Strategies and Challenges in Developing Community Support Structures for People with Intellectual Disabilities: A 25-Year Organizational Analysis
Abstract Recent research highlights the importance of services to foster social inclusion. However, public funding continues to prioritize welfarist care. This presents a dilemma for organizations: maintain segregated services to obtain public funds or strive to develop community inclusion strategies with their own resources. The purpose of this study is to evaluate an organization with 25 years of experience providing services for people with disabilities in the community, in order to identify key aspects of its history that allow us to understand the challenges and obstacles faced by organizations that intervene through the creation of support structures in the community. To this end, a mixed research design was employed, using collection techniques such as focus groups, likert-type evaluation and documentary analysis. The results reveal barriers, such as instability in public funding or legislative changes that require constant adaptations, among others. In response, the organization develops strategies such as diversifying funding sources, strategic management planning, developing organizational resilience and fostering continuous transformation. These findings underscore the need to connect public policy with evidence-based professional practices, and to advocate for legislative changes that support the inclusion of people with disabilities in their communities.
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AMADO, A. N., STANCLIFFE, R. J., MCCARRON, M. y MCCALLION, P. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and Developmental Disabilities, 51(5), 360-375. https://doi.org/10.1352/1934-9556-51.5.360
BRADLEY, V. J. (1994). Evolution of a new service paradigm. En V. J. BRADLEY, J. W. ASHBAUGHY y B. C. BLANEY (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 11-32). Baul H. Brookes.
CRESWELL, J. W., FETTERS, M. D. e IVANKOVA, N. V. (2004). Designing a mixed methods study in primary care. The Annals of Family Medicine, 2(1), 7-12. https://doi.org/10.1370/afm.104
FORRESTERJONES, R., CARPENTER, J., COOLENSCHRIJNER, P., CAMBRIDGE, P., TATE, A., BEECHAM, J., HALLAM, A., KNAPP, M. y WOOFF, D. (2006). The social networks of people with intellectual disability living in the community 12 years after resettlement from longstay hospitals. Journal of Applied Research in Intellectual Disabilities, 19(4), 285-295. https://doi.org/10.1111/j.1468-3148.2006.00263.x
FRA - EUROPEAN UNION AGENCY FOR FUNDAMENTAL RIGHTS (2012). Choice and control: The right to independent living. Experiences of persons with intellectual disabilities. Publications Office of the European Unnion. EU FRA.
GONZÁLEZ, B., ORTEGA, E., MARTÍNEZ, B. y TAMARIT, J. (2014). Hacia el logro de una vida deseada: la experiencia de la Planificación Centrada en la Persona con personas con discapacidad intelectual o del desarrollo en España. En P. RODRÍGUEZ y A. VILÁ (Eds.), Modelo de atención integral y centrada en la persona. Teoría y práctica en ámbitos del envejecimiento y la discapacidad (pp. 264-279). Tecnos.
HICKEY, R. (2012). End-users, public services, and industrial relations: The restructuring of social services in Ontario. Industrial Relations, 67(4), 590-611.
INCLUSION INTERNATIONAL (2012). Inclusive Communities = Stronger Communities. Global report on article 19: The right to live and be included in the community. https://s38312.pcdn.co/wp-content/uploads/Global-Report-on-Article-19-Living-in-the-Community.pdf
LUCKASSON, R., COULTER, D. L., POLLOWAY, E. A., REESE, S., SCHALOCK, R. L., SNELL, M., SPITALNICK, D. M. y STARK, J. A. (1992). Mental retardation: Definition, classification, and systems of supports (9.a ed.). American Association on Mental Retardation.
MADSEN, L. S., JAKUBEC, S. L., V. NIELSEN, C. y HANDBERG, C. (2022). The potential of outdoor contexts within community-based rehabilitation to empower people with disabilities in their rehabilitation. Disability and Rehabilitation, 44(15), 3992-4003. https://doi.org/10.1080/09638288.2021.1897887
MARTÍNEZ, M. A. (2015). Claves estratégicas de la gestión para el logro de la visión organizacional en calidad de vida. En IX Jornadas Científicas Internacionales de Investigación sobre Personas con Discapacidad.
MILES, M. B. y HUBERMAN, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2.a ed.). Sage Publications Inc.
