Advancing in self-determination: study on the self-perceptions of adults with intellectual disabilities from an inclusive research perspective
Abstract Self-determination has become the key construct to ensure the development of skills that allow people with disabilities to gain control over their lives. This study, from an inclusive research paradigm, seeks to assess the self-perceptions about self-determination of 122 adults with intellectual disabilities in Chile. The data of this research have been collected through an ad hoc questionnaire in online software format and a semi-structured interview. The main results show how the participants have low levels of self-determination. The development of competencies related to self-defense or self-instruction are greatly diminished unlike other skills such as decision making or problem solving. From these evidences it is discussed how the challenges that these people face during their adulthood (relocation of the place of residence, aging, etc.) demand new strategies that guide the work on self-determination. In addition, the development of inclusive research involving the real participation of people with intellectual disabilities is recognized as an important element for the promotion of self-determination.
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Agran, M., Cavin, M., Wehmeyer, M. L. y Palmer, S. (2010). Promoting active engagement in the general education curriculum for students with cognitive disabilities. Education and Training in Autism and Developmental Disabilities, 45(2), 163-174.
Ali, A., Hassiotis, A., Strydom, A. y King, M. (2012). Self stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities, 33(6), 2122-2140. https://doi.org/10.1016/j.ridd.2012.06.013
Álvarez-Aguado, I., Vega, V., Spencer, H., González, F. y Arriagada, R. (2019). Adultos chilenos con discapacidad intelectual: creencias, actitudes y percepciones parentales sobre su autodeterminación. Siglo Cero, 50(2), 51-72. https://doi.org/10.14201/scero20195025172
Arellano, A. y Peralta, F. (2015). El Enfoque Centrado en la Familia en el campo de la discapacidad intelectual ¿Cómo perciben los padres su relación con los profesionales? Revista de Investigación Educativa, 33(1), 119-132. https://doi.org/10.6018/rie.33.1.198561
Bigby, C., Frawley, P. y Ramcharan, P. (2014). A collaborative group method of inclusive research. Journal of Applied Research in Intellectual Disabilities, 27(1), 54-64. https://doi.org/10.1111/jar.12082
Carter, E. W., Lane, K. L., Pierson, M. R. y Stang, K. K. (2008). Promoting self-determination for transition-age youth: Views of high school general and special educators. Exceptional Children, 75(1), 55-70. https://doi.org/10.1177/001440290807500103
Castro, L., Casas, J., Sánchez, S., Vallejos, V. y Zúñiga, D. (2016). Percepción de la calidad de vida en personas con discapacidad y su relación con la educación. Estudios Pedagógicos, 42(2), 39-49. https://doi.org/10.4067/S0718-07052016000200003
Chadwick, D. D. y Fullwood, C. (2018). An online life like any other: identity, self-determination, and social networking among adults with intellectual disabilities. Cyberpsychology, Behavior, and Social Networking, 21(1), 56-64. https://doi.org/10.1089/cyber.2016.0689
Chou, Y. C., Wehmeyer, M. L., Palmer, S. B. y Lee, J. (2017). Comparisons of self-determination among students with autism, intellectual disability, and learning disabilities: a multivariate analysis. Focus on Autism and Other Developmental Disabilities, 32(2), 124-132. https://doi.org/10.1177/1088357615625059
Cote, D. L., Jones, V. L., Barnett, C., Pavelek, K., Nguyen, H. y Sparks, S. L. (2014). Teaching problem solving skills to elementary age students with autism. Education and Training in Autism and Developmental Disabilities, 49(2), 189-199.
Finn, D., Getzel, E. E. y McManus, S. (2008). Adapting the self-determined Learning Model of Instruction for college students with disabilities. Career Development for Exceptional Individuals, 31(2), 85-93. https://doi.org/10.1177/0885728808318327
Frielink, N., Schuengel, C. y Embregts, P. J. (2018). Autonomy support, need satisfaction, and motivation for support among adults with intellectual disability: testing a self-determination theory model. American Journal on Intellectual and Developmental Disabilities, 123(1), 33-49. https://doi.org/10.1352/1944-7558-123.1.33
Gómez-Vela, M., Verdugo, M. Á., González, F., Badía, M. y Wehmeyer, M. L. (2012). Assessment of the self-determination of spanish students with intellectual disabilities and other educational needs. Education and Training in Autism and Developmental Disabilities, 47(1), 48-57.
