Chilean adults with intellectual disabilities: beliefs, attitudes and parental perceptions about their self-determination
Abstract The development of self-determination skills in people with intellectual disabilities should be promoted from natural contexts and not only from formal environments. To know the extent to which families can facilitate or hinder self-determination, the beliefs, perceptions and attitudes about self-determination of 282 parents of adults with intellectual disabilities in Chile have been analyzed from a non-experimental quantitative paradigm. The main results show how attitudes and beliefs in favor of self-determination increase the performance of these skills among children. Likewise, it is adults with severe disabilities who receive, by parents, fewer opportunities to develop their self-determination. The discussion of these findings allows to infer certain tendencies of action among the children from the beliefs and attitudes of the parents. This helps to identify training needs in families and to guide future interventions on this construct from the family context.
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Abery, B. y Stancliffe, R. J. (2003). A tripartite-ecological theory of self-determination. En M. L. Wehmeyer, B. H. Abery, D. E. Mithaug y R. J. Stancliffe (Eds.), Theory in self-determination. Foundations for educational practice (pp. 43-78). Springfield, il: Charles C. Thomas.
Agran, M., Snow, K. y Swaner, J. (1999). Teacher Perceptions of Self-Determination: Benefits, Characteristics, Strategies. Education and Training in Mental Retardation and Development Disabilities, 34 (3), 293-301.
Algozzine, B., Browder, D., Karvonen, M., Test, D. W. y Wood, W. M. (2001). Effects on interventions to promote self-determination for individuals with disabilities. Review of Educational Research, 71 (2), 219-277.
Arellano, A. (2015). Autodeterminación y discapacidad intelectual: un estudio piloto con padres de la asociación de Puebla (México). Revista Digital A&H, 1, 6-21.
Arellano, A. y Peralta, F. (2013). Calidad de vida y autodeterminación en personas con discapacidad. Valoraciones de los padres. Revista Iberoamericana de Educación, 63, 145-160.
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.
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.
Carter, E. W., Trainor, A., Owens, L., Sweden, B. y Sun, Y. (2009). Self-determination prospects of youth with high-incidence disabilities: divergent perspectives and related factors. Journal of Emotional and Behavioral Disorders, 18 (2), 67-81.
Chambers, C. R., Wehmeyer, M. L., Saito, Y., Lida, K. M., Lee, Y. y Singh, V. (2007). Self-determination: What do we know? Where do we go? Exceptionality, 15 (1), 3-15.
Cobb, B., Lehmann, J., Newman-Gonchar, R. y Alwell, M. (2009). Self-determination for students with disabilities: a narrative metasynthesis. Career Development for Exceptional Individuals, 32 (2), 108-114.
Dempsey, I. y Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28 (1), 42-52.
Dempsey, I., Keen, D., Pennell, D., O’reilly, J. y Neiland, J. (2009). Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability. Research in Developmental Disabilities, 30, 558-566.
Dunst, C. J., Trivette, C. M. y Hamby, D. W. (2007). Meta-analysis of family-centered help-giving practices research. Mental Retardation and Developmental Disabilities. Research Reviews, 13 (4), 370-378.
Espe-Sherwindt, M. (2008). Family-centered practice: Collaboration, competency and evidence. Support for Learning, 23 (3), 136-143.
Fondo Nacional de Discapacidad (2015). Segundo Estudio Nacional de la Discapacidad en Chile. Santiago: Ministerio de Desarrollo Social.
Gómez-Vela, M., Verdugo, M. Á., González, F., Badia, 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.
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.
Karvonen, M., Test, D., Wood, W., Browder, D. y Algozinne, B. (2004). Putting self-determination into practice. Exceptional Children, 71 (1), 23-41.
Leake, D. y Boone, R. (2007). Multicultural perspectives on self-determination from youth, parent, and teacher focus group. Career Development for Exceptional Individuals, 30 (2), 104-115.
Navas, P., Uhlmann, S. y Berástegui, A. (2014). Envejecimiento activo y discapacidad intelectual. Madrid: Ministerio de Educación, Cultura y Deporte.
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.
Peralta, F. y Arellano, A. (2010). Familia y discapacidad. Una perspectiva teórico-aplicada del Enfoque Centrado en la Familia para promover la autodeterminación. Electronic Journal of Research in Educational Psychology, 8 (3), 1339-1362.
