Impact of COVID-19 on people with intellectual and developmental disabilities, their families, support professionals and organizations
Abstract Our world has been transformed by the coronavirus and the infection it causes. The severity of the disease and the consequences of the state of alarm do not affect everyone equally, being people with intellectual and developmental disabilities one of the most vulnerable groups. INICO and Plena inclusion conducted a study to analyze the impact of COVID-19 and lockdown on people with intellectual and developmental disabilities, their families, direct support professionals, and disability organizations. To address this goal, four online surveys were developed and completed by almost 1.500 participants from all the Spanish regions. The results indicate that, despite the efforts made by the third sector, the health crisis has unveiled the deficiencies of our support system, which leads us to reflect on three fundamental aspects: the degree to which the development and maintenance of natural support networks is carried out when the person lives in a specific environment; the extent to which the support offered from the third sector reaches individuals outside the disability services network; and the role of our educational system in guaranteeing the right to education for people with special support needs.
- Referencias
- Cómo citar
- Del mismo autor
- Métricas
AKOGLU, H. (2018). User’s guide to correlation coefficients. Turkish Journal of Emergency Medicine, 18(3), 91-93. https://doi.org/10.1016/j.tjem.2018.08.001
AMOR, A. M., NAVAS, P., VERDUGO, M. Á. y CRESPO, M. (2021). Perceptions of people with intellectual and developmental disabilities about COVID-19 in Spain: a cross-sectional study. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12821
BARALT, M. (2011). Coding Qualitative Data. En A. MACKEY y S. M. GASS (Eds.), Research methods in second language acquisition: a practical guide (pp. 222-244). John Wiley & Sons.
BEIGEL, J. H., TOMASHEK, K. M., DODD, L. E., MEHTA, A. K., ZINGMAN, B. S., KALIL, A. C., … y LANE, H. C. (2020). Remdesivir for the treatment of Covid-19 – Preliminary report. New England Journal of Medicine, 383(19), 1813-1826. https://doi.org/10.1056/NEJMoa2007764
COURTENAY, K. (2020). COVID-19: challenges for people with intellectual disability. The BMJ, 369, m1609. https://doi.org/10.1136/bmj.m1609
COURTENAY, K. y PERERA, B. (2020). COVID-19 and people with intellectual disability: impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231-236. https://doi.org/10.1017/ipm.2020.45
ECHEITA, G. (2010). Alejandra L. S. o el dilema de la inclusión educativa en España. En P. ARNAIZ, M.ª HURTADO y F. J. SOTO (Coords.), 25 años de integración escolar en España. Tecnologías e inclusión en el ámbito educativo, laboral y comunitario (pp. 1-13). Consejería de Edu-cación, Formación y Empleo.
ESENTÜRK, O. K. (2020). Parents’ perceptions on physical activity for their children with autism spectrum disorders during the novel corona-virus outbreak. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1769333
EUROPEAN ASSOCIATION OF SERVICE PROVIDERS FOR PERSONS WITH DISABILITIES. (2020). The impact of COVID-19 on disability services in Europe. Recu-perado de https://www.easpd.eu/sites/default/files/sites/default/files/Publications2020/impact_of_covid-19_on_disability_services_in_europe_a_first_snapshot.pdf
FOLEGATTI, P. M., EWER, K. J., ALEY, K. P., ANGUS, B., BECKER, S., BELIJ-RAMMERSTORFER, S. B., … y POLLARD, A. J. (2020). Safety and immunogenicity of the ChAdOx1 nCoV-19 vaccine against SARS-CoV-2: a preliminary report of a phase 1/2, single-blind, randomized controlled trial. Lancet, 396, 467-478. https://doi.org/10.1016/S0140-6736(20)31604-4
