Change and inertia in the New York state medicaid personal care services program: an institutional case study

This study analyzes how competing logics (belief systems) of stakeholders have influenced patterns of change and inertia in the development of the New York Medicaid Personal Care Services (PCS) program. A case-study methodology was used to collect documents, statistics, and interview data from four key stakeholder groups: state and city officials, PCS agencies, a labor union, and consumer advocates covering the period 1999 to 2005. The New York PCS program is one of the oldest, largest, and most stable programs in the United States. Its early unionization of workers resulted in relatively generous wages and benefits and made New York number one nationally in PCS spending per capita. In spite of wide support from stakeholder groups, the overall number of participants has gradually declined since 1999. A consumer-directed model of personal care developed in 1995 challenged the status quo and has grown steadily. Resistance by public officials, agency providers, and union representatives to the consumer-directed model has resulted in a small program that is often targeted toward individuals labeled "difficult to serve." Dominant stakeholders in New York have ensured a stable personal care program that has resisted change and led to program inertia.     

Medicaid State Plan Personal Care Services

Abstract

Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999–2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies in use on the program. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.     

Medicaid State Plan personal care services: trends in programs and policies

Policymakers face mounting pressures from consumer demand and the 1999 Olmstead Supreme Court decision to extend formal (paid) programs that deliver personal care to the elderly, chronically ill, and disabled. Despite this, very little is known about the largest program that delivers personal care: the Medicaid State Plan personal care services (PCS) optional benefit. This paper presents the latest available national program (participant and expenditure) trend data (1999-2002) on the Medicaid PCS benefit and findings from a national survey of eligibility and cost control policies in use on the program. The program trends show that, over the study period, the number of states providing the Medicaid PCS benefit grew by four (from 26 to 30), and national program participation, adjusted for population growth, increased by 27%. However, inflation-adjusted program expenditures per participant declined by 3% between 1999 and 2002. Findings from the policy survey reveal that between 1999 and 2002 there was a marked decline in the range of services provided, and by 2004, almost half the programs operated a cap on the hours of services provided.     

Fingerprint-based background checks for personal care workers: Stakeholder views of policy criteria

Decision makers face difficult choices when tasked with identifying and implementing appropriate mechanisms for protecting the elderly and other vulnerable adults from abuse. A pilot project involving fingerprint-based criminal history background checks for personal care workers in Michigan has supplied an opportunity to examine one such mechanism. In conjunction with the pilot project, we have conducted a stakeholder analysis with the aim of informing decision makers about stakeholder perceptions of standard policy criteria like effectiveness, efficiency, and equity. We employed focus groups and a Web-based survey to collect data from stakeholders. While stakeholders generally see fingerprint-based background checks for personal care workers as potentially effective and as a net benefit, they also point to a variety of contingencies. They also recognize difficulties and constraints for government involvement. This preliminary analysis provides solid foundational information for decision makers and for more extensive benefit–cost analysis.     

Do Disabled Elderly Medicare Beneficiaries with Major Depression Make Less Use of a Consumer-Directed Home Care Voucher Benefit?

Older adults with major depression may underutilize consumer-directed long-term care. Systematic underutilization would create disparities in outcomes, undermining program effectiveness. The Medicare Primary and Consumer-Directed Care Demonstration included a consumer-directed indemnity benefit that paid for goods and services not financed by traditional Medicare. Overall and for most categories of goods and services there was little difference in use and expenditures between those with and without major depression. However, among those using the benefit to hire in-home workers, arguably the most important consumer-directed purchase, average spending for workers was about 30% lower for depressed persons. While our findings are generally reassuring for public policy, future research is needed to verify that major depression is associated with less spending on in-home workers.     

Consumer-directed home and community services programs in eight states: policy issues for older people and government.

This study assesses consumer-directed home and community services for older persons by examining public programs that serve this population in eight states. These programs give beneficiaries, rather than agencies, the power to hire, train, supervise, and fire workers. Most stakeholders interviewed, in addition to the quantitative research, indicate that many older beneficiaries want to and can manage their services, although significant issues arise for persons with cognitive impairments. Research results suggest better, or, at least, no worse, quality of life for beneficiaries when they direct their services, although quality of services remains a contentious issue. For workers, consumer-directed care has some disadvantages, including fewer fringe benefits. With exceptions, state agencies have not provided extensive consumer or worker support or aggressively regulated quality of care.     

