European Child & Adolescent Psychiatry

, Volume 25, Issue 12, pp 1369–1381 | Cite as

Transition to adulthood for young people with intellectual disability: the experiences of their families

  • Helen Leonard
  • Kitty-Rose Foley
  • Terri Pikora
  • Jenny BourkeEmail author
  • Kingsley Wong
  • Lyn McPherson
  • Nick Lennox
  • Jenny Downs
Original Contribution


Whilst the transition from school to adult roles can be challenging for any adolescent, for those with an intellectual disability it can present as a particularly difficult time both for the individual and their family. The process may involve coordinated planning, collaboration and decision-making among school staff, families and community agencies. This mixed-methods study utilised information from two cohorts: young people with Down syndrome in Western Australia (n = 190) and young people with intellectual disability (of any cause) in Queensland, Australia (n = 150). The parent-report questionnaires administered in both states comprised two parts: part 1 collected information about the individual with intellectual disability including information on health, functioning and service needs, and about specific transition related issues; and part 2 collected information about the health and well-being of their family. The majority (87 %) of parents said that they were involved in decision-making about transition planning but less than two-thirds (59.5 %) of young people were involved in this process. The three most helpful strategies indicated by parents that assisted with transition planning related to the provision of more information about financial assistance, the school transition program and the building of informal community-based supports. A number of themes emerged from the qualitative data which included parents’ views and concerns about the capacity of their young adult to adapt and change to life in adulthood, their difficulty navigating services and programs, issues and challenges around their young person building connectedness, strain on family wellbeing and finances and worry about the longer term future.


Intellectual disability Down syndrome Transition Families 



The authors would like to acknowledge the families who kindly participated in this study. Funding for the study was provided through an Australian Research Council Linkage Grant (#LP0989847).

Compliance with ethical standards

Conflict of interest

On behalf of all authors, the corresponding author states that there is no conflict of interest.

Ethical approval

Ethical approval for the West Australian study was obtained from the Ethics Committee of the Women’s and Children’s Health Services in Western Australia (#1715/EP). Ethical approval for the Queensland study was granted by the University of Queensland Behavioural and Social Sciences Ethical Review Committee (Clearance No: 2009001648).