GONZÁLEZ, J. A. (2019). Intensidad de apoyos, salud mental, empleo y su relación con resultados de calidad de vida. Siglo Cero, 50(2), 73-88. http://dx.doi.org/10.14201/scero20195027388
HUGHES, N. y ANDERSON, G. (2020). The experience of the COVID-19 pandemic in a UK learning disability service: lost in a sea of ever changing variables - a perspective. national Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1773711
INCLUSION EUROPE. (2020). Neglect and discrimination. Multiplied How Covid-19 affected the rights of people with intellectual disabilities and their families. Recuperado de http://www.inclusion-europe.eu/covid-report-2020/
JESTE, S., HYDE, C., DISTEFANO, C., HALLADAY, A., RAY, S., PORATH, M., WILSON, B. y THURM, A. (2020). Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. Journal of Intellectual Disability Research, 64(11), 825-833. https://doi.org/10.1111/jir.12776
NACIONES UNIDAS. (2020). COVID-19 and the rights of persons with disabilities: Guidance. Recuperado de https://www.ohchr.org/Documents/Issues/Disability/COVID-19_and_The_Rights_of_Persons_with_Disabilities.pdf
NAVAS, P. (2020). Envejecimiento y discapacidad intelectual en tiempos de pandemia: la necesaria revisión de un modelo de servicios para avanzar hacia un modelo de apoyos. https://futurosingularcordoba.org/2020/06/02/envejecimiento-y-discapacidad-intelectual-en-tiempos-de-pandemia-la-necesaria-revision-de-un-modelo-de-servicios-para-avanzar-hacia-un-modelo-de-apoyos/
NAVAS, P., AMOR, A. M., CRESPO, M., WOLOWIEC, Z. y VERDUGO, M. Á. (2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, https://doi.org/10.1016/j.ridd.2020.103813
NAVAS P., VERDUGO, M. Á., AMOR, A. M., CRESPO, M. y MARTÍNEZ, S. (2020). COVID-19 y discapacidades intelectuales y del desarrollo: impacto del confinamiento desde la perspectiva de las personas, sus familiares y los profesionales y organizaciones que prestan apoyo. Disponible en https://plenainclusion.org/sites/default/files/00._informe_covid-19_y_discapacidades_intelectuales_y_del_desarrollo.pdf
NAVAS, P., VERDUGO, M. Á., MARTÍNEZ, S., SAINZ, F. y AZA, A. (2017). Derechos y calidad de vida en personas con discapacidad intelectual y mayo-res necesidades de apoyo [Rights and quality of life of individuals with intellectual disability and extensive support needs]. Siglo Cero, 48(4), 7-66. http://dx.doi.org/10.14201/scero2017484766
O’CATHAIN, A. y THOMAS, K. J. (2004). “Any other comments?” Open questions on questionnaires-a bane or a bonus to research? BMC Medi-cal Research Methodology, 4(1), 25. https://doi.org/10.1186/1471-2288-4-25
ORGANIZACIÓN MUNDIAL DE LA SALUD. (2020). WHO Director-General’s opening remarks at the media briefing on COVID-19. Recuperado de https://www.who.int/dg/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020.
PLENA INCLUSIÓN. (2020a). Guía de apoyos en casa durante el coronavirus. Recuperado de https://www.plenainclusion.org/sites/default/files/guia_apoyos_en_casa_durante_el_coronavirus.pdf
PLENA INCLUSIÓN. (2020b). El derecho a la educación durante el COVID-19. Análisis, propuestas y retos para la educación del alumnado con discapacidad intelectual o del desarrollo durante el confinamiento. Recuperado de https://www.plenainclusion.org/sites/default/files/el_derecho_a_la_educacion_durante_el_covid19.pdf
PLENA INCLUSIÓN. (2020c). Perspectiva ética de la desescalada en residencias y viviendas de personas con discapacidad intelectual o del desarrollo. Recuperado de https://www.plenainclusion.org/informate/publicaciones/perspectiva-etica-de-la-desescalada-en-residencias-y-viviendas-de-personas
POPE, C., ZIEBLAND, S. y MAYS, N. (2000). Analysing qualitative data. The British Medical Journal, 320(7227), 114-116.
