Diseño de la guía GAS-VI para la evaluación del apoyo a la vida independiente de personas con discapacidad intelectual | Design of the guide GAS-VI for the assessment of the support to independent living of people with intellectual disabilities

Referencias bibliográficas

• Amado, A. N. et al. (2013). “Social inclusion and community participation of individuals with intellectual/developmental disabilities”. Intellectual and Developmental Disabilities, 51(5), pp. 360–375. https://doi.org/10.1352/1934-9556-51.5.360.
• 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), pp.119-132.
• Beadle-Brown, J. et al. (2016). “Quality of Life and Quality of Support for People with Severe Intellectual Disability and Complex Needs”. Journal of Applied Research in Intellectual Disabilities, 29(5), pp. 409–421. https://doi.org/10.1111/jar.12200.
• Bigby, C. et al. (2017). “Conundrums of supported living: The experiences of people with intellectual disability”. Journal of Intellectual and Developmental Disability, 42(4), pp. 309-319. https://doi.org/10.3109/13668250.2016.1253051.
• Bigby, C. et al. (2018). “Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review”. Journal of Applied Research in Intellectual Disabilities,31(2), pp. 165-180. https://doi.org/10.1111/jar.12390.
• Biondo, P. D. et al. (2019). “How to increase public participation in advance care planning: Findings from a World Café to elicit community group perspectives”. BMC Public Health, 19(1), pp. 1–11. https://doi.org/10.1186/s12889-019-7034-4.
• Bond, R. J. y Hurst, J. (2010). “How adults with learning disabilities view living independently”. British Journal of Learning Disabilities, 38(4), pp. 286–292. https://doi.org/10.1111/j.1468-3156.2009.00604.x.
• Brown, J. y Isaacs, D. (2005). The World Café: Shaping Our Futures through Conversations That Matter. San Francisco: Berret-Koehler Publishers.
• Callus, M. y Farrugia, R. (2016). The Disabled Child’s Participation Rights. London: Routledge.
• Carson, L. (2011). “Designing a public conversation using the world cafe method”. Social Alternatives, 30(1), pp. 10–14. Recuperado de https://www.bmartin.cc/pubs/11sa/Carson.pdf.
• Chadwick, D. et al. (2016). “Perceptions of the risks and benefits of Internet access and use by people with intellectual disabilities”. British Journal of Learning Disabilities, 45(1), pp. 21–31. https://doi.org/10.1111/bld.12170.
• Clarkson, R. et al. (2009). “What characteristics do service users with intellectual disability value in direct support staff within residential forensic services?”. Journal of Intellectual and Developmental Disability, 34(4), pp. 283–289. https://doi.org/10.3109/13668250903285630.
• Clement, T. y Bigby, C. (2012). “Competencies of front-line managers in supported accommodation: issues for practice and future research”. Journal of Intellectual and Developmental Disability, 37(2), pp. 131–140. https://doi.org/10.3109/13668250.2012.681772.
• Cocks, E. et al. (2014). “The individual supported living (ISL) manual: A planning and review instrument for individual supported living arrangements for adults with intellectual and developmental disabilities”. Journal of Intellectual Disability Research, 58(7), pp. 614–624. https://doi.org/10.1111/jir.12059.
• Cocks, E. et al. (2017). Quality and Outcomes of Individual Supported Living (ISL) Arrangements for Adults with Intellectual and Developmental Disabilities - Final Report. Curtin University of Technology, School of Occupational Therapy and Social Work. https://doi.org/10.4225/06/5a308b1eac044.
• Cocks, E.y Boaden, R. (2011). “A quality framework for personalised residential supports for adults with developmental disabilities”. Journal of Intellectual Disability Research, 55(8), pp. 720–731. https://doi.org/10.1111/j.1365-2788.2010.01296.x.