State experiences with implementing the Cash and Counseling Demonstration and Evaluation project

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 Brock's (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 York's participation in CCDE not possible. This case study also provides some lessons for other states interested in developing Cash and Counseling models.     

An Interview with Dr. Cornelius Foley: Humor,Palliative Care and Hospice

Dr. Cornelius Foley, a geriatrician, is Director of Parker Jewish Institute, New Hyde Park, New York. Dr. Foley discussed the use of humor in his work in a hospice and palliative care environment with Dr. Kathleen Monahan.     

Planning an integrated agriculture and health program and designing its evaluation: Experience from Western Kenya

Multi-sectoral programs that involve stakeholders in agriculture, nutrition and health care are essential for responding to nutrition problems such as vitamin A deficiency among pregnant and lactating women and their infants in many poor areas of lower income countries. Yet planning such multi-sectoral programs and designing appropriate evaluations, to respond to different disciplinary cultures of evidence, remain a challenge. We describe the context, program development process, and evaluation design of the Mama SASHA project (Sweetpotato Action for Security and Health in Africa) which promoted production and consumption of a bio-fortified, orange-fleshed sweetpotato (OFSP). In planning the program we drew upon information from needs assessments, stakeholder consultations, and a first round of the implementation evaluation of a pilot project. The multi-disciplinary team worked with partner organizations to develop a program theory of change and an impact pathway which identified aspects of the program that would be monitored and established evaluation methods. Responding to the growing demand for greater rigour in impact evaluations, we carried out quasi-experimental allocation by health facility catchment area, repeat village surveys for assessment of change in intervention and control areas, and longitudinal tracking of individual mother-child pairs. Mid-course corrections in program implementation were informed by program monitoring, regular feedback from implementers and partners’ meetings. To assess economic efficiency and provide evidence for scaling we collected data on resources used and project expenses. Managing the multi-sectoral program and the mixed methods evaluation involved bargaining and trade-offs that were deemed essential to respond to the array of stakeholders, program funders and disciplines involved.     

Clarifying the role of belief-motive explanations in multi-stakeholder realist evaluation

In realist evaluation, where researchers aim to make program theories explicit, they can encounter competing explanations as to how programs work. Managing explanatory tensions from different sources of evidence in multi-stakeholder projects can challenge external evaluators, especially when access to pertinent data, like client records, is mediated by program stakeholders. In this article, we consider two central questions: how can program stakeholder motives shape a realist evaluation project; and how might realist evaluators respond to stakeholders’ belief-motive explanations, including those about program effectiveness, based on factors such as supererogatory commitment or trying together in good faith? Drawing on our realist evaluation of a service reform initiative involving multiple agencies, we describe stakeholder motives at key phases, highlighting a need for tactics and skills that help to manage explanatory tensions. In conclusion, the relevance of stakeholders’ belief-motive explanations (‘we believe the program works’) in realist evaluation is clarified and discussed.     

Family and Friends as Respite Providers

Abstract

Consumer-directed service options in home- and community-based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers “direct-pay” program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.     

A Model for Change: Legislative Advocacy to Improving Access for the Uninsured and Underinsured in New York State 1

Advocates can successfully improve access to health care for people without health insurance. This article demonstrates the success of what began as a local advocacy effort to improve access to health care on Long Island, which later grew to become a major statewide advocacy movement. It explores the process taken by local coalition members to successfully fight for monumental public health legislation—first locally then statewide—to improve access to hospital care for the medically indigent. Using New York State as a model, it includes several approaches that could facilitate the enactment of legislation in other states. The experiences of New York advocates suggest that with focused collaborative efforts it is feasible to promote significant changes to public health laws to benefit the uninsured and underinsured.     