ROSE, J., WILLNER, P., VOOPER, V., LANGDON, P. E., MURPHY, G. H. y STENFERT, B. (2020). The effect on and experience of families with a member who has intellectual and developmental disabilities of the COVID-19 pandemic in the UK: developing an investigation. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1764257
SAFTA-ZECHERIA, L. (2020). Challenges posed by COVID-19 to the health of people with disabilities living in residential care facilities in Roma-nia. Disability and Society, 35(5), 837-843. https://doi.org/10.1080/09687599.2020.1754766
SANDELOWSKI, M., VOILS, C. I. y KNAFL, G. (2009). On quantitizing. Journal of Mixed Methods Research, 3(3), 208-222. https://doi:10.1177/1558689809334210
SCHALOCK, R. L. y VERDUGO, M. Á. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retar-dation.
TUMMERS, J., CATAL, C., TOBI, H., TEKINERDOGAN, B. y LEUSINK, G. (2020). Coronaviruses and people with intellectual disability: an exploratory data analysis. Journal of Intellectual Disability Research, 64(7), 475-481. https://doi.org/10.1111/jir.12730
VERDUGO, M. Á. (2018). Conceptos clave que explican los cambios en la provisión de apoyos a las discapacidades intelectuales y del desarro-llo en España. Siglo Cero, 49(1), 35-52. https://dx.doi.org/10.14201/scero20184913552
VERDUGO, M. Á. y NAVAS, P. (2017). Todos somos todos: derechos y calidad de vida de las personas con discapacidad intelectual y mayores necesidades de apoyo. Real Patronato sobre Discapacidad.
AMOR, A. M., NAVAS, P., VERDUGO, M. Á. y CRESPO, M. (2021). Perceptions of people with intellectual and developmental disabilities about COVID-19 in Spain: a cross-sectional study. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12821
BARALT, M. (2011). Coding Qualitative Data. En A. MACKEY y S. M. GASS (Eds.), Research methods in second language acquisition: a practical guide (pp. 222-244). John Wiley & Sons.
BEIGEL, J. H., TOMASHEK, K. M., DODD, L. E., MEHTA, A. K., ZINGMAN, B. S., KALIL, A. C., … y LANE, H. C. (2020). Remdesivir for the treatment of Covid-19 – Preliminary report. New England Journal of Medicine, 383(19), 1813-1826. https://doi.org/10.1056/NEJMoa2007764
COURTENAY, K. (2020). COVID-19: challenges for people with intellectual disability. The BMJ, 369, m1609. https://doi.org/10.1136/bmj.m1609
COURTENAY, K. y PERERA, B. (2020). COVID-19 and people with intellectual disability: impacts of a pandemic. Irish Journal of Psychological Medicine, 37(3), 231-236. https://doi.org/10.1017/ipm.2020.45
ECHEITA, G. (2010). Alejandra L. S. o el dilema de la inclusión educativa en España. En P. ARNAIZ, M.ª HURTADO y F. J. SOTO (Coords.), 25 años de integración escolar en España. Tecnologías e inclusión en el ámbito educativo, laboral y comunitario (pp. 1-13). Consejería de Edu-cación, Formación y Empleo.
