Improving quality of life and reducing behavioral problems of people with intellectual and developmental disabilities through deinstitutionalization

Referencias bibliográficas

• American Psychological Association [APA] (2014). Resolution in support of the U.N. Convention on the Rights of Persons with Disabilities. https:// www.apa.org/about/policy/support-un-convention
• Amor, A. M., Verdugo, M. A., Calvo, M. I., Navas, P., & Aguayo, V. (2018). Psychoeducational assessment of students with intellectual disability: Professional-action framework analysis. Psicothema, 30(1), 39-45. https://doi.org/10.7334/psicothema2017.175
• Baker, P. A. (2007). Individual and service factors affecting deinstitutionalization and community use of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 20, 105-109. https://doi.org/10.1111/j.1468-3148.2006.00313.x
• Beadle‐Brown, J., Beecham, J., Leigh, J., Whelton, R., & Richardson, L. (2021). Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities, 34(1), 42-54. https://doi.org/10.1111/jar.12782
• Beadle‐Brown, J., Leigh, J., Whelton, B., Richardson, L., Beecham, J., Baumker, T., & Bradshaw, J. (2015). 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), 409-421. https://doi. org/10.1111/jar.12200
• Beadle‐Brown, J., Hutchinson, A., & Whelton, B. (2012). Personcentred active support-increasing choice, promoting independence and reducing challenging behaviour. Journal of Applied Research in Intellectual Disabilities, 25(4), 291-307. https://doi.org/10.1111/j.14683148.2011.00666.x
• Bertelli, M. O., Bianco, A., Rossi, A., Mancini, M., La Malfa, G., & Brown, I. (2019). Impact of severe intellectual disability on proxy instrumental assessment of quality of life. Journal of Intellectual & Developmental Disability, 44(3), 272-281. https://doi.org/10.3109/13668250.2017.135 0835
• Bigby, C., & Beadle‐Brown, J. (2018). Improving quality of life outcomes in supported accommodation for people with intellectual disability: What makes a difference? Journal of Applied Research in Intellectual Disabilities, 31(2), e182-e200. https://doi.org/10.1111/jar.12291
• Bigby, C., Bould, E., & Beadle-Brown, J. (2018). Comparing costs and outcomes of supported living with group homes in Australia. Journal of Intellectual & Developmental Disability, 43(3), 295-307. https://doi.org/10.3109/13668250.2017.1299117
• Bigby, C., Clement, T., Mansell, J., & Beadle‐Brown, J. (2009). ‘It’s pretty hard with our ones, they can’t talk, the more-able bodied can participate’: Staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities. Journal of Intellectual Disability Research, 53(4), 363-376. https://doi.org/10.1111/j.13652788.2009.01154.x
• Bigby, C., Cooper, B., & Reid, K. (2012). Making life good in the community. Measures of resident outcomes and staff perceptions of the move from an institution. Department of Human Services.
• Bowring, D. L., Totsika, V., Hastings, R. P., & Toogood, S. (2020). Outcomes from a community‐based Positive Behavioural Support team for children and adults with developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 33(2), 193-203. https://doi.org/10.1111/jar.12660
• Bruininks, R. H., Hill, B. K., Weatherman, R. F., & Woodman, R. W. (1986). Examiner’s manual. ICAP: Inventory for client and agency planning. DLM Teaching Resources.
• Burke, K. M., Feinstein, C. S., Gould-Taylor, S. A., Lemanowicz, J. A., Eaton, J. T., Caruso, G. A., Within, R., & Mankin, A. F. (2021). Evaluating lifesharing: Quality of life for pennsylvanians with intellectual disability by residence type. Education and Training in Autism and Developmental Disabilities, 56(3), 255-267.
• Cameranesi, M., Chimney, K., & Shooshtari, S. (2022). Changes in the quality of life of persons with profound intellectual and multiple disabilities following community transition: A Canadian study. Research in Developmental Disabilities, 131, Article 104360. https://doi.org/10.1016/j. ridd.2022.104360
• Cameranesi, M., Shooshtari, S., Dubé, C., & McCombe, L. (2021). Quality of life of persons with severe or profound intellectual and developmental disabilities transitioning into community from a complex care residence in Canada. Journal on Developmental Disabilities, 26(1), 1-17.
• Chowdhury, M., & Benson, B. (2011). Deinstitutionalization and quality of life of individuals with intellectual disability: A review of the international literature. Journal of Policy and Practice in Intellectual Disabilities, 8(4), 256-265. https://doi.org/10.1111/j.1741-1130.2011.00325.x
• Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Erlbaum.