MORGAN, S. (2010). Opportunities and risks of personalisation. Nursing Management, 17(2), 14-17. https://doi.org/10.7748/nm2010.05.17.2.14.c7723
NACIONES UNIDAS (2022). Directrices sobre la desinstitucionalización, incluso en situaciones de emergencia. https://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d/PPRiCAqhKb7yhsrUSo2TlYtHaYAWJ%2Byrd8Skkty8%2BxJZ8vIbGxhck1kHBIKay8anA0Rxj78wGfLbNT0y/VBSKwd%2BhB4FMoo5JyTg%3D
PALACIOS, S. A. (2008). El modelo social de discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Cinca.
PEREIRA, Z. (2011). Los diseños de método mixto en la investigación en educación: una experiencia concreta. Revista Electrónica Educare, 15(1), 15-29. https://doi.org/10.15359/ree.15-1.2
PETROUTSOU, A., HASSIOTIS, A. y AFIA, A. (2018). Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions. Journal of Applied Research in Intellectual Disabilities, 31(5), 643-658. https://doi.org/10.1111/jar.12432
PUYALTÓ, C. y PALLISERA, M. (2020). Living independently in Spain: Barriers and supports from the views of people with intellectual disabilities. International Journal of Disability, Development and Education, 67(3), 306-319. https://doi.org/10.1080/1034912X.2018.1546833
SCHALOCK, R. L. (2018). Seis ideas que están cambiando el campo de las discapacidades intelectuales y del desarrollo en todo el mundo. Siglo Cero, 49(1), 7. https://doi.org/10.14201/scero2018491719
SCHALOCK, R. L., BORTHWICK-DUFFY, S. A., BRADLEY, V. J., BUNTINX, W. H. E., COULTER, D., CRAIG, E., GOMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R., REEVE, A., SHOGREN, K. A., SNELL, M. E., SPREAT S., TASSÉ, M. J., THOMPSON, J. R., VERDUGO, M. Á., WEHMEYER, M. L. y YEAGER, M. H. (2010). Intellectual disability. Definition, classification, and systems of supports (11.a ed.). American Association on Intellectual and Developmental Disabilities.
SCHALOCK, R. L., GARDNER, J. F. y BRADLEY, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities. Applications across individuals, organizations, communities, and systems. American Association on Intellectual and Developmental Disabilities.
SCHALOCK, R. L., LUCKASSON, R. y SHOGREN, K. A. (2020). Going beyond environment to context: Leveraging the power of context to produce change. International Journal of Environmental Research and Public Health, 17(6). https://doi.org/10.3390/ijerph17061885
SCHALOCK, R. L., LUCKASSON, R. y TASSÉ, M. J. (2021). Defining, diagnosing, classifying, and planning supports for people with intellectual disability: An emerging consensus. Siglo Cero, 52(3), 29-36. https://doi.org/10.14201/scero20215232936
SCHALOCK, R. L. y VERDUGO, M. Á. (2003). El cambio en las organizaciones de discapacidad. Estrategias para superar sus retos y hacerlo realidad. Guía de liderazgo. Alianza.
SCHALOCK, R. L. y 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. L., VERDUGO, M. Á. y BRADDOCK , D. L.(2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
SCHALOCK, R. L., VERDUGO, M. Á. y GOMEZ, L. E. (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
SHOGREN, K. A. (2013). Considering context: An integrative concept for promoting outcomes in the intellectual disability field. Intellectual and Developmental Disabilities, 51(2), 132-137. https://doi.org/10.1352/1934-9556-51.2.132
SHOGREN, K. A., LUCKASSON, R. y SCHALOCK, R. L. (2014). The definition of “Context” and its application in the field of intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 109-116. https://doi.org/10.1111/jppi.12077
SIMARRO-VÁZQUEZ, L. (2023). ¿Qué es realmente eso a lo que llamamos contexto? Hacia un modelo de análisis sistemático del contexto. Siglo Cero, 54(3), 53-72. https://doi.org/10.14201/scero.31154
STANCLIFFE, R. J., LARSON, S., AUERBACH, K., ENGLER, J., TAUB, S. y LAKIN , K. C.(2010). Individuals with intellectual disabilities and augmentative and alternative communication: Analysis of survey data on uptake of Aided AAC, and loneliness experiences. Augmentative and Alternative Communication, 26(2), 87-96. https://doi.org/10.3109/07434618.2010.481564
TAMARIT, J. (2006). Calidad FEAPS: un modelo para la calidad de vida, desde la ética y la calidad del servicio. En M. Á. Verdugo y F. B. Jordán de Urríes (Eds.), Rompiendo inercias, claves para avanzar (pp. 163-178). Amarú.
