The Application of Quality of Life in Services for Persons with Intellectual and Developmental Disabilities: Lines of intervention in Spain and Italy

Journal title EDUCATION SCIENCES AND SOCIETY
Author/s Catia Giaconi, Miguel Ángel Verdugo, Noemi Del Bianco, Laura E. Gómez, Ilaria D'Angelo, Robert L. Schalock
Publishing Year 2022 Issue 2022/2
Language English Pages 18 P. 41-58 File size 0 KB
DOI 10.3280/ess2-2022oa14963
DOI is like a bar code for intellectual property: to have more infomation click here

View article Download Open Access article

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

The concept of quality of life (QOL) has become a measurable construct of great value to all people, including people with intellectual and developmental disabilities (IDD). In particular, the field of IDD is currently experiencing a paradigm shift related to beliefs, assumptions, policies, and practices concerning people with disabilities and their families and the place and role they play in society. This article starts by reconstructing the state of the art of the application of QOL in Social Services, reconstructing its research developments, operational declinations and influences in social policies in Spain and Italy.

Keywords: ; Quality of life; Supports; Quality of life supports model; Developmental disabilities; Intellectual disability; Social Services

  1. Aguayo V., Verdugo M. A., Arias V. B., Guillen V. M., & Amor A. M. (2019). Assessing support needs in children with intellectual disability and motor impairments: measurement invariance and group differences. Journal of Intellectual Disability Research, 63(12): 1413-1427. DOI: 10.1111/jir.12683
  2. Amor A. M., Fernandez M., Verdugo M.A., & Schalock R. L. (2020). Shaping the faces of the prism: Rights, supports, and quality of life for enhancing inclusion and opportunities in students with intellectual disability. Czlowiek, Niepelnosprawnosc, Spoleczenstwo, 49(3): 5-33. DOI: 10.5604/01.3001.0014.3573
  3. Amor A. M., Verdugo M. A., Arias B., Fernández M., & Aza A. (2021). Examining the suitability of the list of indicators describing age-related typical support needs. International Journal of Environmental Research and Public Health, 18: 764. DOI: 10.3390/ijerph18020764
  4. Baker A., Salisbury B., & Collins D. (2016). Changing service delivery systems: An example from Community Living British Columbia. In R. L. Schalock and K.D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of people with intellectual disability (pp. 149-166). American Association on Intellectual and Developmental Disabilities.
  5. Buntinx W. H. E., Tu Tan I., & Aldenkamp A. P. (2018). Support values through the eyes of the patient: An exploratory study into long-term support for persons with refractory epilepsy. Epilepsy and Behavior, 82: 155-163. DOI: 10.1016/j.yebeh.2018.02.031
  6. Buntinx W. H. E., & Schalock R. L. (2010). Models of disability, quality of life, and individualized supports: Implications for professional practice in intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 7(4), 283-294.
  7. Caldin R., & Giaconi C. (2021a). Disabilità e cicli di vita. Le famiglie tra seduttivi immaginari e plausibili realtà [Disability and lifecycles. Families between seductive imaginaries and plausible realities]. Milano: FrancoAngeli.
  8. Caldin R., & Giaconi C. (2021b). Pedagogia Speciale, famiglie e territori. Sfide e prospettive [Special pedagogy, families and territories. Challenges and perspectives]. Milano: FrancoAngeli.
  9. Cottini L., Croce L., Fedeli D., & Leoni M. (2008). La Supports Intensity Scale nel panorama riabilitativo italiano. Standardizzazione italiana e procedure psicometriche.
  10. Claes C., Van Hove G., Vandevelde S., van Loon J., & Schalock R. (2009). Evaluating the inter-respondent (consumer vs. staff) reliability and construct validity (SIS vs. Vineland) of the Supports Intensity Scale on a Dutch sample. Journal of Intellectual Disability Research, 53: 329-338.
  11. Claes C., Vandenbussche H., & Lombardi L. (2016). Human rights and quality of life domains: Identifying cross-cultural indicators. In R. L. Schalock and K. D. Keith (Eds.), Cross- cultural quality of life: Enhancing the lives of people with intellectual and developmental disabilities (2nd Ed.) (pp. 167-174). American Association on Intellectual and Developmental Disabilities.
  12. D’Angelo I. (2020). Pedagogia speciale per i servizi alle persone con disabilità complesse [Special pedagogy for services to people with complex disabilities]. Milano: FrancoAngeli.
