Transition to Independent Living for Young Adults with Intellectual Disability: A Scoping Review

Iselin Evensen; Line Melboe; Anita Borch

doi:10.16993/sjdr.1252

Transition to Independent Living for Young Adults with Intellectual Disability: A Scoping Review

Scandinavian Journal of Disability Research

Volume 27 (2025): Issue 1

By: Iselin Evensen , Line Melboe and Anita Borch

Open Access

|Dec 2025

Abstract

Background: The transition to adulthood represents a pivotal period for young adults with intellectual disabilities. Yet limited research exists on how their lived experiences align with the right to independent living as enshrined in Article 19 of the CRPD.

Method: Five databases were systematically searched to identify studies reporting on experiences related to housing arrangement for young adults (aged 15–35) with intellectual disabilities and their parents.

Results: The findings highlight a stark contrast between the aspirations of Article 19 and the realities shaped by structural, familial, and cultural factors.

Conclusion: To realize the right to independent living, it is essential to address systemic barriers, fostering collaborative relationships between families and young adults, and implement culturally sensitive practices that promote autonomy and inclusion.

References

Altermark, N. 2017. “The Post-Institutional Era: Visions of History in Research on Intellectual Disability.” Disability and Society 32 (9): 1315–1332. DOI: 10.1080/09687599.2017.1322497
Open DOI Search in Google Scholar Back to article
Arksey, H., and O’Malley, L. 2005. “Scoping Studies: Towards a Methodological Framework.” International Journal of Social Research Methodology 8 (1): 19–32. DOI: 10.1080/1364557032000119616
Open DOI Search in Google Scholar Back to article
Arnett, J. J. 2001. “Conceptions of the Transition to Adulthood: Perspectives from Adolescence Through Midlife.” Journal of Adult Development 8 (2): 133–143. DOI: 10.1023/A:1026450103225
Open DOI Search in Google Scholar Back to article
Arnett, J. J. 2024. Emerging Adulthood: The Winding Road from the Late Teens Through the Twenties (Third edition). Oxford University Press. DOI: 10.1093/oso/9780197695937.001.0001
Open DOI Search in Google Scholar Back to article
Bibby, R. 2013. “‘I Hope He Goes First’: Exploring Determinants of Engagement in Future Planning for Adults with a Learning Disability Living with Aging Parents. What Are the Issues?” British Journal of Learning Disabilities 41: 94–105. DOI: 10.1111/j.1468-3156.2012.00727.x
Open DOI Search in Google Scholar Back to article
Bigby, C., Whiteside, M., and Douglas, J. 2019. “Providing Support for Decision Making to Adults with Intellectual Disability: Perspectives of Family Members and Workers in Disability Support Services.” Journal of Intellectual and Developmental Disability 44 (4): 396–409. DOI: 10.3109/13668250.2017.1378873
Open DOI Search in Google Scholar Back to article
Biswas, S., Tickle, A., Golijani-Moghaddam, N., and Almack, K. 2016. “The Transition into Adulthood for Children with a Severe Intellectual Disability: Parents’ Views.” International Journal of Developmental Disabilities 63 (2): 99–109. DOI: 10.1080/20473869.2016.1138598
Open DOI Search in Google Scholar Back to article
Borch, A., Thorvik, C., Wollscheid, S., and Ødemark, I. L. 2024. Kunnskapsoppsummeringer for samfunnsvitere. Cappelen Damm akademisk.
Search in Google Scholar Back to article
Butora, J., Rimmerman, A., and Gur, A. 2018. Commentary on Article 19 of the UNCRPD-Living independently and Included in the Community.
Search in Google Scholar Back to article
Cahill, C., and Guerin, S. 2022. “Current and Future Living Arrangements: The Perspective of Young Adults with Intellectual Disabilities.” British Journal of Learning Disabilities 51: 400–406. DOI: 10.1111/bld.12498
