Lori Simon-Rusinowitz

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.

Consumer Preferences for a Cash Option Versus Traditional Services Telephone Survey Results From New Jersey Elders and Adults

The Cash and Counseling Demonstration and Evaluation (CCDE) is a policy-driven evaluation of the basic belief that most people, including the elderly, want a say in matters that affect their daily lives. The evaluation is comparing cost, quality, and satisfaction of consumers receiving traditional personal care services with those receiving a consumer-directed cash benefit and information services. This article presents results from a telephone survey conducted as background research to assess the preferences of elders and adults with disabilities for a cash option versus traditional services in New Jersey, one CCDE demonstration state. This preference study provides information about consumer perceptions and attitudes, need for help or training with service management tasks, and outreach messages to emphasize when promoting a consumer-directed cash option.

Consumer and Surrogate Preferences for a Cash Option Versus Traditional Services: Florida Adults With Developmental Disabilities

As long-term service expenditures have risen, policymakers have sought ways to control costs while maintaining consumer satisfaction. Concurrently, there is increasing interest in the disability community in consumer direction. The Cash and Counseling Demonstration and Evaluation (CCDE) seeks to increase consumer direction and control costs by offering a cash allowance and information services to persons with disabilities, enabling them to purchase needed assistance. Because the disability community is composed of diverse subgroups, needs of these consumer communities must be assessed individually. Results from a telephone survey conducted to assess the interest in a cash option for Florida adults with developmental disabilities is presented, the three-state CCDE described, how survey findings can inform consumer information efforts discussed, and policy issues highlighted.

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, describes some of the major characteristics of PD-LTSS programs in the United States, and discusses possible implications and areas for future research.

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.

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.

Preferences for a Cash Option Versus Traditional Services for Florida Children and Adolescents with Developmental Disabilities

Traditional personal assistance programs often lack a significant consumer-direction focus that allows or encourages consumers to be in charge of their services. Independent evaluations of the Cash and Counseling Demonstration and Evaluation (CCDE) project are comparing costs of, quality of, and satisfaction with traditional personal care services versus consumer-directed cash benefit and information services. Because the disability community is composed of diverse subgroups, each group having with its own needs and concerns, the interests of each of these various populations should be assessed. This article presents the results of a telephone survey conducted in Florida as background research for the CCDE project to assess the interest in a cash option among families of children and adolescents with developmental disabilities. The findings indicate overall high levels of interest in the cash option, especially among individuals who were willing to pay a worker directly, persons who desired more involvement with services, and consumers dissatisfied with the current services. The authors of this article also include suggestions regarding how to communicate with families when informing them of such an option.

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

The positive results of the Cash and 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 3 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 and 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 article.

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.

Multi-State Survey of Support Brokers in Cash and Counseling Programs: Perceived Roles and Training Needs

The purpose of this study is to learn how support brokers (program counselors) carry out and are prepared for their roles in participant-directed programs. More specifically, this study looks at support brokers’ self-perceived roles, training, educational backgrounds, and how well they feel they are prepared for their jobs with Cash and Counseling programs. This study involves two phases of data collection. First, a 20-item survey was sent electronically to support brokers in three states (n = 138) in 2011. Descriptive statistics and t tests were used for the analysis. The second phase involves follow-up telephone interviews (n = 15) with a convenience sample who agreed to participate. Results showed an inconsistency in role definitions and types of training between and within individual states. Moreover, educational backgrounds had a significant influence on the level of support brokers’ perceived preparedness for given tasks. Finally, this study identifies areas that support brokers believe will help improve their performance.