Asistencia personal en la promoción de vida independiente para personas con discapacidad intelectual: una investigación básica y aplicada
Resumen
Planteamiento del problema: El asistente personal es una figura de apoyo a la mejora de la autonomía y la vida independiente, coherente con los nuevos modelos de intervención con personas con discapacidad intelectual. Método: Se desarrollan dos subestudios. El primero cuantitativo, con 120 personas con discapacidad intelectual y 147 familiares, tiene el objetivo de conocer la percepción de las necesidades de apoyo para la vida independiente. La segunda fase es un estudio de casos con 4 participantes, en los que se aplica la figura del asistente personal. Resultados: Destaca del primer subestudio la clara disposición de las personas con discapacidad intelectual a tener más autonomía y autodeterminación en sus proyectos de vida. En el segundo subestudio resalta el impacto de la asistencia personal en el empoderamiento y en la mejora de la autonomía. Conclusiones: Con base en los resultados, se propone un perfil competencial del asistente personal con diez competencias clave y se realiza un análisis crítico de los hallazgos más relevantes.
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American Association on Intellectual and Developmental Disabilities (2010). Intellectual disability: Definition, classification, and systems of supports (11th edition). Washington: aaidd.
American Psychological Association (2003). Ethical principles of psychologist and code of conduct. Washington: apa.
Arnau, S. (2002). Una construcción social de la discapacidad: El movimiento de vida independiente. Jornades de Foment de la Investigación. Barcelona.
Bexkens, A. (2013). Risk-taking in adolescents with mild-to-borderline intellectual disability and/or behavior disorder: An experimental study of cognitive and affective processes. Unpublished dissertation. University of Amsterdam, Amsterdam.
Claes, C., Van Hove, G., Vandevelde, S., Van Loon, J. and Schalock, R. (2012). The influence of supports strategies, environmental factors, and client characteristics on quality of life-related personal outcomes. Research in Developmental Disabilities, 33, 96-103. - https://doi.org/10.1016/j.ridd.2011.08.024
Dollar, C., Fredrick, L., Alberto, P. and Luke, J. (2012). Using simultaneous prompting to teach independent living and leisure skills to adults with severe intellectual disabilities. Journal of Autism and Developmental Disorders, 46 (3), 1084-1095. - https://doi.org/10.1016/j.ridd.2011.09.001
Egard, H. (2011). Personlig Assistans i Praktiken. Beredskap, Initiativ och Vanskaplighet. Doctoral Thesis. Lunds universitet, Lund.
European Network on Independent Living (2013). Personal Assistance. Brussels: European Union.
Farmer, J. L., Allsopp, D. and Ferron, J. (2015). Impact of the personal strengths program on self-determination levels of college students with ld and/or adhd. Learning Disability Quarterly, 38 (3), 145-159. - https://doi.org/10.1177/0731948714526998
Fitzgerald, J. (2010). Independent living in the community: are people with intellectual disabilities reaching their full potential? Critical social thinking: policy and practice, 2, 77-92.
Freyhoff, G., Hess, G., Kerr, L., Menzel, E., Tronbacke, B. and Van der Veken, K. (1998). Make it Simple: European Guidelines for the Production of Easy-to-Read Information for People with Learning Disability for authors, editors, information providers, translators and other interested persons. Brussels: European Association ilsmh.
Ghaleb, A. (2015). Teaching reading for students with intellectual disabilities: a systematic review. International Education Studies, 8 (9), 79-87. - https://doi.org/10.5539/ies.v8n9p79
Henderson, N. (2009). Empowering students for life. Excepcional parent, 39 (9), 36-37.
Izuzquiza, D. and Rodríguez Herrero, P. (2016). Evaluación de la metodología empleo con apoyo (eca) en el Programa Promentor. El ajuste competencial. Siglo Cero, 47 (1), 37-54. - https://doi.org/10.14201/scero201613754
Jones, J. and Gallus, K. (2016). Understanding deinstitutionalization: what families value and desire in the transition to community living. Research and Practice for Persons with Severe Disabilities, 41 (2), 116-131. - https://doi.org/10.1177/1540796916637050
Karin, A. (2015). The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children's home. Journal of Applied Research in Intellectual Disabilities, 28, 201-211. - https://doi.org/10.1111/jar.12122
McKenzie, J. A. (2013). Models of intellectual disability: towards a perspective of (poss) ability. Journal of Intellectual Disability Research, 57 (4), 370-379. - https://doi.org/10.1111/j.1365-2788.2012.01547.x
McMillan, J. and Schumacher, S. (2010). Research in education: Evidence-based inquiry. Harlow: Pearson.
