PERFORMANCE IMPROVEMENT 2000

Chapter III

Compendium of HHS Agency FY 1999

Evaluations Completed and In Progress

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

MISSION: To provide analytical support and advice to the Secretary on policy development and assist the Secretary with the development and coordination of department wide program planning and evaluation activities.

The Assistant Secretary for Planning and Evaluation (ASPE) functions as a principal advisor to the Secretary on policy development and, in this capacity, conducts a variety of evaluation and policy research studies on issues of national importance. ASPE also is responsible for department wide coordination of legislative, planning, and evaluation activities. In its evaluation coordination role, ASPE has the following tasks:

Through the departmental evaluation planning process, ASPE has the capacity to identify crosscutting program or policy issues of particular concern to the Secretary and specific program and policy areas not covered by the HHS Agency evaluation plans. In these instances, ASPE initiates evaluations or collaborates with the agencies to conduct evaluations or policy assessments. For example, in recent years, ASPE has initiated projects to develop cost estimates for health financing issues in general, and specifically for the Medicare and Medicaid programs; the effects of managed care expansion on public health infrastructure; welfare-to-work approaches; long-term care alternatives; and studies evaluating alternative services for children at risk of harm from drug abuse, crime, child abuse, and other pathologies.

Another continuing evaluation objective of ASPE is to support and promote the development and improvement of data bases that HHS agencies and ASPE use to evaluate health care programs and health trends. For example, ASPE has been the major initiator in collaboration with the National Center for Health Statistics at the Centers for Disease Control and Prevention of the first comprehensive survey of people with disabilities in the United States. The first component of these new data was completed in FY 1996, and national prevalence data on disability are now available. The ASPE co-chairs and provides support to the HHS Data Council, which is charged with integrating key national surveys, such as linking health status indicators with indicators of well-being. The Department needs more comprehensive data sources to assess anticipated transformations in health and human services.

Finally, ASPE uses evaluation funds to promote effective use of evaluation-generated information in program management and policymaking. The latter is accomplished through the dissemination of evaluation findings and other activities, such as providing technical assistance to agencies in the development of performance measures.

Disability, Aging and Long-Term Care Policy

A Descriptive Analysis of Patterns of Informal and Formal Caregiving among Privately Insured and Non-Privately Insured Disabled Elders Living in the Community

Long-term care (LTC) expenditures account for almost 12 percent of total personal health expenditures--a threefold increase since 1960--leaving large numbers of elderly Americans vulnerable to catastrophic expenditures that can rapidly deplete their income and life savings. Limited public funding for long-term care expenses, coupled with tax incentives for individuals and companies to obtain private LTC policies, has heated up sales in the burgeoning private long-term care insurance market. This research was designed to answer such questions as: Does private LTC represent a "good buy?" How are benefits being used, and do claimants feel they are getting good value for the premiums they pay?" This research was designed to answer these questions and to provide basic socio-demographic and service utilization profiles for disabled private LTC insurance policyholders, and to compare such data and findings to the experiences of non-insured disabled community-dwelling elders. Finally, a discussion is provided on the implications of such findings on the service delivery system as well as on the design of private and public LTC programs and policies.

Medicare's Post-Acute Care Benefit: Background, Trends, and Issues to be Faced

A major policy response to the escalation in expenditures for Medicare's post-acute care benefits--from about $2.5 billion in 1986 to more than $30 billion in 1996 caused a change from retrospective cost-based reimbursement to case-mix adjusted prospective payment. Among the concerns is that the impact of these changes on cost, quality, and access is unknown. The impact of these changes on is unknown somehow failed to address many other cost, quality, and access concerns. Foremost among these is the concern that Medicare continues to treat the different types of post-acute care providers differently--in terms of payment, eligibility, coverage, and certification--even though the different types of providers may be becoming more and more similar in the types and intensity of services they deliver, as well as the types of patients they serve. Other concerns include policy-induced incentives to discharge patients for financial rather than quality of care reasons and access problems faced by heavy-care patients. This study examined recent changes in post-acute care payment policy, identified potential problems with Medicare's post-acute care services and explored promising solutions.

Preliminary Data from a Survey of Employers Offering Group Long-Term Care Insurance to Their Employees

This interim report provides timely information about current practices in the employer group Long-term care (LTC) insurance market that can inform federal policy makers and employers in deciding how to construct a group LTC insurance offering. It summarizes data collected from a survey of employers offering group long-term care insurance to their employees. The survey is part of a study funded by the Assistant Secretary for Planning and Evaluation (ASPE), Department of Health and Human Services (HHS) investigating current products and best practices in the employer group LTC insurance market. The survey found that among employers offering the product, access to coverage is greater in the employer market than in the individual market. The survey also found that surveyed employers usually limited the number of benefit choices considerably. For example, a majority offered three or fewer benefit amount options. Nearly all employers used a single LTC insurer. The data also suggests that the benefit features of employer group plans generally resemble individually purchased policies. While these findings may be indicative of trends in the employer LTC insurance market, the sample was not large enough to justify a claim that results are representative of all medium and larger employers offering LTC insurance. The final report of the survey's findings can be found in PIC ID #6718.1.

Risk Selection Among SSE Enrollees in TennCare

Risk selection in managed care plans occurs when the healthcare needs of beneficiaries enrolled in a specific plan differ systematically from risk assumption built into the premium calculation methodology. When this occurs, state administrators of Medicaid should adjust payments to managed care plans to ensure that each plan's payment accurately reflects the needs of its enrollees. Without such a payment system, problems for plans and beneficiaries are likely to arise. Plans with adverse selection (that is, a disproportionately large number of high-need beneficiaries) are likely to lack the resources required to deliver adequate care to their enrollees, forcing them, perhaps, eventually, to drop out. Plans with favorable selection (a disproportionately large number of low-need beneficiaries) will be paid more than necessary to provide care. The disability supplement to the existing Health Care Financing Administration (HCFA) evaluation of Medicaid 1115 waiver demonstrations in five states adds a disability focus to the study of the TennCare program in Tennessee. This supplement examined the experiences of disabled adults (physically disabled, mentally ill, mentally retarded, or developmentally disabled) and disabled children enrolled in the TennCare and TennPartners programs. The project conducted: (1) in-depth qualitative analyses of the state's experience in enrolling individuals with disabilities into managed care systems, and (2) quantitative analyses to examine costs and utilization data for these populations. In addition, the supplement conducted a survey of disabled consumers to examine issues of satisfaction, quality, health status and functioning. Findings indicated that risk selection is difficult to prevent or reduce, especially when attempting to maintain continuity of care in the transition to managed care Alternative reimbursement options, however, require the development of good data. See PIC ID 6289, 6289.1, 6166, and 6166.1.

