The #Rights4MeToo Scalea Tool to Monitor Compliance with the Convention on the Rights of Persons with Disabilities

  1. Gómez-Sánchez, Laura Elisabet 1
  2. Morán-Suárez, M.ª Lucía 1
  3. Solís-García, Patricia 1
  4. Sierra-Maroto, Marta 1
  5. Pérez-Curiel, Patricia 2
  6. Verdugo-Alonso, Miguel Ángel 3
  1. 1 Universidad de Oviedo. España
  2. 2 Universidad de Zaragoza. España
  3. 3 Universidad de Salamanca, INICO. España
Revue:
Siglo Cero: Revista Española sobre Discapacidad Intelectual

ISSN: 2530-0350

Année de publication: 2023

Volumen: 54

Número: 3

Pages: 11-33

Type: Article

DOI: 10.14201/SCERO.31228 DIALNET GOOGLE SCHOLAR lock_openAccès ouvert editor

D'autres publications dans: Siglo Cero: Revista Española sobre Discapacidad Intelectual

Objectifs de Développement Durable

Résumé

There is a lack of psychometrically validated tools to evaluate the extent to which people with intellectual disability (ID) truly exercise their rights in all areas of their lives. The aim of this article is to provide evidence about the usefulness and reliability of the pilot version of the #Rights4MeToo Scale, an instrument based on the Quality of Life Supports Model. The scale can be self-reported by people with ID or hetero-reported by family members or professionals. First, through a qualitative study with self-advocates with ID, we provide evidence about the need and usefulness of this tool to understand and monitor compliance with the Convention on Rights of Persons with Disabilities (CRPD). Next, we present preliminary data on the internal consistency of the items that make up the pilot version, analyzing the responses of 1,200 people with ID, family members, and professionals. The #Rights4MeToo Scale will make it possible to conduct national studies on compliance with the CRPD, not to mention international comparative studies when the scale is adapted to the legal and cultural context of other countries.