  1. 1.
    Forte M, Jahoda A, Dagnan D (2011) An anxious time? Exploring the nature of worries experienced by young people with a mild to moderate intellectual disability as they make the transition to adulthood. Br J Clin Psychol 50(4):398–411. doi: 10.1111/j.2044-8260.2010.02002.x CrossRefPubMedGoogle Scholar
  2. 2.
    Zigler E, Bennett-Gates D, Hodapp R, Henrich CC (2002) Assessing personality traits of individuals with mental retardation. Am J Mental Retard 107(3):181–193. doi: 10.1352/0895-8017(2002)107<0181:APTOIW>2.0.CO;2 CrossRefGoogle Scholar
  3. 3.
    Flexer RW, Baer RM (2005) Description and evaluation of a university-based transition endorsement program. Career Dev Except Individ 28(2):80–91. doi: 10.1177/08857288050280020501 CrossRefGoogle Scholar
  4. 4.
    Hetherington SA, Durant-Jones L, Johnson K, Nolan K, Smith E, Taylor-Brown S, Tuttle J (2010) The lived experiences of adolescents with disabilities and their parents in transition planning. Focus Autism Other Dev Disabil 25(3):163–172. doi: 10.1177/1088357610373760 CrossRefGoogle Scholar
  5. 5.
    Blacher J, Kraemer B, Howell E (2010) Family expectations and transition experiences for young adults with severe disabilities: does syndrome matter? Ad Mental Health Learn Disabil 4(1):3–16. doi: 10.5042/amhld.2010.0052 CrossRefGoogle Scholar
  6. 6.
    Davies MD, Beamish W (2009) Transitions from school for young adults with intellectual disability: parental perspectives on “life as an adjustment”. J Intellect Dev Disabil 34(3):248–257. doi: 10.1080/13668250903103676 CrossRefPubMedGoogle Scholar
  7. 7.
    McCollin MJ, Obiakor FE (2010) Transition from school to adult life. In: Peterson P, Baker E, McGaw B (eds) International encyclopedia of education (3rd ed). Elsevier, Oxford, pp 876–879. doi:
  8. 8.
    Wehmeyer ML, Palmer SB (2003) Adult outcomes for students with cognitive disabilities three-years after high-school: the impact of self-determination. Educ Train Dev Disabil 38(2):131–144Google Scholar
  9. 9.
    Beresford B (2004) On the road to nowhere? Young disabled people and transition. Child Care Health Dev 30(6):581–589CrossRefPubMedGoogle Scholar
  10. 10.
    Kraemer BR, McIntyre LL, Blacher J, Taylor SJ (2003) Quality of life for young adults with mental retardation during transition. Ment Retard 41(4):250–262. doi: 10.1352/0047-6765(2003)41<250:QOLFYA>2.0.CO;2 CrossRefPubMedGoogle Scholar
  11. 11.
    Morningstar ME, Turnbull AP, Turnbull HR III (1995) What do students with disabilities tell us about the importance of family involvement in the transition from school to adult life? Except Child 62(3):249Google Scholar
  12. 12.
    Dorozenko KP, Roberts LD, Bishop B (2015) The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews, values and mythologies. Disabil Soc 30(9):1345–1364. doi: 10.1080/09687599.2015.1093461 CrossRefGoogle Scholar
  13. 13.
    Benomir AM, Nicolson RI, Beail N (2016) Attitudes towards people with intellectual disability in the UK and Libya: a cross-cultural comparison. Res Dev Disabil 51–52:1–9. doi: 10.1016/j.ridd.2015.12.009 CrossRefPubMedGoogle Scholar
  14. 14.
    Pillay D, Girdler S, Collins M, Leonard H (2012) “It’s not what you were expecting, but it’s still a beautiful journey”: the experience of mothers of children with Down syndrome. Disabil Rehabil 34(18):1501–1510. doi: 10.3109/09638288.2011.650313 CrossRefPubMedGoogle Scholar
  15. 15.
    Salvador-Carulla L, Symonds S (2016) Health services use and costs in people with intellectual disability: building a context knowledge base for evidence-informed policy. Current Opin Psychiatry 29(2):89–94CrossRefGoogle Scholar
  16. 16.
    Ravin BH, Rubin JZ (1983) Social psychology, 2nd edn. Wiley, CanadaGoogle Scholar
  17. 17.
    Foley KR, 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. Disabil Rehabil 34(20):1747–1764. doi: 10.3109/09638288.2012.660603 CrossRefPubMedGoogle Scholar
  18. 18.
    Foley KR, Jacoby P, Einfeld S, Girdler S, Bourke J, Riches V, Leonard H (2014) Day occupation is associated with psychopathology for adolescents and young adults with Down syndrome. BMC Psychiatry 14(1):266. doi: 10.1186/s12888-014-0266-z CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Foley KR, Girdler S, Downs J, Jacoby P, Bourke J, Lennox N, Einfeld S, Llewellyn G, Parmenter TR, Leonard H (2014) Relationship between family quality of life and day occupations of young people with Down syndrome. Soc Psychiatry Psychiatr Epidemiol 49(9):1455–1465. doi: 10.1007/s00127-013-0812-x CrossRefPubMedGoogle Scholar
