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.

Where are they now? Cash and Counseling successes and challenges over time.

The positive results of the Cash & Counseling Demonstration and Evaluation (CCDE) led to the funding of a replication project that included 12 more states in 2008. Since then, the political and economic environments have changed. The authors sought to investigate how well the three original and 12 replication CCDE programs are coping with current challenges, and how their experiences may inform the growth and sustainability of emerging participant-directed programs. Semistructured telephone interviews were conducted with the 15 Cash & Counseling state program administrators. Key topics addressed included: successful aspects of state programs, biggest challenges for each program, and information program administrators would like to learn from state colleagues. Themes related to budget issues (e.g., staff shortages and program funding cuts) and non-budget related issues (e.g., understanding of program operations) emerged from the interviews. State program administrators also discussed program successes. To promote the sustainability and growth of participant-directed programs, existing participant-directed programs should be tied to national policy trends as well as review whether or not the programs address participant-directed principles. The development of new participant-directed programs should be based on other states' experiences as discussed in this paper.

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.

Lessons from the Arkansas Cash and Counseling program: how the experiences of diverse older consumers and their caregivers address family policy concerns.

This paper addresses four family policy questions that policy makers often ask about consumer-directed services, examining issues such as quality, suitability, and fraud and abuse. Responses to these questions evolved from the experiences of diverse elder consumers and their caregivers who participated in IndependentChoices, the Arkansas site of the Cash and Counseling Demonstration and Evaluation (CCDE) program. Building on CCDE evaluation survey data, this analysis of in-home interviews with participants discussing their experiences of receiving, giving, and managing care demonstrates how the program allows consumers choices so they receive the services they want. At the same time, program flexibility allows policy makers to safeguard both consumers and program resources through the use of supports such as representatives, state consultants, and fiscal intermediaries. This article demonstrates how the Cash and Counseling model can address the needs of both consumers with diverse disabilities and policy makers.

Social marketing principles enhance enrollment in the cash and counseling demonstration and evaluation.

PURPOSE OF THE STUDY: Using focus group data, this article discusses the use of social marketing principles to enhance enrollment in the Cash and Counseling Demonstration and Evaluation (CCDE). DESIGN AND METHODS: Focus groups were conducted in person and by conference call in two CCDE states, Arkansas and Florida. In Florida, Department of Elder Affairs and Developmental Services Program (DS) staff participated in seven focus groups. In Arkansas, four focus groups were conducted with professionals likely to come into contact with Medicaid consumers who are eligible for Arkansas' cash option program. Focus group transcripts were coded according to the project research questions. RESULTS: Several important lessons emerged including the importance of(a) conducting process evaluation activities, such as the social marketing focus groups, early during program implementation; (b) using multiple approaches and contacts to inform potential consumers and their families about a new, complex program; (c) carefully selecting and training personnel to conduct outreach and enrollment activities; and (d) developing specific messages to include in marketing the cash option. IMPLICATIONS: Using social marketing principles to examine CCDE enrollment has provided important information to enhance this program.

Consumer-directed care for beneficiaries with mental illness: lessons from New Jersey's Cash and Counseling program.

OBJECTIVE: Previous research from the Cash and Counseling Demonstration and Evaluation (CCDE) programs in New Jersey, Arkansas, and Florida suggests that consumers' control over personal care greatly improves their satisfaction with care arrangements and their outlook on life. Still, some argue that consumer-directed care may not be appropriate for consumers with a diagnosis of mental illness. This study examined the effectiveness of the CCDE program for those with a diagnosis of mental illness. METHODS: This study examined nonelderly Medicaid beneficiaries in New Jersey with a diagnosis of mental illness and compared and contrasted the experiences of those in New Jersey's CCDE program (N=109) and those who received services provided by an agency (N=119). Logistic regression analyses were performed on baseline and nine-month follow-up data. RESULTS: By examining outcome measures--including satisfaction with care arrangements, consumers' perceptions of paid caregivers' attitudes, unmet needs, adverse events, and satisfaction with life--this study offers evidence that, from the perspective of consumers, the CCDE program is appropriate for participants with a mental illness diagnosis. For most outcome measures the CCDE program demonstrated a positive effect after baseline characteristics were controlled for. The analysis of measures of adverse events, health problems, and general health status did not yield statistically significant differences between the control group and the treatment group, indicating that CCDE care was at least as safe as agency-directed care. CONCLUSIONS: Considering the growing need for long-term care services and the limited resources available, a consumer-directed option can be a valuable alternative for persons with a diagnosis of mental illness.