Mental Health Care for American Indians in Prison

Abstract

Based on an earlier finding that as many Native Americans in upstate New York received mental health care in prison as outside of prison during a 10-month period, this study was designed to investigate if prisons had become an alternative treatment option for Native Americans with a mental illness in New York State. The study was not able to answer this question due to the limited number of cases and to outside constraints. However, it is possible from the results to provide a picture of mental health needs and attitudes among Native American inmates which is surprising and instructive for those who provide psychiatric care to American Indians, either within or outside of prison walls. A noteworthy finding was the importance placed by these inmates on the use of culturally appropriate ceremonies to assist in their rehabilitation. Low rates of serious mental illness among the American Indian sample highlight the need for further study in this area.     

Health supervision of children in foster care.

The 1971--74 survey of the health needs and services provided to New York City children in foster care indicates a failure of the Medicaid program to ensure adequate routine care and treatment.     

The New York City neighborhood-based services strategy

The New York City Administration for Children's Services (ACS) instituted a neighborhood-based services system through the realignment of all foster care, preventive, and protective services along community district lines. ACS, with its community partners, also formed neighborhood-based networks to improve service coordination and collaboration among key community stakeholders and to shape a multisystem strategy tailored to each district informed by child welfare data. Based on analysis of neighborhood-specific census tract child welfare data, ACS initiated the Community Partnership to Strengthen Families project to address the disproportionate number of foster care placements originating from a small group of high-need communities, including Manhattan's Central Harlem. This article describes examples of specific strategies based on the Central Harlem experience.     

The unique character of involvement in multi-site evaluation settings

As the number of large federal programs increases, so, too, does the need for a more complete understanding of how to conduct evaluations of such complex programs. The research literature has documented the benefits of stakeholder participation in smaller-scale program evaluations. However, given the scope and diversity of projects in multi-site program evaluations, traditional notions of participatory evaluation do not apply. The purpose of this research is to determine the ways in which stakeholders are involved in large-scale, multi-site STEM evaluations. This article describes the findings from a survey of 313 program leaders and evaluators and from follow-up interviews with 12 of these individuals.Findings from this study indicate that attendance at meetings and conferences, planning discussions within the project related to use of the program evaluation, and participation in data collection should be added to the list of activities that foster feelings of evaluation involvement among stakeholders. In addition, perceptions of involvement may vary according to breadth or depth of evaluation activities, but not always both. Overall, this study suggests that despite the contextual challenges of large, multi-site evaluations, it is feasible to build feelings of involvement among stakeholders.     

The Hidden Costs of Informal Elder Care

Demographic, socio-economic, and political trends throughout the developed world have contrived to make elder care an issue of utmost policy importance. They also have led to sharp reductions in health and social program expenditures. Policymakers are looking to communities to help meet growing care needs because community care is believed to be better and cheaper than institutional care. However, these beliefs become untenable when costs beyond public sector costs are considered. In fact, informal care carries a number of hidden costs that seldom are considered in health and social policy discussions. This article introduces a taxonomy of the costs of informal elder care, which can be categorized as out-of-pocket expenditures, foregone employment opportunities, unpaid labor, and emotional, physical and social well-being costs. Then, an illustration is provided regarding how the taxonomy can be applied to understanding the incidence, magnitude, and distribution of these costs among stakeholder groups. This taxonomy can help inform ongoing debate about health and social policy reform.     

Where you stand depends on where you sit: Participation and reactions to change

Although a considerable body of research on strategic planning, organizational decision making, and organizational change has emphasized the importance of participation by key stakeholders for the successful management of organizational change, few empirical studies have produced in‐depth understanding of the differing perspectives of stakeholder groups according to their level of involvement in decisions about major change. This case study examines the differing perspectives and perceptions of stakeholders leading into and during the merger of two nonprofit arts organizations. It refines and enriches existing empirical research on the effects of participation on the implementation of change.     

Stakeholder management and program planning in German public theaters

Taking the example of a German public professional theater, this study is the first to analyze how stakeholder interests are managed in the process of program planning. We address the following questions: (1) What are the goals and interests of the most influential stakeholders? (2) How are these goals and interests reflected by theater management when deciding the season's program? (3) Which strategies does theater management apply to balance conflicting stakeholder goals and interests? Results of our qualitative study identify five decisions to be made with regard to program planning: selection of the season's theme, plays, stage directors, cast, and chronological order of productions. Four strategies of balancing conflicting stakeholder goals and interests are identified: setting priorities, combining stakeholder interests, focusing on neutral goals, and developing audiences.