Peralta, F. y Arellano, A. (2014). La autodeterminación de las personas con discapacidad intelectual: situación actual en España. ces Psicología, 7 (2), 59-77.
Peralta, F., González-Torres, M. C. y Sobrino, A. (2005). Creencias y conocimientos de los profesores acerca de la conducta autodeterminada en personas con discapacidad cognitiva. Revista de Investigación Educativa, 23 (2), 433-448.
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.
Pierson, M., Carter, E., Lane, K. y Glaeser, B. (2008). Factors influencing the self-determination of transition-age youth with incidence disabilities. Career Development for Exceptional Individuals, 31 (2), 115-125.
Ponce, A. (2010). Formación en autodeterminación para familias. Madrid: feaps.
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.
Schalock, R. L., Keith, K. D., Verdugo, M. Á. y Gómez, L. (2010). Quality of life model development and use in the field of intellectual disability. En R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities (pp. 17-32). Nueva York: Springer.
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B. y Paek, Y. (2013). Exploring personal and school environment characteristics that predicts self-determination. Exceptionality: a Special Education Journal, 21 (3), 147-157.
Stancliffe, R. J., Abery, B. H., Springborg, H. y Elkin, S. (2000). Substitute decision-making and personal control: implications for self-determination. Mental Retardation, 38, 407-421.
Tamarit, J. y Espejo, L. (2013). Experiencias de empoderamiento en personas con discapacidad intelectual o del desarrollo. Siglo Cero, 44 (2), 26-39.
Trainor, A. (2005). Self-determination perceptions and behaviors of diverse students with ld during the transition planning process. Journal of Learning Disabilities, 38 (3), 233-248.
Tristán, A. (2008). Modificación al modelo de Lawshe para el dictamen cuantitativo de la validez de contenido de un instrumento objetivo. Avances en Medición, 6 (1), 37-48.
Verdugo, M. Á., Vicente, E., Gómez-Vela, M., Fernández-Pulido, R., Wehmeyer, M. L., Badia, M. y Calvo, M. A. (2015). Escala arc-inico de Evaluación de la Autodeterminación. Manual de aplicación y corrección. Salamanca: inico.
Walker, H., Calkins, C., Wehmeyer, M. L., Walker, L., Bacon, A., Palmer, S. et al. (2011). A Social-Ecological Approach to Promote Self-Determination. Exceptionality, 19 (1), 6-18.
Wehmeyer, M. L. (1995). The Arc’s Self-Determination Scale: Procedural Guidelines.
Wehmeyer, M. L. (1999). A functional model of self-determination: describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14 (1), 53-61.
Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30 (3), 113-120.
Wehmeyer, M. L. (2009). Autodeterminación y la tercera generación de prácticas de inclusión. Revista de Educación, 349, 45-67.
Wehmeyer, M. L., Abery, B., Zhang, D., Ward, K., Willis, D., Amin Hossain, W. et al. (2011). Personal self-determination and moderating variables that impact efforts to promote self-determination. Exceptionality: A Special Education Journal, 19 (1), 19-30.
Wehmeyer, M. L., Agran, M. y Hughes, C. (2000). A National survey of teachers’ promotion of Self-Determination and Student-Directed Learning. The Journal of Special Education, 34 (2), 58-68.
Wehmeyer, M. L. y Field, S. (2007). Self-determination: instructional and assessment strategies. Thousand, ca: Corwin Press.
Wehmeyer, M. L. y Little, T. D. (2013). Self-determination, positive psychology and disability. En M. L. Wehmeyer (Ed.). Handbook of positive psychology and disability (pp. 116-136). Oxford: Oxford University Press.
Wehmeyer, M. L., Little, T. D. y Sergeant, J. (2009). Self-determination. En S. J. López y C. R. Snyder (Eds.), Oxford handbook of positive psychology (2.ª ed.) (pp. 357-366). Nueva York: Oxford University Press.
Wehmeyer, M. L., Palmer, S. B., Shogren, K., Williams-Diehm, K. y Soukup, J. H. (2013). Establishing a causal relationship between intervention to promote self-determination and enhanced student self-determination. The Journal of Special Education, 46 (4), 195-210.
Zhang, D. (2005). Parent practices facilitating self-determination skills: The influences of culture, socioeconomic status and children’s special education status. Research and Practice for Persons with Severe Disabilities, 30 (3), 154-162.
Zhang, D., Landmark, L., Greenwelge, C. y Montoya, C. (2010). Culturally diverse parents perspectives on self-determination. Education and Training in Autism and Developmental Disabilities, 45, 175-186.