State Welfare-to-Work Policies for People with Disabilities: Changes since Welfare Reform

This report was prepared by The Urban Institute for the Office of the Assistant Secretary of Planning and Evaluation (ASPE). The purpose of this study is to determine the extent to which states have used the flexibility provided under the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA) to change their welfare-to-work policies as applied to individuals with disabilities and caregivers. This is the first attempt to provide a nationwide overview of welfare- to-work policies for individuals with disabilities and caregivers. Key findings on work participation and time limit policies show that: (1) the majority of states are using the flexibility provided under PRWORA to increase participation in these programs among person with disabilities; (2) states that have 'broadened' participation requirements but have stopped short of requiring 'universal' participation have done so in a variety of ways; (3) states requiring universal participation among welfare clients use individualized service planning strategies that emphasize recipients' capabilities and acknowledge that the path to self-sufficiency may be long; and (4) states are in the early stages of assessing who among those on welfare may need assistance beyond 60 months.

Health Policy

A Longitudinal Model of Health Insurance: Employer Sponsored Insurance

To improve our understanding of the trends in health care coverage and costs, available data is being reevaluated. For years, this data has been used to estate costs and coverage, to identify trends, and to form policy regarding health insurance and health benefits. This report was initiated by ASPE to develop a longitudinal model for tracking the key indicators of employer sponsored insurance (ESI) to facilitate the identification of trends and to offer policy makers a set of consistent single point estimates based on analysis of available data sources. The subsequent longitudinal model developed by the research team is based on the March Current Population Surveys, from March 1990 through March 1998 (CY 1989 through CY 1997). Specific trends to be tracked include, but are not limited to: the overall level of employer sponsored insurance in the US (both counts and as a proportion of the population); the extent of employer sponsored insurance in own name (policy holder prevalence); the extent of employer sponsored insurance as a dependent; the prevalence of dual policy holder families. The authors had to adjust the Current Population Survey (CPS) data because changes in survey and sample frame over time make it less useful for longitudinal study without adjustments. The adjustments were made to the historical data in order to be able to a look at trends in employer sponsored coverage from 1990 to the present. The report concludes by stating that the current set of adjusted files appears to address the problems caused by survey and sample frame changes, and generates coverage estimates roughly consistent with those implied by the Survey of Income and Program Participation.

All Under One Roof: Mixed -Status Families in an Era of Reform

This report documents the prevalence of mixed immigration status families and discusses some of the immigration and citizenship policies that drive their formation. It identifies a number of the challenges that mixed-status families pose for achieving the goals of recent welfare and illegal immigration reform laws. It explores how recent curbs on noncitizens' use of public benefits may have the unintended effects of "chilling" citizen children's use of benefits. The report examines how recent laws limited undocumented immigrants' ability to adjust from illegal to legal status, effectively perpetuating certain mixed-status families. They do so by freezing a growing number of parents and children into differing statuses: parents as undocumented immigrants or "outsiders", children as citizens or "insiders." The citizen children in these families may not receive the same opportunities as other citizen children due to their parents' legal status. One effect, according to the report, is to treat citizen children in mixed-status families as second-class citizens. One ready solution to this problem would be to eliminate birthright citizenship. However, its adoption would signal a shift toward the approach taken by many European nations, which treat not just newcomers but also their children as outsiders, thereby perpetuating a type of hereditary disadvantage that departs from U.S. historical tradition.

Analysis of Children's Health Insurance Patterns: Findings from the SIPP Executive Summary

This report summarizes working using the 1992 panel of the Survey of Income and Program Participation (SIPP) to provide the most detailed look yet at the dynamics of health insurance coverage among children and the relationship between Medicaid eligibility and insurance coverage. The findings indicate from October 1992 to September 1994, between 12.4 and 13.3 percent of children under 19 were uninsured at any one point in time, with one in four children (27.1 percent) uninsured for some period of time over the two years. the findings highlight the importance of shifting some attention from studying why children do not enroll in Medicaid to the question of why children lose Medicaid coverage when they may still be eligible. The findings highlight how Medicaid eligibility policy affects the relationships among income, child age, and coverage. The findings also highlight the substantially lower participation rates for children who are not cash assistance participants. This reinforces the importance of strong outreach to achieving high levels of CHIP participation and highlights ways of targeting outreach to reach diverse subsets of children. The findings also highlight the importance of not just enrolling children in Medicaid or CHIP but also retaining them in the programs.

Analysis of Prescription Drug to Over-the-Counter (Rx-to-OTC) Switch Movement

Approximately 600 over-the-counter (OTC) products currently available use ingredients and dosages available only by prescription 20 years ago. While there has been a steady stream of OTC switches since the mid-1970s, the number of switches has accelerated in recent years. Between 1988 and 1994 there were 14 switches, while in the last three years there were at least 19 switches. There are a number of possible reasons for this trend, including: (1) a growing emphasis on individual autonomy and self-help; (2) a trend toward deregulation in the U.S.; (3) healthcare cost containment efforts; and (4) pharmaceutical industry self-interest /profit. The issue of Rx-to-OTC switching deserves considerable attention because of the large number of people who could be affected by the trend, including consumers, pharmaceutical companies, physicians, pharmacists, and payers. The purpose of this project was to provide a comprehensive review and analysis of the impact of the Rx-to-OTC switch movement, particularly the more recent changes, in order to inform policy and define relevant research questions. The study contains a literature review on the subject; a summary of interviews with such key informants as pharmacists, consumers, and physicians; data analyses providing evidence of the magnitude of OTC sales and the importance of recent switch drugs within the OTC market; analyses related to the impact of OTC switch drugs on clinical practice patterns; and data from state Medicaid plan coverage of OTCs.

