Self-Determination and Intellectual Disabilities: An Analysis from the Perspective of Families
Abstract Family context plays an important role in supporting self-determination of people with intellectual disabilities. However, research regarding this topic is still li- mited. This article presents a descriptive study that addresses the perspective of a group of parents about their children’s self-determination (n = 40). A semi-structured interview was used, in order to value certain knowledge, attitudes and strategies that can facilitate or limit self-determination skills. Families in this study mostly unknown the concept of self-determination, while value autonomy and independence as a priority educational objective. Also, they are insecure about how to support their children, and show fears. Besides, parents perceive their children as needed of protection. However, they also implemented some strategies that promote self-determination; such as providing opportunities to choose or talk about their personal characteristics. Several factors related to the distinctive features of each family, needs, or life cycle dynamics, impact on their perception of this goal. It is noted, therefore, the importance of understanding the experiences of families to meet their needs and support them as facilitators of self-determination and social inclusion of children with intellectual disabilities.
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Agran, M., Wehmeyer, M. L., Cavin, M. y Palmer, S. (2008). Promoting student active classroom participation skills through instruction to promote self-regulated learning and self-determination. Career Development for Exceptional Individuals, 31, 106-114.
http://dx.doi.org/10.1177/0885728808317656
Algozzine, B., Browder, D., Karvonen, D., Test, W. y Wood, W. M. (2001). Effects on interventions to promote self-determination for individuals with disabilities. Review of Educational Research, 71, 219-277.
http://dx.doi.org/10.3102/00346543071002219
Bacon, A. y O’Hara, D. (2011). Self-determination across the life span: Issues and gaps.Exceptionality, 19, 31-45.
http://dx.doi.org/10.1080/09362835.2011.537228
Brotherson, M. J., Cook, C. C., Erwin, E. J. y Weigel-Garrey, C. J. (2008). Understanding self-determination and families of young children with disabilities in home environments. Journal of Early Intervention, 31 (1), 22-43.
http://dx.doi.org/10.1177/1053815108324445
Brown, I. y Brown, R. (2009). Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6 (1), 11-18.
http://dx.doi.org/10.1111/j.1741-1130.2008.00198.x
Burke, M. (2013). Improving parental involvement: training special education advocates. Journal of Disability Policy Studies, 23 (4), 225-234.
http://dx.doi.org/10.1177/1044207311424910
Burton, R., Morgan, M. y Davidson, J. (2005). Does the daily choice making adults with intellectual disability meet the normalization principle? Journal of Intellectual and Developmental Disabilities, 30 (4), 226-235.
http://dx.doi.org/10.1080/13668250500349359
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.
http://dx.doi.org/10.1080/09362830709336922
Curryer, B., Stancliffe, R. y Dew, A. (2015). Self-determination: adults with intellectual disability and their family. Journal of Intellectual and Developmental Disability [versión electrónica]. doi: 10.3109/13668250.2015.1029883
http://dx.doi.org/10.3109/13668250.2015.1029883
Dempsey, I. y Dunst, C. J. (2004). Helpgiving styles and parent empowerment in families with a young child with a disability. Journal of Intellectual and Developmental Disability, 29 (1), 40-51.
http://dx.doi.org/10.1080/13668250410001662874
Erwin, E. J., Brotherson, M. J., Palmer, S. B., Cook, C. C., Weigel-Garrey, C. Y. y Summers, J. A. (2009). How to promote self-determination for young children with disabilities: evidenced-based strategies for early childhood practitioners and families. Young Exceptional Children, 12 (2), 27-37.
http://dx.doi.org/10.1177/1096250608329611
Ferguson, D. L., Ferguson, P. M. y Wehmeyer, M .L. (2013). The self-advocacy movement: Intellectual disability in late modern times (1980-Present). En M. L. Wehmeyer (Ed.), The story of intellectual disability: An evolution of meaning, understanding, and public perception (pp. 237-282). Baltimore: Paul H. Brookes.
Friend, M. y Bursuck, W. D. (2012). Including students with special needs. A practical guide for classroom teachers (6.ª ed.). Greensboro, NC: Pearson.
