di presa in carico, fondate sulla continuità assistenziale, sulla personalizzazione degli interventi e sulla centralità della persona con disabilità. Le recenti riforme introdotte dal PNRR e dal D.M. 77/2022 possono costituire un’importante opportunità di sviluppo per il rafforzamento della sanità territoriale e dei modelli di integrazione sociosanitaria, purché accompagnate da investimenti strutturali, formazione professionale e reale collaborazione tra servizi, famiglie e comunità locali.
DISABILITÀ E POLITICHE DI WELFARE SOCIALE: IL MODELLO DEL “DOPO DI NOI” TRA INCLUSIONE E AUTONOMIA
VISCONTI, ROSSELLA
2025/2026
Abstract
ABSTRACT Introduction This thesis explores the concept of the “After Us” (Dopo di Noi) framework as an expression of the evolution of community-based health and social welfare services for people with severe disabilities who are deprived of family support. The study originates from professional experience within territorial services and from the direct observation of the organizational, care-related, and relational challenges involved in managing complex frailty. Particular attention is given to the implementation of Italian Law No. 112/2016, examining the relationship between the regulatory framework, the organization of territorial services, and the development of pathways promoting autonomy and social inclusion for people with disabilities. The aim of the research was to understand how territorial services have adopted the principles of the “After Us” legislation almost ten years after its introduction and to identify the critical issues that still affect the practical implementation of care pathways. Materials and Methods The research was conducted using a qualitative approach based on legislative analysis and the observation of organizational dynamics developed through professional experience within ASL Roma 1, District 15. The empirical component consisted of structured information gathering and interviews with 15 professionals working within the territorial health and social care network, including nurses, social workers, and other professionals involved in the management of complex frailty. The main areas investigated included the activation of services provided under the “After Us” framework, independent living and housing pathways, difficulties faced by families in accessing services, the level of integration between health and social care sectors, and organizational challenges within territorial care pathways. Results The analysis highlighted a gradual development of territorial models focused on multidimensional care for people with disabilities, with increasing attention to independent living and housing autonomy. However, significant challenges remain, including organizational fragmentation, staff shortages, and difficulties in ensuring continuity of care and long-term project sustainability. Interviewed professionals also reported that many families continue to experience a substantial caregiving burden and difficulties navigating the service network. The territorial experience confirmed the strategic importance of integrated collaboration among health services, social services, Single Access Points (PUA), Territorial Operations Centers (COT), and Third Sector organizations in developing truly personalized care pathways. Conclusions The findings confirm that the “After Us” framework represents one of the major organizational and cultural challenges of contemporary territorial welfare systems. The quality of care pathways depends on the ability of institutions to build integrated care networks based on continuity of care, personalization of interventions, and the centrality of the person with disabilities. Recent reforms introduced through the National Recovery and Resilience Plan (PNRR) and Ministerial Decree 77/2022 provide an important opportunity to strengthen community healthcare and integrated health and social care models. However, these reforms must be supported by structural investments, professional training, and effective collaboration among services, families, and local communities in order to achieve their full potential.| File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.12075/26946