El modelo de calidad de vida y apoyos: la unión tras veinticinco años de caminos paralelos

  • Miguel Ángel Verdugo Alonso
    Universidad de Salamanca verdugo[at]usal.es
  • Robert L. Schalock
    Universidad de Nebraska
  • Laura E. Gómez Sánchez
    Universidad de Oviedo

Resumen

El artículo presenta la integración operativa de los paradigmas de calidad de vida y apoyos en un modelo conjunto denominado Modelo de Calidad de Vida y Apoyos (MOCA) que integra características significativas de la transformación actual en el campo de las discapacidades intelectuales y del desarrollo. Estas características abarcan un enfoque holístico e integrado, centrado en los derechos humanos y legales, que sirve de base para tomar las decisiones sobre servicios y apoyos en las limitaciones significativas de las principales áreas de actividad de la vida, con un énfasis en los apoyos individualizados proporcionados dentro de ambientes inclusivos de la comunidad y que promueva la evaluación de resultados. Los contenidos de este artículo incluyen: (a) los cuatro elementos del MOCA: valores fundamentales, dimensiones de calidad de vida individual y familiar, sistemas de apoyo y condiciones facilitadoras; (b) cómo se puede utilizar el MOCA como marco para la provisión de apoyos, la evaluación de resultados centrada en la persona, la transformación de la organización y el cambio de sistemas; y (c) cómo el MOCA es esencial para el cambio de paradigma actual en el campo de las discapacidades intelectuales y del desarrollo.
  • Referencias
  • Cómo citar
  • Del mismo autor
  • Métricas
AGUAYO, V., VERDUGO, M. Á., ARIAS, V. B., GUILLÉN, V. M. y 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. https://doi.org/10.1111/jir.12683

AMOR, A. M., FERNÁNDEZ, M., VERDUGO, M. Á., AZA, A. y SCHALOCK, R. L. (2020). Shaping the faces of the prism: rights, supports, and quality of life for enhancing inclusive education opportunities in students with intellectual disability. Cz?owiek-Niepe?nosprawno??-Spo?ecze?stwo, 49, 5-33.

AMOR, A. M., VERDUGO, M. Á., ARIAS, B., FERNÁNDEZ, M. y 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. https://doi.org/10.3390/ijerph18020764

AZA, A., VERDUGO, M. Á., ORGAZ, M. B., FERNÁNDEZ, M. y AMOR, A. M. (2020). Adaptation and validation of the self-report version of the scale for measuring quality of life in people with acquired brain injury (CAVIDACE). Quality of Life Research, 29(4), 1107-1121. https://doi.org/10.1007/s11136-019-02386-4

BAKER, A., SALISBURY, B. y COLLINS, D. (2016). Changing service delivery systems: an example from Community Living British Columbia. En R. L. SCHALOCK y K. D. KEITH (Eds.), Cross-cultural quality of life: enhancing the lives of people with intellectual disability (pp. 149-166). Ameri-can Association on Intellectual and Developmental Disabilities.

BROWN, I., BROWN, R., BAUM, N. T., ISAACS, B. J., MYERSCOUGH, T., NEIKRUG, S., ROTH, D., SHEARER, J. y WANG, M. (2006). Family quality of life survey: main caregivers of people with intellectual or developmental disabilities. Surrey Place Centre.

BROWN, R. I. (1993). Quality of life issues in aging and intellectual disability. Australia and New Zealand Journal of Developmental Disabilities, 18, 219-227.

BUNTINX, W. H. E., TU TAN, I. y 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. https://doi.org/10.1016/j.yebeh.2018.02.031

CLAES, C., VANDENBUSSCHE, H. y LOMBARDI, L. (2016). Human rights and quality of life domains: identifying cross-cultural indicators. En R. L. SCHA-LOCK y 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.

CONSORTIUM ON QUALITY OF LIFE. (2019). Towards a consensus document regarding the conceptualization, measurement, and application of the quality life concept. University of Gent.

DECI, E. L. y RYAN, R. M. (2012). Motivation, personality, and development within embedded social contexts: an overview of self-determination theory. En R. M. RYAN (Ed.), The Oxford handbook of human motivation (pp. 85-107). Oxford University Press.

FELCE, D. (1997). Defining and applying the concept of quality of life. Journal of Intellectual Disability Research, 41, 126-135. https://doi.org/10.1111/j.1365-2788.1997.tb00689.x

FERNÁNDEZ, M., GÓMEZ, L. E., ARIAS, V. B., AGUAYO, V., AMOR, A. M., ANDELIC, N. y VERDUGO, M. Á. (2019). A new scale for measuring quality of life in acquired brain injury. Quality of Life Research, 28(3), 801-814.