• Comisión Europea (2010). Estrategia Europea sobre discapacidad 2010-2020: un compromiso renovado para una Europa sin barreras. Recuperado de https://www.mscbs.gob.es/ssi/discapacidad/docs/estrategia_europea_discapacidad_2010_2020.pdf.
• Craig, D. y Bigby, C. (2014). “’She’s been involved in everything as far as I can see’: Supporting the active participation of people with intellectual disability in community groups”. Journal of Intellectual and Developmental Disability, 40(1), pp. 112–25. https://doi.org/10.3109/13668250.2014.977235.
• Crowther, N. (2019). The right to live independently and to be included in the community in European States. ANED Synthesis report. (en línea). Recuperado de https://www.disability-europe.net/.
• Curryer, B. et al. (2015). “Self-determination: Adults with intellectual disability and their family”. Journal of Intellectual and Developmental Disability, 40(4), pp. 394–399.
• Davis, J. et al. (2007). Volunteering for All? Exploring the link between volunteering and social exclusion, London: Institute for Volunteering Research.
• De Jong, L. D. et al. (2019). “Evaluating audio-visual falls prevention messages with community-dwelling older people using a World Café forum approach”. BMC Geriatrics, 19(1), pp. 1–11. https://doi.org/10.1186/s12877-019-1344-3.
• Deguara, M. et al. (2012). “How we like to live when we have the chance”. British Journal of Learning Disabilities, 40(2), pp. 123–127. http://doi.org/10.1111/j.1468-3156.2012.00743.x.
• Díaz Velázquez, E. (2009). “Ciudadanía, identidad y exclusión social de las personas con discapacidad”. Política Y Sociedad, 47, pp. 115–135.
• Dodevska, G. A, y Vassos, M. V. (2013). “What qualities are valued in residential direct care workers from the perspective of people with an intellectual disability and managers of accommodation services?” Journal of Intellectual Disability Research, 57(7), pp. 601–615. https://doi.org/10.1111/j.1365-2788.2012.01565.x.
• Duffy, S. (2012). “The limits of personalisation”. Tizard Learning Disability Review, 17(3), pp.111–123. http://doi.org/10.1108/13595471211240951.
• Duggan, C. y Linehan, C. (2013). “The role of ‘natural supports’ in promoting independent living for people with disabilities; a review of existing literature”. British Journal of Learning Disabilities, 41(3), pp. 199–207. https://doi.org/10.1111/bld.12040.
• Dusseljee, J. C. E. et al. (2011). “Participation in daytime activities among people with mild or moderate intellectual disability”. Journal of Intellectual Disability Research, 55, pp. 4-18. https://doi.org/10.1111/j.1365-2788.2010.01342.x.
• Dyke, P. et al. (2013). “The experiences of mothers of Young adults with an intellectual disability transitioning from secondary school to adult life”. Journal of Intellectual and Developmental Disability, 38(2), pp. 149–62. https://doi.org/10.3109/13668250.2013.789099.
• Emerson, E. y McVilly, K. (2004). “Friendship activities of adults with intellectual disabilities in supported accommodation in Northern England”. Journal of Applied Research in Intellectual Disabilities, 17(3), pp. 191-197. http://dx.doi.org/10.1111/j.1468-3148.2004.00198.x.
• Fisher, K. R.y Purcal, C. (2010). “Effective personalised housing support for people with disabilities – case study analysis”. Australian Journal of Social Issues, 45(4), pp. 527–543.
• Fouché, C., y Light, G. (2011). “An invitation to dialogue: ‘The world café’ in social work”. Qualitative Social Work, 10(1), pp. 28–48. https://doi.org/10.1177/1473325010376016.
• Fullana, J. et al. (2019). “How do people with learning disabilities talk about professionals and organizations? Discourse on support practices for independent living”. Disability & Society, 0(0), pp. 1–19. https://doi.org/10.1080/09687599.2019.1594701.
• García Iriarte, E. et al. (2014). “Identifying the key concerns of Irish persons with intellectual disability”. Journal of Applied Research in Intellectual Disabilities. 27(6), pp. 564–575. https://doi.org/10.1111/jar.12099.