Zulueta, A. y Peralta, F. (2008). Percepciones de los padres acerca de la conducta autodeterminada de sus hijos con discapacidad intelectual. Siglo Cero, 39 (1), 31-43.
Agran, M., Snow, K. y Swaner, J. (1999). Teacher Perceptions of Self-Determination: Benefits, Characteristics, Strategies. Education and Training in Mental Retardation and Development Disabilities, 34 (3), 293-301.
Algozzine, B., Browder, D., Karvonen, M., Test, D. W. y Wood, W. M. (2001). Effects on interventions to promote self-determination for individuals with disabilities. Review of Educational Research, 71 (2), 219-277.
Arellano, A. (2015). Autodeterminación y discapacidad intelectual: un estudio piloto con padres de la asociación de Puebla (México). Revista Digital A&H, 1, 6-21.
Arellano, A. y Peralta, F. (2013). Calidad de vida y autodeterminación en personas con discapacidad. Valoraciones de los padres. Revista Iberoamericana de Educación, 63, 145-160.
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.
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.
Carter, E. W., Trainor, A., Owens, L., Sweden, B. y Sun, Y. (2009). Self-determination prospects of youth with high-incidence disabilities: divergent perspectives and related factors. Journal of Emotional and Behavioral Disorders, 18 (2), 67-81.
Chambers, C. R., Wehmeyer, M. L., Saito, Y., Lida, K. M., Lee, Y. y Singh, V. (2007). Self-determination: What do we know? Where do we go? Exceptionality, 15 (1), 3-15.
Cobb, B., Lehmann, J., Newman-Gonchar, R. y Alwell, M. (2009). Self-determination for students with disabilities: a narrative metasynthesis. Career Development for Exceptional Individuals, 32 (2), 108-114.
Dempsey, I. y Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28 (1), 42-52.
Dempsey, I., Keen, D., Pennell, D., O’reilly, J. y Neiland, J. (2009). Parent stress, parenting competence and family-centered support to young children with an intellectual or developmental disability. Research in Developmental Disabilities, 30, 558-566.
Dunst, C. J., Trivette, C. M. y Hamby, D. W. (2007). Meta-analysis of family-centered help-giving practices research. Mental Retardation and Developmental Disabilities. Research Reviews, 13 (4), 370-378.
Espe-Sherwindt, M. (2008). Family-centered practice: Collaboration, competency and evidence. Support for Learning, 23 (3), 136-143.
Fondo Nacional de Discapacidad (2015). Segundo Estudio Nacional de la Discapacidad en Chile. Santiago: Ministerio de Desarrollo Social.
Gómez-Vela, M., Verdugo, M. Á., González, F., Badia, 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.
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.
Karvonen, M., Test, D., Wood, W., Browder, D. y Algozinne, B. (2004). Putting self-determination into practice. Exceptional Children, 71 (1), 23-41.
Leake, D. y Boone, R. (2007). Multicultural perspectives on self-determination from youth, parent, and teacher focus group. Career Development for Exceptional Individuals, 30 (2), 104-115.
Navas, P., Uhlmann, S. y Berástegui, A. (2014). Envejecimiento activo y discapacidad intelectual. Madrid: Ministerio de Educación, Cultura y Deporte.
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.
Peralta, F. y Arellano, A. (2010). Familia y discapacidad. Una perspectiva teórico-aplicada del Enfoque Centrado en la Familia para promover la autodeterminación. Electronic Journal of Research in Educational Psychology, 8 (3), 1339-1362.
Peralta, F. y Arellano, A. (2014). La autodeterminación de las personas con discapacidad intelectual: situación actual en España. ces Psicología, 7 (2), 59-77.
Peralta, F., González-Torres, M. C. y Sobrino, A. (2005). Creencias y conocimientos de los profesores acerca de la conducta autodeterminada en personas con discapacidad cognitiva. Revista de Investigación Educativa, 23 (2), 433-448.
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.
Pierson, M., Carter, E., Lane, K. y Glaeser, B. (2008). Factors influencing the self-determination of transition-age youth with incidence disabilities. Career Development for Exceptional Individuals, 31 (2), 115-125.
Ponce, A. (2010). Formación en autodeterminación para familias. Madrid: feaps.
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.