  13. Del Bianco N. (2019). Autodeterminazione nelle persone con disabilità intellettive. Studi, ricerche e questioni di pedagogia speciale [Self-determination in people with intellectual disabilities. Studies, research, and issues in special education]. Milano: FrancoAngeli.
  14. Del Bianco N. (2021). Il Progetto Mongolfiera. Uno spazio e un tempo per diventare adulti. L’integrazione scolastica e sociale, 20(3): 28-51.
  15. Dizdarevic A., Ahmetovic Z., Malec D., Mujezinovic A., Ahmetovic M., Zilic F., & Mehmedinovic S. (2020). Analysis of Factor Validity of the Support Intensity Scale on Bosnian-Herzegovinian Sample. Advances in Cognitive Psychology, 16(2): 117.
  16. Esteban L., Navas P., Verdugo M. Á., & Arias V. B. (2021). Community living, intellectual disability and extensive support needs: A rights-based approach to assessment and intervention. International Journal of Environmental Research and Public Health, 18(6), e3175. DOI: 10.3390/ijerph180631
  17. Ferrari L., Nota L., & Soresi S. (2008). Conceptions of work in Italian adults with intellectual disability. Journal of Career Development, 34(4): 438-464.
  18. Giaconi C. (2015). Qualità della vita e adulti con disabilità. Percorsi di ricerca e prospettive inclusive [Quality of life and adults with disabilities. Research pathways and inclusive perspectives]. Milano: FrancoAngeli.
  19. Giaconi C., Capellini S. A., Del Bianco N., Taddei, A. &, D’Angelo I. (2018). Study Empowerment for inclusion. Education Sciences and Society, 9(2): 166-183.
  20. Giaconi C., & Del Bianco N. (2018). In azione: Prove di inclusione. Milano: FrancoAngeli.
  21. Giaconi C., Del Bianco N., D’Angelo I., & Sarchet T. (2022). Famiglie con giovani con disabilità intellettiva profonda e multipla: crisi o rinascita?. MeTis-Mondi educativi. Temi indagini suggestioni, 12(1): 178-195.
  22. Giaconi C., Del Bianco N., D’Angelo I., & Kraus A. (2020). New perspectives for Inclusive University Teaching: EduPlan4Inclusion. Education Sciences & Society, 11(1): 159-168.
  23. Giaconi C., Socci C., Fidanza B., Del Bianco N., d’Angelo I., & Capellini S. A. (2020). Il Dopo di Noi: nuove alleanze tra pedagogia speciale ed economia per nuovi spazi di Qualità di Vita. MeTis-Mondi educativi. Temi indagini suggestioni, 10(2): 274-291.
  24. Giaconi C., Taddei A., & Del Bianco N. (2021). La formazione dell’insegnante specializzato: il “dossier” come interfaccia tra teorie, laboratori e tirocini [Specialized teacher training: the “dossier” as an interface between theories, workshops and internships]. In M. Stramaglia (Ed.), Abitare il futuro. Politiche per la formazione (pp. 71-80). PensaMultimedia.
  25. Gomez L. E., Arias. B., Verdugo M.A., & Navas P. (2012). An outcomes-based assessment of quality of life in social services. Social Indicators Research, 106: 81-93. DOI: 10.1007/s11205-011-9794-9
  26. Gomez L. E., Monsalve A., Moran L., Alcedo M. A., Lombardi M., & Schalock R. L. (2020). Measurable indicators of CRPD for people with intellectual and developmental disabilities within the framework of quality of life. International Journal of Environmental Research and Public Health, 17, 5123. DOI: 10.3390/ijerph1
  27. Gómez L. E., Morán L., Al-Halabí S., Swerts C., Verdugo M.A., & Schalock R.L. (2022). Quality of life and the International Convention on the Rights of Persons with Disabilities: Consensus indicators for assessment. Psicothema, 34(2), 182-191. DOI: 10.7334/psicothema2021.574 7145123
  28. Gómez L. E., Schalock R. L., & Verdugo M. A. (2021a). A new paradigm in the field of intellectual and developmental disabilities: Characteristics and evaluation. Psicothema, 33(1): 28-35. DOI: 10.7334/psicothema2020.385
  29. Gómez L. E., Schalock R. L., & Verdugo M. A. (2021b). A Quality of Life Supports Model: Six research-focused steps to evaluate the model and enhance research practices in the field of IDD. Research in Developmental Disabilities, 119, 104112. DOI: 10.1016/j.ridd.2021.104112
  30. Gómez L. E., & Verdugo M. A. (2016). Outcomes evaluation. In R. L. Schalock and K. D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of people with intellectual disability (2nd Ed.) (pp. 71-80). American Association on Intellectual and Developmental Disabilities.
