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

Kylie Megan Gray, Andrea M Piccinin, Caroline Keating, John Raymond Taffe, Trevor Parmenter, Scott M Hofer, Stewart Lloyd Einfeld, Bruce John Tonge

Research output: Contribution to journalArticleResearchpeer-review

28 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
Original languageEnglish
Pages (from-to)734 - 745
Number of pages12
JournalJournal of Intellectual Disability Research
Volume58
Issue number8
DOIs
Publication statusPublished - 2014

Cite this

Gray, Kylie Megan ; Piccinin, Andrea M ; Keating, Caroline ; Taffe, John Raymond ; Parmenter, Trevor ; Hofer, Scott M ; Einfeld, Stewart Lloyd ; Tonge, Bruce John. / 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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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",
author = "Gray, {Kylie Megan} and Piccinin, {Andrea M} and Caroline Keating and Taffe, {John Raymond} and Trevor Parmenter and Hofer, {Scott M} and Einfeld, {Stewart Lloyd} and Tonge, {Bruce John}",
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Outcomes in young adulthood: are we achieving community participation and inclusion? / Gray, Kylie Megan; Piccinin, Andrea M; Keating, Caroline; Taffe, John Raymond; Parmenter, Trevor; Hofer, Scott M; Einfeld, Stewart Lloyd; Tonge, Bruce John.

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

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Outcomes in young adulthood: are we achieving community participation and inclusion?

AU - Gray, Kylie Megan

AU - Piccinin, Andrea M

AU - Keating, Caroline

AU - Taffe, John Raymond

AU - Parmenter, Trevor

AU - Hofer, Scott M

AU - Einfeld, Stewart Lloyd

AU - Tonge, Bruce John

PY - 2014

Y1 - 2014

N2 - 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

AB - 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

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DO - 10.1111/jir.12069

M3 - Article

VL - 58

SP - 734

EP - 745

JO - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

SN - 0964-2633

IS - 8

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