ESENTÜRK, O. K. (2020). Parents’ perceptions on physical activity for their children with autism spectrum disorders during the novel corona-virus outbreak. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1769333
EUROPEAN ASSOCIATION OF SERVICE PROVIDERS FOR PERSONS WITH DISABILITIES. (2020). The impact of COVID-19 on disability services in Europe. Recu-perado de https://www.easpd.eu/sites/default/files/sites/default/files/Publications2020/impact_of_covid-19_on_disability_services_in_europe_a_first_snapshot.pdf
FOLEGATTI, P. M., EWER, K. J., ALEY, K. P., ANGUS, B., BECKER, S., BELIJ-RAMMERSTORFER, S. B., … y POLLARD, A. J. (2020). Safety and immunogenicity of the ChAdOx1 nCoV-19 vaccine against SARS-CoV-2: a preliminary report of a phase 1/2, single-blind, randomized controlled trial. Lancet, 396, 467-478. https://doi.org/10.1016/S0140-6736(20)31604-4
GONZÁLEZ, J. A. (2019). Intensidad de apoyos, salud mental, empleo y su relación con resultados de calidad de vida. Siglo Cero, 50(2), 73-88. http://dx.doi.org/10.14201/scero20195027388
HUGHES, N. y ANDERSON, G. (2020). The experience of the COVID-19 pandemic in a UK learning disability service: lost in a sea of ever changing variables - a perspective. national Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1773711
INCLUSION EUROPE. (2020). Neglect and discrimination. Multiplied How Covid-19 affected the rights of people with intellectual disabilities and their families. Recuperado de http://www.inclusion-europe.eu/covid-report-2020/
JESTE, S., HYDE, C., DISTEFANO, C., HALLADAY, A., RAY, S., PORATH, M., WILSON, B. y THURM, A. (2020). Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions. Journal of Intellectual Disability Research, 64(11), 825-833. https://doi.org/10.1111/jir.12776
NACIONES UNIDAS. (2020). COVID-19 and the rights of persons with disabilities: Guidance. Recuperado de https://www.ohchr.org/Documents/Issues/Disability/COVID-19_and_The_Rights_of_Persons_with_Disabilities.pdf
NAVAS, P. (2020). Envejecimiento y discapacidad intelectual en tiempos de pandemia: la necesaria revisión de un modelo de servicios para avanzar hacia un modelo de apoyos. https://futurosingularcordoba.org/2020/06/02/envejecimiento-y-discapacidad-intelectual-en-tiempos-de-pandemia-la-necesaria-revision-de-un-modelo-de-servicios-para-avanzar-hacia-un-modelo-de-apoyos/
NAVAS, P., AMOR, A. M., CRESPO, M., WOLOWIEC, Z. y VERDUGO, M. Á. (2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, https://doi.org/10.1016/j.ridd.2020.103813
NAVAS P., VERDUGO, M. Á., AMOR, A. M., CRESPO, M. y MARTÍNEZ, S. (2020). COVID-19 y discapacidades intelectuales y del desarrollo: impacto del confinamiento desde la perspectiva de las personas, sus familiares y los profesionales y organizaciones que prestan apoyo. Disponible en https://plenainclusion.org/sites/default/files/00._informe_covid-19_y_discapacidades_intelectuales_y_del_desarrollo.pdf
NAVAS, P., VERDUGO, M. Á., MARTÍNEZ, S., SAINZ, F. y AZA, A. (2017). Derechos y calidad de vida en personas con discapacidad intelectual y mayo-res necesidades de apoyo [Rights and quality of life of individuals with intellectual disability and extensive support needs]. Siglo Cero, 48(4), 7-66. http://dx.doi.org/10.14201/scero2017484766
O’CATHAIN, A. y THOMAS, K. J. (2004). “Any other comments?” Open questions on questionnaires-a bane or a bonus to research? BMC Medi-cal Research Methodology, 4(1), 25. https://doi.org/10.1186/1471-2288-4-25
ORGANIZACIÓN MUNDIAL DE LA SALUD. (2020). WHO Director-General’s opening remarks at the media briefing on COVID-19. Recuperado de https://www.who.int/dg/speeches/detail/who-director-general-s-opening-remarks-at-the-media-briefing-on-covid-19---11-march-2020.