Gray, N., Basualto, C. y Sisto, V. (2017). Política pública sobre capacitación y empleo en Chile: inclusión/exclusión de una fuerza laboral que envejece. Polis. Revista Latinoamericana, 16(48), 81-106. https://doi.org/10.4067/S0718-65682017000300081
Grigal, M., Neubert, D., Moon, M. y Graham, S. (2003). Self-determination for students with disabilities: views of parents and teachers. Exceptional Children, 70(1), 97-112. https://doi.org/10.1177/001440290307000106
Heller, T., Schindler, A., Palmer, S., Wehmeyer, M. L., Jenson, R., Abery, B. et al. (2011). Self-determination across the life span: issues and gaps. Exceptionality, 19(1), 35-45. https://doi.org/10.1080/09362835.2011.537228
Hsieh, H. F. y Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. https://doi.org/10.1177/1049732305276687
Jones, J. L., Shogren, K. A., Grandfield, E. M., Vierling, K. L., Gallus, K. L. y Shaw, L. A. (2018). Examining predictors of self-determination in adults with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 1-14. https://doi.org/10.1007/s10882-018-9607-z
Kim, N. H. y Park, J. (2012). The effects of the family-involved SDLMI on academic engagement and goal attainment of middle school students with disabilities who exhibit problem behavior. International Journal of Special Education, 27(1), 117-127.
Kleinert, J. O., Harrison, E., Dueppen, B. M., Mills, K. R. y Trailor, A. M. (2014). Self-determined goal selection and planning by students with disabilities across grade bands and disability categories. Education and Training in Autism and Developmental Disabilities, 49(3), 464-477.
Lee, S-H., Wehmeyer, M. L., Palmer, S. B., Soukup, J. H. y Little, T. D. (2008). Self-determination and access to the general education curriculum. The Journal of Special Education, 42(2), 91-107. https://doi.org/10.1177/0022466907312354
Ley 20.422/2010 que Establece Normas sobre Igualdad de Oportunidades e Inclusión Social de Personas con Discapacidad. Ministerio de Planificación. Gobierno de Chile.
Mella, S., Díaz, N., Muñoz, S., Orrego, M. y Rivera, C. (2014). Percepción de facilitadores, barreras y necesidades de apoyo de estudiantes con discapacidad en la Universidad de Chile. Revista Latinoamericana de Educación Inclusiva, 8(1), 63-80.
Mumbardó-Adam, C., Vicente, E., Giné, C., Guàrdia-Olmos, J., Raley, S. K. y Verdugo, M. Á. (2017). Promoviendo la autodeterminación en el aula: el Modelo de Enseñanza y Aprendizaje de la Autodeterminación. Siglo Cero, 48(2), 41-59. https://doi.org/10.14201/scero20174824159
Navas, P., Uhlmann, S. y Berástegui, A. (2014). Envejecimiento activo y discapacidad intelectual. Madrid: Ministerio de Educación, Cultura y Deporte.
Nonnemacher, S. L. y Bambara, L. M. (2011). "I'm supposed to be in charge": self-advocates' perspectives on their self-determination support needs. Intellectual and Developmental Disabilities, 49(5), 327-340. https://doi.org/10.1352/1934-9556-49.5.327
Nota, I., Ferrari, L., Soresi, S. y Wehmeyer, M. L. (2007). Self-determination, social abilities and the quality of life of people with intellectual disabilities. Journal of Hapiness Study, 12, 245-266. https://doi.org/10.1007/s10902-010-9191-0
Organización de Naciones Unidas (2006). Convención Internacional sobre los Derechos de las Personas con Discapacidad.
Oswald, T. M., Winder-Patel, B., Ruder, S., Xing, G., Stahmer, A. y Solomon, M. (2018). A pilot randomized controlled trial of the ACCESS Program: a group intervention to improve social, adaptive functioning, stress coping, and self-determination outcomes in young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(5), 1742-1760. https://doi.org/10.1007/s10803-017-3421-9
Pallisera, M., Fullana, J., Puyaltó, C., Vilà, M. y Díaz, G. (2017). Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente. Revista Española de Discapacidad, 5(1), 7-24. https://doi.org/10.5569/2340-5104.05.01.01
Pallisera, M., Fullana, J., Puyaltó, C., Vilà, M., Valls, M. J., Díaz, G. et al. (2018). Retos para la vida independiente de las personas con discapacidad intelectual: un estudio basado en sus opiniones, las de sus familias y las de los profesionales. Revista Española de Discapacidad, 6(1), 7-29. https://doi.org/10.5569/2340-5104.06.01.01
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Plena inclusión (2017). Asistencia personal: una herramienta clave para el ejercicio del derecho a la vida independiente de las personas con discapacidad intelectual o del desarrollo. Madrid: Plena inclusión España.