  31. Harpur P. (2012). Embracing the new disability rights paradigm: The importance of the Convention on the Rights of Persons with Disabilities. Disability and Society, 27: 1-14. DOI: 10.1080/09687599.2012.631794
  32. Ianes D., & Cramerotti S. (2009). Il piano educativo individualizzato. Progetto di vita (Vol. 1). Trento: Edizioni Erickson.
  33. Lacasta J. J. (2015). FEAPS, 50 años de unión por las personas con discapacidad intelectual y por sus familias [FEAPS, 50 years of union for people with intellectual disabilities and their families]. Siglo Cero, 46(1): 41-65. DOI: 10.14201/scero20154614165
  34. Lombardi M., Vandenbussche H., Claes C., Schalock R. L., De Maeyer J., & Vandevelde S. (2019). The concept of quality of life as a framework for implementing the UNCRPD. Journal of Policy and Practice in Intellectual Disabilities, 16(3): 180-190. DOI: 10.1111/jppi.12279
  35. Luckasson R., Coulter D. L., Polloway E. A., Reiss S., Schalock R. L., Snell M. E., Spitalnik D. M., & Stark J. A. (1992). Mental retardation: Definition, classification, and systems of supports (9th ed.). American Association on Mental Retardation.
  36. Maslow A. (1968). Toward a psychology of being. Van Nostrand.
  37. Mittler P. (2015). The UN Convention on the Rights of Persons with Disabilities: Implementing a paradigm shift. Journal of Policy and Practice in Intellectual Disabilities, 12: 79-89. DOI: 10.1111/jppi.12118
  38. Morales L., Morán L., & Gómez L.E. (2021). Evaluación de resultados personales relacionados con derechos en jóvenes con discapacidad intelectual y TEA [Assessment of rights-related personal outcomes in esar people with autism spectrum disorder and intellectual disability]. Siglo Cero, 52(3): 81-99.
  39. Morán L., Gómez L. E., & Alcedo M.A. (2019). Inclusión social y autodeterminación: los retos en la calidad de vida de los jóvenes con autismo y discapacidad intelectual [Social esarroll and self-determination: the challenges in the quality of life of youth with autism and intellectual disability]. Siglo Cero, 50(3): 29-46. DOI: 10.14201/scero20195032946
  40. Nussbaum M. C. (2011). Creating capabilities: The human development approach. Belknap Press of Harvard University.
  41. Reinders H. S., & Schalock R. L. (2014). How organizations can enhance the quality of life of their clients and assess their results: The concept of quality of life enhancement. American Journal on Intellectual and Developmental Disabilities, 119: 291-302. DOI: 10.1352/1944-7558-119.4.291
  42. Rodríguez G. (2015). Prólogo [Foreword]. In J. Calero, X. Fontcuberta, and A. García, Manual práctico de evaluación para políticas públicas en el ámbito de la discapacidad (pp. 9-12). CINCA.
  43. Schalock R. L., Baker A., Claes C., Gonzalez J., Malatest R., van Loon J., Verdugo M. A., & Wesley G. (2018c). The use of quality of life scores for monitoring and reporting, quality improvement, and research. Journal of Policy and Practice in Intellectual Disabilities, 15(3): 176-182. DOI: 10.1111/jppi.12250
  44. Schalock R. L., Brown I., Brown R., Cummins R. A., Felce D., Matikka L., Keith K. D., & Parmenter T. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disability: Report of an international panel of experts. Mental Retardation, 40: 457-470. DOI: 10.1352/1944-7558-119.4.291
  45. Schalock R. L., Gómez L. E., Verdugo M. A., & Claes, C. (2017). Evidence and evidence-based practices: Are we there yet?. Intellectual and Developmental Disabilities, 55: 112-119. DOI: 10.1352/1934-9556-55.2.112
  46. Schalock R. L., & Keith K. D. (2016.), Cross-cultural quality of life: Enhancing the lives of persons with disability. American Association on Intellectual and Developmental Disabilities.
