Engagement in community life: perspectives of youths with intellectual and developmental disabilities on families’ roles

References

• Bianco M, Garrison-Wade DF, Tobin R, et al. Parents' perceptions of postschool years for young adults with developmental disabilities. Intellect Dev Disabil. 2009; 47:186–196.
   PubMed Web of Science ®Google Scholar
• Dyke P, Bourke J, Llewellyn G, et al. The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life. J Intellect Dev Disability. 2013;38:149–162.
   PubMed Web of Science ®Google Scholar
• Thomas DF, Botterbusch KF. The vocational assessment protocol for school-to-work transition programs. J Head Trauma Rehabil. 1997;12:48–66.
   Web of Science ®Google Scholar
• Samuel PS, Rillotta F, Brown I. Review: the development of family quality of life concepts and measures. J Intellect Disabil Res. 2012;56:1–16.
   PubMed Web of Science ®Google Scholar
• Lakin KC, Stancliffe RJ. Residential supports for persons with intellectual and developmental disabilities. Ment Retard Dev Disabil Res Rev. 2007;13:151–159.
   PubMedGoogle Scholar
• Stancliffe R, Lakin K, Larson S, et al. Choice of living arrangements. J Intellect Disabil Res. 2011;55:746–762.
   PubMed Web of Science ®Google Scholar
• Lunsky Y, Klein-Gelink JE, Yates EA. Atlas on the primary care of adults with developmental disabilities in Ontario. Toronto, ON: Institute for Clinical and Evaluative Sciences; 2013. Available from: https://www.porticonetwork.ca/documents/38160/99698/Atlas+revised+2014/c2d68a41-ed3d-44dc-8a14-7f30e044c17e
   Google Scholar
• Ontario AG. Residential services for people with developmental disabilities. 2013:332–361. Available from: http://www.auditor.on.ca/en/content/annualreports/arreports/en16/v2_110en16.pdf
   Google Scholar
• Taylor JL, Mailick MR. A longitudinal examination of 10-year change in vocational and educational activities for adults with autism spectrum disorders. Dev Psychol. 2014;50:699–708.
   PubMed Web of Science ®Google Scholar
• Badia M, Orgaz BM, Verdugo MA, et al. Personal factors and perceived barriers to participation in leisure activities for young and adults with developmental disabilities. Res Dev Disabil. 2011;32:2055–2063.
   PubMed Web of Science ®Google Scholar
• Brown RI, Cobigo V, Taylor WD. Quality of life and social inclusion across the lifespan: challenges and recommendations. Int J Dev Disabil. 2015;61:93–100.
   Web of Science ®Google Scholar
• Davies MD, Beamish W. Transitions from school for young adults with intellectual disability: parental perspectives on “life as an adjustment”. J Intellect Dev Disabil. 2009;34:248–257.
   PubMed Web of Science ®Google Scholar
• Newman L, Wagner M, Knokey A-M, et al. The post-high school outcomes of young adults with disabilities up to 8 years after high school: a report from the National Longitudinal Transition Study-2 (NLTS2). NCSER 2011-3005. Natl Cent Spec Educ Res. 2011;2:218. https://ies.ed.gov/ncser/pubs/20113005/pdf/20113005.pdf
   Google Scholar
• Wehman P, Schall C, Carr S, et al. Transition from school to adulthood for youths with autism spectrum disorder: what we know and what we need to know. J Disabil Policy Stud. 2014;25:30–40.
   Web of Science ®Google Scholar
• Henninger NA, Taylor JL. Family perspectives on a successful transition to adulthood for individuals with disabilities. Intellect Dev Disabil. 2014;52:98–111.
   PubMed Web of Science ®Google Scholar
• Moore-Dean A, Renwick R, Schormans AF. Friendship characteristics of children with intellectual/developmental disabilities: Qualitative Evidence from Video Data. J Dev Disabl. 2016;22:39–51.
   Google Scholar
• McConkey R, Collins S. The role of support staff in promoting the social inclusion of persons with an intellectual disability. J Intellect Disabil Res. 2010;54:691–700.
