Preparedness of representatives for people with dementia in a self-directed program.

Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities. They represented participants with moderate to advanced dementia and ≥ two additional chronic illnesses. Overall preparedness scores were in the pretty well to very well prepared range, with variation across dimensions and between individuals. Preparedness varied according to what has to be done day-to-day in dynamic or unpredictable situations, gauging decisional capacity, anticipating changing needs, ensuring safety, supporting a dementia-capable care team and negotiation. Stress was related to having a safety net of capable back-up supports and dementia care literacy. Areas of strength, individual variation and particular challenges along the trajectory of representing can guide development of support counselor interventions to provide representatives with tailored training and resources as they enable the benefits of PD for persons with dementia.

An Inventory of Publicly Funded Participant-Directed Long-Term Services and Supports Programs in the United States.

After a decade of changes in federal law, regulation, and policy designed to promote the growth of publicly funded participant-directed long-term services and supports (PD-LTSS) programs, the number of these programs has grown considerably. The National Resource Center for Participant-Directed Services (NRCPDS) at Boston College started developing an inventory of these programs in 2010-2011 to determine the number and characteristics of publicly funded PD- LTSS programs in the United States. The 2010-2011 NRCPDS inventory provides baseline data for future research efforts in gauging the growth and expansion of this service delivery model. This article details the process for developing this data resource, some of the major characteristics of PD-LTSS programs in the United States, and discusses possible implications and areas for future research.

Expanding the consumer-directed workforce by attracting and retaining unaffiliated workers.

Unaffiliated workers are directly hired personal assistance workers who are not employed through an agency and are not family members or close friends. This article examines the working conditions of unaffiliated workers in a consumer-directed setting in comparison to agency workers and to other consumer-directed workers. Unaffiliated workers earned higher wages than their peers but were less satisfied with these wages and benefits than other directly hired workers. Findings for consumer-directed programs are discussed in terms of the recruitment and retention of unaffiliated workers, implications for consumers and workers, and future research recommendations.

Hiring relatives as caregivers in two states: developing an education and research agenda for policy makers.

Meeting the long-term care needs of the growing aging population is a priority policy issue in the United States. Yet, hiring relatives as caregivers remains a controversial policy issue. This two-state case study reports findings about views from policy experts regarding a policy option to hire family caregivers in home- and community-based long-term care programs. Policy makers also discussed information needed by other states considering this option and effective approaches to disseminate findings about this option from the Cash and Counseling Demonstration Evaluation. Based on the study results, we present an education and research agenda to communicate these findings to policy makers.

Does mental illness affect consumer direction of community-based care? Lessons from the Arkansas Cash and Counseling program.

PURPOSE: Previous research from the Cash and Counseling Demonstration and Evaluation (CCDE) in Arkansas, New Jersey, and Florida suggests that giving consumers control over their personal care greatly increases their satisfaction and improves their outlook on life. Still, some argue that consumer-directed care may not be appropriate for consumers with intellectual disabilities or mental health diagnoses. This study examined how Cash and Counseling-a new option allowing consumers to manage an individualized budget equivalent to what agencies would have spent on their care-changes the way consumers with mental health diagnoses meet their personal care needs and how that affects their well-being. DESIGN AND METHODS: Using the Arkansas CCDE baseline and the 9-month follow-up data for individuals in the treatment and control groups, we compared and contrasted the experience of elderly consumers with and without mental health diagnoses utilizing logit regression. RESULTS: After examining several outcome measures, including satisfaction with care arrangements and the paid caregiver's reliability and schedule, unmet needs, and satisfaction with the relationship with paid caregivers, this study found evidence that, from the perspective of consumers, the Cash and Counseling program works well for participants with mental health diagnoses. IMPLICATIONS: Considering the growing need for long-term-care services and the limited resources available, a consumer-directed option makes sense, and it can be a valuable alternative for persons with mental health needs.

The Cash and Counseling Demonstration and Evaluation: focus groups inform design of a consumer-directed cash option.

The purposes of the study were to explore consumer preferences for a cash option, to inform the ongoing CCDE survey and program design, and to identify the messages that the CCDE and other states should include when informing consumers about a cash option. The preference study consisted of 3 parts: 11 pre-survey focus groups, a telephone survey in each of the 4 participating states, and 16 post-survey focus groups. This article highlights unique results from pre- and post-survey focus groups. Focus group discussions were audiotaped and videotaped and transcribed. Transcripts were manually coded and text was clustered according to the moderator's guide questions and some new and recurrent themes that emerged. Overall, focus group participants, including elders, expressed positive feelings about the CCDE, especially about having a role in hiring workers and determining the workers' schedules and responsibilities. Focus groups provided important lessons about features to highlight when presenting program information to potential consumers and their families. Program planners must also bear in mind consumer concerns, especially considering that less than 10% of eligible Medicaid consumers volunteered for the cash option. These findings will be useful in guiding other states as they develop new cash and counseling programs, especially those in the current Cash and Counseling replication project.

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 (http://www.spss.com) 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.

Implementation issues for consumer-directed programs: comparing views of policy experts, consumers, and representatives.

An increasing number of aging community providers and consumers support consumer-direction (CD) in long-term care services. In regard to devolution, consumer-direction goes beyond the usual approach of shifting responsibilities from the federal government to state governments to bring programs "closer to the people." Consumer-direction goes even further by placing resources directly in the hands of consumers. Yet, many questions remain unanswered regarding how to implement CD personal assistance services in general, and especially for older persons. This article describes the importance of examining views from multiple key stakeholders involved in implementing CD programs. We report on three background studies that have informed the Cash and Counseling Demonstration and Evaluation (CCDE) design and implementation-policy expert interviews as well as surveys and focus groups with consumers and representatives. As a fourth data source, we drew upon experiences in designing the CCDE and initial results from the first year of implementation. Each of the three studies on its own provided essential information for planning the CCDE. However, when we examined the studies together, and added CCDE design and implementation experiences, views expressed by the different stakeholders formed a type of multi-perspective "dialogue" that expanded our knowledge about implementing CD services. We hope this increased knowledge will help expand the availability of such services for consumers of any age who want to direct their own care.