TAMARIT, J. (2015). La transformación de los servicios hacia la calidad de vida. Una iniciativa de innovación social de FEAPS. Siglo Cero, 46(3), 47-71. https://doi.org/10.14201/scero20154634771
THOMPSON, J. R., BRADLEY, V. J., BUNTINX, W. H. E., SCHALOCK, R. L., SHOGREN, K. A., SNELL, M. E., WEHMEYER, M. L., BORTHWICK-DUFFY, S., COULTER, D. L., CRAIG, E., GOMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R. A., REEVE, A., SPREAT, S., TASSÉ, M. J., VERDUGO, M. Á. y YEAGER, M. H. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47(2), 135-146. https://doi.org/10.1352/1934-9556-47.2.135
THOMPSON, J. R., SCHALOCK, R. L., AGOSTA, J., TENINTY, L. y FORTUNE , J.(2014). How the supports paradigm is transforming the developmental disabilities service system. Inclusion, 2(2), 86-99. https://doi.org/10.1352/2326-6988-2.2.86
UNITED NATIONS (2006). Convention on the Rights of Persons with Disability. https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd
VERDUGO, M. Á. (1994). El cambio de paradigma en la concepción del retraso mental: la nueva definición de la AAMR. Siglo Cero, 25(3), 5-42.
VERDUGO, M. Á. (1999). Avances conceptuales actuales y del futuro inmediato: revisión de la definición de 1992 de la AAMR. Siglo Cero, 30(5), 1-10.
VERDUGO, M. Á., NAVAS, P., GÓMEZ, L. E. y SCHALOCK, R. L. (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
WALKER, P. (2012). Strategies for organizational change from group homes to individualized supports. Intellectual and Developmental Disabilities, 50(5), 403-414. https://doi.org/10.1352/1934-9556-50.5.403
WORLD HEALTH ORGANIZATION (2001). International Classification of Functioning, Disability and Health (ICF). International Classification, 1149.
BRADLEY, V. J. (1994). Evolution of a new service paradigm. En V. J. BRADLEY, J. W. ASHBAUGHY y B. C. BLANEY (Eds.), Creating individual supports for people with developmental disabilities: A mandate for change at many levels (pp. 11-32). Baul H. Brookes.
CRESWELL, J. W., FETTERS, M. D. e IVANKOVA, N. V. (2004). Designing a mixed methods study in primary care. The Annals of Family Medicine, 2(1), 7-12. https://doi.org/10.1370/afm.104
FORRESTERJONES, R., CARPENTER, J., COOLENSCHRIJNER, P., CAMBRIDGE, P., TATE, A., BEECHAM, J., HALLAM, A., KNAPP, M. y WOOFF, D. (2006). The social networks of people with intellectual disability living in the community 12 years after resettlement from longstay hospitals. Journal of Applied Research in Intellectual Disabilities, 19(4), 285-295. https://doi.org/10.1111/j.1468-3148.2006.00263.x
FRA - EUROPEAN UNION AGENCY FOR FUNDAMENTAL RIGHTS (2012). Choice and control: The right to independent living. Experiences of persons with intellectual disabilities. Publications Office of the European Unnion. EU FRA.
GONZÁLEZ, B., ORTEGA, E., MARTÍNEZ, B. y TAMARIT, J. (2014). Hacia el logro de una vida deseada: la experiencia de la Planificación Centrada en la Persona con personas con discapacidad intelectual o del desarrollo en España. En P. RODRÍGUEZ y A. VILÁ (Eds.), Modelo de atención integral y centrada en la persona. Teoría y práctica en ámbitos del envejecimiento y la discapacidad (pp. 264-279). Tecnos.
HICKEY, R. (2012). End-users, public services, and industrial relations: The restructuring of social services in Ontario. Industrial Relations, 67(4), 590-611.
INCLUSION INTERNATIONAL (2012). Inclusive Communities = Stronger Communities. Global report on article 19: The right to live and be included in the community. https://s38312.pcdn.co/wp-content/uploads/Global-Report-on-Article-19-Living-in-the-Community.pdf
LUCKASSON, R., COULTER, D. L., POLLOWAY, E. A., REESE, S., SCHALOCK, R. L., SNELL, M., SPITALNICK, D. M. y STARK, J. A. (1992). Mental retardation: Definition, classification, and systems of supports (9.a ed.). American Association on Mental Retardation.