Rodríguez-Aguilella, A., Verdugo, M. Á. y Sánchez, M. C. (2015). Calidad de vida familiar y apoyos para los progenitores de personas con discapacidad intelectual en proceso de envejecimiento. Siglo Cero, 39(227), 19-34.
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Agran, M., Cavin, M., Wehmeyer, M. L. y Palmer, S. (2010). Promoting active engagement in the general education curriculum for students with cognitive disabilities. Education and Training in Autism and Developmental Disabilities, 45(2), 163-174.
Ali, A., Hassiotis, A., Strydom, A. y King, M. (2012). Self stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities, 33(6), 2122-2140. https://doi.org/10.1016/j.ridd.2012.06.013
Álvarez-Aguado, I., Vega, V., Spencer, H., González, F. y Arriagada, R. (2019). Adultos chilenos con discapacidad intelectual: creencias, actitudes y percepciones parentales sobre su autodeterminación. Siglo Cero, 50(2), 51-72. https://doi.org/10.14201/scero20195025172
Arellano, A. y Peralta, F. (2015). El Enfoque Centrado en la Familia en el campo de la discapacidad intelectual ¿Cómo perciben los padres su relación con los profesionales? Revista de Investigación Educativa, 33(1), 119-132. https://doi.org/10.6018/rie.33.1.198561
Bigby, C., Frawley, P. y Ramcharan, P. (2014). A collaborative group method of inclusive research. Journal of Applied Research in Intellectual Disabilities, 27(1), 54-64. https://doi.org/10.1111/jar.12082
Carter, E. W., Lane, K. L., Pierson, M. R. y Stang, K. K. (2008). Promoting self-determination for transition-age youth: Views of high school general and special educators. Exceptional Children, 75(1), 55-70. https://doi.org/10.1177/001440290807500103
Castro, L., Casas, J., Sánchez, S., Vallejos, V. y Zúñiga, D. (2016). Percepción de la calidad de vida en personas con discapacidad y su relación con la educación. Estudios Pedagógicos, 42(2), 39-49. https://doi.org/10.4067/S0718-07052016000200003
Chadwick, D. D. y Fullwood, C. (2018). An online life like any other: identity, self-determination, and social networking among adults with intellectual disabilities. Cyberpsychology, Behavior, and Social Networking, 21(1), 56-64. https://doi.org/10.1089/cyber.2016.0689
Chou, Y. C., Wehmeyer, M. L., Palmer, S. B. y Lee, J. (2017). Comparisons of self-determination among students with autism, intellectual disability, and learning disabilities: a multivariate analysis. Focus on Autism and Other Developmental Disabilities, 32(2), 124-132. https://doi.org/10.1177/1088357615625059
Cote, D. L., Jones, V. L., Barnett, C., Pavelek, K., Nguyen, H. y Sparks, S. L. (2014). Teaching problem solving skills to elementary age students with autism. Education and Training in Autism and Developmental Disabilities, 49(2), 189-199.
Finn, D., Getzel, E. E. y McManus, S. (2008). Adapting the self-determined Learning Model of Instruction for college students with disabilities. Career Development for Exceptional Individuals, 31(2), 85-93. https://doi.org/10.1177/0885728808318327
Frielink, N., Schuengel, C. y Embregts, P. J. (2018). Autonomy support, need satisfaction, and motivation for support among adults with intellectual disability: testing a self-determination theory model. American Journal on Intellectual and Developmental Disabilities, 123(1), 33-49. https://doi.org/10.1352/1944-7558-123.1.33
Gómez-Vela, M., Verdugo, M. Á., González, F., Badía, M. y Wehmeyer, M. L. (2012). Assessment of the self-determination of spanish students with intellectual disabilities and other educational needs. Education and Training in Autism and Developmental Disabilities, 47(1), 48-57.
Gray, N., Basualto, C. y Sisto, V. (2017). Política pública sobre capacitación y empleo en Chile: inclusión/exclusión de una fuerza laboral que envejece. Polis. Revista Latinoamericana, 16(48), 81-106. https://doi.org/10.4067/S0718-65682017000300081
Grigal, M., Neubert, D., Moon, M. y Graham, S. (2003). Self-determination for students with disabilities: views of parents and teachers. Exceptional Children, 70(1), 97-112. https://doi.org/10.1177/001440290307000106
Heller, T., Schindler, A., Palmer, S., Wehmeyer, M. L., Jenson, R., Abery, B. et al. (2011). Self-determination across the life span: issues and gaps. Exceptionality, 19(1), 35-45. https://doi.org/10.1080/09362835.2011.537228
Hsieh, H. F. y Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. https://doi.org/10.1177/1049732305276687
Jones, J. L., Shogren, K. A., Grandfield, E. M., Vierling, K. L., Gallus, K. L. y Shaw, L. A. (2018). Examining predictors of self-determination in adults with intellectual and developmental disabilities. Journal of Developmental and Physical Disabilities, 1-14. https://doi.org/10.1007/s10882-018-9607-z
Kim, N. H. y Park, J. (2012). The effects of the family-involved SDLMI on academic engagement and goal attainment of middle school students with disabilities who exhibit problem behavior. International Journal of Special Education, 27(1), 117-127.