GLEN, K. B. (2015). Supported decision making and the human rights of legal capacity. Inclusion, 3, 2-16. https://doi.org/ 10.1352/2326-6988-3.1.2

GÓMEZ, L. E., MONSALVE, A., MORAN, L., ALCEDO, M. A., LOMBARDI, M. y SCHALOCK, R. L. (2020). Measurable indicators of CRPD for people with inte-llectual and developmental disabilities within the framework of quality of life. International Journal of Environmental Research and Pu-blic Health, 17, Article 5123. https://doi.org/10.3390/ijerph17145123

GÓMEZ, L. E., SCHALOCK, R. L. y VERDUGO, M. Á. (2020). The role of moderators and mediators in implementing and evaluating intellectual and developmental disabilities- related policies and practices. Journal of Developmental and Physical Disabilities, 32, 375-393. https://doi.org/10.1007/s10882-019-097202-3

GÓMEZ, L. E., SCHALOCK, R. L. y VERDUGO, M. Á. (2021). A new paradigm in the field of intellectual and developmental disabilities: Characteristics and evaluation. Psicothema, 33(1), 28-35. https://doi.org/10.7334/psicothema2020.385

GÓMEZ, L. E., VERDUGO, M. Á., ARIAS, B. y ARIAS, V. B. (2011). A comparison of alternative models of individual quality of life for social service recipients. Social Indicators Research, 101, 109-126. https://doi.org/ 10.1007/s11205-010-9639-y

GOODE, D. (Ed.). (1994). Quality of life for persons with disabilities: international issues and perspectives. Brookline Press.

HARPUR, P. (2012). Embracing the new disability rights paradigm: the importance of the Convention on the Rights of Persons with Disabili-ties. Disability and Society, 27, 1-14. https://doi.org/ 10.1080/09687599.2012.631794

ISAACS, B. J., BROWN, I., BROWN, R. I., BAUM, N., MYSERSCOUGH, T., NEIKRUG, A., ROTH, D., SHEARER, J. y WANG, M. (2007). The International Family Quality of Life Project. Journal of Policy and Practice in Intellectual Disabilities, 4, 177-185. https://doi.org/ 10.1111/j.1741-1130.2007.00116.x

KEITH, K. D., HEAL, L. y SCHALOCK, R. L. (1996). Cross-cultural measurement of critical quality of life concepts. Journal of Intellectual and Deve-lopmental Disabilities, 21, 273-293. https://doi.org/10.1080/13668259600033201

LACHAPELLE, Y., WEHMEYER, M. L., HAELEWYCK, M. C., COURBOIS, Y., KEITH, K. D., SCHALOCK, R. L., VERDUGO, M. Á. y WALSH, P. N. (2005). The relationship between quality of life and self-determination: an international study. Journal of Intellectual Disability Research, 49(10), 740-744. https://doi:10.1111/j.1365-2788.2005.00743.x

LOMBARDI, M., CHU, C., CLAES, C. y SCHALOCK, R. L. (2020). Towards an international definition of supports, systems of supports, and elements of systems of supports. Manuscrito enviado para publicación.

LOMBARDI, M., VANDENBUSSCHE, H., CLAES, C., SCHALOCK, R. L., De MAEYER, J., y 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. https://doi.org/10.1111/jppi.12279

LUCKASSON, R., BORTHWICK-DUFFY, S. A., BUNTINX, W. H. E., COULTER, D., CRAIG, E. M., REEVE, A., SCHALOCK, R. L., SNELL, M. E., SPITALNIK, D. M., SPREAT, S. y TASSÉ, M. J. (2002). Mental retardation. Definition, classification and systems of supports (10th Ed). American Association on Mental Re-tardation. [Traducción de M. Á. VERDUGO y C. JENARO. Retraso mental: Definición, clasificación y sistemas de apoyo (10.ª edición). Ameri-can Association on Mental Retardation/Alianza Editorial, 2004].

LUCKASSON, R., COULTER, D. L., POLLOWAY, E. A., REISS, S., SCHALOCK, R. L., SNELL, M. E., SPITALNIK, D. M. y STARK, J. A. (1992). Mental retardation. Defini-tion, classification and systems of supports (10th Ed). American Association on Mental Retardation. [Traducción de M. Á. VERDUGO y C. JENARO. Retraso mental: definición, clasificación y sistemas de apoyo (9.ª edición). American Association on Mental Retardation/Alianza Editorial, 1997].