PERFORMER: Northwestern University, Center for Health Services Policy
Evanston IL

Assessing the Performance of Organ Transplant Programs: Liver and Heart Transplantation

In its role under the National Organ Transplant Act as the responsible steward of the program of solid organ transplantation in the United States, the Department of Health and Human Services has carried out analyses of the three critical issues in transplantation... (1) What is the likelihood that, having been declared a transplant patient by being placed on a waiting list, the patient will actually receive an organ within a reasonable amount of time, say one year? (2) What is the likelihood that the patient will, instead, die while awaiting transplantation? (3) And what is the probability that the patient will still be alive one year after having been placed on the waiting list, whether or not he or she received a transplant? The findings indicated in both liver and heart transplantation, about two-thirds of the deaths within a year of listing occur while awaiting the transplant. The two measures of mortality are strongly correlate, with about 50% of the variation among centers in risk-adjusted survival accounted for by risk-adjusted mortality on the waiting list. In contrast, there is little correlation between the risk-adjusted rate of transplantation and risk-adjusted survival, none in the case of the liver. This reinforces the point that the early performance of a transplant is not necessarily the best care that can be provided to a patient. The best care consists of a broad constellation of practices of the listing center and of other hospitals and care-givers to which the patient is subjected while awaiting transplantation, as well as during and after the transplantation itself.

PERFORMER: Office of the Assistant Secretary for Planning and Evaluation, Office of Health Policy
Washington, DC

Baseline Information for Evaluating the Implementation of the Health Insurance Portability and Accountability Act of 1996: Final Report

The Health Insurance Portability and Accountability Act (HIPAA) ensures access to insurance for some employer groups and individuals who previously were unable to purchase adequate coverage. The Department of Health and Human Services is required to report to Congress on the effects. Therefore the Health Care Financing Administration contracted with RAND and the Institute for Health Policy Solutions (IHPS) to develop the contextual information needed for an evaluation and to develop a design for the evaluation. Four central tasks were accomplished and reported in this final report: (1) developed a database which describes the regulatory environment in each state prior to HIPAA to measure regulatory actions states have taken to comply with HIPAA's requirements; (2) reviewed the literature to address issues that have arisen during HIPPA's implementation and summarized the expected effects of HIPAA's provisions; (3) reviewed the strengths and weaknesses of extant data that might be used in the HIPAA evaluation and (4) developed a plan to evaluate the effects of HIPAA on the accessibility and affordability of insurance in the group and individual insurance markets.

Chartbook on Children's Insurance Status: Tabulations of the March 1998 Current Population Survey December 1998

This chartbook examines demographic and other characteristics of insured and uninsured children in the United States. It is based on data from the March 1998 Current Population Survey (CPS) and reflects children's insurance status during calendar year 1997. For the purposes of this chart book, the term "children" applies to all U.S. citizens and non-citizen residents under age 18. Key findings include: 10.7 million children, 15% of the population under age 18, are uninsured. In the March 1997 survey 10.6 million children or 15% were uninsured; 45 million children (63%) are covered under employer-sponsored insurance. This is consistent with the proportion of individuals in the overall population who are insured through an employer.

PERFORMER: Office of the Assistant Secretary for Planning and Evaluation, Office of Health Policy
Washington, DC

Enabling Services Methodology Workshop

Enabling services was defined in a previous study as "services that facilitate access to medical care and/or support individuals in managing medical conditions". This project sought to address enabling services issues by: (1) exchanging information regarding what is known and unknown about enabling services in primary care settings, particularly in managed care environments, costs, efficacy, cost-effectiveness and new research efforts; (2) identifying key policy questions related to enabling services, particularly as used in managed care settings; (3) identifying major methodological questions that studies of these services present, both generally and in managed care settings, and strategies for overcoming them; and (4) developing a broad-based research agenda for consideration by the many public and private sector organizations which pay for, or otherwise have interests in, these services. The report presents findings, identifies questions regarding enabling services from the perspectives of various stakeholder groups, and considers strategies and approaches to addressing questions about enabling services.

Linking State-Level Health Expenditure and Utilization Data to Identify Sources of Variation in Health Service Prices, Utilization, and Expenditures

The debate over comprehensive health reform in 1993 and 1994 revealed many strengths and weaknesses in the U.S. health care system. The policy development process underlying that debate exposed the limits of collective analytic capacity to explain the implications of expected changes in our health system. Due to budget constraints, the research community is severely limited in supporting state-specific estimates and data. This Urban Institute report accesses the combination of the expenditure data from The Health Care Financing Administration, with utilization data from The Health Resources and Services Administration to yield state- and service-specific prices that are analytically meaningful. The major finding is that the empirical models at the state level performed reasonably well - over 80% of the variance in the inpatient dependent variables (prices, utilization, and expenditures) is explained, as well as over 50% of the variance in these variables for outpatient services. This kind of model could be useful for both federal and state policy analysts to analyze market trends and to stimulate the effects of proposed policies.

The Child Health Insurance Program: Early Implementation in Six States

Research has demonstrated that children with health insurance coverage have greater access to medical care than those without coverage. On average, those with health insurance visit doctors more frequently than those without coverage. A 1993 survey, for example, found that of all children who had no physician visits in the past year, 39 percent were uninsured compared to 20 percent of children with private coverage. Children with health insurance coverage pay fewer visits to the emergency room in an average year than those without coverage. Those with health insurance develop fewer chronic illnesses, and those they do develop are treated more successfully than the chronic illnesses of uninsured children. To help reduce the number of uninsured children and to increase their access to medical care, Congress established, in 1997, a new Children's Health Insurance Program (CHIP) as Title XXI of the Social Security Act. Intended to supplement--not supplant--Medicaid, CHIP is designed to find and enroll "targeted low-income children" whose family income puts them above the Medicaid eligibility threshold, but below an income level that makes private health insurance premiums affordable. This study was designed to understand and document the decisions in six States regarding the: (1) planning process; (2) key factors affecting the program design in their initial plans submitted to HHS; (3) CHIP program design as a separate State-initiated program, a Medicaid expansion, or a combination; (4) choice of income eligibility levels; (5) parameters of State-initiated health insurance programs implemented prior to CHIP; and (6) implementation of specific features of their CHIP programs during the early months.

