Lives, choices, territories: Life Project, Quality of Life, Capabilities and Person-Centred Planning in light of Legislative Decree 62/2024

Titolo Rivista EDUCATION SCIENCES AND SOCIETY
Autori/Curatori Antonio Cuccaro, Chiara Gentilozzi, Claudia Maulini
Anno di pubblicazione 2025 Fascicolo 2025/2
Lingua Italiano Numero pagine 19 P. 136-154 Dimensione file 0 KB
DOI 10.3280/ess2-2025oa21049
Il DOI è il codice a barre della proprietà intellettuale: per saperne di più clicca qui

Vedi l'articolo Scarica l'articolo open access

FrancoAngeli è membro della Publishers International Linking Association, Inc (PILA)associazione indipendente e non profit per facilitare (attraverso i servizi tecnologici implementati da CrossRef.org) l’accesso degli studiosi ai contenuti digitali nelle pubblicazioni professionali e scientifiche

In the context of the reform of the Italian system following Legislative Decree 62/2024, the Individual, Personalised and Participatory Life Plan takes on a central regulatory position. This paper aims to offer a theoretical-empirical analysis and an operational interpretation based on the current regulatory and scientific landscape. The objective is twofold: on the one hand, to increase conceptual understanding of the Life Project in relation to models of person-centred planning, supported decision-making and theories of quality of life; on the other hand, to provide a reflection on possible guidelines and recommendations for the design, implementation and evaluation of the Life Project across local contexts, starting from a focus on the regional model of Umbria. Through a systematic review of international literature on effectiveness, challenges and best practices, a reflection was carried out on strengths, organisational critical issues, training needs, outcome indicators and possible research perspectives. The contribution is aimed not only at social, educational and health service providers, researchers and the educational community, but also at policy makers and bodies that determine the implementation guidelines of national legislation.

Parole chiave:Life Project;quality of life;person-centred planning;supported decision-making;multidimensional assessment;territorial governance

