Limitations in life participation and independence due to secondary conditions.
Adults with developmental disabilities face stubborn life-participation limits, so start community skill-building early and measure often.
01Research in Context
What this study did
Stella and her team asked the adults with developmental disabilities about daily limits.
They tracked how cerebral palsy, Down syndrome, and autism shaped life participation.
Each person filled out a survey every year for five years.
The survey asked about work, friends, and self-care.
What they found
Adults with cerebral palsy hit the most roadblocks.
Their scores stayed low and flat across five years.
Down syndrome and autism groups also scored low, but not as low.
No group showed real gains over time.
The limits felt permanent, not fading.
How this fits with other research
Titlestad et al. (2019) gives hope.
They showed high-schoolers with severe disabilities can stock shelves at a food pantry when staff use strengths-based supports.
This extends Stella’s gloomy adult picture by proving teens can still build skills if we start early.
Austin et al. (2015) built a 118-item quality-of-life tool for adults with severe ID.
That bank now lets us measure the exact limits Stella found, so we can track change better in future studies.
Smit et al. (2019) adds another twist.
College students who mentored peers with ID grew more comfortable and willing to interact.
This shows community attitudes can shift, even if adult skills stay flat.
Why it matters
Stella warns us that adult limits harden over time.
Your move is to start community-based skill building as early as middle school and keep it going.
Use the 118-item QOL bank from Austin et al. (2015) to set clear targets.
Track progress yearly so you catch stalls before they freeze.
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Join Free →Pick one community task your client can do this week—like greeting customers at a coffee cart—and use the E et al. QOL items to set a clear participation goal.
02At a glance
03Original abstract
The effects of secondary conditions across adults with autism, Down syndrome, and cerebral palsy were explored in terms of overall limitation in life participation and independence, changes over time, and the degree and nature of limitation in specific secondary conditions. Information was obtained for 35 adults with autism, 49 with Down syndrome, and 29 with cerebral palsy (N = 113). Caregivers completed a questionnaire exploring secondary conditions on two occasions. Participants with cerebral palsy experienced the greatest overall limitations of the three groups. This finding is due to several secondary conditions. There were no changes in limitation scores over time. Implications related to health care for these groups are discussed.
American journal on intellectual and developmental disabilities, 2009 · doi:10.1352/1944-7588-114.6.437