Trends in Noncitizens' and Citizens' Use of Public Benefits Following Welfare Reform: 1994-97

This report uses the Census Bureau's Current Population Survey (CPS) to document national trends in immigrants' use of public benefits in the period following welfare reform. Specifically, it examines changes in participation between 1994 and 1997 reflected by the March CPS. It is emphasized that most legal immigrants and refugees remained eligible for welfare and Medicaid benefits throughout the period examined (1994 through 1997). The principal findings are: (1) use of public benefits among noncitizen households fell more sharply (35 percent) between 1994 and 1997 than among citizen households (14 percent); (2) refugees experienced declines (33 percent) that were at least as steep as those within the noncitizen population; (3) for low-income populations (i.e., with incomes below 200 percent of poverty), program usage also fell faster for noncitizen than citizen households; (4) when welfare use among all households is examined, noncitizen participation levels were higher than citizens' in both 1994 and 1997, but poor households (i.e., with incomes under 200 percent of poverty), noncitizens' participation rates in 1994 were no different from those of citizens; by 1997, however, levels had declined so that noncitizens had lower participation rates than citizens; (5) neither naturalization nor rising incomes accounted for a significant share of noncitizens' exits from public benefit use.

Using National Survey Data to Analyze Children's Health Insurance Coverage: An Assessment of Issues

The purpose of this report is to discuss key analytic issues in the use of national survey data to estimate and analyze children's health insurance coverage. One goal was to provide staff in the Office of the Assistant Secretary for Planning and Evaluation (ASPE) with information that will be helpful in reconciling or at least understanding the reasons for the diverse findings reported in the literature on uninsured children. The second major objective was to outline for the broader research community the factors that need to be considered in designing or using surveys to evaluate the number and characteristics of uninsured children. The single most important lesson learned from the review, according to the report, is how much estimates of the number and characteristics of uninsured children are affected by measurement error. Until progress is made in separating the measurement error from the reality of uninsurance, policy solutions will continue to be inefficient and our ability to measure our successes will continue to be limited.

Human Services Policy

Adolescent Decision Making: Implications for Prevention Programs

Efforts to reduce teen marijuana use, smoking and pregnancy are not new, but they are now being debated in a policy climate characterized by frustration at past attempts to address teen behavior and renewed efforts to take strong actions to reduce these behaviors. The role of decision making processes in these interventions is a topic that has generated a substantial core of new research. This project convened a January workshop and prepared a summary report to: 1)identify the major lessons learned from the last decade of research on adolescent decision making, particularly as they bear on efforts to reduce behavior among adolescents; 2)discuss the results of research on efforts to intervene in adolescent behaviors; and 3)discuss the implications of this research for alternative approaches to reducing behavior among the Nation's youth, particularly in the areas of substance abuse and sexuality. The report covers the following topics: the decision-making framework, the world of adolescence, media influences, programs for adolescents, and issues for youth programs.

PERFORMER: National Academy of Sciences, Board on Children and Families
Washington, DC

Blending Perspectives and Building Common Ground

Many in the child welfare field have recognized for years that substance abuse is central to child welfare issues. But with the implementation of the Adoption and Safe Families Act and renewed emphasis on achieving permanency for children in the child welfare system, finding effective ways to address concurrent substance abuse and child maltreatment problems in families takes on renewed importance. This report grew out of a request by the Congress for more information to guide Federal policies that would allow child welfare agencies and partners in the substance abuse treatment field to better address the needs of parents whose substance abuse problems rendered them unable to care for their children. This report fulfills the legislative mandate that requested the Department of Health and Human Services to: describe the extent and scope of the problem of substance abuse in the child welfare population; the types of services being provided; the outcomes resulting from the provision of such services; and to include recommendations for any legislation that may be needed to improve coordination in providing such services to such population. The findings and conclusions reached by the report indicate: it is clear that throughout the child welfare system, but especially with respect to children in foster care, alcohol and other drug abuse is recognized as a major contributing factor to child neglect and abuse and as one of the key barriers to family reunification; timely substance abuse services are key to achieving permanency for children; collaboration between child welfare and substance abuse treatment agencies must be improved.

PERFORMER: Office of the Assistant Secretary for Planning and Evaluation, Office of Health Policy
Washington, DC

Enhancing the Well-Being of Young Children and Families in the Context of Welfare Reform: Lessons from Early Childhood, TANF, and Family Support Programs

Roughly two-thirds of the recipients of federally-subsidized cash assistance are children, nearly half of whom are under the age of six. While such children grow up in an environment which puts them at risk, a decade of cumulative research suggests that child development and family support programs can make a difference. This report identifies and presents profiles of promising Federal, State, and/or community-based health and human services programs believed to be enhancing the health and development of children in the context of welfare reform. It seeks to answer three questions: How are child development and family support programs serving low-income families with young children responding to new welfare policies and practices? What kinds of partnerships (e.g., state-local, public-private, interagency) are developing between those serving low-income families with young children and those implementing welfare changes? What opportunities and challenges are emerging for early childhood programs and agencies implementing welfare changes as they strive to improve outcomes for both adults/parents and young children? The report examines case management strategies, child assessment programs, links between pre-kindergarten and child care programs, school-readiness programs, assistance for families who are coping with domestic violence, substance abuse, and other risk factors, and other workings of these programs.

Estimated Effects of the Optional Review of Child Support Orders for TANF Cases

The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 made the review and modification of child support awards for those receiving welfare assistance optional, a change from prior law which required such reviews every three years. Given that States now have a policy choice, this project sought to inform that choice by developing national estimates of the financial effects of not reviewing child support awards for welfare recipient families on State child support collections. This project provided estimates of the financial effects on the Federal and State governments (how such a discontinuance would affect child support offsets to cash assistance payments.) First, the study compared the two policy regimes, estimating government savings from several sources. Then these estimated savings were combined with estimates of the cost of reviewing and modifying orders to get a total net fiscal effect. Finally, the study examined the separate effects on each state and the federal government, factoring in changes in incentive payments. The study pointed out that the effects on governmental revenues are not the only relevant factors to consider in evaluating optional versus mandatory child support award reviews. For example, if mandatory review increases collections but they accrue to the resident parent family rather than the government, the policy may still be advantageous in terms of increasing the well-being of economically vulnerable families.