Navallas, E. and Verdugo, M. Á. (2009). Integrando calidad de vida y calidad de gestión en un servicio de viviendas y residencia para personas con discapacidad intelectual. Siglo Cero, 40 (2), 5-22.
O'Brien, P., McConkey and García Iriarte, E. (2014). Co-researching with people who have intellectual disabilities: insights from a national survey. Journal of Applied Research in Intellectual Disabilities, 27, 65-75. - https://doi.org/10.1111/jar.12074
Officer, A. and Shakespeare, T. (2013). The world report on disability and people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10 (2), 86-88. - https://doi.org/10.1111/jppi.12031
Oxford, M. and McDonald, G. (1999). Two paths-One journey: Ending oppression… one accessible step at a time. Topeka: Kansas Department of Health and Environment.
Roos, J. M. (2009). Quality of Personal Assistance Shaped by Governments, Markets and Cooperations. Doctoral Thesis. University of Gothenburg, Goteborg.
Salmon, N., García Iriarte, E. and Burns, E. Q. (2017). Research active programs: a pilot inclusive research curriculum in higher education. International Journal of Research and Method in Education, 40 (2), 181-200. - https://doi.org/10.1080/1743727X.2015.1099154
Sastre-Riba, S., Fonseca-Pedrero, E. and Poch-Olivé, M. L. (2015). Early development of executive functions: a differential study. Anales de Psicología, 31, 607-614. - https://doi.org/10.6018/analesps.31.2.180711
Schalock, R. and Verdugo, M. Á. (2013). The transformation of disabilities organizations. Intellectual and Developmental Disabilities, 51 (4), 273-286. - https://doi.org/10.1352/1934-9556-51.4.273
Schalock, R., Verdugo, M. Á. and Gómez, L. (2011). Evidence-based practices in the field of intellectual and developmental disabilities: an international consensus approach. Evaluation and Program Planning, 34 (3), 273-282. - https://doi.org/10.1016/j.evalprogplan.2010.10.004
Schelly, D. (2008). Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflective ethnography. Disability and Society, 23 (7), 719-732. - https://doi.org/10.1080/09687590802469206
Shogren, L. and Broussard, R. (2011). Exploring perceptions of self-determination of individuals with intellectual disability. Intellectual and Developmental Disabilities, 49 (2), 86-102. - https://doi.org/10.1352/1934-9556-49.2.86
Shogren, L., Wehmeyer, M., Palmer, S., Rifenbark, G., Little, T. and Todd, D. (2015). Relationships between self-determination and post school outcomes for youth with disabilities. Journal of Special Education, 48 (4), 256-267. - https://doi.org/10.1177/0022466913489733
Soenen, S.; Van Berckealer-Onnes, I. and Scholte, E. (2016). A comparison of support for two groups of young adults with mild intellectual disability. British Journal of Learning Disabilities, 44 (2), 146-158. - https://doi.org/10.1111/bld.12127
Stake, R. E. (2005). Qualitative case studies. In N. K. Denzin and Y. S. Lincoln (Eds.), The sage handbook of qualitative research (pp. 443-466). Thousand Oaks, ca: Sage.
Verdugo, M. Á., Navas, P., Gómez, L. and Schalock, R. (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 (11), 1036-1045. - https://doi.org/10.1111/j.1365-2788.2012.01585.x
Wang, M., Schalock, R., Verdugo, M. Á. and Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115 (3), 218-233. - https://doi.org/10.1352/1944-7558-115.3.218
White, G. W., Simpson, J. L., Gonda, C., Ravesloot, C. and Coble, Z. (2010). Moving from independence to interdependence: A conceptual model for better understanding community participation of centers for independent living consumers. Journal of Disability Policy Studies, 20 (4), 233-240. - https://doi.org/10.1177/1044207309350561
Williams, V., Ponting, L., Ford, K. and Rudge, P. (2009). Skills for support: personal assistants and people with learning disabilities. British Journal of Learning Disabilities, 38, 59-67. - https://doi.org/10.1111/j.1468-3156.2009.00570.x
American Association on Intellectual and Developmental Disabilities (2010). Intellectual disability: Definition, classification, and systems of supports (11th edition). Washington: aaidd.