LUCKASSON, R., COULTER, D. L., POLLOWAY, E. A., REISS, S., SCHALOCK, R. L., SNELL, M. E., SPITALNIK, D. M. y STARK, J. A. (2002). Mental retardation. Defini-tion, classification and systems of supports (10th Ed). American Association on Mental Retardation. [Traducción de M. Á. VERDUGO y C. JENARO. Retraso mental: definición, clasificación y sistemas de apoyo (10.ª edición). American Association on Mental Retarda-tion/Alianza Editorial, 2004].

LUCKASSON, R., FORD, M. E., McMILLAN, E. D., MISILO, F. M. Jr. y NYGREN, M. A. (2017). Intellectual disability policy as developed, expressed, and evaluated in AAIDD/The Arc joint statements. Intellectual and Developmental Disabilities, 55, 269-275. https://doi.org/ 10.1352/1934-9556-55.4.269

MITTLER, P. (2015). The UN Convention on the Rights of Persons with Disabilities: implementing a paradigm shift. Journal of Policy and Prac-tice in Intellectual Disabilities, 12, 79-89.

MORÁN, L., GÓMEZ, L. E. y ALCEDO, M. A. (2019). Inclusión social y autodeterminación: los retos en la calidad de vida de los jóvenes con autis-mo y discapacidad. Siglo Cero, 50(3), 29-46. https://doi.org/ 10.14201/scero20195032946

NACIONES UNIDAS. (2006). United Nations Convention on the Rights of Persons with Disability. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html

NAVAS, P., AMOR, A. M., CRESPO, M., WOLOWIEC, Z. y VERDUGO, M. Á. (2020). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, 103813.

NAVAS, P., GÓMEZ, L. E., VERDUGO, M. Á. y SCHALOCK, R. L. (2012). Derechos de las personas con discapacidad intelectual: implicaciones de la Convención de Naciones Unidas. Siglo Cero, 43(3), 7-28.

NAVAS, P., VERDUGO, M. Á., AMOR, A. M., CRESPO, M. y MARTÍNEZ, S. (2020). COVID-19 y discapacidades intelectuales y del desarrollo: impacto del confinamiento desde la perspectiva de las personas, sus familiares y los profesionales y organizaciones que prestan apoyo. Plena in-clusión España e Instituto Universitario de Integración en la Comunidad (INICO), Universidad de Salamanca.

NUSSBAUM, M. C. (2011). Creating capabilities: the human development approach. Belknap Press of Harvard University.

ONKEN, S. J. (2018). Mental health consumer concept mapping of supported community. Evaluation and Program Planning, 71, 36-45. https://doi.org/10.1016/j.evalprogplan.2018.08.001

PARMENTER, T. R. (1992). Quality of life of people with developmental disabilities. International Review of Research in Mental Retardation, 18, 247-287.

QIAN, X., LARSON, S. A., TICHA, R., STANCLIFFE, R. y PETTINGELL, S. L. (2019). Active support training, staff assistance, and engagement of individuals with intellectual and developmental disabilities in the United States: randomized controlled trial. American Journal on Intellectual and Developmental Disabilities, 124, 157-173. https://doi.org/10.1352/1944-7558-124.2.157

RAPHAEL, D., BROWN, I., RENWICK, R. y ROOTMAN, I. (1996). Assessing the quality of life of persons with developmental disabilities: description of a new model, measuring instruments, and initial findings. International Journal of Disability Development and Education, 43, 25-42. https://doi.org/10.1080/0156655960430103

REINDERS, H. S. y 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. https://doi.org/10.1352/1944-7558-119.4.291

SÁNCHEZ-GÓMEZ, V., LÓPEZ, M., AMOR, A. M. y VERDUGO, M. Á. (2020). Apoyos para la calidad de vida de escolares con y sin discapacidad: revisión de literatura. Revista Internacional de Educación para la Justicia Social, 9(2), 327-349. https://doi.org/10.15366/riejs2020.9.2.016

SCHALOCK, R. L., BORTHWICK-DUFFY, S. A., BRADLEY, V. J., BUNTINX, W. H. E., COULTER, D., CRAIG, E. M., GOMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R., REEVE, A., SHOGREN, K. A., SNELL, M. E., SPREAT, S., TASSÉ, M. J., THOMPSON, J. R., VERDUGO, M. Á., WEHMEYER, M. y YEAGER, M. H. (2010). Intellectual disability. Definition, classification, and systems of supports (11th Edition). American Association on Intellectual and Developmental Disabilities. [Traducción al español por M. Á. VERDUGO, Definición, clasificación y sistemas de apoyos. Alianza, 2011].