  47. Schalock R. L., Luckasson R., & Shogren K. A. (2020). Going beyond environment to context: Leveraging the power of context to produce change. International Journal of Environmental Research and Public Health, 17(6): 1885. DOI: 10.3390/ijerph17061885
  48. Schalock R. L., Luckasson R., & Tassé M. J. (2021a). Intellectual disability: Definition, diagnosis, classification, and planning supports. American Association on Intellectual and Developmental Disabilities.
  49. Schalock R. L., Luckasson R., & Tassé M. J. (2021b). Ongoing transformation in the field of IDD: Taking action for future progress. Intellectual & Developmental Disability, 59(5): 380-391. DOI: 10.1352/1934-9556-59.5.380
  50. Schalock R. L., Luckasson R. L., Tassé M. J., & Shogren K.A. (2022). The IDD paradigm of shared citizenship: Its operationalization, application, evaluation, and shaping for tor the future. Intellectual and Developmental Disabilities, 60: 426-443. DOI: 10.1352/1934-9556-60.5.426
  51. Schalock R. L., Thompson J. R., & Tassé M. J. (2018b). A systematic approach to personal support plans. American Association on Intellectual and Developmental Disabilities.
  52. Schalock R. L., & Verdugo M. A. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
  53. Schalock R. L., & Verdugo M. A. (2013). The transformation of disabilities organizations. Intellectual and Developmental Disabilities, 51: 273-286. DOI: 10.1352/1934-9556-51.4.273
  54. Schalock R. L., & Verdugo M. A. (2019). International developments influencing the field of intellectual and developmental disabilities. In K. A. Keith (Ed.), Cross-cultural psychology: Contemporary themes and perspectives (2nd Ed.) (pp. 309-323). Wiley-Blackwell.
  55. Schalock R. L., Verdugo M. A., & Gómez L. E. (2011). Evidence-based practices in the field of intellectual and developmental disabilities: An international consensus approach. Evaluation and Program Planning, 34, 273–282. DOI: 10.1016/j.evalprogplan.2010.10.004
  56. Schalock R. L., Verdugo M. A., & Lee T. (2016). A systematic approach to an organization’s sustainability. Evaluation and Program Planning, 56: 56-63. DOI: 10.1016/j.evalprogplan.2016.03.005
  57. Schalock R. L., Verdugo M. A., & van Loon J. (2018a). Understanding organization transformation in evaluation and program planning. Evaluation and Program Planning, 67: 53-60. DOI: 10.1016/j.evalprogplan.2017.11.003
  58. Shogren K. A., Luckasson R., & Schalock R. L. (2021). Leveraging the power of context in disability policy development, implementation, and evaluation: Multiple applications to enhance personal outcomes. Journal of Disability Policy Studies, 31(4): 230-243. DOI: 10.1177/1044207320923656
  59. Stancliffe R. J., Arnold S. R.C., & Riches V. C. (2016). The supports paradigm. In R. L. Schalock and K. D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of people with intellectual disabilities (pp. 133-142). American Association on Intellectual and Developmental Disabilities.
  60. Tamarit J. (2015). La transformación de los servicios hacia la calidad de vida. Una iniciativa de innovación social de FEAPS [The transformation of services towards the quality of life. An initiative of social innovation from FEAPS]. Siglo Cero, 46(3): 47-71. DOI: 10.14201/scero20154634771
  61. Thompson J. R., Bradley V. J., Buntinx W., Schalock R. L., Shogren K. A., Snell M. E., Wehmeyer M. L., Borthwick-Duffy S., Coulter D. L., Craig E. P. M., Gomez S. C., Lachapelle Y., Luckasson R. A., Reeve A., Spreat S., Tassé M. J., Verdugo M. A., & Yeager M. H. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47: 135-146. DOI: 10.1352/1934-9556-47.2.135
  62. Thompson J. R., Bryant B. R., Schalock R. L., Shogren K. A., Tasse M. J., Wehmeyer M. L., Campbell E. M., Craig E. M., Hughes C., & Rotholz D. A. (2015). Supports Intensity Scale – Adult Version User’s Manual. American Association on Intellectual and Developmental Disabilities.
  63. Thompson J. R., Schalock R. L., Agosta J., Teninty L., & Fortune J. (2014). How the supports paradigm is transforming the developmental disabilities service system. Inclusion, 2: 86-99. DOI: 10.1352/2326-6988-2.2.86
  64. Thompson J. R., Wehmeyer M. L., Hughes C., Shogren K. A., Seo H., Little T. D., Schalock R. L., Realon R. E., Copeland S. R., Patton J. R., & Tasse M. J. (2016). Supports Intensity Scale-Children’s Version (SIS-C). American Association on Intellectual and Developmental Disabilities.