• Cooper, B., & Picton, C. (2000). The long-term effects of relocation on people with an intellectual disability: Quality of life, behavior, and environment. Research on Social Work Practice, 10(2), 195-208. https://doi.org/10.1177/104973150001000203
• Emerson, E., & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual and Developmental Disability, 21(1), 17-37. https://doi.org/10.1080/13668259600033021
• Esteban, L., Navas, P., Verdugo, M. Á., García Iriarte, E., & Arias, V. B. (2023). A community living experience: Views of people with intellectual disability with extensive support needs, families, and professionals. Research in Developmental Disabilities, 137, Article 104503. https://doi.org/10.1016/j. ridd.2023.104503
• European Commission (2009). Report of the Ad Hoc Expert Group on the transition from institutional to community-based care. http://ec.europa.eu/ social/main.jsp?langId=en&catId=89&newsId=614&furtherNews=yes
• Friedman, C. (2022). The impact of human service provider quality on the personal outcomes of people with intellectual and developmental 120Improving Quality of Life Though Independent Living disabilities. Frontiers in Rehabilitation Sciences, 2, Article 780168. https:// doi.org/10.3389/fresc.2021.780168
• Gómez, L. E., Morán, M. L., Al-Halabí, S., Swerts, C., Verdugo, M. Á., & 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. A., Schalock, R. L., Lombardi, M., Vicente, E., Guillén, V. M., Balboni, G., Swerts, C., AlHalabí, S., Alcedo, M. A., Monsalve, A., & Brown, I. (2023). Using the quality of life framework to operationalize and assess the CRPD articles and the Sustainable Development Goals. Journal of Policy and Practice in Intellectual Disabilities, 1-6. https://doi.org/10.1111/jppi.12470
• Gómez, L. E., Schalock, R. L., & Verdugo, M. Á. (2021). 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
• Hair, J. F., Risher, J. J., Sarstedt, M., & Ringle, C. M. (2019). When to use and how to report the results of PLS-SEM. European Business Review, 31(1), 2-24. https://doi.org/10.1108/EBR-11-2018-0203
• Hatton, C., Emerson, E., Robertson, J., Gregory, N., Kessissoglou, S., & Walsh, P. N. (2004). The Resident Choice Scale: A measure to assess opportunities for self‐determination in residential settings. Journal of Intellectual Disability Research, 48(2), 103-113. https://doi.org/10.1111/j.13652788.2004.00499.x
• Heller, T., Miller, A. B., & Factor, A. (1998). Environmental characteristics of nursing homes and community‐based settings, and the well‐being of adults with intellectual disability. Journal of Intellectual Disability Research, 42(5), 418-428. https://doi.org/10.1046/j.1365-2788.1998.00155.x
• Hemmings, C. P. (2008). Community services for people with intellectual disabilities and mental health problems. Current Opinion in Psychiatry, 21(5), 459-462. https://doi.org/10.1097/yco.0b013e3283060a6a
• Jones, J. L., & Gallus, K. L. (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
• Jones, E., & Lowe, K. (2018). Active Support Participation Measure. British Institute of Learning Disabilities (BILD).
• Kozma, A., Mansell, J., & Beadle-Brown, J. (2009). Outcomes in different residential settings for people with intellectual disability: A systematic review. American Journal on Intellectual and Developmental Disabilities, 114(3), 193-222. https://doi.org/10.1352/1944-7558-114.3.193
• Lin, J., Manokara, V., Ng, J. S., & Penchaliah, S. (2020). Implementing active support in disability day services: A 6-month prospective study on engagement and behaviours of concern among adults with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 33(6), 1307-1317. https://doi.org/10.1111/jar.12750
• Linehan, C., O’Doherty, S., Tatlow-Golden, M., Craig, S., Kerr, M., Lynch, C., McConkey, R., & Staines, A. (2015). Moving ahead: Factors contributing to successful transition of people with intellectual disabilities from congregated to community-based residential options in two regions in Ireland. School of Social Work, Trinity College Dublin. http://oro.open.ac.uk/55664/1/FINAL%20MOVING%20AHEAD%20MAIN%20REPORT%20pdf.pdf
• Maes, B., Nijs, S., Vandesande, S., Van Keer, I., Arthur‐Kelly, M., Dind, J., Goldbart, J., Petitpierre, G., & Van der Putten, A. (2021). Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 34(1), 250-262. https://doi.org/10.1111/jar.12803
• Mansell, J. (2010). Raising our sights: Services for adults with profound intellectual and multiple disabilities. https://www.mencap.org.uk/sites/ default/files/2016-06/Raising_our_Sights_report.pdf