American Psychological Association (2003). Ethical principles of psychologist and code of conduct. Washington: apa.
Arnau, S. (2002). Una construcción social de la discapacidad: El movimiento de vida independiente. Jornades de Foment de la Investigación. Barcelona.
Bexkens, A. (2013). Risk-taking in adolescents with mild-to-borderline intellectual disability and/or behavior disorder: An experimental study of cognitive and affective processes. Unpublished dissertation. University of Amsterdam, Amsterdam.
Claes, C., Van Hove, G., Vandevelde, S., Van Loon, J. and Schalock, R. (2012). The influence of supports strategies, environmental factors, and client characteristics on quality of life-related personal outcomes. Research in Developmental Disabilities, 33, 96-103. - https://doi.org/10.1016/j.ridd.2011.08.024
Dollar, C., Fredrick, L., Alberto, P. and Luke, J. (2012). Using simultaneous prompting to teach independent living and leisure skills to adults with severe intellectual disabilities. Journal of Autism and Developmental Disorders, 46 (3), 1084-1095. - https://doi.org/10.1016/j.ridd.2011.09.001
Egard, H. (2011). Personlig Assistans i Praktiken. Beredskap, Initiativ och Vanskaplighet. Doctoral Thesis. Lunds universitet, Lund.
European Network on Independent Living (2013). Personal Assistance. Brussels: European Union.
Farmer, J. L., Allsopp, D. and Ferron, J. (2015). Impact of the personal strengths program on self-determination levels of college students with ld and/or adhd. Learning Disability Quarterly, 38 (3), 145-159. - https://doi.org/10.1177/0731948714526998
Fitzgerald, J. (2010). Independent living in the community: are people with intellectual disabilities reaching their full potential? Critical social thinking: policy and practice, 2, 77-92.
Freyhoff, G., Hess, G., Kerr, L., Menzel, E., Tronbacke, B. and Van der Veken, K. (1998). Make it Simple: European Guidelines for the Production of Easy-to-Read Information for People with Learning Disability for authors, editors, information providers, translators and other interested persons. Brussels: European Association ilsmh.
Ghaleb, A. (2015). Teaching reading for students with intellectual disabilities: a systematic review. International Education Studies, 8 (9), 79-87. - https://doi.org/10.5539/ies.v8n9p79
Henderson, N. (2009). Empowering students for life. Excepcional parent, 39 (9), 36-37.
Izuzquiza, D. and Rodríguez Herrero, P. (2016). Evaluación de la metodología empleo con apoyo (eca) en el Programa Promentor. El ajuste competencial. Siglo Cero, 47 (1), 37-54. - https://doi.org/10.14201/scero201613754
Jones, J. and Gallus, K. (2016). Understanding deinstitutionalization: what families value and desire in the transition to community living. Research and Practice for Persons with Severe Disabilities, 41 (2), 116-131. - https://doi.org/10.1177/1540796916637050
Karin, A. (2015). The role of the external personal assistants for children with profound intellectual and multiple disabilities working in the children's home. Journal of Applied Research in Intellectual Disabilities, 28, 201-211. - https://doi.org/10.1111/jar.12122
McKenzie, J. A. (2013). Models of intellectual disability: towards a perspective of (poss) ability. Journal of Intellectual Disability Research, 57 (4), 370-379. - https://doi.org/10.1111/j.1365-2788.2012.01547.x
McMillan, J. and Schumacher, S. (2010). Research in education: Evidence-based inquiry. Harlow: Pearson.
Navallas, E. and Verdugo, M. Á. (2009). Integrando calidad de vida y calidad de gestión en un servicio de viviendas y residencia para personas con discapacidad intelectual. Siglo Cero, 40 (2), 5-22.