Evaluating Welfare Reform: A Framework and Review of Current Work

The Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) of 1996 changed the nation's social welfare system by replacing a federal entitlement program for low-income families called Aid to Families with Dependent Children (AFDC) with state-administered block grants, the Temporary Assistance for Needy Families (TANF) program. The Office of the Assistant Secretary for Planning and Evaluation (ASPE) of the Department of Health and Human Services (DHHS) asked the National Research Council to convene a panel to study and recommend the best strategies for evaluating the effects of welfare reform programs and the data needs for conducting useful evaluations. The interim report from the panel made the following recommendations that were consistent with HHS's research agenda: (1) DHHS should be proactive in identifying important current and emerging issues for welfare policies at both federal and state levels, a strategy which may, in turn, lead the way to establishing priorities for investment in data and research. (2) DHHS should define the key populations of interest for welfare policy analysis in its research agenda and assure that its grant and contract research programs adequately cover all important population groups for welfare reform. In particular, to consider the effects of changes in welfare policies on the outcomes of low-income populations, it is important to study not only those who leave the system but those who stay as well as potential applicants who are diverted from programs or who do not apply. (3) DHHS should make improving capabilities for data collection and research on social welfare programs on both state and federal levels a priority. (4) DHHS should exercise leadership in working with states, localities, and research organizations to achieve both intra- and inter-state comparability of data and research on the effects of welfare reform. (5) DHHS should document TANF policies in each state and localities.

Exits from Welfare and Local Entry-Level Labor Markets

The current debate surrounding welfare reform pits those who view long-term welfare participation as a problem of "welfare dependency" resulting from poor work attitudes against those who view it as a problem of "working poverty" with poor, time- constrained single mothers using welfare to supplement low-wage and contingent employment. Presented in this report are estimates of the relative influence of individual characteristics, family structure and local entry-level labor market conditions on welfare durations and transitions into work. Contrary to previous research, the findings suggest that: (1) local labor market conditions are more important than individual and family level factors in predicting exits from welfare; (2) most women on welfare are working before, during and after a welfare spell; and (3) long-term, intermittent welfare participation may be more accurately understood as a problem of "working poverty."

PERFORMER: University of North Carolina at Chapel Hill, School of Public Health
Chapel Hill NC

Fixing to Change: A Best Practices Assessment of One-Stop Job Centers Working With Welfare Recipients

This study was undertaken in an effort to assess the impacts of recent policy, organizational, and technology changes on the delivery of employment services to welfare recipients. The study examines five of the most developed and promising One- Stop Job Centers around the country to find out what makes them work well, and to understand their potential for moving people from welfare to self-sufficiency. This study does not provide a formal evaluation of these model programs, but identifies those approaches and practices that seem to be working well in various locations. The report identified three key factors which tend to contribute to the success of the One-Stop Job Center: the degree of integration of services, locating welfare and employment services in the same place, and individualized attention to clients. The centers experienced common problems in such areas as quality and design of data systems as well as such common challenges in reaching the welfare population as substance abuse mental illness. Welfare-to-work programs tended to place a their clients in a fairly limited set of typical occupations, including: certified nurse assistant, clerical support, light manufacturing, sorting and packaging, retail trade, and self employment. Based on limited data that varies from site to site, the employment and wage outcomes reported for a sample of welfare clients referred to a One-Stop center during a given 12-month period hovers between 40 and 50 percent, with wages typically averaging between $5.50 and $6.50 an hour. These jobs were clearly dominated by entry-level work and not sufficient to support a family without continued public assistance.

Get Organized: A Guide to Preventing Teen Pregnancy

This practical tool kit for families which want to prevent teen pregnancy is divided into three volumes: Focusing on Kids, Involving the Key Players, and Making It Happen. Volume One, Focusing on Kids, involves the following topics: promising approaches to preventing teen pregnancy, tailoring pregnancy prevention to stages of adolescent development, developing pregnancy prevention programs for girls and young women, involving teen boys and young men in teen pregnancy prevention, and involving youth in teen pregnancy prevention programs. Volume Two, Involving the Key Players, covers the following topics: involving parents and other adults, involving the faith community, involving schools, and involving healthcare professionals. Volume Three, Making it Happen, covers the following topics: getting your community involved in a teen pregnancy prevention project, tailoring a program to your community through needs assessment, planning and carrying out a teen pregnancy prevention project, raising funds for teen pregnancy prevention, working with the media to promote teen pregnancy prevention, building evaluation into your work, and moving forward in the face of conflict.

Getting off the Ground: Early Implementation Findings about Child Support Enforcement, Head Start, and Child Care Collaboration Demonstrations

The purpose of this report is to provide early findings on the implementation of five State-initiated demonstrations designed to explore collaborations between child support enforcement, Head Start, and child care programs. The early findings indicate that the demonstration projects are making progress in meeting their goals. Also, the partner's agencies have gained an enhanced understanding and trust, and the knowledge base of Head Start and child care staff about child support services and vice versa, has broadened. The second goal of the project, to increase the access of families to child support services through the cooperation and assistance of child care and Head Start programs is being realized. These demonstration grants have increased the willingness and ability of Head start and child care staffs to collaborate with child support agencies. Some agreement has also been reached toward the third goal of the project--to increase child support staff's understanding about the importance of father's nonfinancial involvement in the lives of their children. An important task remaining for the demonstrations is to find ways that child support staff can assist child care and Head Start staffs in increasing voluntary establishment of paternity and payment of support.

Indicators of Welfare Dependence: Annual Report to Congress, October 1998

The Welfare Indicators Act of 1994 requires the Department of Health and Human Services to prepare annual reports to Congress on indicators and predictors of welfare dependence. This Annual Report on Welfare Indicators, October 1998 is the second of these annual reports. Welfare dependence, like poverty, is a continuum, with variations in degree and in duration. The bipartisan Advisory Board on Welfare Indicators proposed the following definition of dependence on welfare: A family is dependent on welfare if more than 50 percent of its total income in a one-year period comes from AFDC/TANF, Food Stamps and/or SSI, and this welfare income is not associated with work activities. Welfare dependence is the proportion of all families who are dependent on welfare. This report includes a number of indicators addressing welfare recipients, dependence, and labor force attachment. Selected findings include the following: In 1994, the more recent year for which SIPP data are available, 5.6 percent of the total population were dependent. This is approximately the same rate as the previous two years; long-term dependence is relatively rare. Only 4 percent of those who were recipients in 1982, or less than 1 percent of the total population, received more than 50 percent of their income from AFDC and Food Stamps in 9 or 20 years over the next decade; in 1994, 46 percent of AFDC recipients, 38 percent of SSI recipients and 57 percent of Food Stamp recipients were in families with at least one person in the labor force; and individuals who receive AFDC or Food Stamps as children are more likely to receive benefits as adults.