Gómez, J. M. y Cardona, M. C. (2010). Percepciones y actitudes de los padres acerca de la discriminación de sus hijos por razón de discapacidad intelectual. Educación y Diversidad, 4 (1), 73-88.
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.
Guyard, A., Michelsen, S., Arnaud, C., Lyons, A., Cans, C. y Fauconnier, J. (2012). Measuring the concept of impact of childhood disability on parents: validation of a multidimensional measurement in a cerebral palsy population. Research in Developmental Disabilities, 33 (5), 1594-1604.
http://dx.doi.org/10.1016/j.ridd.2012.03.029
Palmer, S. B. (2010). Self-determination: a life span perspective. Focus on Exceptional Children, 42, 1-16.
Palmer, S. B. y Wehmeyer, M. L. (2002). A parent’s guide to the self-determined learning model for early elementary students. Kansas: Beach Center on Disability.
Palomo, R. y Tamarit, J. (2000). Autodeterminación: analizando la elección. Siglo Cero, 31 (3), 21-41.
Ponce, A. (2010). Formación en autodeterminación para familias. Madrid: Confederación Española de Organizaciones en favor de las Personas con Discapacidad Intelectual (FEAPS).
Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Social Science & Medicine, 67 (5), 834-843.
http://dx.doi.org/10.1016/j.socscimed.2008.05.023
Shogren, K. A. (2013). A social-ecological analysis of the self-determination literature. Intellectual and Developmental Disabilities, 51 (6), 496-511.
http://dx.doi.org/10.1352/1934-9556-51.6.496
Stalker, K. y McArthur, K. (2012). Child abuse, child protection and disabled children: a review of recent research. Child Abuse Review, 21 (1), 24-40.
http://dx.doi.org/10.1002/car.1154
Turnbull, A. P. y Turnbull, H. R. (2000). Fostering family-professional partnerships. En M. E. Snell y F. Brown (Eds.), Instruction of students with severe disabilities (5.ª ed.) (pp. 31-66). Nueva Jersey: Prentice Hall.
Turnbull, A. P. y Turnbull, H. R. (2001). Self-determination for individuals with significant cognitive disabilities and their families. Association for Persons with Severe Handicaps, 26 (1), 56-62.
http://dx.doi.org/10.2511/rpsd.26.1.56
Verdugo, M. Á., Gómez-Vela, M., Fernández, R., Vicente, E., Wehmeyer, M. L. y otros (2013). ¿Cómo evaluar la autodeterminación? Escala ARC-INICO de evaluación de la autodeterminación. Siglo Cero, 44 (4), 21-39.
http://dx.doi.org/10.1111/j.1741-1130.2008.00201.x
Verdugo, M. Á. y Schalock, R. L. (2009). Quality of life: from concept to future applications in the field of intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6 (1), 62-64.
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.
http://dx.doi.org/10.2511/rpsd.30.3.113
Wehmeyer, M. L. (2009). Autodeterminación y la tercera generación de prácticas de inclusión.Revista de Educación, 349, 45-67.
Wehmeyer, M. L. (2014). Self-determination: a family affair. Family Relations. Interdisciplinary Journal of Applied Family Studies, 63 (1), 178-184.
http://dx.doi.org/10.1111/fare.12052
Wehmeyer, M. L., Abery, B., Zhang, D., Ward, K., Willis, D., Amin, W. y otros (2011). A series of paper on scaling-up efforts to promote self-determination. Personal self- determination and moderating variables that impact efforts to promote self-determination. Exceptionality, 19, 19-30.
http://dx.doi.org/10.1080/09362835.2011.537225
Wehmeyer, M. L. y Field, S. (2007). Self-determination: instructional and assessment strategies.Thousand, CA: Corwin Press.
Wehmeyer, M. L. y Garner, N. W. (2003). The impact of personal characteristics of people with intellectual disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16, 255-265.
http://dx.doi.org/10.1046/j.1468-3148.2003.00161.x
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.
http://dx.doi.org/10.1093/oxfordhb/9780195398786.001.0001
Wehmeyer, M. L., Palmer, S., Shogren, K., Williams-Diehm, K. y Soukup, J. H. (2010). Establishing a causal relationship between intervention to promote self-determination and enhanced student self-determination. The Journal of Special Education, 4, 195-2010.