• Martin, L., Ashworth, M., & Montague, P. (2012). A longitudinal study of institutional downsizing and challenging behaviors among adults with intellectual disability. International Journal on Disability and Human Development, 11(1), 51-59. https://doi.org/10.1515/ijdhd.2012.008
• McCarron, M., Lombard-Vance, R., Murphy, E., May, P., Webb, N., Sheaf, G., McCallion, P., Stancliffe, R., Normand, C., Smith, V., & O’Donovan, M. A. (2019). Effect of deinstitutionalization on quality of life for adults with intellectual disabilities: A systematic review. BMJ Open, 9(4), Article e025735. http://dx.doi.org/10.1136/bmjopen-2018-025735
• McCausland, D., Brennan, D., McCallion, P., & McCarron, M. (2019). Balancing personal wishes and caring capacity in future planning for adults with an intellectual disability living with family carers. Journal of Intellectual Disabilities, 23(3), 413-431. https://doi. org/10.1177/1744629519872658
• McCausland, D., Murphy, E., McCarron, M., & McCallion, P. (2022). The potential for person-centred planning to support the community participation of adults with an intellectual disability. Journal of Intellectual Disabilities, 26(3), 603-623. https://doi.org/10.1177/174462952110221
• McConkey, R., Keogh, F., Bunting, B., García-Iriarte, E., & Watson, S. F. (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), 109-120. https://doi.org/10.1177/1744629515624639
• Montero, D. (1993). Inventario para la planificación de servicios y programación individual ICAP. Ediciones Mensajero.
• Morán, L., Gómez, L. E., Verdugo, M. Á., & Schalock, R. L. (2023). The quality of life supports model as a vehicle for implementing rights. Behavioral Sciences, 13(5), Article 365. https://doi.org/10.3390/bs13050365
• Mumbardó‐Adam, C., Vicente, E., & Balboni, G. (2023). Self‐determination and quality of life of people with intellectual and developmental disabilities: Past, present, and future of close research paths. Journal of Policy and Practice in Intellectual Disabilities. https://doi.org/10.1111/jppi.12460
• Navas, P., Verdugo, M. A., Amor, A., Crespo, M., & 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 [COVID-19 and intellectual and developmental disabilities: Impact of confinement from the perspective of individuals, their families and the professionals and organizations providing support]. https://www.plenainclusion.org/publicaciones/buscador/informe-covid-19-y-discapacidades-intelectualesy-del-desarrollo-2020/
• Navas, P., Verdugo, M. A., Arias, V. B., & Esteban, L. E. (2022a). Informe de evaluación de resultados del proyecto ‘Mi Casa’ [Report on the results of the Project ‘Mi Casa’]. Instituto Universitario de Integración en la Comunidad.
• Navas, P., Verdugo, M. Á., Martínez, S., Amor, A. M., Crespo, M., & Deliu, M. M. (2022b). Impact of COVID‐19 on the burden of care of families of people with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 35(2), 577-586. https://doi. org/10.1111/jar.12969
• Navas, P., Verdugo, M. A., Martínez, S., Sainz, F., & Aza, A. (2017). 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
• Neely-Barnes, S., Marcenko, M., & Weber, L. (2008). Does choice influence quality of life for people with mild intellectual disabilities? Intellectual and Developmental Disabilities, 46(1), 12-26. https://doi.org/10.1352/00476765(2008)46[12:DCIQOL]2.0.CO;2
• Netten, A., Beadle-Brown, J., Trukeschitz, B., Towers, A., Welch, E., Forder, J., Smith, J., & Alden, E. (2010). Measuring the outcomes of care homes: Final report. https://www.pssru.ac.uk/pub/dp2696_2.pdf
• Reinartz, W., Haenlein, M., & Henseler, J. (2009). An empirical comparison of the efficacy of covariance-based and variance-based SEM. International Journal of Research in Marketing, 26(4), 332-344. https://doi.org/10.1016/j.ijresmar.2009.08.001
• Rigdon, E. (2016). Choosing PLS path modeling as analytical method in European management research: A realist perspective. European Management Journal, 34(6), 598-605. https://doi.org/10.1016/j. emj.2016.05.006
• Ringle, C. M., Wende, S., & Becker, J. M. (2015). SmartPLS 3. SmartPLS. http://www.smartpls.com
• Schalock, R. L., Baker, A., Claes, C., Gonzalez, J., Malatest, R., van Loon, J., Verdugo, M. A., & Wesley, G. (2018). The use of quality of life scores for monitoring and reporting, quality improvement, and research. Journal of Policy and Practice in Intellectual Disabilities, 15(3), 176-182. https://doi. org/10.1111/jppi.12250
• Schalock, R. L., & Verdugo, M. A. (2002). The concept of quality of life in human services: A handbook for human service practicioners. American Association on Mental Retardation.