Références bibliographiques

  • AZNAR, A. S., GONZÁLEZ, D. and OLATE, G. (2012). The ITINERIS scale on the rights of persons with intellectual disabilities: development, pilot studies and application at a country level in South America. Journal of Intellectual Disability Research, 56(11), 1046-1057. https://doi.org/10.1111/j.1365-2788.2012.01651.x
  • BUCHNER, T., SHEVLIN, M., DONOVAN, M. A., GERCKE, M., GOLL, H., SISKA, J., JANYSKOVA, K., SMOGORZEWSKA, J., SZUMSKI, G., VLACHOU, A., DEMO, H., FEYERER, E. and CORBY, D. (2021). Same progress for all? Inclusive education, the United Nations Convention on the Rights of Persons with Disabilities and students with intellectual disability in European countries. Journal of Policy and Practice in Intellectual Disabilities, 18(1), 7-22. https://doi.org/10.1111/jppi.12368
  • BUESCHI, E., ANTENER, G. and PARPAN-BLASER, A. (2022). Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress. Tizard Learning Disability Review, 27(1), 31-39. https://doi.org/10.1108/TLDR-07-2021-0019
  • CHALACHANOVÁ, A., LID, I. M. and GJERMESTAD, A. (2021). Citizenship of persons with intellectual disabilities within the frame of inclusive research: a scoping review of studies to inform future research. Alter, 15(2), 139-152. https://doi.org/10.1016/j.alter.2020.09.001
  • COLVER, A. F., DICKINSON, H. O., PARKINSON, K., ARNAUD, C., BECKUNG, E., FAUCONNIER, J., MARCELLI, M., MCMANUS, V., MICHELSEN, S. I., PARKES, J. and THYEN, U. (2011). Access of children with cerebral palsy to the physical, social and attitudinal environment they need: a cross-sectional European study. Disability and Rehabilitation, 33(1), 28-35. https://doi.org/10.3109/09638288.2010.485669
  • CRESWELL, J. (2014). Research design: qualitative, quantitative and mixed methods approaches (4.th Eds). SAGE.
  • DIDI, A., DOWSE, L. and SMITH, L. (2018). Intellectual disability and complex support needs: human rights perspective for policy and practice. The International Journal of Human Rights, 22(8), 989-1006. https://doi.org/10.1080/13642987.2018.1485653
  • ESTEBAN, L., NAVAS, P., VERDUGO, M. Á. and ARIAS, V. B. (2021). Community living, intellectual disability and extensive support needs: a rights-based approach to assessment and intervention. International Journal of Environmental Research and Public Health, 18(6), e3175. https://doi.org/10.3390/ijerph18063175
  • FERNÁNDEZ, M., GÓMEZ, L. E., ARIAS, V. B., AGUAYO, V., AMOR, A. M., ANDELIC, N. and VERDUGO, M. Á. (2019). A new scale for measuring quality of life in acquired brain injury. Quality of life Research, 28(3), 801-814. https://doi.org/10.1007/s11136-018-2047-5
  • GÓMEZ, L. E., ALCEDO, M. A., ARIAS, B., FONTANIL, Y., ARIAS, V. B., MONSALVE, M. A. and VERDUGO, M. Á. (2016). A new scale for the measurement of quality of life in children with intellectual disability. Research in Developmental Disabilities, 53-54, 399-410. https://doi.org/10.1016/j.ridd.2016.03.005
  • GÓMEZ, L. E., MONSALVE, A., MORÁN, L., ALCEDO, M. A., LOMBARDI, M. and SCHALOCK, R. L. (2020). Measurable indicators of CRPD for people with intellectual and developmental disabilities within the framework of quality of life. International Journal of Environmental Research and Public Health, 17, Article 5123. https://doi.org/10.3390/ijerph17145123
  • GÓMEZ, L. E., MORÁN, L., AL-HALABÍ, S., SWERTS, C., VERDUGO, M. Á. and SCHALOCK, R. L. (2022). Quality of life and the International Convention on the Rights of Persons with Disabilities: consensus indicators for assessment. Psicothema, 34(2), 182-191. https://doi.org/10.7334/psicothema2021.574
  • GÓMEZ, L. E., MORÁN, M. L., NAVAS, P., VERDUGO, M. Á., SCHALOCK, R. L., LOMBARDI, M., VICENTE, E., GUILLÉN, V. M., BALBONI, G., SWERTS, C., AL-HALABÍ, S., ALCEDO, M. A., MONSALVE, A., & RROWN, I. (2023). Using the quality of life framework to operationalize and assess CRPD Articles and Sustainable Development Goals. Journal of Policy and Practice in Intellectual Disabilities. Advance on line publication. https://doi.org/10.1111/jppi.12470