Open DOI Search in Google Scholar Back to article
Carney, T., and Beaupert, F. 2013. “Public and Private Brico-Lage-Challenges Balancing Law, Services and Civil Society in Advancing CRPD Supported Decision Making.” UNSW Law Journal 36 (1): 175–201.
Search in Google Scholar Back to article
Chappell, A. L. 1997. “From Normalisation to Where?” In Disability Studies: Past, Present and Future, edited by L. Barton and M. Oliver, 45–62. The Disability Press.
Search in Google Scholar Back to article
Codd, J., and Hewitt, O. 2020. “Having a Son or Daughter with an Intellectual Disability Transition to Adulthood: A Parental Perspective.” British Journal of Learning Disabilities 49: 39–51. DOI: 10.1111/bld.12327
Open DOI Search in Google Scholar Back to article
Davy, L. 2015. “Philosophical Inclusive Design: Intellectual Disability and the Limits of Individual Autonomy in Moral and Political Theory.” Hypatia 30 (1): 132–148. DOI: 10.1111/hypa.12119
Open DOI Search in Google Scholar Back to article
de Beco, G. 2019. “The Indivisibility of Human Rights and the Convention on the Rights of Persons with Disabilities.” International and Comparative Law Quarterly 68 (1): 141–160. DOI: 10.1017/S0020589318000386
Open DOI Search in Google Scholar Back to article
Dirth, T. P., and Adams, G. A. 2019. “Decolonial Theory and Disability Studies: On the Modernity/Coloniality of Ability.” Journal of Social and Political Psychology 7 (1): 260–289. DOI: 10.5964/jspp.v7i1.762
Open DOI Search in Google Scholar Back to article
Ditchman, N., Werner, S., Kosyluk, K., Jones, N., Elg, B., and Corrigan, P. W. 2013. “Stigma and Intellectual Disability: Potential Application of Mental Illness Research.” Rehabilitation Psychology 58 (2): 206–16. DOI: 10.1037/a0032466
Open DOI Search in Google Scholar Back to article
Dommermuth, L. 2009. Når flytter de unge hjemmefra? : utflytting fra oppveksthjemmet. Samfunnsspeilet (trykt utg.). 23(2009) nr 1, 9–12.
Search in Google Scholar Back to article
Fina, V. D., Cera, R., and Palmisano, G. 2017. The United Nations convention on the rights of persons with disabilities: A commentary. DOI: 10.1007/978-3-319-43790-3
Open DOI Search in Google Scholar Back to article
Foley, S. 2013. “Reluctant ‘Jailors’ Speak Out: Parents of Adults with Down Syndrome Living in the Parental Home on How They Negotiate the Tension Between Empowering and Protecting Their Intellectually Disabled Sons and Daughters.” British Journal of Learning Disabilities 41 (4): 304–311. DOI: 10.1111/j.1468-3156.2012.00758.x
Open DOI Search in Google Scholar Back to article
Gjermestad, A., Luteberget, L., Midjo, T., and Witsø, A. 2017. “Everyday Life of Persons with Intellectual Disability Living in Residential Settings: A Systematic Review of Qualitative Studies.” Disability & Society 32 (2): 213–232. DOI: 10.1080/09687599.2017.1284649
Open DOI Search in Google Scholar Back to article
Hall, E. 2005. “The Entangled Geographies of Social Exclusion/Inclusion for People with Learning Disabilities.” Health & place 11 (2): 107–115. DOI: 10.1016/j.healthplace.2004.10.007
Open DOI Search in Google Scholar Back to article
Henninger, N. A., and Taylor, J. L. 2014. “Family Perspectives on a Successful Transition to Adulthood for Individuals with Disabilities.” Intellectual and Developmental Disabilities 52 (2): 98–111. DOI: 10.1352/1934-9556-52.2.98
Open DOI Search in Google Scholar Back to article
Holdsworth, C., and Morgan, D. 2005. Transitions in context: leaving home, independence and adulthood: hbk. Open University Press.
Search in Google Scholar Back to article
Isaacson, N. C., Cocks, E., and Netto, J. A. 2014. Launching: The Experiences of Two Young Adults with Intellectual Disability and Their Families in Transition to Individual Supported Living. Journal of Intellectual and Developmental Disability 39 (3): 270–281. DOI: 10.3109/13668250.2014.929643