   PubMed Web of Science ®Google Scholar
• Bramston P, Bruggerman K, Pretty G. Community perspectives and subjective quality of life. Int J Disabil Dev Educ. 2002;49:385–397.
   Google Scholar
• van Asselt-Goverts AE, Embregts PJCM, Hendriks AHC. Structural and functional characteristics of the social networks of people with mild intellectual disabilities. Res Dev Disabil. 2013;34:1280–1288.
   PubMed Web of Science ®Google Scholar
• van Asselt-Goverts AE, Embregts PJCM, Hendriks AHC. Social networks of people with mild intellectual disabilities: characteristics, satisfaction, wishes and quality of life. J Intellect Disabil Res. 2015;59:450–461.
   PubMed Web of Science ®Google Scholar
• Malhotra R, Hansen RF. The United Nations Convention on the rights of persons with disabilities and its implications for the equality rights of Canadians with disabilities: the case of Education. 2011;106:73–106.
   Google Scholar
• Luftig RL, Muthert D. Patterns of employment and independent living of adult graduates with learning disabilities and mental retardation of an inclusionary high school vocational program. Res Dev Disabil. 2005;26:317–325.
   PubMed Web of Science ®Google Scholar
• Stewart D, Law M, Young NL, et al. Complexities during transitions to adulthood for youths with disabilities: person–environment interactions. Disabil Rehabil. 2014;36:1998–2004.
   PubMed Web of Science ®Google Scholar
• Todis B, Glang A, Bullis M, et al. Longitudinal investigation of the post-high school transition experiences of adolescents with traumatic brain injury. J Head Trauma Rehabil. 2011;26:138–149.
   PubMed Web of Science ®Google Scholar
• Blustein CL, Carter EW, Mcmillan ED. The voices of parents: post-high school expectations, priorities, and concerns for children with intellectual and developmental Disabilities. J Spec Educ. 2016;50:164–177.
   Web of Science ®Google Scholar
• Chambers CR, Hughes C, Carter EW. Parent and sibling perspectives on the transition to adulthood. Educ Train Dev Disabil. 2004;39:79–94.
   Web of Science ®Google Scholar
• Todis B, Glang A. Redefining success: results of a qualitative study of postsecondary transition outcomes for youths with traumatic brain injury. J Head Trauma Rehabil. 2008;23:252–263.
   PubMed Web of Science ®Google Scholar
• Cummins RA, Lau ALD. Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. J Appl Res Int Dis. 2003;16:145–157.
   Web of Science ®Google Scholar
• Cobigo V, Brown R, Lachapelle Y, et al. Social inclusion: a proposed framework to inform policy and service outcomes evaluation. Inclusion. 2016;4:226–238.
   Google Scholar
• Cobigo V, Ouellette-Kuntz H, Lysaght R, et al. Shifting our conceptualization of social inclusion. Iran Stigma Res Action Stigma Res Action. 2012;2:75–84. DOI: 10.5463/SRA.v1i1.10
   Google Scholar
• Amado AN, Stancliffe RJ, McCarron M, et al. Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellect Dev Disabil. 2013;51:360–375.
   PubMed Web of Science ®Google Scholar
• Foley K-R, Girdler S, Bourke J, et al. Influence of the enivornment on participation in social roles for young adults with down syndrome. PLoS One. 2014;9:1–11. DOI: 10.1371/journal.pone.0108413
   Web of Science ®Google Scholar
• Verdonschott MML, de Witte LP, Reichrath E, et al. Impact of environmental factors on community participation of persons with an intellectual and developmental disability: a systematic review. J Intellect Disabil Res. 2009;52:54–64.
   Web of Science ®Google Scholar
• Haigh A, Lee D, Shaw C, et al. What things make people with a learning disability happy and satisfied with their lives: an inclusive research project. J Appl Res Intellect Disabil. 2013; 26:26–33.