• Schalock, R. L., Luckasson, R., & Tassé, M. J. (2019). The contemporary view of intellectual and developmental disabilities: Implications for psychologists. Psicothema, 31(3), 223-228. https://doi.org/10.7334/psicothema2019.119
• Schalock, R. L., & Verdugo, M. A. (2012). A leadership guide for today’s disabilities organizations: Overcoming challenges and making change happen. Brokes Publishing.
• Shogren, K. A., Luckasson, R., & Schalock, R. L. (2020). Using a multidimensional model to analyze context and enhance personal outcomes. Intellectual and Developmental Disabilities, 58(2), 95-110. https://doi.org/10.1352/1934-9556-58.2.95
• Šiška, J., & Beadle-Brown, J. (2020). Transition from institutional care to community-based services in 27 EU member states: Final report. European Expert Group on Transition from Institutional to Community-based Care.
• Stainton, T., Brown, J., Crawford, C., Hole, R., & Charles, G. (2011). Comparison of community residential supports on measures of information & planning; access to & delivery of supports; choice & control; community connections; satisfaction; and, overall perception of outcomes. Journal of Intellectual Disability Research, 55(8), 732-745. https://doi.org/10.1111/j.1365-2788.2010.01378.x
• Stancliffe, R. J., Tichá, R., Pettingell, S. L., Houseworth, J., & Bershadsky, J. (2023). Current services and outcomes of formerly institutionalised and never‐institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis. Journal of Applied Research in Intellectual Disabilities, 36(4), 859-870. https://doi.org/10.1111/ jar.13103
• Talman, L. (2019). Participation in everyday life for adults with profound intellectual (and multiple) disabilities [Doctoral thesis]. Mälardalen University. http://www.diva-portal.org/smash/get/diva2:1230447/ FULLTEXT02.pdf
• Tamarit, J. (2018). Psychology dealing with the quality of life and social inclusion of people with intellectual or developmental disabilities. Papeles del Psicólogo, 39(2), 113-119. https://doi.org/10.23923/pap.psicol2018.2868
• United Nations [UN] (2006). Convention on the Rights of Persons with Disabilities. http://www.un.org/esa/socdev/enable/documents/tccconvs.pdf
• Verdugo, M. Á., Gómez, L. E., Arias, B., Santamaría, M., Navallas, E., Fernández, S., & Hierro, I. (2014a). Escala San Martín. Evaluación de la calidad de vida de personas con discapacidades significativas [San Martín Scale. Assessment of the quality of life of people with significant disabilities]. Fundación Obra San Martín, INICO. http://sid.usal.es/26729/8-1
• Verdugo, M. A., Gómez, L. E., Arias, B., Navas, P., & Schalock, R. L. (2014b). Measuring quality of life in people 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.A, Schalock, R. L., & 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
• Verdugo, M. A., & Jenaro, C. (2019). Living independently and being included in the community. ANED. https://www.disability-europe.net/country/spain
• Verdugo, M. A., & Navas, P. (2017). Todos somos todos: Derechos y calidad de vida de las personas con discapacidad intelectual y mayores necesidades de apoyo [All means all: Rights and quality of life of people with intellectual disabilities and extensive support needs]. Real Patronado sobre Discapacidad. http://riberdis.cedd.net/bitstream/handle/11181/5267/Todos_somos_todos_discapacidad_intelectual. pdf?sequence=1&rd=0031275596861030
• Wehmeyer, M. L. (2006). Autodeterminación y personas con discapacidades severas [Selfdetermination and people with severe disabilities]. Siglo Cero, 37(220), 5-16.
• Wehmeyer, M. L. (2020). The importance of self-determination to the quality of life of people with intellectual disability: A perspective. International Journal of Environmental Research and Public Health, 17(19), Article 7121. https://doi.org/10.3390/ijerph17197121
• Wold, H. (1982). Soft modeling: the basic design and some extensions. Systems Under Indirect Observation, 2, Article 343.
• Young, L., & Ashman, A. F. (2004). Deinstitutionalization for older adults with severe mental retardation: Results from Australia. American Journal on Mental Retardation, 109(5), 397-412. https://doi.org/10.1352/08958017(2004)109%3c397:DFOAWS%3e2.0.CO;2