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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.