   PubMed Web of Science ®Google Scholar
• Correia RA, Seabra-Santos MJ, Pinto PC, et al. Giving voice to persons with intellectual disabilities about family quality of life. J Policy Pract Intellect Disabil. 2017;14:59–67.
   Web of Science ®Google Scholar
• Gray KM, Piccinin A, Keating CM, et al. Outcomes in young adulthood: Are we achieving community participation and inclusion? J Intellect Disabil Res. 2014;58:734–745.
   PubMed Web of Science ®Google Scholar
• Hewitt A, Emerson E, Stancliffe R. Introduction to the special issue: community living and participation. Intellect Dev Disabil. 2013;51:293–297.
   PubMed Web of Science ®Google Scholar
• Saaltink R, Ouellette-Kuntz H. “You did everything”: effort, motherhood, and disability in parents’ narratives of their attempts to obtain services. J Dev Disabil. 2014;20:44–54.
   Google Scholar
• Williamson HJ, Perkins EA. Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports. Intellect Dev Disabil. 2014;52:147–159.
   PubMed Web of Science ®Google Scholar
• Bolourian Y, Zeedyk SM, Blacher J. Autism and the university experience: narratives from students with neurodevelopmental disorders. J Autism Dev Disord. 2018;48:1–14. DOI: 10.1007/s10803-018-3599-5
   PubMed Web of Science ®Google Scholar
• Zeedyk SM, Bolourian Y, Blacher J. University life with ASD: Faculty knowledge and student needs. Autism. 2018;0:1–11. DOI: 10.1177/1362361318774148
   Google Scholar
• Derguy C, Michel G, M’bailara K, et al. Assessing needs in parents of children with autism spectrum disorder: a crucial preliminary step to target relevant issues for support programs. J Intellect Dev Disabil. 2015;0:1–11. DOI: 10.3109/13668250.2015.1023707
   Google Scholar
• Hewitt A, Agosta J, Heller T, et al. Families of individuals with intellectual and developmental disabilities: policy, funding, ervices, and experiences. Intellect Dev Disabil. 2013;51:349–359.
   PubMed Web of Science ®Google Scholar
• MaRS Solutions Lab. Residential support for adults with developmental disability. 2014:1–21. Available from: https://www.marsdd.com/wp-content/uploads/2014/04/Residential-Support-CB-v20-2014-03-05-PUBLIC-copy.pdf
   Google Scholar
• Roach MA, Orsmond GI, Barratt MS. Mothers and fathers of children with down syndrome: parental stress and involvement in childcare. Am J Ment Retard. 1999;104:422–436.
   PubMedGoogle Scholar
• Xue J, Ooh J, Magiati I. Family functioning in Asian families raising children with autism spectrum disorders: the role of capabilities and positive meanings. J Intellect Disabil Res. 2014;58:406–420.
   PubMed Web of Science ®Google Scholar
• Power A. Caring for independent lives: Geographies of caring for young adults with intellectual disabilities. Soc Sci Med. 2008;67:834–843.
   PubMed Web of Science ®Google Scholar
• Cadman T, Eklund H, Howley D, et al. Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Acad Child Adolesc Psychiatry. 2012;51:879–888.
   PubMed Web of Science ®Google Scholar
• Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20:398–407.
   PubMed Web of Science ®Google Scholar
• Cummins RA. The subjective well-being of people caring for a family member with a severe disability at home: a review. J Intellect Dev Disabil. 2001;26:83–100.
   Web of Science ®Google Scholar
• Frankena TK, Naaldenberg J, Cardol M, et al. Active involvement of people with intellectual disabilities in health research - a structured literature review. Res Dev Disabil. 2015;45–46:271–283.
   PubMed Web of Science ®Google Scholar
• Simplican SC, Leader G, Kosciulek J, et al. Defining social inclusion of people with intellectual and developmental disabilities: an ecological model of social networks and community participation. Res Dev Disabil. 2015;38:18–29.
   PubMed Web of Science ®Google Scholar
• Fudge Schormans A. Epilogues and prefaces: research and social work and people with intellectual disabilities. Aust Soc Work. 2010;63:51–66.