SCHALOCK, R. L., BROWN, I., BROWN, R., CUMMINS, R. A., FELCE, D., MATIKKA, L., KEITH, K. D. y 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. https://doi.org/10.1352/1944-7558-119.4.291

SCHALOCK, R. L., GÓMEZ, L. E., VERDUGO, M. Á. y REINDERS, H. S. (2016). Moving us toward a theory of individual quality of life. American Journal on Intellectual and Developmental Disabilities, 121, 1-12. https://doi.org/10.1352/1944-7558-121.1.1

SCHALOCK, R. L. y KEITH, K. D. (Eds.). (2016). Cross-cultural quality of life: enhancing the lives of people with intellectual disabilities. American Association on Intellectual and Developmental Disabilities.

SCHALOCK, R. L. y LUCKASSON, R. (2020). Person-centered outcome evaluation: aligning a modern understanding of intellectual and develop-mental disabilities, individualized supports, valued outcomes, and meaningful impacts. Manuscrito enviado para publicación.

SCHALOCK, R. L., LUCKASSON, R. y TASSÉ, M. J. (2019). The contemporary view of intellectual and developmental disabilities. Implications for psychologists. Psicothema, 31, 223-228. https://doi.org/10.7334/psicothema2019.119

SCHALOCK, R. L., LUCKASSON, R. y TASSÉ, M. J. (en prensa). Ongoing transformation in the field of IDD: taking action for future progress. Intellectual and Developmental Disabilities.

SCHALOCK, R. L., LUCKASSON, R. y TASSÉ, M. J. (2021). Intellectual disability: definition, diagnosis, classification, and planning supports (12ª Edition). AAIDD.

SCHALOCK, R. L., LUCKASSON, R., TASSÉ, M. J. y VERDUGO, M. Á. (2018). A holistic theoretical approach to intellectual disability: going beyond the four current perspectives. Intellectual and Developmental Disabilities, 56(2), 79-89. https://doi.org/10.1352/1934-9556-56.2.79

SCHALOCK, R. L., THOMPSON, J. R. y TASSÉ, M. J. (2018). A systematic approach to personal support plans. American Association on Intellectual and Developmental Disabilities.

SCHALOCK, R. L. y VERDUGO, M. Á. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retar-dation. [Calidad de vida. Manual para profesionales de la educación, salud y servicios sociales. Alianza, 2003].

SCHALOCK, R. L. y VERDUGO, M. Á. (2012). A leadership guide to redefining intellectual and developmental disabilities organizations: eight suc-cessful change strategies. Brookes Publishing Company. [El cambio en las organizaciones de discapacidad. Estrategias para superar sus retos y hacerlo realidad. Guía de liderazgo. Alianza, 2013].

SCHALOCK, R. L. y VERDUGO, M. Á. (2013). The transformation of disabilities organizations. Intellectual and Developmental Disabilities, 51, 273-286. https://doi.org/ 10.1352/1934-9556-51.4.273

SCHALOCK, R. L. y VERDUGO, M. Á. (2019). International developments influencing the field of intellectual and developmental disabilities. En K. A. KEITH (Ed.), Cross-cultural psychology: contemporary themes and perspectives (2nd Ed.) (pp. 309-323). Wiley-Blackwell.

SCHALOCK, R. L., VERDUGO, M. Á. y 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. https://doi.org/10.1016/j.evalprogplan.2010.10.004

SCHALOCK, R. L., VERDUGO, M. Á. y GÓMEZ, L. E. (2020). The quality of life supports paradigm: its description and application in the field of inte-llectual and developmental disabilities. Journal of Policy and Practice in Intellectual Disabilities. Manuscrito enviado para publicación.

SCHALOCK, R. L., VERDUGO, M. Á. y van LOON, J. (2018). Understanding organization transformation in evaluation and program planning. Evalua-tion and Program Planning, 67, 53-60. https://doi.org/ 10.1016/j.evalprogplan.2017.11.003

SHOGREN, K. A., LUCKASSON, R. y SCHALOCK, R. L. (2020). Using a multidimensional model to analyze context and enhance personal outcomes. Intellectual and Developmental Disabilities, 58, 95-110. https://doi.org/10.1352/1934-9556-58.2.95

SHOGREN, K. A., LUCKASSON, R. y SCHALOCK, R. L. (en prensa). Leveraging the power of context in disability policy development, implementation, and evaluation: multiple applications to enhance personal outcomes. Journal of Disability Policy Studies.