  1. Al-Azawei A., Serenelli F., & Lundqvist K. (2016). Universal Design for Learning (UDL): A content analysis of peer-reviewed journal papers from 2012 to 2015. Journal of the Scholarship of Teaching and Learning, 16(3): 39-56. Doi: 10.14434/josotl.v16i3.19295.
  2. Alonso M. Á. V., Schalock R. L., & Sánchez L. E. G. (2021). The Quality of Life Supports Model: Twenty-five years of parallel paths have come together. Siglo Cero, 52(3): 9-28.
  3. Andersson V., Sawatzky R., & Öhlén J. (2022). Relating person-centredness to quality-of-life assessments and patient-reported outcomes in healthcare: A critical theoretical discussion. Nursing Philosophy, 23(3), e12391. Doi: 10.1111/nup.12391.
  4. Ansell C., & Gash A. (2008). Collaborative governance in theory and practice. Journal of Public Administration Research and Theory, 18(4): 543-571. Doi: 10.1093/jopart/mum032.
  5. Balboni G., Coscarelli A., Giunti G., & Schalock R.L. (2013). The assessment of the quality of life of adults with intellectual disability: The use of self-report and report of others assessment strategies. Research in Developmental Disabilities, 34(11): 4248-4254. Doi: 10.1016/j.ridd.2013.09.009.
  6. Beadle-Brown J., Bigby C., & Bould E. (2016). Quality of life outcomes for people with intellectual disabilities in different residential settings: A systematic review. Journal of Applied Research in Intellectual Disabilities, 29(5): 508-524. Doi: 10.1111/jar.12214.
  7. Bigby C., & Beadle-Brown J. (2018). Improving quality of life outcomes in supported accommodation for people with intellectual disability: What makes a difference? Journal of Applied Research in Intellectual Disabilities, 31(2): 182-196. Doi: 10.1111/jar.12291.
  8. Brown I., Hatton C., & Emerson E. (2013). Quality of life indicators for individuals with intellectual disabilities: Extending current practice. Intellectual and Developmental Disabilities, 51(5): 316-332. Doi: 10.1352/1934-9556-51.5.316.
  9. Buxton H., McKenna K., & Flynn S. (2024). Measuring quality of life of adults with intellectual disabilities: Development and preliminary validation of the Personal Outcomes Scale. Journal of Applied Research in Intellectual Disabilities, 37(2): 345-360. Doi: 10.1111/jar.13189.
  10. Colver A., McConachie H., Le Couteur A., Dovey-Pearce G., Mann K., McDonagh J. E., … Parr J. R. (2018). A longitudinal, observational study of the transition of young people with complex health needs from child to adult health services ‒ Transition study. Archives of Disease in Childhood, 103(6): 566-573. Doi: 10.1136/archdischild-2017-313948.
  11. Davidson G., Kelly B., Macdonald G., Rizzo M., Lombard L., Abogunrin O., Clift-Matthews V., & Martin A. (2015). Supported decision making: A review of the international literature. International Journal of Law and Psychiatry, 38(1): 61-67. Doi: 10.1016/j.ijlp.2015.01.008.
  12. Downs J., Keeley J., Skoss R., et al. (2024). Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability. International Journal for Equity in Health, 23, 119. Doi: 10.1186/s12939-024-02204-5.
  13. Francis C. J., Johnson A., & Wilson R. L. (2024). Supported decision‐making interventions in mental healthcare: A systematic review of current evidence and implementation barriers. Health Expectations, 27(2), e14001. Doi: 10.1111/hex.14001.
  14. Friedman C. (2018). The Personal Outcome Measures®: Measuring person-centred outcomes for people with disabilities. Disability and Health Journal, 11(3): 390-396. Doi: 10.1016/j.dhjo.2017.12.003.
  15. Giaconi C. (2015). Qualità della vita e adulti con disabilità. Percorsi di ricerca e prospettive inclusive (pp. 1-143). Milano: FrancoAngeli.
  16. Glasby J., & Littlechild R. (2009). Direct payments and personal budgets: Putting personalisation into practice. Bristol: Policy Press. Doi: 10.1332/policypress/9781847421085.001.0001.
  17. Gómez L. E., Monsalve A., Morán M. L., Alcedo M. A., Lombardi M., & Schalock R. L. (2021). A Quality of Life Supports Model: Six research-focused steps to guide systems change. Research in Developmental Disabilities, 110, 103858. Doi: 10.1016/j.ridd.2020.103858.
  18. Gómez L. E., Verdugo M. Á., & Alcedo M. A. (2021). Quality of life and support strategies framework: A roadmap for research, practice, and policy. Frontiers in Psychology, 12, 774836. Doi: 10.3389/fpsyg.2021.774836.
  19. Grandisson M., Hébert M., & Thibeault R. (2014). A systematic review on how to conduct evaluations in community-based rehabilitation. Disability and Rehabilitation, 36(4): 265-275. Doi: 10.3109/09638288.2013.785602.
  20. Kaehne A., & O’Connell C. (2014). Person-centred reviews as a mechanism for planning the post-school transition of young people with intellectual disability. Journal of Intellectual Disability Research, 58(7): 603-613. Doi: 10.1111/jir.12058.
  21. Kazepov Y., & Barberis E. (2013). Social assistance governance in Europe: Towards a multilevel perspective. In: I. Marx & K. Nelson (Eds.), Minimum Income Protection in Flux (pp. 217-248). Palgrave Macmillan.
  22. Kohn N.A., & Blumenthal J.A. (2014). A critical assessment of supported decision-making for persons with disabilities. Disability and Health Journal, 7(1, Suppl): S40-S43. Doi: 10.1016/j.dhjo.2013.08.012.
  23. Lascioli A., & Pasqualotto L. (2021). Progetto individuale, vita adulta e disabilità. Prospettive e strumenti su base ICF (pp. 1-227). Carocci.
  24. Mäki-Opas T., Pieper R., & Vaarama M. (2022). Exploring the capability approach to quality of life in disadvantaged population groups. Scientific Reports, 12(1), 15248. Doi: 10.1038/s41598-022-18877-3.
  25. Manthorpe J., Stevens M., Rapaport J., Harris J., Jacobs S., Challis D., … Knapp M. (2011). Individual budgets and adult safeguarding: Parallel or converging tracks?. Journal of Social Work, 11(4): 422-438. Doi: 10.1177/1468017310379452.
  26. McCausland D., McCallion P., & McCarron M. (2021). The potential for person-centred planning to support the community participation of adults with an intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disabilities, 34(5): 1181-1194. Doi: 10.1111/jar.12879.