Schalock, R. L., Keith, K. D., Verdugo, M. Á. y Gómez, L. (2010). Quality of life model development and use in the field of intellectual disability. En R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities (pp. 17-32). Nueva York: Springer.
Shogren, K. A., Wehmeyer, M. L., Palmer, S. B. y Paek, Y. (2013). Exploring personal and school environment characteristics that predicts self-determination. Exceptionality: a Special Education Journal, 21 (3), 147-157.
Stancliffe, R. J., Abery, B. H., Springborg, H. y Elkin, S. (2000). Substitute decision-making and personal control: implications for self-determination. Mental Retardation, 38, 407-421.
Tamarit, J. y Espejo, L. (2013). Experiencias de empoderamiento en personas con discapacidad intelectual o del desarrollo. Siglo Cero, 44 (2), 26-39.
Trainor, A. (2005). Self-determination perceptions and behaviors of diverse students with ld during the transition planning process. Journal of Learning Disabilities, 38 (3), 233-248.
Tristán, A. (2008). Modificación al modelo de Lawshe para el dictamen cuantitativo de la validez de contenido de un instrumento objetivo. Avances en Medición, 6 (1), 37-48.
Verdugo, M. Á., Vicente, E., Gómez-Vela, M., Fernández-Pulido, R., Wehmeyer, M. L., Badia, M. y Calvo, M. A. (2015). Escala arc-inico de Evaluación de la Autodeterminación. Manual de aplicación y corrección. Salamanca: inico.
Walker, H., Calkins, C., Wehmeyer, M. L., Walker, L., Bacon, A., Palmer, S. et al. (2011). A Social-Ecological Approach to Promote Self-Determination. Exceptionality, 19 (1), 6-18.
Wehmeyer, M. L. (1995). The Arc’s Self-Determination Scale: Procedural Guidelines.
Wehmeyer, M. L. (1999). A functional model of self-determination: describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14 (1), 53-61.
Wehmeyer, M. L. (2005). Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities, 30 (3), 113-120.
Wehmeyer, M. L. (2009). Autodeterminación y la tercera generación de prácticas de inclusión. Revista de Educación, 349, 45-67.
Wehmeyer, M. L., Abery, B., Zhang, D., Ward, K., Willis, D., Amin Hossain, W. et al. (2011). Personal self-determination and moderating variables that impact efforts to promote self-determination. Exceptionality: A Special Education Journal, 19 (1), 19-30.
Wehmeyer, M. L., Agran, M. y Hughes, C. (2000). A National survey of teachers’ promotion of Self-Determination and Student-Directed Learning. The Journal of Special Education, 34 (2), 58-68.
Wehmeyer, M. L. y Field, S. (2007). Self-determination: instructional and assessment strategies. Thousand, ca: Corwin Press.
Wehmeyer, M. L. y Little, T. D. (2013). Self-determination, positive psychology and disability. En M. L. Wehmeyer (Ed.). Handbook of positive psychology and disability (pp. 116-136). Oxford: Oxford University Press.
Wehmeyer, M. L., Little, T. D. y Sergeant, J. (2009). Self-determination. En S. J. López y C. R. Snyder (Eds.), Oxford handbook of positive psychology (2.ª ed.) (pp. 357-366). Nueva York: Oxford University Press.
Wehmeyer, M. L., Palmer, S. B., Shogren, K., Williams-Diehm, K. y Soukup, J. H. (2013). Establishing a causal relationship between intervention to promote self-determination and enhanced student self-determination. The Journal of Special Education, 46 (4), 195-210.
Zhang, D. (2005). Parent practices facilitating self-determination skills: The influences of culture, socioeconomic status and children’s special education status. Research and Practice for Persons with Severe Disabilities, 30 (3), 154-162.
Zhang, D., Landmark, L., Greenwelge, C. y Montoya, C. (2010). Culturally diverse parents perspectives on self-determination. Education and Training in Autism and Developmental Disabilities, 45, 175-186.
Zulueta, A. y Peralta, F. (2008). Percepciones de los padres acerca de la conducta autodeterminada de sus hijos con discapacidad intelectual. Siglo Cero, 39 (1), 31-43.
Álvarez Aguado, I., Vega Córdova, V., Spencer González, H., González Carrasco, F., & Arriagada Chinchón, R. (2019). Chilean adults with intellectual disabilities: beliefs, attitudes and parental perceptions about their self-determination. Siglo Cero, 50(2), 51–72. https://doi.org/10.14201/scero20195025172
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