SHOGREN, K. A., WEHMEYER, M. L., UYANIK, H. y HEIDRICH, M. (2017). Development of the support decision making inventory system. Intellectual and Developmental Disabilities, 47, 220-233. https://doi.org/ 10.1352/1934-9556-55.6.432

STANCLIFFE, R. J., ARNOLD, S. R. C. y RICHES, V. C. (2016). The supports paradigm. En R. L. SCHALOCK y 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 Disa-bilities.

SUMMERS, J. A., POSTON, D., TURNBULL, A., MARQUIS, J., HOFFMAN, L. MANNAN, H. y WANG, M. (2005). Conceptualizing and measuring family quality of life. Journal of Intellectual Disability Research, 49, 777-783. https://doi.org/ 10.1111/j.1365-2788.2005.00751.x /

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., GÓMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R. A., REEVE, A., SPREAT, S., TASSÉ, M. J., VERDUGO, M. Á. y YEAGER, M. H. (2009). Conceptualizing sup-ports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47, 135- 146. https://doi.org/10.1352/1934-9556-47.2.135

THOMPSON, J. R., BRYANT, B. R., SCHALOCK, R. L., SHOGREN, K. A., TASSÉ, M. J., WEHMEYER, M. L., CAMPBELL, E. M., CRAIG, E. M., HUGHES, C. y ROTHOLZ, D. A. (2015). Supports Intensity Scale-Adult Version User’s Manual. American Association on Intellectual and Developmental Disabilities.

THOMPSON, J. R., SCHALOCK, R. L., AGOSTA, J., TENINTY, L. y FORTUNE, J. (2014). How the supports paradigm is transforming the developmental disa-bilities service system. Inclusion, 2, 86-99. https://doi.org/10.1352/2326-6988-2.2.86

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. y TASSÉ, M. J. (2016). Supports Intensity Scale-Children’s Version (SIS-C). American Association on Intellectual and Developmental Disabilities.

Van HECKE, N., CLAES, C., VANDERPLASSCHEN, W., De MAEYER, J., De WITTE, N. y VANDEVELDE, S. (2018). Conceptualisation and measurement of quality of life based on Schalock and Verdugo’s model: a cross-disciplinary review of the literature. Social Indicators Research, 137, 335-351. https://doi.org/10.1007/s11205-017-1596-2

VERDUGO, M. Á., AGUAYO, V., ARIAS, V. B. y 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.

VERDUGO, M. Á., ARIAS, B., GUILLÉN, V. M., AMOR, A., AGUAYO, V., VICENTE, E. y JIMÉNEZ, P. (2021). Escala SIS-C de Evaluación de las Necesidades de Apoyo para niños y adolescentes con discapacidades intelectuales y del desarrollo. Universidad de Salamanca, Publicaciones del INICO.

VERDUGO, M. Á., NAVAS, P., GÓMEZ, L. E. y 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, 1036-1045. https://doi.org/ 10.1111/j.1365-2788.2012. 01585.x

VICENTE, E., MUMBARDÓ, C., COMA, T., VERDUGO, M. Á. y GINÉ, C. (2018). Autodeterminación en personas con discapacidad intelectual y del desa-rrollo: revisión del concepto, su importancia y retos emergentes. Revista Española de Discapacidad, 6(2), 7-25.

VICENTE, E., VERDUGO, M. Á., GUILLÉN, V. M., MARTÍNEZ-MOLINA, A., GÓMEZ, L. E. e IBÁÑEZ, A. (2020). Advances in the assessment of self-determination: internal structure of a scale for people with intellectual disabilities aged 11 to 40. Journal of Intellectual Disability Re-search, 64(9), 700-712.

WEHMEYER, M. L. (Ed.). (2013). The Oxford handbook of positive psychology and disability. Oxford University Press.

ZUNA, N., SUMMERS, J. A., TURNBULL, A. P., HU, X. y XU, S. (2010). Theorizing about family quality of life. En R. KOBER (Ed.), Enhancing the quality of life of people with intellectual disability: from theory to practice (pp. 241-278). Springer.
Verdugo Alonso, M. Ángel, Schalock, R. L., & Gómez Sánchez, L. E. (2021). El modelo de calidad de vida y apoyos: la unión tras veinticinco años de caminos paralelos. Siglo Cero, 52(3), 9–28. https://doi.org/10.14201/scero2021523928

Artículos más leídos del mismo autor/a

1 2 > >> 

Descargas

Los datos de descargas todavía no están disponibles.
+