O'Brien, P., McConkey and García Iriarte, E. (2014). Co-researching with people who have intellectual disabilities: insights from a national survey. Journal of Applied Research in Intellectual Disabilities, 27, 65-75. - https://doi.org/10.1111/jar.12074
Officer, A. and Shakespeare, T. (2013). The world report on disability and people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 10 (2), 86-88. - https://doi.org/10.1111/jppi.12031
Oxford, M. and McDonald, G. (1999). Two paths-One journey: Ending oppression… one accessible step at a time. Topeka: Kansas Department of Health and Environment.
Roos, J. M. (2009). Quality of Personal Assistance Shaped by Governments, Markets and Cooperations. Doctoral Thesis. University of Gothenburg, Goteborg.
Salmon, N., García Iriarte, E. and Burns, E. Q. (2017). Research active programs: a pilot inclusive research curriculum in higher education. International Journal of Research and Method in Education, 40 (2), 181-200. - https://doi.org/10.1080/1743727X.2015.1099154
Sastre-Riba, S., Fonseca-Pedrero, E. and Poch-Olivé, M. L. (2015). Early development of executive functions: a differential study. Anales de Psicología, 31, 607-614. - https://doi.org/10.6018/analesps.31.2.180711
Schalock, R. and Verdugo, M. Á. (2013). The transformation of disabilities organizations. Intellectual and Developmental Disabilities, 51 (4), 273-286. - https://doi.org/10.1352/1934-9556-51.4.273
Schalock, R., Verdugo, M. Á. and Gómez, L. (2011). Evidence-based practices in the field of intellectual and developmental disabilities: an international consensus approach. Evaluation and Program Planning, 34 (3), 273-282. - https://doi.org/10.1016/j.evalprogplan.2010.10.004
Schelly, D. (2008). Problems associated with choice and quality of life for an individual with intellectual disability: a personal assistant's reflective ethnography. Disability and Society, 23 (7), 719-732. - https://doi.org/10.1080/09687590802469206
Shogren, L. and Broussard, R. (2011). Exploring perceptions of self-determination of individuals with intellectual disability. Intellectual and Developmental Disabilities, 49 (2), 86-102. - https://doi.org/10.1352/1934-9556-49.2.86
Shogren, L., Wehmeyer, M., Palmer, S., Rifenbark, G., Little, T. and Todd, D. (2015). Relationships between self-determination and post school outcomes for youth with disabilities. Journal of Special Education, 48 (4), 256-267. - https://doi.org/10.1177/0022466913489733
Soenen, S.; Van Berckealer-Onnes, I. and Scholte, E. (2016). A comparison of support for two groups of young adults with mild intellectual disability. British Journal of Learning Disabilities, 44 (2), 146-158. - https://doi.org/10.1111/bld.12127
Stake, R. E. (2005). Qualitative case studies. In N. K. Denzin and Y. S. Lincoln (Eds.), The sage handbook of qualitative research (pp. 443-466). Thousand Oaks, ca: Sage.
Verdugo, M. Á., Navas, P., Gómez, L. and Schalock, R. (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 (11), 1036-1045. - https://doi.org/10.1111/j.1365-2788.2012.01585.x
Wang, M., Schalock, R., Verdugo, M. Á. and Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115 (3), 218-233. - https://doi.org/10.1352/1944-7558-115.3.218
White, G. W., Simpson, J. L., Gonda, C., Ravesloot, C. and Coble, Z. (2010). Moving from independence to interdependence: A conceptual model for better understanding community participation of centers for independent living consumers. Journal of Disability Policy Studies, 20 (4), 233-240. - https://doi.org/10.1177/1044207309350561
Williams, V., Ponting, L., Ford, K. and Rudge, P. (2009). Skills for support: personal assistants and people with learning disabilities. British Journal of Learning Disabilities, 38, 59-67. - https://doi.org/10.1111/j.1468-3156.2009.00570.x
Ruiz Ambit, S., Rodríguez Herrero, P., & Izuzquiza Gasset, D. (2019). Asistencia personal en la promoción de vida independiente para personas con discapacidad intelectual: una investigación básica y aplicada. Siglo Cero, 50(2), 19–38. https://doi.org/10.14201/scero20195021938
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