Outcomes in young adulthood: Are we achieving community participation and inclusion?

K. M. Gray, A. Piccinin, C. M. Keating, J. Taffe, T. R. Parmenter, Scott Hofer, S. L. Einfeld, B. J. Tonge

Research output: Contribution to journalArticle

30 Citations (Scopus)

Abstract

Background: Despite recognition of the importance of integrated community living and support, there is evidence that parents remain the primary caregivers of young adults with intellectual disability (ID). In addition, employment rates remain low in this population. This study aimed to investigate the changes in living arrangements and participation in daytime activities over time in a community population of young people with ID. Method: The sample consisted of 536 participants aged 4.0-18.9 years at Wave 1, followed up at Wave 5 when aged 20.5-37.6 years. Information was collected on their living arrangements and daytime activities at both time points, along with living skills and information on community social inclusion at Wave 5. For parents still caring for their adult child with ID, information was also collected on parental ratings of their own mental and physical health, and their satisfaction with the long-term care arrangements for their adult child. Results: A significant proportion of young people were still living with their parents at Wave 5. A greater proportion of those with a severe-profound degree of ID were living in residential care. Parents caring for their adult child reported high levels of mental health problems and dissatisfaction with the long-term care arrangements for their child. A small proportion of young people were in paid employment, and the majority was engaged in structured activities provided for those with an ID. Over one-third of the sample participated in a structured daytime activity for 10 or fewer hours per week, and 7% were not engaged in any structured daytime activity. Conclusions: These results suggest that adequate provision of accommodation and employment services for young adults with an ID is lacking. In many cases the responsibility of care continues to reside with parents as their children transition from childhood to adulthood. Greater attention is needed to address these issues and facilitate social inclusion and integration for young people with ID.

Original languageEnglish (US)
Pages (from-to)734-745
Number of pages12
JournalJournal of Intellectual Disability Research
Volume58
Issue number8
DOIs
StatePublished - 2014
Externally publishedYes

Fingerprint

Intellectual Disability
Parents
Adult Children
Long-Term Care
Disabled Persons
Young Adult
Mental Health
Disabled Children
Community Participation
Inclusion
Adulthood
Caregivers
Population
Health Status
Arrangement
Waves
Proportion

Keywords

  • Adult outcomes
  • Employment
  • Inclusion
  • Living arrangements

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology
  • Psychiatry and Mental health
  • Rehabilitation
  • Arts and Humanities (miscellaneous)
  • Medicine(all)

Cite this

Gray, K. M., Piccinin, A., Keating, C. M., Taffe, J., Parmenter, T. R., Hofer, S., ... Tonge, B. J. (2014). Outcomes in young adulthood: Are we achieving community participation and inclusion? Journal of Intellectual Disability Research, 58(8), 734-745. https://doi.org/10.1111/jir.12069

Outcomes in young adulthood : Are we achieving community participation and inclusion? / Gray, K. M.; Piccinin, A.; Keating, C. M.; Taffe, J.; Parmenter, T. R.; Hofer, Scott; Einfeld, S. L.; Tonge, B. J.

In: Journal of Intellectual Disability Research, Vol. 58, No. 8, 2014, p. 734-745.

Research output: Contribution to journalArticle

Gray, KM, Piccinin, A, Keating, CM, Taffe, J, Parmenter, TR, Hofer, S, Einfeld, SL & Tonge, BJ 2014, 'Outcomes in young adulthood: Are we achieving community participation and inclusion?', Journal of Intellectual Disability Research, vol. 58, no. 8, pp. 734-745. https://doi.org/10.1111/jir.12069
Gray, K. M. ; Piccinin, A. ; Keating, C. M. ; Taffe, J. ; Parmenter, T. R. ; Hofer, Scott ; Einfeld, S. L. ; Tonge, B. J. / Outcomes in young adulthood : Are we achieving community participation and inclusion?. In: Journal of Intellectual Disability Research. 2014 ; Vol. 58, No. 8. pp. 734-745.
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