ABSTRACT
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.
Subject(s)
Activities of Daily Living , Counseling , Intellectual Disability , Persons with Mental Disabilities/psychology , Adult , Caregivers/psychology , Female , Health Services Research , Home Care Services , Humans , Male , Medicaid , United States , Young AdultABSTRACT
Numerous studies have demonstrated the short-term effectiveness of the Cash and Counseling model option of participant-directed home and community-based personal care service programs for Medicaideligible recipients with disabilities requiring long-term care. However, long-term experiences with participant-directed services have yet to be examined for these individuals. We addressed this gap in the literature through participatory action research and qualitative content analysis. Working together as coresearchers with members of the National Participant Network, a peer organization for people interested in or enrolled in participant-directed services, we interviewed 17 adults enrolled in one state's Cash and Counseling-based program. Participants' ages ranged from 40 to 83 years, had been enrolled for at least 5 years, and acted as their own representative within the program. Our major findings show (a) the program's flexibility allowed for adaptation to meet participants' changing needs over time and (b) that program attendants helped connect participants with community in multiple ways. In this article, we provide important policy and practice implications for participant-directed programs for people with disabilities.