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.
http://dx.doi.org/10.2511/rpsd.30.3.154
Zhang, D., Landmark, L., Greenwelge, C. y Montoya, C. L. (2010). Culturally diverse parents perspectives on self-determination. Education and Training in Autism and Developmental Disabilities, 45, 175-186.
http://dx.doi.org/10.1177/0885728808317656
Algozzine, B., Browder, D., Karvonen, D., Test, W. y Wood, W. M. (2001). Effects on interventions to promote self-determination for individuals with disabilities. Review of Educational Research, 71, 219-277.
http://dx.doi.org/10.3102/00346543071002219
Bacon, A. y O’Hara, D. (2011). Self-determination across the life span: Issues and gaps.Exceptionality, 19, 31-45.
http://dx.doi.org/10.1080/09362835.2011.537228
Brotherson, M. J., Cook, C. C., Erwin, E. J. y Weigel-Garrey, C. J. (2008). Understanding self-determination and families of young children with disabilities in home environments. Journal of Early Intervention, 31 (1), 22-43.
http://dx.doi.org/10.1177/1053815108324445
Brown, I. y Brown, R. (2009). Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6 (1), 11-18.
http://dx.doi.org/10.1111/j.1741-1130.2008.00198.x
Burke, M. (2013). Improving parental involvement: training special education advocates. Journal of Disability Policy Studies, 23 (4), 225-234.
http://dx.doi.org/10.1177/1044207311424910
Burton, R., Morgan, M. y Davidson, J. (2005). Does the daily choice making adults with intellectual disability meet the normalization principle? Journal of Intellectual and Developmental Disabilities, 30 (4), 226-235.
http://dx.doi.org/10.1080/13668250500349359
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.
http://dx.doi.org/10.1080/09362830709336922
Curryer, B., Stancliffe, R. y Dew, A. (2015). Self-determination: adults with intellectual disability and their family. Journal of Intellectual and Developmental Disability [versión electrónica]. doi: 10.3109/13668250.2015.1029883
http://dx.doi.org/10.3109/13668250.2015.1029883
Dempsey, I. y Dunst, C. J. (2004). Helpgiving styles and parent empowerment in families with a young child with a disability. Journal of Intellectual and Developmental Disability, 29 (1), 40-51.
http://dx.doi.org/10.1080/13668250410001662874
Erwin, E. J., Brotherson, M. J., Palmer, S. B., Cook, C. C., Weigel-Garrey, C. Y. y Summers, J. A. (2009). How to promote self-determination for young children with disabilities: evidenced-based strategies for early childhood practitioners and families. Young Exceptional Children, 12 (2), 27-37.
http://dx.doi.org/10.1177/1096250608329611
Ferguson, D. L., Ferguson, P. M. y Wehmeyer, M .L. (2013). The self-advocacy movement: Intellectual disability in late modern times (1980-Present). En M. L. Wehmeyer (Ed.), The story of intellectual disability: An evolution of meaning, understanding, and public perception (pp. 237-282). Baltimore: Paul H. Brookes.
Friend, M. y Bursuck, W. D. (2012). Including students with special needs. A practical guide for classroom teachers (6.ª ed.). Greensboro, NC: Pearson.
Gómez, J. M. y Cardona, M. C. (2010). Percepciones y actitudes de los padres acerca de la discriminación de sus hijos por razón de discapacidad intelectual. Educación y Diversidad, 4 (1), 73-88.
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.
Guyard, A., Michelsen, S., Arnaud, C., Lyons, A., Cans, C. y Fauconnier, J. (2012). Measuring the concept of impact of childhood disability on parents: validation of a multidimensional measurement in a cerebral palsy population. Research in Developmental Disabilities, 33 (5), 1594-1604.
http://dx.doi.org/10.1016/j.ridd.2012.03.029
Palmer, S. B. (2010). Self-determination: a life span perspective. Focus on Exceptional Children, 42, 1-16.
