Outcomes in young adulthood: are we achieving community participation and inclusion?
Adult services are broken: most young adults with ID stay jobless at home and their parents are burning out.
01Research in Context
What this study did
The team tracked 106 young adults with intellectual disability for two years after high school. They asked parents where the young adult lived, worked, and how stressed the family felt.
What they found
Eight out of ten still lived at home. Only one in four had any paid job. Parents said they felt 'very high' stress and were unhappy with adult services.
How this fits with other research
Channell et al. (2023) talked to parents of young adults with Down syndrome and heard the same story: long wait lists and too few real jobs. They add that when a job fits the person’s interests and co-workers give natural help, families feel better.
Burford et al. (2003) found Swedish parents also feel cut off from friends and short on time, but Sweden’s generous benefits kept stress lower. The difference shows money and respite services can soften the blow.
Chaplin (2004) looked at every adult mental-health study for people with ID and found no clear winner between general and special clinics. The weak evidence helps explain why families still struggle to find good care.
Why it matters
If you write transition plans, stop measuring success by diploma or day-program placement. Measure paid work hours, community memberships, and parent respite time. Push vocational agencies for individual job matches and natural co-worker supports—the two levers Moore et al. flagged. Until systems change, build parent-training or peer-to-peer respite into your behavior plan; Eugenia Gras et al. (2003) proved even phone groups cut stress.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one question about parent respite needs to your next transition meeting and offer a phone-based parent support group.
02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12069