Obstacles to the transition to adulthood of people with severe to profound intellectual disability and potential solutions: Perspectives of professionals in one region of Quebec

References

• Amado, A. N., Stancliffe, R. J., McCarron, M., & 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
   PubMed Web of Science ®Google Scholar
• American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.) (DSM-5). American Psychiatric Association Publishing.
   Google Scholar
• Barron, D. A., Molosankwe, I., Romeo, R., & Hassiotis, A. (2013). Urban adolescents with intellectual disability and challenging behaviour: Costs and characteristics during transition to adult services. Health and Social Care in the Community, 21(3), 283–292. https://doi.org/10.1111/hsc.12015
   PubMed Web of Science ®Google Scholar
• Bernard, M.-A., & Goupil, G. (2012). L’après-parents: étude exploratoire sur les perceptions de mères qui vieillissent avec un adulte ayant une déficience intellectuelle. Canadian Journal on Aging, 31(1), 65–72. https://doi.org/10.1017/S0714980811000602
   PubMedGoogle Scholar
• 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.1365-2788.2009.01154.x
   PubMed Web of Science ®Google Scholar
• Blacher, J. (2001). Transition to adulthood: Mental retardation, families, and culture. American Journal on Mental Retardation, 106(2), 173–188. https://doi.org/10.1352/0895-8017(2001)106<0173:TTAMRF>2.0.CO;2
   PubMedGoogle Scholar
• Bronfenbrenner, U. (1979). The ecology of human development. Harvard University Press.
   Google Scholar
• Bourque, C. (2017). Les micro-transitions occupationnelles à un moment critique de sa vie: une nouvelle façon d’analyser les nombreux changements vécus autour de la retraite [Essay, Université du Québec à Trois-Rivières]. http://depot-e.uqtr.ca/id/eprint/8249/1/031889377.pdf
   Google Scholar
• Careau, E., Brière, N., Houle, N., Dumont, S., Vincent, C., & Swaine, B. (2015). Interprofessional collaboration: Development of a tool to enhance knowledge translation. Disability and Rehabilitation, 37(4), 372–378. https://doi.org/10.3109/09638288.2014.918193
   PubMed Web of Science ®Google Scholar
• Clavier, C., & Gagnon, F. (2013). L’action intersectorielle en santé publique ou lorsque les institutions, les intérêts et les idées entrent en jeu. La revue de l’innovation : La revue de l’innovation dans le secteur public, 18(2), 1–16.
   Google Scholar
• Clement, T., & Bigby, C. (2009). Breaking out of a distinct social space: Reflections on supporting community participation for people with severe and profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 22(3), 264–275. https://doi.org/10.1111/j.1468-3148.2008.00458.x
   Web of Science ®Google Scholar
• Cumella, S. (2008). New public management and public services for people with an intellectual disability: A review of the implementation of valuing people in England. Journal of Policy and Practice in Intellectual Disabilities, 5(3), 178–186. https://doi.org/10.1111/j.1741-1130.2008.00171.x
   Web of Science ®Google Scholar
• Davies, H., Rennick, J., & Majnemer, A. (2011). Transition from pediatric to adult health care for young adults with neurological disorders: Parental perspectives. Canadian Journal of Neuroscience Nursing, 33(2), 32–39.
   PubMedGoogle Scholar
• Davies, M. D., & Beamish, W. (2009). Transitions from school for young adults with intellectual disability: Parental perspectives on “life as an adjustment”. Journal of Intellectual & Developmental Disability, 34(3), 248–257. https://doi.org/10.1080/13668250903103676
   PubMed Web of Science ®Google Scholar
• Deschênes, M. (2000). La structuration d’une action intersectorielle à base communautaire comme stratégie d’actualisation d’une approche globale en promotion de la santé. Les régulations en jeu [doctoral thesis, Université de Montréal]. http://www.santecom.qc.ca/bibliothequevirtuelle/santecom/35567000025004.pdf
   Google Scholar
• Dickson, G., & Green, K. L. (2001). The external researcher in participatory action research. Educational Action Research, 9(2), 243–260. https://doi.org/10.1080/09650790100200150
   Google Scholar
• Finlay, W. M. L., Antaki, C., Walton, C., & Stribling, P. (2008). The dilemma for staff in “playing a game” with a person with profound intellectual disabilities: Empowerment, inclusion and competence in interactional practice. Sociology of Health & Illness, 30(4), 531–549. https://doi.org/10.1111/j.1467-9566.2007.01080.x
   PubMed Web of Science ®Google Scholar
• Foley, K. R., Dyke, P., Girdler, S., Bourke, J., & Leonard, H. (2012). Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF. Disability & Rehabilitation, 34(20), 1747–1764. https://doi.org/10.3109/09638288.2012.660603
   PubMed Web of Science ®Google Scholar
• Forster, S. (2010). Age-appropriateness: Enabler or barrier to a good life for people with profound intellectual and multiple disabilities? Journal of Intellectual & Developmental Disability, 35(2), 129–131. https://doi.org/10.3109/13668251003694606
   PubMed Web of Science ®Google Scholar
• Gallagher, F. (2014). Recherche descriptive interprétative. In M. Corbière, & N. Larivière (Eds.), Méthodes qualitatives, quantitatives et mixtes. Dans la recherche en sciences humaines, sociales et de la santé. Presses de l’Université du Québec.
