Background: Our aim was to explore previously unknown long-term outcomes of self-directed personal care services for young adults with intellectual disabilities and limitations in activities of daily living.
Materials and methods: The present authors utilized participatory action research and qualitative content analysis in interviewing 11 unpaid familial programme representatives of young adults with intellectual disabilities, ages 23-34, who were eligible for income-based Medicaid and enrolled five or more years in a Cash and Counseling-based programme of self-direction in the United States.
Results: Young adults are represented as receiving services and supports in a supportive and stable environment, with previously identified short-term programme benefits evident over the long-term. Young adults are also transitioning to adulthood at home with their families as primary social support and caregivers, bridging a service gap.
Conclusions: Our results show that self-direction helps meet these young adults' personal care and community engagement needs over time.
Keywords: intellectual disability; participatory action research; qualitative content analysis; representative descriptions; self-direction; young adults.
© 2016 John Wiley & Sons Ltd.