• Gilmore, L. y Cuskelly, M. (2014). “Vulnerability to Loneliness in People with Intellectual Disability: An Explanatory Model”. Journal of Policy and Practice in Intellectual Disabilities, 11(3), pp.192–199. https://doi.org/10.1111/jppi.12089.
• Gómez-Vela, M. et al. (2002). “Evaluacion de la Calidad de Vida de Adultos con Discapacidad Intelectual en Servicios Residenciales Comunitarios”. Revista de Psicología General y Aplicada, 55(4), pp. 591-602.
• González Antón, B. (2010). “Promoción de la Autodeterminación en un entorno de vivienda”, En Investigación e innovación sobre Personas con Discapacidad Intelectual (pp. 353-458). Recuperado de https://sid.usal.es/idocs/F8/FDO23969/Premio_AMPANS_2010_completo.pdf.
• Hall, E. (2010). “Spaces of social inclusion and belonging for people with intellectual disabilities”. Journal of Intellectual Disability Research, 54 (1), pp. 48-57. https://doi.org/10.1111/j.1365-2788.2009.01237.x.
• Hall, E. y Wilton, R. (2011). “Alternative spaces of ‘work’ and inclusion for disabled people”. Disability and Society, 26(7), pp. 867–880. https://doi.org/10.1080/09687599.2011.618742.
• Hatton, C. et al. (2009). “Developing Measures of job performance ofr support staff in housing services for people with intellectual disabilities”. Journal of Intellectual Disability Research, 22, pp. 54–64.
• Hollomotz, A. (2011). Learning difficulties and sexual vulnerability. A social approach. London: Jessica Kingsley Publishers.
• Houston, S. (2010). “Beyond Homo economicus: Recognition, self-realization and social work”. British Journal of Social Work, 40(3), pp. 841–857. https://doi.org/10.1093/bjsw/bcn132.
• Isaacson, N. C. et al. (2014). “Launching: The experiences of two young adults with intellectual disability and their families in transition to individual supported living”. Journal of Intellectual and Developmental Disability, 39(3), pp. 270–281. https://doi.org/10.3109/13668250.2014.929643.
• Johnson, S. M. et al. (2018). “Building Community Support Using a Modified World Café Method for Pregnant and Parenting Teenagers in Forsyth County, North Carolina”. Journal of Pediatric and Adolescent Gynecology, 31(6), pp. 614–619. https://doi.org/10.1016/j.jpag.2018.06.009.
• Leal, L. (2008). Un enfoque de la discapacidad centrado en la família. Madrid: FEAPS. (en línea). Recuperado de http://www.plenainclusion.org/sites/default/files/bp-enfoque-familia.pdf.
• Luque, D.J. y Luque-Rojas, M. J. (2012). “Aspectos psicoeducativos en las relaciones de las TIC y la discapacidad intelectual”. Revista Intercontinental de Psicología y Educación, 14(1), pp. 27–48.
• MacFarlane, A. et al. (2017). “Participatory methods for research prioritization in primary care: An analysis of the World Café approach in Ireland and the USA”. Family Practice, 34(3), pp. 278–284. https://doi.org/10.1093/fampra/cmw104.
• Mansell, J., y Beadle-Brown, J. (2011). “Desinstitucionalización y vida en la comunidad: Declaración del Grupo de Investigación sobre Política y Práctica Comparativas, de la Asociación Internacional para el Estudio Científico de las Discapacidades Intelectuales (IASSID)”. Zerbitzuan. Revista de Servicios Sociales, 49, pp. 137–146. https://doi.org/10.5569/1134-7147.49.11.
• Marlow, E. y Walker, N. (2015). “Does supported living work for people with severe intellectual disabilities?”. Advances in Mental Health and Intellectual Disabilities, 9(6), pp. 338–351. https://doi.org/10.1108/AMHID-02-2015-0006.