PERFORMER: Office of the Assistant Secretary for Planning and Evaluation, Office of Health Policy
Washington, DC

Positive Youth Development in the United States: Research Findings on Evaluations of Positive Youth Development Programs

The past 30 years have seen widespread proliferation of prevention and positive youth development programs. During this time, prevention programs have been the subject of much evaluative study. More recently, the field has witnessed a greater focus on evaluation of programs emphasizing positive youth development. Interest in positive youth development has grown as a result of studies that show the same individual, family, school and community factors often predict both positive and negative outcomes for youth. Such factors as developing strong bonds with healthy adults and maintaining regular involvement in positive activities not only create a positive developmental pathway, but can prevent the occurrence of problems. While encouraging, these findings highlight the need for systematic review across programs to further their general acceptance by the field. Accordingly, the goals of this study were to: (1) research and establish both theoretical and empirical definitions of positive youth development and related concepts; (2) document and describe common denominators between risk and protective factors implicated in youth problem behavior; (3) identify and summarize the results of evaluations of positive youth development interventions; and (4) identify elements contributing to both the success and lack of success in positive youth development programs and program evaluations, as well as potential improvements in evaluation approaches.

PERFORMER: University of Washington, Social Development Research Group
Seattle, WA

Post-Exit Earnings and Benefit Receipt Among Those Who Left AFDC in Wisconsin

From July 1995 to July 1996, single-parent Aid to Families with Dependent Children (AFDC) caseloads in Wisconsin declined sharply, by 23 percent. This is the third and final report in a series that explores the characteristics of those mother- headed families who left AFDC after July 1995 ("leavers"), compared to those who remained ("stayers"), and examines how they fared during the 15 months after they left the Wisconsin AFDC program. Specifically, this study asks: (1) What proportion of leavers returned to AFDC, and what characteristics are most closely associated with that return? (2) Did AFDC leavers and their families have incomes greater than (a) the maximum benefits they would have received under AFDC or (b) their incomes immediately before leaving AFDC? (3) Did leavers and their families escape poverty after leaving AFDC? (4) How much did leavers use other public assistance programs, and what household characteristics most affected the likelihood that they would do so? (5) To what extent did leavers work and earn after they left AFDC, and how did these trends compare to the work and earning patterns of the stayers? (6) Did the earnings of the leavers grow over time, and, if so, to what extent? (7) What family and economic characteristics among leavers were most closely related to the probability of working at all, and of obtaining relatively high earnings? and (8) What kinds of jobs did leavers find, and which jobs seemed to offer the highest wages?

State Child Access and Visitation Programs: A Preliminary Report for Fiscal Year 1997 Funding

This report presents preliminary findings for 131 local projects in 28 States and two Territorities receiving funding for Child Access and Visitation Grants under the Personal Responsibility and Work Opportunity Reconciliation Act of 1996. Nearly 20,000 individuals were served during the first year of this new grant program, and this figure is expected to rise, significantly, when all States report. Wide discretion is permitted in States' determination of the activities to fund at the local level. Most States and their local projects report providing a mix of services. There are services provided with respect to urban, suburban, and rural locations and administration by state and county agencies, courts, and non-profit organizations. There is also a balance regarding the racial and ethnic mix and marital status--divorced, separated, never-married-- of the population served. Most individuals received parenting education, assistance in developing parenting plans, and mediation services, and the majority of individuals referred completed their program activities.

State Financing of Child Support Enforcement Programs: Final Report

The primary goal of the Child Support Enforcement (CSE) program is to ensure that children are supported financially by both parents. This program is a shared undertaking involving Federal, State, and local efforts. The subject of this report is how states finance their share of the cost of program activities. The following questions are addressed: (1) what are the various sources of funding for the State and local share of Title IV-D expenditures, and what share of expenditures does each source represent? (2) how is the State share of retained Temporary Assistance for Needy Families (TANF) program collections allocated at the State and local level? (3) how are Federal incentive payments allocated at the State and local level? Information was collected through telephone contacts with State IV-D Directors and/or IV-D fiscal staff in every state. The results show that: (1) most programs utilize at least three different funding sources to finance the State and local share of CSE expenditures; (2) State and local CSE financing structures are diverse and their funding sources are mixed in a variety of ways.

Synthesis of Research on Family Preservation and Family Reunification Programs

This report examines research about the outcomes of family preservation and family reunification programs, about relationships between service characteristics and outcomes, and the response of subgroups of clients to services. The report finds that: (1) little evidence exists to show that these programs have their intended effects; (2) problems with study construction and sampling issues contribute to a general lack of information about the effects of these programs in preserving or reunifying families, on preventing maltreatment, and on foster care placements; (3) in general, a review of research suggests that family preservation programs have very modest effects on family and child functioning; (4) evaluations of family reunifications are in a nascent stage, and require further elaboration of goals and expected outcomes of the programs; (5) evaluations must use the most rigorous methods whenever possible (i.e., randomized experimental designs) because early uncontrolled studies yielding misleading findings; and (6) more research must be done on the differential impact of these programs on various subgroupings of families. Furthermore, the report finds that outcomes other than placement should be used to detect potential benefits of these programs, and that more attention should be placed on contextual factors affecting outcomes, including community characteristics and the availability of community services. See also PIC ID Nos. 5337 and 5337.2. (Interim report 76 pages.)

Program Systems

Online Registry of State Health Data Policy Initiatives-Update

In 1996, HHS contracted The Lewin Group to develop a registry of projects that integrates health information systems at the state level. The registry is located on the World Wide Web at http://aspe.hhs.gov/statereg/index.htm. The home page compiles, abstracts, and indexes summary information on data integration projects for all 50 states and the District of Columbia. The purpose of the registry is twofold. First, the registry gives Federal policymakers a central source for researching the types of integration activities being pursued by individual states. Second, the registry, facilitates communication among states regarding data integration activities and related data policy activities. The project: (1) provides a resource for state and local policymakers as they seek to identify others who have pursued information integration activities; (2) facilitates information sharing and collaboration across states; and (3) assists Federal policymakers in monitoring, assessing, and supporting state-level integration activities. Relevant state integration projects were identified through: (1) contacts with state officials responsible for hospital discharge databases, vital statistics, Medicaid data, and any other major information system or data-related offices; (2) conferences on state data integration activities; (3) grantee information related to specific funds which target information activity; (4) state health department web sites; and (5) recommendations from people interviewed. The project was completed in 1997. A second contract resulted in two updates to the materials for the website. The most recent update should be posted on the site by March 1999. The database is administered by the Office of the Assistant Secretary for Planning and Evaluation. (Final report is a web site: http://aspe.hhs.gov/statereg/index.htm.)