PLENA INCLUSIÓN. (2020a). Guía de apoyos en casa durante el coronavirus. Recuperado de https://www.plenainclusion.org/sites/default/files/guia_apoyos_en_casa_durante_el_coronavirus.pdf
PLENA INCLUSIÓN. (2020b). El derecho a la educación durante el COVID-19. Análisis, propuestas y retos para la educación del alumnado con discapacidad intelectual o del desarrollo durante el confinamiento. Recuperado de https://www.plenainclusion.org/sites/default/files/el_derecho_a_la_educacion_durante_el_covid19.pdf
PLENA INCLUSIÓN. (2020c). Perspectiva ética de la desescalada en residencias y viviendas de personas con discapacidad intelectual o del desarrollo. Recuperado de https://www.plenainclusion.org/informate/publicaciones/perspectiva-etica-de-la-desescalada-en-residencias-y-viviendas-de-personas
POPE, C., ZIEBLAND, S. y MAYS, N. (2000). Analysing qualitative data. The British Medical Journal, 320(7227), 114-116.
ROSE, J., WILLNER, P., VOOPER, V., LANGDON, P. E., MURPHY, G. H. y STENFERT, B. (2020). The effect on and experience of families with a member who has intellectual and developmental disabilities of the COVID-19 pandemic in the UK: developing an investigation. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2020.1764257
SAFTA-ZECHERIA, L. (2020). Challenges posed by COVID-19 to the health of people with disabilities living in residential care facilities in Roma-nia. Disability and Society, 35(5), 837-843. https://doi.org/10.1080/09687599.2020.1754766
SANDELOWSKI, M., VOILS, C. I. y KNAFL, G. (2009). On quantitizing. Journal of Mixed Methods Research, 3(3), 208-222. https://doi:10.1177/1558689809334210
SCHALOCK, R. L. y VERDUGO, M. Á. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retar-dation.
TUMMERS, J., CATAL, C., TOBI, H., TEKINERDOGAN, B. y LEUSINK, G. (2020). Coronaviruses and people with intellectual disability: an exploratory data analysis. Journal of Intellectual Disability Research, 64(7), 475-481. https://doi.org/10.1111/jir.12730
VERDUGO, M. Á. (2018). Conceptos clave que explican los cambios en la provisión de apoyos a las discapacidades intelectuales y del desarro-llo en España. Siglo Cero, 49(1), 35-52. https://dx.doi.org/10.14201/scero20184913552
VERDUGO, M. Á. y NAVAS, P. (2017). Todos somos todos: derechos y calidad de vida de las personas con discapacidad intelectual y mayores necesidades de apoyo. Real Patronato sobre Discapacidad.
Crespo Cuadrado, M., Verdugo Alonso, M. Ángel, Navas Macho, P., Martínez Torres, S., & Amor González, A. M. (2021). Impact of COVID-19 on people with intellectual and developmental disabilities, their families, support professionals and organizations. Siglo Cero, (1), 11–36. https://doi.org/10.14201/scero202152e1136
Most read articles by the same author(s)
- Climent Giné Giné, Delfín Montero Centeno, Miguel Ángel Verdugo Alonso, Pere Rueda Quitllet, Susanna Vert Tapia, Keys to Future in the Care and Support for People with Intellectual and Developmental Disabilities. What Tell us Science? , Siglo Cero: Vol. 46 No. 1 (2015)
- Manuela Crespo Cuadrado, Síndrome de Down. Mi visión y presencia , Siglo Cero: Vol. 51 No. 1 (2020)
- Manuela Crespo Cuadrado, Flórez, R. (2017). Síndrome de Down, comunicar la noticia: el primer acto terapéutico. Santander: Fundación Iberoamericana Down 21. ISBN: 978-84-617-7783-9, 61 pp. , Siglo Cero: Vol. 48 No. 2 (2017)
- Manuela Crespo Cuadrado, Contextos amigables con el autismo. Hilos y colores de su entramado , Siglo Cero: Vol. 52 No. 2 (2021)
- Manuela Crespo Cuadrado, Enfermedad de Alzheimer y síndrome de Down. Guía práctica para cuidadores , Siglo Cero: Vol. 50 No. 2 (2019)
- Miguel Ángel Verdugo Alonso, Presentation , Siglo Cero: Vol. 46 No. 1 (2015)
Downloads
Download data is not yet available.
+
−