• McConkey, R. y Collins, S. (2010). “The role of support staff in promoting the social inclusion of persons with an intellectual disability”. Journal of Intellectual Disability Research, 54(8), pp. 691–700. https://doi.org/10.1111/j.1365-2788.2010.01295.x.
• McConkey, R. et al. (2016). “Relocating people with intellectual disability to new accommodation and support settings: Contrasts between personalized arrangements and group home placements”. Journal of Intellectual Disabilities, 20(2), pp. 109–120. https://doi.org/10.1177/1744629515624639.
• McPherson, L. et al. (2017). “Enhancing Self-Determination in Health: Results of an RCT of the Ask Project, a School-Based Intervention for Adolescents with Intellectual Disability”. Journal of Applied Research in Intellectual Disabilities, 30(2), pp. 360–370. https://doi.org/10.1111/jar.12247.
• McVilly, K. R. et al. (2006). “‘I Get by with a little help from my friends’: Adults with intellectual disability discuss loneliness”. Journal of Applied Research in Intellectual Disabilities, 19(2), pp. 191–203. https://doi.org/10.1111/j.1468-3148.2005.00261.x.
• Miller, E. et al. (2008). “Outcomes Important to People with Intellectual Disabilities”. Journal of Policy and Practice in Intellectual Disabilities, 5(3), pp. 150–158. http://doi.org/10.1111/j.1741-1130.2008.00167.x.
• Morris, J. (2004). “Independent living and community care: A disempowering framework”. Disability and Society, 19(5), pp. 427–442. https://doi.org/10.1080/0968759042000235280.
• Morris, J. (1993). Independent lives? Community Care and Disabled People. Basingstoke: The McMillan Press LTD.
• Naciones Unidas (2006). United Nations Convention on the Rights of Persons with Disabilities. (en línea). Recuperado de .
• Naciones Unidas, Comité sobre los Derechos de las Personas con Discapacidad (2017). Observación general núm. 5 (2017) sobre el derecho a vivir de forma independiente y a ser incluido en la comunidad (en línea). Recuperado de https://bit.ly/2BE3bdh.
• Navallas, M. y Verdugo, M. A. (2009). “Integrando calidad de vida y calidad de gestión en un servicio de viviendas y residencia para personas con discapacidad intelectual”. Siglo Cero: Revista Española sobre Discapacidad Intelectual. 40 (2), pp. 5-22.
• Navas, P. et al. (2017). “Derechos y calidad de vida en personas con discapacidad intelectual y mayores necesidades de apoyo”. Siglo Cero, 48(4), pp. 7–66.
• Overmars-Marx, T. et al. (2013). “Advancing social inclusion in the neighbourhood for people with an intellectual disability: An exploration of the literature”. Disability and Society, 29(2), pp. 255–274. https://doi.org/10.1080/09687599.2013.800469.
• Pallisera, M. et al. (2016). “Changes and challenges in the transition to adulthood: views and experiences of young people with learning disabilities and their families”. European Journal of Special Needs Education, 31(3), pp. 391-406. https://doi.org/10.1080/08856257.2016.1163014.
• Pallisera, M. et al. (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), pp. 7–24.
• Pallisera, M. et al. (2018). “The role of professionals in promoting independent living: Perspectives of self-advocates and front-line managers”. Journal of Applied Research in Intellectual Disabilities, (April), 31(6), pp. 1103-1112. https://doi.org/10.1111/jar.12470.
• Parsons, L. et al. (2009). A Review of Best Practice in Individual Needs Planning (en línea). Recuperado de https://pdfs.semanticscholar.org/5fd9/2cf19b6d2d9aeca344752ebebe388cb71f40.pdf.
• Pegalajar, M.C. y Colmenero, M. J. (2014). “Estudio piloto sobre el uso de las redes sociales en jóvenes con discapacidad intelectual”. Edutec. Revista Electrónica de Tecnología educativa, 48, pp. 1–14.