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.

Designing the Cash and Counseling Demonstration and Evaluation.

OBJECTIVE: The Cash and Counseling Demonstration and Evaluation (CCDE) was designed as an experiment in shifting the paradigm in home and community-based long-term care from a professional/bureaucratic model of service delivery to one emphasizing consumer choice and control. The experimental intervention was an individualized budget offered in lieu of traditional Medicaid-covered services, such as agency-delivered aide services or a plan of care developed and coordinated by a professional case-manager, which typically involves authorization for several different providers to deliver a range of services. Within the spending limits established by their budgets, program participants were largely free to choose the types and amounts of paid services and supports they judged best able to meet their disability-related personal assistance needs. STUDY POPULATION: Medicaid beneficiaries in selected states who volunteered to participate. In all of the participating state Medicaid programs, beneficiaries eligible to participate included elders and younger adults with chronic disabilities and, in one state, adults and children with mental retardation/developmental disabilities could also participate. Minor children and adults with cognitive impairment could participate via representatives (family or friends who agreed to assist them in managing their services or to act as their surrogate decision-makers). DATA SOURCES: Members of the CCDE management team describe the rationale for and implications of key design decisions. STUDY DESIGN: Key design decisions included the choice of research methodology (random assignment of CCDE participants in each state to treatment and control groups), selection of the state sites (AR, FL, NJ, NY), and the need for the CCDE to comply with federal waiver requirements for Medicaid research and demonstration projects. Principle Findings. The CCDE design was successfully implemented in three of the four state Medicaid programs selected for participation. CONCLUSIONS: The successful implementation of the CCDE (results from the evaluation are reported elsewhere) led to replication efforts in other states. The CCDE also inspired changes in Medicaid law and policy, including the 2002 "Independence Plus" Initiative by the Centers for Medicare and Medicaid and sections of the Deficit Reduction Act of 2005 intended to promote consumer-direction in Medicaid.

Case histories of six consumers and their families in Cash and Counseling.

OBJECTIVE: To examine how the lives of consumers and their caregivers were affected by making choices and controlling their own resources with the cash option, this paper focuses on six case studies from the Cash and Counseling Demonstration Program. DATA SOURCES: Twenty-one consumers, caregivers, and state consultants were interviewed about their experiences in the program. STUDY DESIGN: The data come from a larger study of over 200 interviews conducted from June 2000 to August 2004. Interview data were analyzed for themes about caregiving and program satisfaction. PRINCIPAL FINDINGS: Cash and Counseling benefited consumers and caregivers by allowing consumers increased continuity and reliability of care, increased ability to set hours of care, more satisfaction with how caregiving is offered and more satisfaction with the quality of care. CONCLUSIONS: The cash option allowed consumers to create, schedule, and manage their own model of care. Some consumers faced challenges in the program with paperwork, accounting, worries about receiving care, and some ineffective state consultants who could have been more helpful.

Cash and counseling: a promising option for consumer direction of home- and community-based services and supports.

The Cash and Counseling Demonstration began as a 3-state social experiment to test the claims of members of the disability community that, if they had more control over their services, their lives would improve and costs would be no higher. The 2004 expansion to 12 states brings us closer to the tipping point when this option will be broadly available. The original demonstration was a controlled experiment with randomized assignment, supplemented by an ethnographic study and a process evaluation. Consumers managing flexible, individualized budgets were much more satisfied, had fewer unmet needs, and had comparable health outcomes. Access to service and supports was greatly improved. Consumer direction is increasingly accepted as a desirable option in home and community services.

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.