Practical Lessons: The 1998 National Symposium on Homelessness Research

This report compiles a review of more than a decade of research and expert consensus on solutions to homelessness in the United States. This manual, published by the Departments of Health and Human Services and Housing and Urban Development, is for those concerned with and working to solve the problem of how to provide services to homeless persons most effectively. It is a compilation of research performed which stresses the importance of street-based outreach services to homeless individuals, intensive case management to help homeless persons gain access to treatment and maintain residential placement and techniques for building the local conditions that are needed to end homelessness. The report documents successes for working with homeless persons and acknowledges that homelessnesss is not a simple issue and that dimensions of the economy, supplies of affordable housing, disability, family support and individual characteristics all interact to affect who becomes homeless. The complexity of cause must be accommodated when researching and implementing solutions. This HUD/HHS collaborative project provides a broad and critical review of the nature of homelessness and characteristics of the homeless population; the special needs of homeless persons with disabilities; critical support services and other assistance homeless people need to become more self-sufficient; and new approaches to the problem.

Strategies for Obtaining Public Health Infrastructure Data at Federal, State, and Local Levels: Final Report

This project enabled the development of a strategy for obtaining comprehensive baseline and trend data on the public health infrastructure at the national, state, and local levels. The strategy, developed through an intergovernmental partnership, builds on data already being collected. Its purpose is to characterize the capacity and functioning of the full range of federal, State, and local government agencies responsible for carrying out essential public health functions, such as those related to substance abuse, mental health, and environmental health. Furthermore, data needs are also considered. These include those relating to: (1) the provision of public health services; (2) providers of public health services; (3) expenditures on such services; (4) revenue sources and uses; and (5) the extent to which population-based public health services cross-subsidize personal health care services, and vice versa. This kind of information in essential in assessing the impact of rapid changes in the health care system on the public health infrastructure, and will serve as a comprehensive basis for health services research in public health. Project activities were guided by a steering group consisting of 15 members, including representatives of federal, State, and local agencies. In addition, the project: (1) assessed the need for and uses of public health infrastructure data by various parties; (2) identified and evaluated current and prior data sources; (3) considered typologies, definitions, and measurement concepts; (4) and developed alternate approaches for obtaining public health infrastructure data that are scientifically sound, feasible, and cost-effective. The project built on work that has already been accomplished in developing consensus definitions for essential public health services, evaluating public health performance, and obtaining information on public health expenditures. The project resulted in a final report and three appendices.

In-Progress Evaluations

Disability, Aging and Long-Term Care Policy

A Primer for States and Consumers on Medicaid Home and Community-Based Services
A Study of Home Health Practice Variations Study
Analysis of Patterns of Post-Acute and Chronic Care Services Use Among Disabled and Non-Disabled Medicare Beneficiaries: 1989-1994
Analysis of the Disability Supplement to the National Health Interview Survey
Assessment of Home Care Benefits Used by Holders of Private Long Term Care
Characteristics of Nursing Home Residents
Development and Validation of a Performance Measure Set for the Evaluation of Medicaid Services Rendered to People with Developmental Disabilities
Evaluation of Practice in Care (EPIC)
Evaluation of the District of Columbia's 1115 Waiver for Children with Special Health Care Needs
Evaluation of the Oregon Medicaid Reform Demonstration
Long Term Care Microsimulation Model
Longitudinal Study of Welfare Reform and Its Implications for Persons with Disabilities
Managed Delivery Systems for Medicare Beneficiaries with Disabilities and Chronic Illnesses
Medicare Home Health Practice Variations
Medicare Post-Acute Care: Quality Measurement
Monitoring the Health Outcomes for Disabled Medicare Beneficiaries
Outcomes and Costs Associated with Medicare Post-Acute Services in Skilled Nursing Facilities, Rehabilitation Hospitals/Units, and Home Health Settings
Personal Assistance Services "Cash and Counseling" Demonstration/Evaluation
Private Payers Serving Disabled Individuals and Research Synthesis on Managed Care for Persons with Disabilities
Research on Employment Supports for People with Disabilities
State Activities in Serving Persons with Disabilities in Managed Care Arrangements
Synthesis and Analysis of Medicare Hospice Benefit

Health Policy

Access and Utilization of New Antidepressant and Antipsychotic Medications
An Inventory of Federal HIV-Related Databases
Assessing Core Capacity for Infectious Disease Surveillance
Assessment of Approaches to Evaluating Telemedicine Programs and Projects
Comparative Analysis of Decliners of Employer-Based Health Insurance
Consequences and Cost of Intimate Partner Violence
Construction of an Integrated Measure of the Burden of Disease
Consumer Protection in Private Insurance: State Implementation and Enforcement Experience
Consumer Protection in Public Health Programs
Developing a Framework for Domestic Infectious Diseases Surveillance
Employer Decision Making in Health Care Coverage
Evaluating the Effects of Direct-to-Consumer Advertising on Consumers
Evaluation of Seafood Hazard Analysis Critical Control Point (HACCP) Program
Evaluation of the Projects for Assistance in Transition from Homelessness (PATH) Program
EZ/EC Strategies for Addressing Health Issues
Factors Influencing Effective Dissemination of Prevention Research Findings by DHHS
Follow-Up to Clustering Co-Occurrence Youth Risky Behaviors
Impact of Medicare HMO Enrollment on Health Care Costs in California
Innovative Coverage of Health Promotion, Clinical Preventive Services, and Other Coverage Issues in the Private Sector
Low-Income and Low-Skilled Worker's Involvement in Non-Standard Employment
Medicare Supplement Insurance: Structure, Change & Implications
Preventing Abusive Intimate Relationships Among Adolescents
Safety Net Framework Project
Safety Net Project: Exploring State Use of Medicaid Disproportionate Share Funds to Enhance Provision of Care to Uninsured
State Activity Monitoring Medicaid Managed Care for Children with Special Health Care Needs
State Implementation of Immunization Recommendations and Guidance
The Changing Structure of Health Insurance Markets
Understanding Health Plan Accreditation and Its Potential to Promote the Consumer Bill of Rights and Responsibilities