• Petner-Arrey, J. y Copeland, S. R. (2014). “‘You have to care.’ Perceptions of promoting autonomy in support settings for adults with intellectual disability”. British Journal of Learning Disabilities, 43(1), pp. 38–48. https://doi.org/10.1111/bld.12084.
• Plena Inclusión (2018). Asistencia Personal Una herramienta clave para el ejercicio del derecho a la vida independiente de las personas con discapacidad intelectual o del desarrollo. Madrid: Ministerio de Sanidad, Servicios Sociales e Igualdad.
• Power, A. y Bartlett, R. (2018). “Self-building safe havens in a post-service landscape: how adults with learning disabilities are reclaiming the welcoming communities agenda”. Social and Cultural Geography, 19(3), pp. 336–356. https://doi.org/10.1080/14649365.2015.1031686.
• Rojas, S. (2004). Autodeterminación y calidad de vida en personas discapacitadas. Experiencias desde un hogar de grupo (tesis doctoral). Universidad Autónoma de Barcelona.
• Rojas, S. (2008). “La ‘voz’ de las personas con discapacidad intelectual en investigación educativa. Repensando las prácticas de investigación”. Revista de Educación, 345, pp. 377-398.
• Rojas, S. et al. (2015). “Necesidades afectivo-sexuales en personas con discapacidad intelectual. Claves para construir propuestas formativas desde la experiencia subjetiva”. Revista Española de Discapacidad, 3(2), pp. 41–54. https://doi.org/10.5569/2340-5104.03.02.03.
• Ruf, J. (2006). “El servicio de apoyo en el propio hogar, perspectivas iniciales de una nueva modalidad de servicio de apoyo a la persona”. Revista de Educación Social, 5. Recuperado de http://www.eduso.net/res/?b=8ic=68in=192.
• Roeden, J. M. et al. (2011). “The Views of Clients with Mild Intellectual Disabilities Regarding their Working Relationships with Caregivers”. Journal of Applied Research in Intellectual Disabilities, 24(5), pp. 398–406. https://doi.org/10.1111/j.1468-3148.2010.00622.x.
• Sanderson, H. (2001). ‘It’s my meeting’: Finding ways to involve people with high support needs in person centred planning (en línea). Recuperado de https://bit.ly/3gWVy1z.
• Schalock, R. L. et al. (2008). Enhancing Personal Outcomes: Organizational Strategies, Guidelines, and Examples. Journal of Policy and Practice in Intellectual Disabilities, 5(4), pp. 276–285. https://doi.org/10.1111/j.1741-1130.2007.00135.x.
• Schalock, R. L. y Verdugo, M.A. (2007). “El concepto de calidad de vida en los servicios y apoyos para personas con discapacidad intelectual”. Siglo Cero, 38(224), pp. 21–36. http://sid.usal.es/idocs/F8/ART10366/articulos2.pdf.
• Schalock, R. L. et al. (2018). “Understanding organization transformation in evaluation and program planning”. Evaluation and Program Planning, 67, pp. 53–60. https://doi.org/10.1016/j.evalprogplan.2017.11.003.
• Schieffer, A. et al. (2004). “The World Café: Part One. World Business Academy”. Transformation, 18(8), pp. 1-7
• Seale, J. (2014). “The role of supporters in facilitating the use of technologies by adolescents and adults with learning disabilities: A place for positive risk-taking?”. European Journal of Special Needs Education, 29(2), pp. 220–236. https://doi.org/10.1080/08856257.2014.906980.
• Sheerin, F. et al. (2015). “An evaluation of a community living initiative in Ireland”. Journal of Intellectual Disabilities, 19(3), pp. 266–281. https://doi.org/10.1177/1744629515573679.
• Shelden, D. L. y Storey, K. (2014). “Social Life”. En K. Storey y D. Hunter (Eds.), The Road Ahead (pp. 233–254), Clifton: IOS Press.