Palmer, S. B. y Wehmeyer, M. L. (2002). A parent’s guide to the self-determined learning model for early elementary students. Kansas: Beach Center on Disability.
Palomo, R. y Tamarit, J. (2000). Autodeterminación: analizando la elección. Siglo Cero, 31 (3), 21-41.
Ponce, A. (2010). Formación en autodeterminación para familias. Madrid: Confederación Española de Organizaciones en favor de las Personas con Discapacidad Intelectual (FEAPS).
Power, A. (2008). Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Social Science & Medicine, 67 (5), 834-843.
http://dx.doi.org/10.1016/j.socscimed.2008.05.023
Shogren, K. A. (2013). A social-ecological analysis of the self-determination literature. Intellectual and Developmental Disabilities, 51 (6), 496-511.
http://dx.doi.org/10.1352/1934-9556-51.6.496
Stalker, K. y McArthur, K. (2012). Child abuse, child protection and disabled children: a review of recent research. Child Abuse Review, 21 (1), 24-40.
http://dx.doi.org/10.1002/car.1154
Turnbull, A. P. y Turnbull, H. R. (2000). Fostering family-professional partnerships. En M. E. Snell y F. Brown (Eds.), Instruction of students with severe disabilities (5.ª ed.) (pp. 31-66). Nueva Jersey: Prentice Hall.
Turnbull, A. P. y Turnbull, H. R. (2001). Self-determination for individuals with significant cognitive disabilities and their families. Association for Persons with Severe Handicaps, 26 (1), 56-62.
http://dx.doi.org/10.2511/rpsd.26.1.56
Verdugo, M. Á., Gómez-Vela, M., Fernández, R., Vicente, E., Wehmeyer, M. L. y otros (2013). ¿Cómo evaluar la autodeterminación? Escala ARC-INICO de evaluación de la autodeterminación. Siglo Cero, 44 (4), 21-39.
http://dx.doi.org/10.1111/j.1741-1130.2008.00201.x
Verdugo, M. Á. y Schalock, R. L. (2009). Quality of life: from concept to future applications in the field of intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 6 (1), 62-64.
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.
http://dx.doi.org/10.2511/rpsd.30.3.113
Wehmeyer, M. L. (2009). Autodeterminación y la tercera generación de prácticas de inclusión.Revista de Educación, 349, 45-67.
Wehmeyer, M. L. (2014). Self-determination: a family affair. Family Relations. Interdisciplinary Journal of Applied Family Studies, 63 (1), 178-184.
http://dx.doi.org/10.1111/fare.12052
Wehmeyer, M. L., Abery, B., Zhang, D., Ward, K., Willis, D., Amin, W. y otros (2011). A series of paper on scaling-up efforts to promote self-determination. Personal self- determination and moderating variables that impact efforts to promote self-determination. Exceptionality, 19, 19-30.
http://dx.doi.org/10.1080/09362835.2011.537225
Wehmeyer, M. L. y Field, S. (2007). Self-determination: instructional and assessment strategies.Thousand, CA: Corwin Press.
Wehmeyer, M. L. y Garner, N. W. (2003). The impact of personal characteristics of people with intellectual disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16, 255-265.
http://dx.doi.org/10.1046/j.1468-3148.2003.00161.x
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.
http://dx.doi.org/10.1093/oxfordhb/9780195398786.001.0001
Wehmeyer, M. L., Palmer, S., Shogren, K., Williams-Diehm, K. y Soukup, J. H. (2010). Establishing a causal relationship between intervention to promote self-determination and enhanced student self-determination. The Journal of Special Education, 4, 195-2010.
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.
http://dx.doi.org/10.2511/rpsd.30.3.154
Zhang, D., Landmark, L., Greenwelge, C. y Montoya, C. L. (2010). Culturally diverse parents perspectives on self-determination. Education and Training in Autism and Developmental Disabilities, 45, 175-186.
Arellano Torres, A., & Peralta López, F. (2015). Self-Determination and Intellectual Disabilities: An Analysis from the Perspective of Families. Siglo Cero, 46(3), 7–25. https://doi.org/10.14201/scero2015463725
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