MADSEN, L. S., JAKUBEC, S. L., V. NIELSEN, C. y HANDBERG, C. (2022). The potential of outdoor contexts within community-based rehabilitation to empower people with disabilities in their rehabilitation. Disability and Rehabilitation, 44(15), 3992-4003. https://doi.org/10.1080/09638288.2021.1897887
MARTÍNEZ, M. A. (2015). Claves estratégicas de la gestión para el logro de la visión organizacional en calidad de vida. En IX Jornadas Científicas Internacionales de Investigación sobre Personas con Discapacidad.
MILES, M. B. y HUBERMAN, A. M. (1994). Qualitative data analysis: An expanded sourcebook (2.a ed.). Sage Publications Inc.
MORGAN, S. (2010). Opportunities and risks of personalisation. Nursing Management, 17(2), 14-17. https://doi.org/10.7748/nm2010.05.17.2.14.c7723
NACIONES UNIDAS (2022). Directrices sobre la desinstitucionalización, incluso en situaciones de emergencia. https://docstore.ohchr.org/SelfServices/FilesHandler.ashx?enc=6QkG1d/PPRiCAqhKb7yhsrUSo2TlYtHaYAWJ%2Byrd8Skkty8%2BxJZ8vIbGxhck1kHBIKay8anA0Rxj78wGfLbNT0y/VBSKwd%2BhB4FMoo5JyTg%3D
PALACIOS, S. A. (2008). El modelo social de discapacidad: orígenes, caracterización y plasmación en la Convención Internacional sobre los Derechos de las Personas con Discapacidad. Cinca.
PEREIRA, Z. (2011). Los diseños de método mixto en la investigación en educación: una experiencia concreta. Revista Electrónica Educare, 15(1), 15-29. https://doi.org/10.15359/ree.15-1.2
PETROUTSOU, A., HASSIOTIS, A. y AFIA, A. (2018). Loneliness in people with intellectual and developmental disorders across the lifespan: A systematic review of prevalence and interventions. Journal of Applied Research in Intellectual Disabilities, 31(5), 643-658. https://doi.org/10.1111/jar.12432
PUYALTÓ, C. y PALLISERA, M. (2020). Living independently in Spain: Barriers and supports from the views of people with intellectual disabilities. International Journal of Disability, Development and Education, 67(3), 306-319. https://doi.org/10.1080/1034912X.2018.1546833
SCHALOCK, R. L. (2018). Seis ideas que están cambiando el campo de las discapacidades intelectuales y del desarrollo en todo el mundo. Siglo Cero, 49(1), 7. https://doi.org/10.14201/scero2018491719
SCHALOCK, R. L., BORTHWICK-DUFFY, S. A., BRADLEY, V. J., BUNTINX, W. H. E., COULTER, D., CRAIG, E., GOMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R., REEVE, A., SHOGREN, K. A., SNELL, M. E., SPREAT S., TASSÉ, M. J., THOMPSON, J. R., VERDUGO, M. Á., WEHMEYER, M. L. y YEAGER, M. H. (2010). Intellectual disability. Definition, classification, and systems of supports (11.a ed.). American Association on Intellectual and Developmental Disabilities.
SCHALOCK, R. L., GARDNER, J. F. y BRADLEY, V. J. (2007). Quality of life for people with intellectual and other developmental disabilities. Applications across individuals, organizations, communities, and systems. American Association on Intellectual and Developmental Disabilities.
SCHALOCK, R. L., LUCKASSON, R. y SHOGREN, K. A. (2020). Going beyond environment to context: Leveraging the power of context to produce change. International Journal of Environmental Research and Public Health, 17(6). https://doi.org/10.3390/ijerph17061885
SCHALOCK, R. L., LUCKASSON, R. y TASSÉ, M. J. (2021). Defining, diagnosing, classifying, and planning supports for people with intellectual disability: An emerging consensus. Siglo Cero, 52(3), 29-36. https://doi.org/10.14201/scero20215232936
SCHALOCK, R. L. y VERDUGO, M. Á. (2003). El cambio en las organizaciones de discapacidad. Estrategias para superar sus retos y hacerlo realidad. Guía de liderazgo. Alianza.
