Kevin J. Mahoney

Implementation Issues for Consumer-Directed Programs: Comparing Views of Policy Experts, Consumers, and Representatives

Summary 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.

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.

European long-term care programs: lessons for community living assistance services and supports?

OBJECTIVE To uncover lessons from abroad for Community Living Assistance Services and Supports (CLASS), a federally run voluntary public long-term care (LTC) insurance program created under the Accountable Care Act of 2010. DATA SOURCES Program administrators and policy researchers from Austria, England, France, Germany, and the Netherlands. STUDY DESIGN Qualitative methods focused on key parameters of cash for care: how programs set benefit levels; project expenditures; control administrative costs; regulate the use of benefits; and protect workers. DATA COLLECTION/EXTRACTION METHODS Structured discussions were conducted during an international conference of LTC experts, followed by personal meetings and individual correspondence. PRINCIPAL FINDINGS Germanys self-financing mandate and tight targeting of benefits have resulted in a solvent program with low premiums. Black markets for care are likely in the absence of regulation; France addresses this via a unique system ensuing legal payment of workers. CONCLUSIONS Programs in the five countries studied have lessons, both positive and negative, relevant to CLASS design.

Partnership insurance: an innovation to meet long-term care financing needs in an era of federal minimalism.

Summary In the case of long-term care financing, federal minimalism is not new news. Long-term care has long played a weak “third fiddle” to national health reform concerns about the uninsured and catastrophic expenditures on prescription drugs. The states have been left to struggle with the issue of long-term financing as part of their responsibilities in funding and administering the means-tested Medicaid program. Recently, the environment has become even more challenging. Much of what is on the national agenda for health and welfare reform has been delegated to the states. This “devolution” of responsibilities has created many competing priorities for both the attention and resources of states. This context of evolving federal minimalism calls for creative solutions that balance competing points of view. In this article, we provide some background and insights from one such effort: a collaboration between state governments and private insurers to put into operation an insurance-based approach to long-term care financing that uses Medicaid as an incentive to encourage potential purchasers.

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.

State Experiences with Implementing the Cash and Counseling Demonstration and Evaluation Project

ABSTRACT The Cash and Counseling Demonstration and Evaluation (CCDE) tested one of the most autonomous forms of consumer direction for personal assistance services. In the winter of 1996/97, Arkansas, Florida, New Jersey, and New York each received grants to develop and implement CCDE. While Arkansas, Florida, and New Jersey were successful in their efforts of implementing CCDE, New York was unable to do so. Using elements of Hasenfeld and Brocks (1991) political economy policy implementation model, the following sections describe two primary interactions between key policy implementation instruments and internal and external stakeholders that made New Yorks participation in CCDE not possible. This case study also provides some lessons for other states interested in developing Cash and Counseling models.

Understanding Saving and Purchase Patterns of Consumers in a Self-Directed Care Program: The West Virginia Experience

The study examines budget/purchase experiences of participants in the West Virginia’s Medicaid Aged and Disabled Waiver program who completed an application for the purchase of goods/services between September 2009 and August 2011 (N=181). Results indicate that people with disabilities are interested in and able to save for the purchase of goods/services that enhance their welfare. We also learned that items related to improvement in personal functioning (e.g., dental work) and household equipment (e.g., washer) were requested the most. Incorporating budget authority in long-term care delivery system may help the capacity of people with disabilities to meet their needs more efficiently.