  20. 20.
    Foley KR, Jacoby P, Girdler S, Bourke J, Pikora T, Lennox N, Einfeld S, Llewellyn G, Parmenter TR, Leonard H (2013) Functioning and post-school transition outcomes for young people with Down syndrome. Child Care Health Dev 39(6):789–800. doi: 10.1111/cch.12019 PubMedGoogle Scholar
  21. 21.
    Lachapelle Y, Wehmeyer ML, Haelewyck MC, Courbois Y, Keith KD, Schalock R, Verdugo MA, Walsh PN (2005) The relationship between quality of life and self-determination: an international study. J Intellect Disabil Res 49(Pt 10):740–744. doi: 10.1111/j.1365-2788.2005.00743.x CrossRefPubMedGoogle Scholar
  22. 22.
    Powers LE, Geenen S, Powers J, Pommier-Satya S, Turner A, Dalton L, Swank P (2012) My life: effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education. Child Youth Serv Rev 34:2179–2187CrossRefGoogle Scholar
  23. 23.
    Tuckerman P, Cain P, Long B, Klarkowski J (2012) An exploration of trends in open employment in Australia since 1986. J Vocat Rehabil 37:173–183Google Scholar
  24. 24.
    Dyke P, Bourke J, Llewellyn G, Leonard H (2013) The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life. J Intellect Dev Disabil 38(2):149–162CrossRefPubMedGoogle Scholar
  25. 25.
    Foley KR, Jacoby P, Einfeld S, Girdler S, Bourke J, Riches V, Leonard H (2014) Day occupation is associated with psychopathology for adolescents and young adults with down syndrome. BMC Psychiatry 14:266. doi: 10.1186/s12888-014-0266-z CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, Msall M, Bower C, Leonard H (2008) Physical and mental health in mothers of children with down syndrome. J Pediatr 153(3):320–326. doi: 10.1016/j.jpeds.2008.02.047 CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Lennox N, Ware R, Carrington S, O’Callaghan M, Williams G, McPherson L, Bain C (2012) Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial. BMC Public Health 12:750CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Statacorp (2003) Stata statistical software. Release 80. Stata corporation, College Station, TexasGoogle Scholar
  29. 29.
    Mithaug DE, Horiuchi CN, Fanning PN (1985) A report on the Colorado statewide follow-up survey of special education students. Except Child 51:397–404PubMedGoogle Scholar
  30. 30.
    Wagner M, Newman L, Cameto R, Garza N, Levine P (2005) After high school: a first look at the post-school experiences of youth with disabilities: a report from the national longitudinal transition study—2 (NLTS2). SRI International, Menlo ParkGoogle Scholar
  31. 31.
    Agran M, Blanchard C, Wehmeyer ML (2000) Promoting transition goals and self-determination through student self-directed learning: the self-determined learning model of instruction. Educ Train Mental Retard Dev Disabil 35(4):351–364Google Scholar
  32. 32.
    Gaumer Erickson AS, Noonan PM, Zheng C, Brussow JA (2015) The relationship between self-determination and academic achievement for adolescents with intellectual disabilities. Res Dev Disabil 36:45–54CrossRefPubMedGoogle Scholar
  33. 33.
    Cobb RB, Alwell M (2009) Transitional planning/coordinating interventions for youth with disabilities. Career Dev Except Individ. doi: 10.1177/0885728809336655 Google Scholar
  34. 34.
    Raghavan R, Pawson N (2008) Transition and social networks of young people with learning disabilities. Adv Mental Health Learn Disabil 2(3):25–28. doi: 10.1108/17530180200800027 CrossRefGoogle Scholar
  35. 35.
    Griffin MM, McMillan ED, Hodapp RM (2010) Family perspectives on post-secondary education for students with intellectual disabilities. Educ Train Autism Dev Disabil 45(3):339–346Google Scholar
  36. 36.
    Seltzer M, Floyd F, Song J, Greenberg JS, Hong J (2012) Midlife and aging parents of adults with intellectual developmental disabilities: impacts of lifelong parenting. Am J Intellect Dev Disabil 116(6):479–499CrossRefGoogle Scholar
  37. 37.