Kleinert, J. O., Harrison, E., Dueppen, B. M., Mills, K. R. y Trailor, A. M. (2014). Self-determined goal selection and planning by students with disabilities across grade bands and disability categories. Education and Training in Autism and Developmental Disabilities, 49(3), 464-477.
Lee, S-H., Wehmeyer, M. L., Palmer, S. B., Soukup, J. H. y Little, T. D. (2008). Self-determination and access to the general education curriculum. The Journal of Special Education, 42(2), 91-107. https://doi.org/10.1177/0022466907312354
Ley 20.422/2010 que Establece Normas sobre Igualdad de Oportunidades e Inclusión Social de Personas con Discapacidad. Ministerio de Planificación. Gobierno de Chile.
Mella, S., Díaz, N., Muñoz, S., Orrego, M. y Rivera, C. (2014). Percepción de facilitadores, barreras y necesidades de apoyo de estudiantes con discapacidad en la Universidad de Chile. Revista Latinoamericana de Educación Inclusiva, 8(1), 63-80.
Mumbardó-Adam, C., Vicente, E., Giné, C., Guàrdia-Olmos, J., Raley, S. K. y Verdugo, M. Á. (2017). Promoviendo la autodeterminación en el aula: el Modelo de Enseñanza y Aprendizaje de la Autodeterminación. Siglo Cero, 48(2), 41-59. https://doi.org/10.14201/scero20174824159
Navas, P., Uhlmann, S. y Berástegui, A. (2014). Envejecimiento activo y discapacidad intelectual. Madrid: Ministerio de Educación, Cultura y Deporte.
Nonnemacher, S. L. y Bambara, L. M. (2011). "I'm supposed to be in charge": self-advocates' perspectives on their self-determination support needs. Intellectual and Developmental Disabilities, 49(5), 327-340. https://doi.org/10.1352/1934-9556-49.5.327
Nota, I., Ferrari, L., Soresi, S. y Wehmeyer, M. L. (2007). Self-determination, social abilities and the quality of life of people with intellectual disabilities. Journal of Hapiness Study, 12, 245-266. https://doi.org/10.1007/s10902-010-9191-0
Organización de Naciones Unidas (2006). Convención Internacional sobre los Derechos de las Personas con Discapacidad.
Oswald, T. M., Winder-Patel, B., Ruder, S., Xing, G., Stahmer, A. y Solomon, M. (2018). A pilot randomized controlled trial of the ACCESS Program: a group intervention to improve social, adaptive functioning, stress coping, and self-determination outcomes in young adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(5), 1742-1760. https://doi.org/10.1007/s10803-017-3421-9
Pallisera, M., Fullana, J., Puyaltó, C., Vilà, M. y Díaz, G. (2017). Apoyando la participación real de las personas con discapacidad intelectual: una experiencia de investigación inclusiva sobre vida independiente. Revista Española de Discapacidad, 5(1), 7-24. https://doi.org/10.5569/2340-5104.05.01.01
Pallisera, M., Fullana, J., Puyaltó, C., Vilà, M., Valls, M. J., Díaz, G. et al. (2018). Retos para la vida independiente de las personas con discapacidad intelectual: un estudio basado en sus opiniones, las de sus familias y las de los profesionales. Revista Española de Discapacidad, 6(1), 7-29. https://doi.org/10.5569/2340-5104.06.01.01
Pedrosa, I., Suárez, J. y García, E. (2013). Evidencias sobre la validez de contenido: avances teóricos y métodos para su estimación. Acción Psicológica, 10(2), 3-20. https://doi.org/10.5944/ap.10.2.11820
Pérez-Llantada, M. C. y López, A. (2004). Metodología de encuestas: conceptos básicos y diseños. En S. Fontes de Gracia, C. García, A. J. Garriga, M. C. Pérez-Llantada y E. Sarriá (Eds.), Diseños de investigación en psicología (3.ª ed.), (pp. 433-468). Madrid: Lerko Print.
Petri, J., Embregts, P. J., Taminiau, E. F., Heerkens, L., Schippers, A. P. y Van Hove, G. (2018). Collaboration in inclusive research: competencies considered important for people with and without intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 193-201. https://doi.org/10.1111/jppi.12248
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