title: The Long-Term Effects of Participant Direction of Supports and Services for People With Disabilities.
abstract: 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.
authors.affiliation: Boston College, Chestnut Hill, Massachusetts, USA.
authors.forename: Melissa L
authors.initials: ML
authors.lastname: Harry
authors.forename: Jooyoung
authors.initials: J
authors.lastname: Kong
authors.forename: Lynn M
authors.initials: LM
authors.lastname: MacDonald
authors.forename: Althea
authors.initials: A
authors.lastname: McLuckie
authors.forename: Christina
authors.initials: C
authors.lastname: Battista
authors.forename: Ellen K
authors.initials: EK
authors.lastname: Mahoney
authors.forename: Haesang
authors.initials: H
authors.lastname: Jeon
authors.forename: Kevin J
authors.initials: KJ
authors.lastname: Mahoney
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D019090:Case Management / Q000458:organization & administration*; D055812:Community-Based Participatory Research; D006233:Persons with Disabilities / Q000534:rehabilitation*; D005260:Female; D006302:Health Services Research; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007407:Interviews as Topic; D008134:Long-Term Care / Q000458:organization & administration*; D008297:Male; D008484:Medicaid / Q000458:organization & administration*; D008875:Middle Aged; D036301:Qualitative Research; D011787:Quality of Health Care; D014481:United States; D014483:United States Dept. of Health and Human Services