• Simplican, S. C. et al. (2015). “Defining social inclusion of people with intellectual and developmental disabilities: An ecological model of social networks and community participation”. Research in Developmental Disabilities, 38, pp. 18–29. https://doi.org/10.1016/j.ridd.2014.10.008.
• Sims, D., y Cabrita Gulyurtlu, S. S. (2014). “A scoping review of personalisation in the UK: approaches to social work and people with learning disabilities”. Health & Social Care in the Community, 22(1), pp. 13–21. https://doi.org/10.1111/hsc.12048.
• Small, N. et al. (2013). “An ecological approach to seeking and utilising the views of young people with intellectual disabilities in transition planning”. Journal of Intellectual Disabilities, 17(4), pp. 283–300. https://doi.org/10.1177/1744629513500779.
• Spicker, P. (2013). “Personalisation falls short”. British Journal of Social Work, 43(7), pp. 1259–1275. https://doi.org/10.1093/bjsw/bcs063.
• Sullivan, F. et al. (2016). “The Close Relationships of People with Intellectual Disabilities: A Qualitative Study”. Journal of Applied Research in Intellectual Disabilities,29 (2), pp. 172-184. https://doi.org/10.1111/jar.12168.
• Tan, S. y Brown, J. (2005). “The World Café in Singapore: creating a learning culture through dialogue”. The Journal of Applied Behavioral Science, 41, pp. 83–90.
• Thurman, S. et al. (2005). “Without words - meaningful information for people with high individual communication needs”. British Journal of Learning Disabilities, 33(2), pp. 83–89. https://doi.org/10.1111/j.1468-3156.2005.00342.x.
• Van Asselt-Goverts, A. E. et al. (2014). “Experiences of support staff with expanding and strenghthening social networks of people with mild intellectual disabilities”. Journal of Community and Applied Social Psychology, 24, pp. 111–124. https://onlinelibrary.wiley.com/doi/abs/10.1002/casp.2156.
• Van Wyngaarden, A. et al. (2018). “Assessing the value of action research: Using a world café to explore the professional journey of nurse educators”. South African Journal of Higher Education, 32(6), pp. 519–531. https://doi.org/10.20853/32-6-2974.
• Verdonschot, M. M. L. et al. (2009). “Community participation of people with an intellectual disability: a review of empirical findings”. Journal of Intellectual Disability Research, 53(4), pp. 303–318. https://doi.org/10.1111/j.1365-2788.2008.01144.x.
• Verdugo, M. A. et al. (2014). Escala San Martín: Evaluación de la calidad de vida de personas con discapacidades significativas, Santander: Fundación Obra San Martín, INICO.
• Verdugo, M. A. et al. (2013). Escala INICO-FEAPS. Evaluación integral de la Calidad de Vida de personas con discapacidad intelectual o del desarrollo, Salamanca: INICO.
• Verdugo, M. A. et al. (2009). Escala de Calidad de vida – GENCAT, Barcelona: ICASS, Generalitat de Catalunya.
• Verdugo, M.A. y Jenaro, C. (2019). Country report on Living independently and being included in the community-Spain (en línea). Recuperado de https://www.disability-europe.net/country/spain.
• Wiesel, I. y Bigby, C. (2016). “Mainstream, Inclusionary, and Convivial Places: Locating Encounters Between People with and Without Intellectual Disabilities”. Geographical Review, 106(2), pp. 201–214. https://doi.org/10.1111/j.1931-0846.2015.12153.x.
• Wiesel, I. et al. (2013). “’Do You Think I”m Stupid?’: Urban Encounters between People with and without Intellectual Disability”. Urban Studies, 50(12): 2391–2406. https://doi.org/10.1177/0042098012474521.
• Wullink, M. et al. (2009). “Doctor-patient communication with people with intellectual disability - A qualitative study”. BMC Family Practice, 10, pp. 1–11. https://doi.org/10.1186/1471-2296-10-82.