  • GÓMEZ, L. E., MORÁN, M. L., NAVAS, P., VICENTE, E., GUILLÉN, V. M., MONSALVE, A., ALCEDO, M. A., AL-HALABÍ, S., BALBONI, G., LOMBARDI, M., SWERTS, C., SCHALOCK, R. L. and VERDUGO, M. Á. (in press). Escala #YoTambién Tengo Derechos [#Rights4MeToo Scale]. INICO.
  • GÓMEZ, L. E. and NAVAS, P. (2022). La Convención sobre Derechos de las Personas con Discapacidad: logros y retos en España. In C. VELOSO, L. MARTINS y M. Á. VERDUGO (Eds.), Direitos humanos, apoios e autonomia: os novos rumos inclusão da pessoa com deficiencia (pp. 23-38). Feapes MG.
  • GÓMEZ, L. E., SCHALOCK, R. L. and VERDUGO, M. Á. (2021a). A new paradigm in the field of intellectual and developmental disabilities: characteristics and evaluation. Psicothema, 33(1), 28-35. https://doi.org/10.7334/psicothema2020.385
  • GÓMEZ, L. E., SCHALOCK, R. L. and VERDUGO, M. Á. (2021b). A Quality of Life Supports Model: six research-focused steps to evaluate the model and enhance research practices in the field of IDD. Research in Developmental Disabilities, 119, 104112. https://doi.org/10.1016/j.ridd.2021.104112
  • GÓMEZ, L. E., VERDUGO, M. Á. and ARIAS, B. (2015). Validity and reliability of the INICO-FEAPS Scale: an assessment of quality of life for people with intellectual and developmental disabilities. Research in Intellectual and Developmental Disabilities, 36, 600-610. https://doi.org/10.1016/j.ridd.2014.10.049
  • GÓMEZ, L. E., VERDUGO, M. Á., ARIAS, B. and IRURTIA, M. J. (2011). Evaluación de los derechos de las personas con discapacidad intelectual: estudio preliminar [Evaluation of the rights of people with intellectual disabilities: preliminary study]. Behavioral Psychology-Psicología Conductual, 19(1), 207-222.
  • HOUSEWORTH, J., STANCLIFFE, R. J. and TICHÁ, R. (2019). Examining the National Core Indicators’ Potential to monitor rights of people with intellectual and developmental disabilities according to the CRPD. Journal of Policy and Practice in Intellectual Disabilities, 16(4), 342-351. https://doi.org/10.1111/jppi.12315
  • KARR, V. L. (2011). A life of quality: informing the UN Convention on the Rights of Persons with Disabilities. Journal of Disability Policy Studies, 22(2), 67-82. https://doi.org/10.1177/1044207310392785
  • LOMBARDI, M., VANDENBUSSCHE, H., CLAES, C., SCHALOCK, R. L., DE MAEYER, J. and VANDEVELDE, S. (2019). The concept of quality of life as framework for implementing the UNCRPD. Journal of Policy and Practice in Intellectual Disabilities, 16, 180-190. https://doi.org/10.1111/jppi.12279
  • LUCKASSON, R., SCHALOCK, R. L., TASSÉ, M. J. and SHOGREN, K. A. (2023). The intellectual and developmental disability shared citizenship paradigm: its cross-cultural status, implementation and confirmation. Journal of Intellectual Disabiilty Research, 67(1), 64-76. https://doi.org/10.1111/jir.12992
  • MCCONKEY, R., SLATER, P., SMITH, A., DUBOIS, L. and SHELLARD, A. (2021). Perceptions of the rights and capabilities of people with intellectual disability in the United States. Journal of Applied Research in Intellectual Disabilities, 34(2), 537-545. https://doi.org/10.1111/jar.12819
  • MITTLER, P. (2015). The UN Convention on the rights of persons with disabilities: implementing a paradigm shift. Journal of Policy and Practice in Intellectual Disabilities, 12, 79-89. https://doi.org/10.1111/jppi.12118
  • MORALES, L., MORÁN, L. and GÓMEZ, L. E. (2021). Evaluación de resultados personales relacionados con derechos en jóvenes con discapacidad intelectual y TEA [Assessment of rights-related personal outcomes in young people with intellectual disability and autism spectrum disorder]. Siglo Cero, 52(3), 81-99. https://doi.org/10.14201/scero20215238199
  • MORÁN, L., GÓMEZ, L. E. and ALCEDO, M. A. (2019). Inclusión social y autodeterminación: los retos en la calidad de vida de los jóvenes con autismo y discapacidad intelectual [Social inclusion and self-determination: the challenges in the quality of life of youth with autism and intellectual disability]. Siglo Cero, 50(3), 29-46. https://doi.org/10.14201/scero20195032946