SCHALOCK, R. L. y 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. L., VERDUGO, M. Á. y BRADDOCK , D. L.(2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
SCHALOCK, R. L., VERDUGO, M. Á. y GOMEZ, L. E. (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
SHOGREN, K. A. (2013). Considering context: An integrative concept for promoting outcomes in the intellectual disability field. Intellectual and Developmental Disabilities, 51(2), 132-137. https://doi.org/10.1352/1934-9556-51.2.132
SHOGREN, K. A., LUCKASSON, R. y SCHALOCK, R. L. (2014). The definition of “Context” and its application in the field of intellectual disability. Journal of Policy and Practice in Intellectual Disabilities, 11(2), 109-116. https://doi.org/10.1111/jppi.12077
SIMARRO-VÁZQUEZ, L. (2023). ¿Qué es realmente eso a lo que llamamos contexto? Hacia un modelo de análisis sistemático del contexto. Siglo Cero, 54(3), 53-72. https://doi.org/10.14201/scero.31154
STANCLIFFE, R. J., LARSON, S., AUERBACH, K., ENGLER, J., TAUB, S. y LAKIN , K. C.(2010). Individuals with intellectual disabilities and augmentative and alternative communication: Analysis of survey data on uptake of Aided AAC, and loneliness experiences. Augmentative and Alternative Communication, 26(2), 87-96. https://doi.org/10.3109/07434618.2010.481564
TAMARIT, J. (2006). Calidad FEAPS: un modelo para la calidad de vida, desde la ética y la calidad del servicio. En M. Á. Verdugo y F. B. Jordán de Urríes (Eds.), Rompiendo inercias, claves para avanzar (pp. 163-178). Amarú.
TAMARIT, J. (2015). La transformación de los servicios hacia la calidad de vida. Una iniciativa de innovación social de FEAPS. Siglo Cero, 46(3), 47-71. https://doi.org/10.14201/scero20154634771
THOMPSON, J. R., BRADLEY, V. J., BUNTINX, W. H. E., SCHALOCK, R. L., SHOGREN, K. A., SNELL, M. E., WEHMEYER, M. L., BORTHWICK-DUFFY, S., COULTER, D. L., CRAIG, E., GOMEZ, S. C., LACHAPELLE, Y., LUCKASSON, R. A., REEVE, A., SPREAT, S., TASSÉ, M. J., VERDUGO, M. Á. y YEAGER, M. H. (2009). Conceptualizing supports and the support needs of people with intellectual disability. Intellectual and Developmental Disabilities, 47(2), 135-146. https://doi.org/10.1352/1934-9556-47.2.135
THOMPSON, J. R., SCHALOCK, R. L., AGOSTA, J., TENINTY, L. y FORTUNE , J.(2014). How the supports paradigm is transforming the developmental disabilities service system. Inclusion, 2(2), 86-99. https://doi.org/10.1352/2326-6988-2.2.86
UNITED NATIONS (2006). Convention on the Rights of Persons with Disability. https://social.desa.un.org/issues/disability/crpd/convention-on-the-rights-of-persons-with-disabilities-crpd
VERDUGO, M. Á. (1994). El cambio de paradigma en la concepción del retraso mental: la nueva definición de la AAMR. Siglo Cero, 25(3), 5-42.
VERDUGO, M. Á. (1999). Avances conceptuales actuales y del futuro inmediato: revisión de la definición de 1992 de la AAMR. Siglo Cero, 30(5), 1-10.
VERDUGO, M. Á., NAVAS, P., GÓMEZ, L. E. y SCHALOCK, R. L. (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
WALKER, P. (2012). Strategies for organizational change from group homes to individualized supports. Intellectual and Developmental Disabilities, 50(5), 403-414. https://doi.org/10.1352/1934-9556-50.5.403
WORLD HEALTH ORGANIZATION (2001). International Classification of Functioning, Disability and Health (ICF). International Classification, 1149.
Sánchez Herráez, B., Jordán De Urríes Vega, B., Sánchez Gómez, M. C., & Verdugo Alonso, M. Ángel. (2025). Strategies and Challenges in Developing Community Support Structures for People with Intellectual Disabilities: A 25-Year Organizational Analysis. Siglo Cero, 56(3), 13–33. https://doi.org/10.14201/scero.32071
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