Abstract

To determine whether functional self-care skills and presence of behavior problems in youth with developmental disabilities are associated with parents planning for the youth’s transition to adulthood. This multi-site study consisted of 167 parents of youth aged 10–22 years with autism spectrum disorder, ADHD and/or other developmental disabilities who completed a questionnaire on transition to adulthood. Parent-rated child self-care status was measured using a six-item scale that had excellent reliability (Cronbach’s alpha=0.90). Multivariable logistic regression models revealed that parents were less likely to plan for the youth’s transition to adulthood if their child needed more assistance with functional self-care skills (OR 0.78, 95% CI 0.63–0.96, p=.021). Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood. Despite this unexpected finding, greater child need for assistance with self-care was associated with lower parental expectations that their children would live independently by age 22 (OR 0.40, 95%CI 0.24–0.66, p<.001) and 35 (OR 0.47, 95%CI 0.35–0.63, p<.001). The presence of behavioral problems (aggression, sexual behaviors and safety issues) was also associated with lower odds of parental expectations that their child would live independently in adulthood. Despite parents’ awareness of the difficulties their children will face, less youth independence with self-care skills was associated with lower odds of plans for transition to adulthood and expectations for independent living. Results support the need for continued interventions targeted at improving daily living skills to achieve functional independence in adulthood, as well as interventions focused on aggression, safety and sexuality of the individuals.

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