  • MORÁN, L., GÓMEZ, L. E., VERDUGO, M. Á. and SCHALOCK, R. L. (2023). The Quality of Life Supports Model as a Vehicle for Implementing Rights. Behavioral Sciences, 13(5), 365. https://doi.org/10.3390/bs13050365
  • NAVAS, P., GÓMEZ, L. E., VERDUGO, M. Á. and SCHALOCK, R. L. (2012). Derechos de las personas con discapacidad intelectual: implicaciones de la Convención de Naciones Unidas [Rights of people with intellectual disabilities: implications of the United Nations Convention]. Siglo Cero, 43(3), 7-28.
  • NAVAS, P., VERDUGO, M. Á., MARTÍNEZ, S., SAINZ, F. and AZA, A. (2018). Derechos y calidad de vida en personas con discapacidad intelectual y mayores necesidades de apoyo [Rights and quality of life of individuals with intellectual disability and extensive support needs]. Siglo Cero, 48(4), 7-66. https://doi.org/10.14201/scero2017484766
  • PÉREZ-CURIEL, P., VICENTE, E., MORÁN, L. and GÓMEZ, L. E. (2023). The right to sexuality, reproductive health and parenthood for people with intellectual disability: a systematic review. International Journal of Environmental Research and Public Health, 20(2), e1587. https://doi.org/10.3390/ijerph20021587
  • PETRI, G. (2022). Commentary on intellectual disability in Switzerland: The Convention on the Rights of Persons with Disabilities as a vehicle for progress. Tizard Learning Disability Review, 27(1), 40-45. https://doi.org/10.1108/TLDR-11-2021-0036
  • PETRI, G., BEADLE-BROWN, J. and BRADSHAW, J. (2021). ‘Even a self-advocate needs to buy milk’. Economic barriers to self-advocacy in the autism and intellectual disability movement. Scandinavian Journal of Disability Research, 23(1), 180-191. http://doi.org/10.16993/sjdr.738
  • SCHALOCK, R. L. y VERDUGO, M. Á. (2002). Handbook on quality of life for human service practitioners. American Association on Mental Retardation.
  • SIERRA, M. (2022). Derechos de las personas con discapacidad intelectual: una investigación inclusiva desde el marco de actuación del psicólogo general sanitario [Trabajo Fin de Máster, Universidad de Oviedo].
  • SLATER, P., MCCONKEY, R., SMITH, A., DUBOIS, L. and SHELLARD, A. (2020). Public attitudes to the rights and community inclusion of people with intellectual disabilities: a transnational study. Research in Developmental Disabilities, 105, e103754. https://doi.org/10.1016/j.ridd.2020.103754
  • STRNADOVÁ, I. and WALMSLEY, J. (2018). Peer-reviewed articles on inclusive research: do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities, 31(1), 132-141. https://doi.org/10.1111/jar.12378
  • TICHÁ, R., QIAN, X., STANCLIFFE, R. J., LARSON, S. A. and BONARDI, A. (2018). Alignment between the Convention on the Rights of Persons with Disabilities and the National Core Indicators Adult Consumer Survey. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 247-255. https://doi.org/10.1111/jppi.12260
  • UNITED NATIONS. (2006). Convention on the Rights of Persons with Disabilities (CRPD). https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
  • UNITED NATIONS. (2015). Transforming our world: the 2030 Agenda for Sustainable Development. https://www.unfpa.org/sites/default/files/resource-pdf/Resolution_A_RES_70_1_EN.pdf
  • VERDUGO, M. Á., GÓMEZ, L. E., ARIAS, B., NAVAS, P. and SCHALOCK, R. L. (2014). Measuring quality of life in persons with intellectual and multiple disabilities: validation of the San Martín Scale. Research in Developmental Disabilities, 35(1), 75-86. https://doi.org/10.1016/j.ridd.2013.10.025
  • VERDUGO, M. Á., NAVAS, P., GÓMEZ, L. E. and 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(2), 1036-1045. https://doi.org/10.1111/j.1365-2788.2012.01585.x
  • VERDUGO, M. Á., SCHALOCK, R. L. and GÓMEZ, L. E. (2021). The Quality of Life Supports Model: twenty-five years of parallel paths have come together. Siglo Cero, 52(3), 9-28. https://doi.org/10.14201/scero2021523928