Open DOI Search in Google Scholar Back to article
Leonard, H., Foley, K.-R., Pikora, T., Bourke, J., Wong, K., McPherson, L., Lennox, N., and Downs, J. 2016. “Transition to Adulthood for Young People with Intellectual Disability: The Experiences of Their Families. European Child & Adolescent Psychiatry 25 (12): 1369–1381. DOI: 10.1007/s00787-016-0853-2
Open DOI Search in Google Scholar Back to article
Levac, D., Colquhoun, H. and O’Brien, K. K. 2010. “Scoping studies: advancing the methodology.” Implementation Science 5: 69. DOI: 10.1186/1748-5908-5-69
Open DOI Search in Google Scholar Back to article
Liddiard, K., and Slater, T. 2018. “‘Like, Pissing Yourself Is Not a Particularly Attractive Quality, Let’s Be Honest’: Learning to Contain Through Youth, Adulthood, Disability and Sexuality.” Sexualities 21 (3): 319–333. DOI: 10.1177/1363460716688674
Open DOI Search in Google Scholar Back to article
Mladenov, T. 2025. “Success and Its Discontents: Independent Living and the Convention on the Rights of Persons with Disabilities.” Disability & Society 1–5. DOI: 10.1080/09687599.2025.2458002
Open DOI Search in Google Scholar Back to article
Mladenov, T., Cojocariu, I. B., Angelova-Mladenova, L., Kokic, N., and Goungor, K. 2023. “Special Issue Editorial. Independent Living in Europe and Beyond: Past, Present and Future.” International Journal of Disability and Social Justice 3 (1): 4–23. DOI: 10.13169/intljofdissocjus.3.1.0004
Open DOI Search in Google Scholar Back to article
Moyà-Köhler, J. 2024. “Exploring Independent Living Initiatives for People with Intellectual Disabilities: Insights from the Spanish Case. Disability & Society 40 (6): 1555–1576. DOI: 10.1080/09687599.2024.2368559
Open DOI Search in Google Scholar Back to article
Nirje, B. 1999. “How I Came to Formulate the Normalization Principle.” In A Quarter Century of Normalization and Social Role Valorization: Evolution and Impact, edited by R. J. Flynn and R. A. Lemay, 17–50. University of Ottawa Press. DOI: 10.2307/j.ctt1cn6s45.4
Open DOI Search in Google Scholar Back to article
Oliver, M. 1999. “Capitalism, Disability and Ideology: A Materialist Critique of the Normalization Principle.” In A Quarter-Century of Normalization and Social Role Valorization: Evolution and Impact, edited by R. J. Flynn and R. A. Lemay, 163–177. University of Ottawa Press. DOI: 10.2307/j.ctt1cn6s45.8
Open DOI Search in Google Scholar Back to article
Perkins, M. M., Ball, M. M., Whittington, F. J., and Hollingsworth, C. 2012. “Relational Autonomy in Assisted Living: A Focus on Diverse Care Settings for Older Adults.” Journal of Aging Studies 26 (2): 214–225. DOI: 10.1016/j.jaging.2012.01.001
Open DOI Search in Google Scholar Back to article
Peters, M. D. J., Marnie, C., Tricco, A. C., Pollock, D., Munn, Z., Alexander, L., McInerney, P., Godfrey, C. M., and Khalil, H. 2020. “Chapter 11: Scoping Reviews.” In JBI Manual for Evidence Synthesis. JBI. Available from https://synthesismanual.jbi.global.
Search in Google Scholar Back to article
Piantedosi, D. K., and O’Shea, A. 2023. “The Role of People with Intellectual Disability in Intellectual Disability Research: A Systematic Review of Delphi Studies.” Journal of Intellectual Disabilities. DOI: 10.1177/17446295231225272
Open DOI Search in Google Scholar Back to article
Priestley, M. 2003. Disability: A Life Course Approach. Polity.
Search in Google Scholar Back to article
Redgrove, F. J., Jewell, P., and Ellison, C. 2016. “Mind the Gap Between School and Adulthood for People with Intellectual Disabilities.” Research and Practice in Intellectual and Developmental Disabilities 3 (2): 182–190. DOI: 10.1080/23297018.2016.1188671
Open DOI Search in Google Scholar Back to article
Ryan, S., and Runswick-Cole, K. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability and Society 23 (3): 199–210. DOI: 10.1080/09687590801953937
