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

• Published in: Journal of intellectual disability research Vol. 58; no. 8; pp. 734 - 745
• Main Authors: Gray, K. M., Piccinin, A., Keating, C. M., Taffe, J., Parmenter, T. R., Hofer, S., Einfeld, S. L., Tonge, B. J.
• Format: Journal Article
• Language: English
• Published: Oxford Blackwell Publishing Ltd 01.08.2014; Wiley-Blackwell; Wiley Subscription Services, Inc
• Subjects: Adolescent; Adult; Adult and adolescent clinical studies; adult outcomes; Biological and medical sciences; Child; Child, Preschool; Children; Community Involvement; Community Participation - statistics & numerical data; Community Relations; Education of Intellectually Disabled - statistics & numerical data; Employment; Employment - statistics & numerical data; Employment Services; Female; Follow-Up Studies; Humans; inclusion; Intellectual deficiency; Intellectual Disability - epidemiology; Intellectual Disability - rehabilitation; living arrangements; Long term care; Male; Medical sciences; New South Wales - epidemiology; Parents; Physical Health; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Rehabilitation, Vocational - statistics & numerical data; Residence Characteristics - statistics & numerical data; Residential Care; Teenagers; Time use; Workers with disabilities; Young Adult; Young adults; Young people; Human; inclusion; living arrangements; Living conditions; Employment; Young adult; Intellectual deficiency; Developmental disorder; adult outcomes; Social participation; employment
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/jir.12069

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.