  65. Turnbull R., & Stowe M. (2017). A model for analyzing disability policy. Intellectual and Developmental Disabilities, 55: 223-233. DOI: 10.1352/1934-9556-55.4.223
  66. United Nations. (2006). Convention on the Rights of Persons with Disabilities. -- https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html.
  67. van Loon J. H., Bonham G. S., Peterson D. D., Schalock R. L., Claes C., & Decramer (2013). The use of evidence-based outcomes in systems and organizations providing services and supports to persons with intellectual disability. Evaluation and Program Planning, 36(1): 80-87. DOI: 10.1016/j.evalprogplan.2012.08.002
  68. Verdugo M. A. (2011). Dignidad, igualdad, esarrol, esarroll, autodeterminación y calidad de vida [Dignity, equality, freedom, inclusion, self-determination and quality of life]. Siglo Cero, 42(240): 18-23.
  69. Verdugo, M. A. (2018). Conceptos clave que explican los cambios en la esarroll de apoyos a las discapacidades intelectuales y del esarrollo en España [Key concepts and principles that explain changes in the provision of supports for intellectual and developmental disabilities in Spain]. Siglo Cero, 49(1): 35-52. DOI: 10.14201/scero20184913552
  70. Verdugo M. A., Aguayo V., Arias V. B., & García-Domínguez L. (2020). A systematic review of the assessment of support needs in people with intellectual and developmental disabilities. International Journal of Environmental Research and Public Health, 17(24): 9494. DOI: 10.3390/ijerph17249494
  71. Verdugo M. A., Jenaro C., Calvo I., & Navas P. (2017). Disability policy implementation from a cross-cultural perspective. Intellectual and Developmental Disabilities, 55(4): 234-246. DOI: 10.1352/1934-9556-55.4.234
  72. Verdugo M.A., 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(2): 1036-1045. DOI: 10.1111/j.1365-2788.2012.01585.x
  73. Verdugo M.A., Schalock R.L. y Gómez L.E. (2021). The quality of life supports model: twenty-five years of parallel paths have come together. Siglo Cero, 52(3): 9-28. DOI: 10.14201/scero2021523928
  74. Vicente E., Guillén E. V., Gómez L. E., Ibáñez A., & Sánchez S. (2019). What do stakeholders understand by self-determination? Consensus for its evaluation. Journal of Applied Research in Intellectual Disabilities, 32: 206-218. DOI: 10.1111/jar.12523
  75. Wehmeyer M. L. (2020). The importance of self-determination to the quality of life of people with intellectual disability: A perspective. International Journal of Environmental Research on Public Health, 17(19): e7121. DOI: 10.3390/ijerph17197121
  76. Wehmeyer M. L. (Ed.) (2013). The Oxford handbook of positive psychology and disability. Oxford University Press.
  77. World Health Organization (2001). International Classification of Functioning, Disability and Health. Ginevra.

  • The Quality of Life Supports Model as a Vehicle for Implementing Rights Lucía Morán, Laura E. Gómez, Miguel Ángel Verdugo, Robert L. Schalock, in Behavioral Sciences /2023 pp.365
    DOI: 10.3390/bs13050365
  • The role of Special Pedagogy for Third Mission and Social Impact between transformative practices and emancipatory processes Catia Giaconi, Salvatore Patera, Lucia Borsini, Davide Scotta, Ilaria D'Angelo, Noemi Del Bianco, in EDUCATION SCIENCES AND SOCIETY 1/2024 pp.19
    DOI: 10.3280/ess1-2024oa17590
  • Costruire culture e pratiche inclusive tra Università e territori. Uno studio di caso multi-regione per il contrasto della povertà educativa Catia Giaconi, Ilaria D'Angelo, Noemi Del Bianco, Salvatore Patera, Simona Rotondi, Simone Aparecida Capellini, in EDUCATION SCIENCES AND SOCIETY 1/2024 pp.134
    DOI: 10.3280/ess1-2024oa17648

Catia Giaconi, Miguel Ángel Verdugo, Noemi Del Bianco, Laura E. Gómez, Ilaria D'Angelo, Robert L. Schalock, The Application of Quality of Life in Services for Persons with Intellectual and Developmental Disabilities: Lines of intervention in Spain and Italy in "EDUCATION SCIENCES AND SOCIETY" 2/2022, pp 41-58, DOI: 10.3280/ess2-2022oa14963