  27. Mihut G., McCoy S., & Maître B. (2021). A capability approach to understanding academic and socio-emotional outcomes of students with special educational needs in Ireland. Oxford Review of Education, 47(1): 105-121. Doi: 10.1080/03054985.2021.1973982.
  28. Morán M. L., Gómez L. E., Alcedo M. A., Monsalve A., Lombardi M., & Schalock R. L. (2023). The Quality of Life Supports Model as a vehicle for implementing policies and practices to support people with intellectual and developmental disabilities. International Journal of Environmental Research and Public Health, 20(9), 5705. Doi: 10.3390/ijerph20095705.
  29. Murray S. A., Boyd K., Moine S., Kendall M., Macpherson S., Mitchell G., & Amblàs-Novellas J. (2024). Using illness trajectories to inform person centred, advance care planning. BMJ, 384, e067896. Doi: 10.1136/bmj-2021-067896.
  30. Needham C., & Glasby J. (2015). Personalisation ‒ love it or hate it?. Journal of Integrated Care, 23(5): 268-276.
  31. Nieuwenhuijse A. M., Willems D. L., van Goudoever J. B., Olsman E., & Echteld M. A. (2019). Quality of life of persons with profound intellectual and multiple disabilities. Journal of Intellectual & Developmental Disability, 44(3): 261-271. Doi: 10.3109/13668250.2017.1388913.
  32. Nilsen P. (2015). Making sense of implementation theories, models and frameworks. Implementation Science, 10(1), 53. Doi: 10.1186/s13012-015-0242-0.
  33. Nota L., Soresi S., & Ferrari L. (2014). Enhancing self-determination in young adults with intellectual disability: An intervention study. Journal of Intellectual Disability Research, 58(9): 861-872. Doi: 10.1111/jir.12095.
  34. Nussbaum M. C. (2011). Creating capabilities: The human development approach. Cambridge, MA: Harvard University Press.
  35. O’Brien J. & Mount B. (2005). Make a difference: A guidebook for person-centered direct Support. Toronto: Inclusion Press.
  36. Pijpers E. J., et al. (2025). The capability approach in rehabilitation: Developing a multidisciplinary outpatient rehabilitation intervention for people with neuromuscular diseases. Disability and Rehabilitation. Doi: 10.1080/09638288.2024.2342494.
  37. Ranci C., Brandsen T., & Sabatinelli S. (2014). New social risks and the role of local welfare: An introduction. In: Social vulnerability in European cities: The role of local welfare in times of crisis (pp. 3-30). London: Palgrave Macmillan UK.
  38. Ratti V., Hassiotis A., Crabtree J., Deb S., Gallagher P., & Unwin G. (2016). The effectiveness of person-centred planning for people with intellectual disabilities: A systematic review. Research in Developmental Disabilities, 57: 63-84. Doi: 10.1016/j.ridd.2016.06.015.
  39. Regione Umbria (2025). D.Lgs 62/2024 – Linee di indirizzo e governance della Regione Umbria (Allegato A). Perugia: Regione Umbria. -- <a href="https://www.regione.umbria.it/documents/18/26157649/DG_0025386_2025.pdf">https://www.regione.umbria.it/documents/18/26157649/DG_0025386_2025.pdf</a>.
  40. Romeo F. P. (2025). Dalla vita “mortificata” al progetto di vita indipendente. Deprivazione giovanile e politiche educative-II. Educazione. Giornale di pedagogia critica, 14(1).
  41. Ryan S., et al. (2024). Using a Capability Approach to explore how people with intellectual disabilities can be supported to lead flourishing lives. Journal of Applied Research in Intellectual Disabilities. Doi: 10.1111/jar.13299.
  42. Schur L., Kruse D., & Blasi J. (2009). Is disability disabling in all workplaces? Workplace disparities and corporate culture. Industrial Relations, 48(3): 381-410.
  43. Schur L., Kruse D., Blasi J., & Blanck P. (2014). Accommodating employees with and without disabilities. Human Resource Management, 53(4): 593-621. Doi: 10.1002/hrm.21607.
  44. Schweiger G. (2025). The Capability Approach as a normative foundation for social work with socially disadvantaged children and youth. Social Sciences, 14(6), 326. Doi: 10.3390/socsci14060326.
  45. Sen A. (1999). Development as freedom. New York: Alfred A. Knopf.
  46. Shogren K. A., Wehmeyer M. L., Palmer S. B., Forber-Pratt A. J., Little T. D., & López S. J. (2015). Causal agency theory: Reconceptualizing a functional model of self-determination. Review of Educational Research, 85(2): 217-245. Doi: 10.3102/0034654314554431.
  47. Steinfeld E., & Maisel J. (2012). Universal design: Creating inclusive environments. Hoboken, NJ: Wiley. Doi: 10.1002/9781118418945.
  48. Test D. W., Mazzotti V. L., Mustian A. L., Fowler C. H., Kortering L., & Kohler P. (2009). Evidence-based secondary transition predictors for improving postschool outcomes for students with disabilities. Career Development for Exceptional Individuals, 32(3): 160-181. Doi: 10.1177/0885728809346960.
  49. Trani J.-F., & Caught E. (2011). Disabilities through the Capability Approach lens: Implications for public policies. Alter, 5(3): 143-157. Doi: 10.1016/j.alter.2011.04.001.
  50. UN General Assembly (2007). Convention on the Rights of Persons with Disabilities (A/RES/61/106). -- <a href="https://www.refworld.org/legal/resolution/unga/2007/en/49751">https://www.refworld.org/legal/resolution/unga/2007/en/49751</a>.
  51. Verdugo M. Á., Navas P., Gómez L. E., & Schalock R. L. (2012). The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research, 56(11): 1036-1045. Doi: 10.1111/j.1365-2788.2012.01585.x.
  52. Watson J. (2016). Assumptions of decision-making capacity: The role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability. Laws, 5(1), 6. Doi: 10.3390/laws5010006.
  53. World Health Organization (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: WHO. -- <a href="https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health">https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health</a>.

Antonio Cuccaro, Chiara Gentilozzi, Claudia Maulini, Lives, choices, territories: Life Project, Quality of Life, Capabilities and Person-Centred Planning in light of Legislative Decree 62/2024 in "EDUCATION SCIENCES AND SOCIETY" 2/2025, pp 136-154, DOI: 10.3280/ess2-2025oa21049