   Web of Science ®Google Scholar
• Belonging matters: knowledge mobilization film on Voices of Youths research inclusive methods and findings. (2017). [film] Directed by R. Renwick and D. DuBois. Toronto, ON: Social Sciences and Humanities Research Council of Canada.
   Google Scholar
• Stanley Z, Lauretani P, Conforti D, et al. Our perspectives: belonging through inclusive research. Disabil Soc. 2018;2.
   Google Scholar
• Charmaz K. Constructing grounded theory. Seaman J, editor. Singapore: Sage Publications Inc. 2014. p. 378.
   Google Scholar
• Charmaz K. The power of constructivist grounded theory for critical inquiry. Qual Inq. 2017;23:34–45.
   Web of Science ®Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Stancliffe RJ. Living with support in the community: Predictors of choice and self-determination. Ment Retard Dev Disabil Res Rev. 2001;98:91–98.
   Google Scholar
• Wehmeyer ML, Shrogan KE, Seo H. Promoting the self-determination and goal attainment of youth with learning disabilities and behavioral disorders. In: Cook BG, Tankersley M, Landrum TJ, editors. Transition of youth and young adults (Advances in Learning and Behavioral Disabilities). Bingley, United Kingdom: Emerald Group Publishing Limited; 2015;28:173–196. https://www.emeraldinsight.com/doi/full/10.1108/S0735-004X20150000028001#
   Google Scholar
• Gaumer Erickson AS, Noonan PM, Zheng C, et al. The relationship between self-determination and academic achievement for adolescents with intellectual disabilities. Res Dev Disabil. 2015;36:45–54.
   PubMed Web of Science ®Google Scholar
• Devi N. Supported decision-making and personal autonomy for persons with intellectual disabilities: Article 12 of the UN convention on the rights of persons with disabilities. J Law Med Ethics. 2013;41:792–806.
   PubMed Web of Science ®Google Scholar
• Kohn NA, Blumenthal JA. A critical assessment of supported decision-making for persons aging with intellectual disabilities. Disabil Health J. 2014;7:S40–S43.
   PubMed Web of Science ®Google Scholar
• Laliberte Rudman D. Occupational possibilities. J Occup Sci. 2010;7:55–59.
   Google Scholar
• Njelesani J, Teachman G, Durocher E, et al. Thinking critically about client-centred practice and occupational possibilities across the life-span. Scand J Occup Ther. 2015;22:1–8.
   PubMed Web of Science ®Google Scholar
• Saaltink R, MacKinnon G, Owen F, et al. Protection, participation and protection through participation: young people with intellectual disabilities and decision making in the family context. J Intellect Disabil Res. 2012;56:1076–1086.
   PubMedGoogle Scholar
• Foley K-R, Dyke P, Girdler S, et al. Young adults with intellectual disability transitioning from school to post-school: a literature review framed within the ICF. Disabil Rehabil. 2012;34:1747–1764.
   PubMed Web of Science ®Google Scholar
• King G, King S, Law M, et al. Family-centred service in ontario: a “Best Practice” approach for children with disabilities and their families. Hamilton, ON: CanChild Centre for Childhood Disability Research. 2002. Available from: https://canchild.ca/system/tenon/assets/attachments/000/000/632/original/FCSinbriefNov2002.pdf
   Google Scholar
• Mill A, Mayes R, McConnell D. Negotiating autonomy within the family: the experiences of young adults with intellectual disabilities. Br J Learn Disabil. 2010;38:194–200.
   Web of Science ®Google Scholar
• Keogh BK, Bernheimer LP, Guthrie D. Children with developmental delays twenty years later: Where are they? How are they? Am J Ment Retard. 2004;109:219–230.
   PubMedGoogle Scholar
• Vanier T. L’Arche communities – a challenge for gentleness. Spirituality Health. 2004;5:99–106.
   Google Scholar
• Province of Ontario. Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008, S.O. 2008, c. 14. Toronto, Ontario, Canada: Services, Ministry of Community and Social; 2008.
   Google Scholar