Determining Personal Care Consumers' Preferences for a Consumer-Directed Cash and Counseling Option: Survey Results from Arkansas, Florida, New Jersey, and New York Elders and Adults with Physical Disabilities

OBJECTIVE: To assess Medicaid consumers' interest in a consumer-directed cash option for personal care and other services, in lieu of agency-delivered services. DATA SOURCES/STUDY SETTING: Telephone survey data were collected from four states from April to November 1997. Postsurvey focus groups were conducted in four states in 1998. Early implementation experiences are drawn from three states from 1999 to 2002. STUDY DESIGN: Participants (N=2,140) were selected for a structured telephone survey interview from a probability-sampling frame of current Medicaid consumers in Arkansas, Florida, New Jersey, and New York. Key variables include interest in the cash option, demographic and background characteristics of consumers, as well as previous experience and training needed. Postsurvey focus groups were also conducted with current Medicaid consumers. DATA COLLECTION/EXTRACTION METHODS: Interviewers read the telephone survey from computer screens and entered responses directly into the database of the Macintosh Computer Assisted Telephone Interview software. Data were analyzed using SPSS 10.0 () for Windows. PRINCIPAL FINDINGS: Cash option interest was positively associated with experience hiring and supervising workers, more severe levels of disability, having a live-in caregiver, living in Florida, and minority status. Age of the client was also a significant factor. CONCLUSIONS: There is significant interest in the cash option, although interest varies among subgroups of consumers. Future research should continue to evaluate interest in the cash option among different groups of consumers, as well as actual experience with the option when the Cash and Counseling Demonstration and Evaluation (CCDE) evaluation findings are completed

Consumer participation in designing community based consumer-directed disability care : lessons from a participatory action research-inspired project

User participation has been embraced worldwide as a means to provide better consumer outcomes in health and community care. However, methodologies to achieve effective consumer engagement at the programme design level have remained under-explored. The purpose of this study was to evaluate the impact of a Participatory Action Research (PAR)-inspired methodology used to develop a consumer-directed community care/individualised funding service model for people with disabilities. A retrospective analysis of case notes and internal reports for the first 6 years of an ongoing project were examined. The findings suggest that PAR methodologies need to take into account community development, group support, and capacity building as well as succession planning and risk management issues in order to facilitate the often lengthy policy and project development process. Drawing on these findings, this article discusses five lessons and their methodological implications for PAR in a health or social policy/programme design context. <br /