Open DOI Search in Google Scholar Back to article
Salt, E., Melville, C., and Jahoda, A. 2019. “Transitioning to Adulthood with a Mild Intellectual Disability—Young People’s Experiences, Expectations and Aspirations.” Journal of Applied Research in Intellectual Disabilities 32 (4): 901–912. DOI: 10.1111/jar.12582
Open DOI Search in Google Scholar Back to article
Skagestad, L. J., Østensjø, S., and Ulvik, O. S. 2021. “Collaborations between Young People Living with Bodily Impairments and their Multiprofessional Teams: The Relational Dynamics of Participation and Power.” Children & Society 35 (5): 633–647. DOI: 10.1111/chso.12419
Open DOI Search in Google Scholar Back to article
Sperrin, Á. 2023. “A Disability Rights Approach to a Constitutional Right to Housing.” The International Journal of Disability and Social Justice 3 (1): 80–95. https://www.jstor.org/stable/48724368. DOI: 10.13169/intljofdissocjus.3.1.0080
Open DOI Search in Google Scholar Back to article
Stalker, K. 2012. “Theorising the Position of People with Learning Difficulties within Disability Studies: Progress and Pitfalls.” In Routledge Handbook of Disability Studies, edited by N. Watson, A. Roulstone, and C. Thomas, 122–135. Routledge. ISBN 9780415574006.
Search in Google Scholar Back to article
Stancliffe, R. J., Lakin, K. C., Larson, S., Engler J, Taub, S., and Fortune, J. 2011. “Choice of Living Arrangements.” Journal of Intellectual Disability Research 55 (8): 746–62. DOI: 10.1111/j.1365-2788.2010.01336.x
Open DOI Search in Google Scholar Back to article
Thomas, J., and Harden, A. 2008. “Methods for the Thematic Synthesis of Qualitative Research in Systematic Reviews.” BMC Medical Research Methodology 8 (1): 45. DOI: 10.1186/1471-2288-8-45
Open DOI Search in Google Scholar Back to article
Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K., Colquhoun, H., Kastner, M., Levac, D., Ng, C., Sharpe, J. P., Wilson, K., Kenny, M., Warren, R., Wilson, C., Stelfox, H. T., and Straus, S. E. 2016. “A Scoping Review on the Conduct and Reporting of Scoping Reviews.” BMC Medical Research Methodology 16 (1): 15. DOI: 10.1186/s12874-016-0116-4
Open DOI Search in Google Scholar Back to article
Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., Lewin, S., Godfrey, C. M., Macdonald, M. T., Langlois, E. V., Soares-Weiser, K., Moriarty, J., Clifford, T., Tuncalp, O., and Straus, S. E. 2018. “PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation.” Annals of Internal Medicine 169 (7): 467–473. DOI: 10.7326/M18-0850
Open DOI Search in Google Scholar Back to article
United Nations (UN). 2006. CRPD, UN Convention on the rights of persons with disabilities.
Search in Google Scholar Back to article
United Nations (UN). 2017. General comment No.5 on Article 19- the right to live independently and be included in the community.
Search in Google Scholar Back to article
Young-Southward, G., Philo, C., and Cooper, S.-A. 2017. “What Effect Does Transition Have on Health and Well-Being in Young People with Intellectual Disabilities? A Systematic Review.” Journal of Applied Research in Intellectual Disabilities 30: 805–823. DOI: 10.1111/jar.12286
Open DOI Search in Google Scholar Back to article

Articles in this issue

DOI: https://doi.org/10.16993/sjdr.1252 | Journal eISSN: 1745-3011

Journal RSS Feed

Language: English

Page range: 698 - 713

Submitted on: Jan 9, 2025

Accepted on: Jun 29, 2025

Published on: Dec 2, 2025

Published by: Stockholm University Press

In partnership with: Paradigm Publishing Services

Keywords:

independent living,

intellectual disability,

transition,

adulthood,

living arrangement

© 2025 Iselin Evensen, Line Melboe, Anita Borch, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.

Volume 27 (2025): Issue 1