   Google Scholar
• Gauthier-Boudreault, C., Beaudoin, A. J., Gallagher, F., & Couture, M. (2019). Scoping review of social participation of individuals with profound intellectual disability in adulthood: What can I do once I finish school? Journal of Intellectual & Developmental Disability, 248–260. https://doi.org/10.3109/13668250.2017.1310810
   Google Scholar
• Gauthier-Boudreault, C., Gallagher, F., & Couture, M. (2017). Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing? Research in Developmental Disabilities, 66, 16–26. https://doi.org/10.1016/j.ridd.2017.05.001
   PubMed Web of Science ®Google Scholar
• Geenen, S. J., Powers, L. E., & Sells, W. (2003). Understanding the role of health care Providers during the transition of Adolescents With disabilities and special health care needs. Journal of Adolescent Health, 32(3), 225–233. https://doi.org/10.1016/S1054-139X(02)00396-8
   PubMed Web of Science ®Google Scholar
• Gouvernement du Québec. (2019a, June 1). Act to secure handicapped persons in the exercise of their rights (Chapter E-20.1). http://legisquebec.gouv.qc.ca/en/ShowDoc/cs/E-20.1
   Google Scholar
• Gouvernement du Québec. (2019b, June 1). Education Act (Chapter I-13.3). http://legisquebec.gouv.qc.ca/en/ShowDoc/cs/I-13.3
   Google Scholar
• Hanzen, G., van Nispen, R. M. A., van der Putten, A. A. J., & Waninge, A. (2017). Participation of adults with visual and severe or profound intellectual disabilities: Definition and operationalization. Research in Developmental Disabilities, 61, 95–107. https://doi.org/10.1016/j.ridd.2016.12.017
   PubMed Web of Science ®Google Scholar
• Julien-Gauthier, F., Ruel, J., Moreau, A. C., & Martin-Roy, S. (2015). La transition de l’école à la vie active d’une élève ayant une déficience intellectuelle légère. Enfance en Difficulté, 4, 53–102. https://doi.org/10.7202/1036838ar
   Google Scholar
• Lebeau, A., Vermette, G., & Viens, C. (1997). Bilan de l’action intersectorielle et de ses pratiques en promotion de la santé et en prévention des toxicomanies au Québec. Ministère de la Santé et des Services sociaux. https://publications.msss.gouv.qc.ca/msss/fichiers/1997/97-767-01.pdf
   Google Scholar
• Miles, M. B., Huberman, A. M., & Saldana, J. (2013). Qualitative data analysis. A methods source book (3rd ed). Sage.
   Google Scholar
• Ministère de la Santé et des Services sociaux. (2017). Le soutien à l’action intersectorielle favorable à la santé: Stratégie ministérielle (publication no 17-216-01W). Gouvernement du Québec. https://publications.msss.gouv.qc.ca/msss/fichiers/2017/17-216-01W.pdf
   Google Scholar
• Office des personnes handicapées du Québec. (2003). La transition de l’école à la vie active. Rapport du comité de travail sur l’implantation d’une pratique de la planification de la transition au Québec. OPHQ. https://www.ophq.gouv.qc.ca/fileadmin/centre_documentaire/Etudes__analyses_et_rapports/1127_Transition_ecole_vie_active_Rapport_demarche_concertation_Acc.pdf
   Google Scholar
• Rapanaro, C., Bartu, A., & Lee, A. H. (2007). Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood. Journal of Applied Research in Intellectual Disabilities, 21, 34–47. https://doi.org/10.1111/j.1468-3148.2007.00367.x
   Web of Science ®Google Scholar
• Rapport spécial du protecteur du citoyen. (2012). Les services aux jeunes et aux adultes présentant un trouble envahissant du développement: de l’engagement gouvernemental à la réalité. https://protecteurducitoyen.qc.ca/sites/default/files/pdf/rapports_speciaux/2012-05-23_rapport_ted_2.pdf
   Google Scholar
• Rubin, H. J., & Rubin, I. S. (2012). Qualitative interviewing. The Art of Hearing data (3rd ed.). Sage.
   Google Scholar
• Sarker, M., & Joarder, T. (2012). Intersectoral collaboration: A novel path to promote community health promotion. Global Health Promotion, 19(7), 7–8. https://doi.org/10.1177/1757975912464596
   PubMedGoogle Scholar
• Simplican, S. C., Leader, G., Kosciulek, J., & Leahy, M. (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, 18–29. https://doi.org/10.1016/j.ridd.2014.10.008
   PubMed Web of Science ®Google Scholar
• Talman, L., Wilder, J., Stier, J., & Gustafsson, C. (2019). Staff members and managers’ views of the conditions for the participation of adults with profound intellectual and multiple disabilities. Journal of Applied Research in Intellectual Disabilities, 143–151. https://doi.org/10.1111/jar.12516
   Google Scholar
• Thorne, S. E. (2016). Interpretive description. Qualitative research for applied practice (2nd ed.). Rootledge.
   Google Scholar
• Ward, L., Maliett, R., Heslop, P., & Simons, K. (2003). Planning for health at transition. Learning Disability Practice, 6(3), 24–27. https://doi.org/10.7748/ldp2003.04.6.3.24.c1519
   Google Scholar