    Taggart L, Truesdale-Kennedy M, Ryan A, McConkey R (2012) Examining the support needs of ageing family carers in developing future plans for a relative with an intellectual disability. J Intellect Disabil 16(3):217–234CrossRefPubMedGoogle Scholar
  38. 38.
    Hanley-Maxwell C, Whitney-Thomas J, Pogoloff SM (1995) The second shock: a qualitative study of parents' perspectives and needs during their child's transition from school to adult life. Res Prac for Persons Severe Disabil 20(1):3–15CrossRefGoogle Scholar
  39. 39.
    Ryan A, Taggart L, Truesdale-Kennedy M, Slevin E (2012) Issues in caregiving for older people with intellectual disabilities and their ageing family carers: a review and commentary. Int J Older People Nurs 9:217–226CrossRefGoogle Scholar
  40. 40.
    Fueyo M, Caldwell T, Mattern SB, Zahid J, Foley T (2015) The health home: a service delivery model for autism and intellectual disability. Psychiatr Serv 66(11):1135–1137CrossRefPubMedGoogle Scholar
  41. 41.
    Martinez DC, Conroy JW, Cerreto MC (2012) Parent involvement in the transition Process of children with intellectual disabilities: the influence of inclusion on parent desires and expectations for postsecondary education. J Policy Pract Intellect Disabil 9(4):279–288. doi: 10.1111/jppi.12000 CrossRefGoogle Scholar
  42. 42.
    Raghavan R, Pawson N, Small N (2013) Family carers’ perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity. J Intell Disabil Res 57(10):936–946CrossRefGoogle Scholar
  43. 43.
    Kraemer BR, Blacher J (2001) Transition for young adults with severe mental retardation: school preparation, parent expectations, and family involvement. Ment Retard 39(6):423–435CrossRefPubMedGoogle Scholar
  44. 44.
    Kohler PD (1998) Taxonomy for transition programming: linking research and practice. Transition Research Institute, Champaigne, University of IllinoisGoogle Scholar
  45. 45.
    Myers A, Eisenman L (2005) Student-led IEP’s: take the first step. Teach Except Child 37(4):52–58CrossRefGoogle Scholar
  46. 46.
    Hetherington S, Durant-JOnes L, Johnson K, Nolan K, Smith E, Taylor-Brown S, Tuttle J (2010) The lived experience of adolescents with disabilities and their parents in transition planning. Focus Autism Other Dev Disabil 25(3):163–172CrossRefGoogle Scholar
  47. 47.
    Gillan D, Coughlan B (2010) Transition from special education into postschool services for young adults with intellectual disability: Irish parents’ experience. J Policy Pract Intellect Disabil 7(3):196–203CrossRefGoogle Scholar
  48. 48.
    United Nations (2006) Convention on the rights of persons with disabilities. United Nations, GenevaGoogle Scholar
  49. 49.
    Johnson RB, Onwuegbuzie AJ, Turner LA (2007) Toward a definition of mixed methods research. J Mixed Methods Res 1(2):112–133. doi: 10.1177/1558689806298224 CrossRefGoogle Scholar
  50. 50.
    Scott M, Foley K-R, Bourke J, Leonard H, Girdler S (2013) I have a good life: the meaning of well-being from the perspective of young adults with down syndrome. Disabil Rehabil 36:1290–1298CrossRefPubMedGoogle Scholar
  51. 51.
    Parmenter T, Riches V (1991) Transition education: a pilot program for students with disabilities in transition in the NSW department of school education. Aust Disabil Rev 1:1–9Google Scholar
  52. 52.
    Parmenter T, Knox M (1991) The post-school experiences of young people with a disability. Int J Rehabil Res 14:281–291CrossRefPubMedGoogle Scholar
  53. 53.
    Landmark LJ, Ju S, Zhang D (2010) Substantiated best practices in transition: fifteen plus years later. Career Dev Except Individ 33(3):165–176CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2016

Authors and Affiliations

  • Helen Leonard
    • 1
  • Kitty-Rose Foley
    • 1
    • 2
  • Terri Pikora
    • 1
  • Jenny Bourke
    • 1
    Email author
  • Kingsley Wong
    • 1
  • Lyn McPherson
    • 3
  • Nick Lennox
    • 3
  • Jenny Downs
    • 1
    • 4
  1. 1.Telethon Kids Institute, University of Western AustraliaPerthAustralia
  2. 2.Department of Developmental Disability NeuropsychiatryUniversity of New South WalesSydneyAustralia
  3. 3.Queensland Centre for Intellectual and Developmental DisabilityMater Research Institute-UQ, University of QueenslandBrisbaneAustralia
  4. 4.School of Physiotherapy and Exercise ScienceCurtin UniversityPerthAustralia

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