Human Services Policy

A Research Synthesis of the Findings from ASPE's "Leavers" Grants
Abstinence-based Teen Pregnancy Prevention Efforts Targeting Boys
Child Outcome Study of the National Evaluation of Welfare-to-work Strategies: Two-Year Impacts
Diagnosed Health Conditions and Health Care Service Utilization of Children in Foster Care
Disaggregating the TANF Child-Only Caseload in Three States
Domestic Violence and Welfare: An Early Assessment
Economic and Health Status of Immigrants, Their Communities, and the Organizations that Serve Them
Indicators of Welfare Dependence, March 2000
Integration of Welfare and Workforce Development Systems
Making Ends Meet: How Mothers Manage When Their Welfare Grants Are Cut
National Evaluation of Welfare-to-Work Strategies (NEWWS)
Pregnancy Prevention Programs Targeting Boys and Young Men: Policy Information Dissemination Strategy
Study of Welfare-to-Work Programs Serving Non-Custodial Parents
The National Evaluation of the Welfare to Work Grants Program
The Role of Intermediaries in Welfare to Work
Welfare Outcomes Panel Study
Welfare Reform and Changing Program Participation Patterns in Four States

Program Systems

Community and Neighborhood-Level Performance Indicators for Human Services
Evaluation Synthesis to Support the Food Safety Strategic Plan
Mississippi Community Works HELP DESK - (MS-CWHD)
Research Consultation on Review of HHS Services Research, Demonstrations, and Evaluations Targeted to Hispanic/Latino Americans
State Telephone Survey Estimates for Evaluation and Monitoring

Disability, Aging and Long-Term Care Policy

A Primer for States and Consumers on Medicaid Home and Community-Based Services

Medicaid, the principal source of financing for long-term care services, has frequently been said to have an "institutional bias," because State spending on nursing homes and institutions outweighs spending on home and community-based supports by a ratio of approximately 80 to 20. Many States have, however, demonstrated that it is possible to work within a Medicaid framework to expand home and community-based services, (HCBS) providing consumers with greater choice and control. Decreased dependence on unnecessary institutional long-term care and the expansion of consumer responsive home and community-based long-term care options are important policies of both the White House and the Secretary for the Department of Health and Human Services. To address this priority, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) proposes to develop a "primer" on existing long-term care options in Medicaid that promote consumer choices in long-term care. The primer will be an important and useful development tool for State Medicaid and aging policy and program staff, consumers and their representatives, and providers interested in the expansion of choices in long-term care, including the promotion of home and community-based options.

PERFORMER: George Washington University Medical Center, Center for Health
Outcomes Improvement Research, Washington, DC

A Study of Home Health Practice Variations Study

Medicare home health has been the subject of considerable research, but the actual practice of home health care has not been extensively examined. What takes place during a visit and between visits as "actual practice" has never been measured. Furthermore, the extent to which various parties participate in the decision making process, is also unknown. Such information is needed to improve understanding about actual practice and explain its variations. This study will analyze variations in home health care services, focusing on patient characteristics, provider characteristics, agency characteristics and market characteristics. Primary data will be collected at the patient and agency levels. Data from this study and the Health Care Financing Administration's (HCFA) Outcomes of Home Care Study will be used to assess the relationships between the process of home health care and its outcomes and resource use.

Analysis of Patterns of Post-Acute and Chronic Care Services Use Among Disabled and Non- Disabled Medicare Beneficiaries: 1989-1994

This study uses the 1989 and 1994 National Long-Term Care Surveys to analyze factors that predicted growth in Medicare post-acute (i.e., home health and skilled nursing facility) benefits from the late 1980s through the mid-1990s.

Analysis of the Disability Supplement to the National Health Interview Survey

The disability supplement to the National Health Interview Survey (NHIS-D) is the first comprehensive survey on disability in the United States. The survey is unique in that it focuses on several populations of persons with disabilities who are generally omitted or under-represented in national survey efforts: children, persons with mental retardation and other developmental disabilities and the working-age population. The goal of this project is to conduct a series of analyses and produce both short- term products and final reports that will inform ongoing Assistant Secretary for Planning and Evaluation (ASPE) departmental and administrative research and policy initiatives. The analyses will address a specific set of questions in four topical areas using the NHIS-D: (1) welfare receipt and disability (including chronic illness); (2) disability and chronic illness among low income populations; (3) childhood disability and chronic illness; and (4) employment and disability.

Assessment of Home Care Benefits Used by Holders of Private Long Term Care

This study will examine formal and informal home and community-based long-term care (LTC) services use among private insurance policy holders "in claim" (i.e., those who are receiving insurance benefits). It will compare patterns of formal and informal services use among these insurance claimants with those of a nationally representative sample (from the 1994 National Long-Term Care Survey) of disabled elders living in the community. Statistical processes will be employed to match claimants with particular characteristics (e.g., age, marital status, disability level) to elders in the national sample. The purpose of the comparison will be to measure the effects of private long-term care insurance on access to formal home care services and to determine whether or to what extent insurance-financed formal services supplement or substitute for informal family care. The study will also examine the interaction between insurance financed home care and the use of Medicare home health services.

Characteristics of Nursing Home Residents

Caring for persons with disabilities in the least restrictive setting is a major long-term policy objective. It is important to identify nursing home residents who could be discharged to the community if appropriate home and community-based services were available. This project will analyze data from the Minimum Data Set (MDS). The MDS consists of assessments which have been conducted on all nursing home residents in selected States as part of a HCFA demonstration (and starting the summer of 1998, the data will be collected in all 50 States). Using this new data set will also more information about the medical conditions, functional needs, and specific services used by nursing home residents than was possible with previous data sets. It will also be possible to study important subpopulations, especially the nonelderly. the policy implications of the findings will be assessed.

Development and Validation of a Performance Measure Set for the Evaluation of Medicaid Services Rendered to People with Developmental Disabilities

This project is to select and validate a performance measure set that will be used to evaluate the quality and appropriateness of Medicaid services rendered to people with developmental disabilities. It is expected that the measure set developed will be useful within HCFA's regulatory quality monitoring programs and to inform quality improvement activities. The measure set will also be available to provide information to consumers, to provide information on system wide strengths and weaknesses, and to provide information to payers of health care, including HCFA, States and private payment sources, for use in evaluating the quality and value of services. The project will first recommend and then alpha test a performance measure set to determine its utility and feasibility for use in Intermediate Care Facilities for the Mentally Retarded (ICF/MR). Effort will be made to assess information currently collected by States to determine how such information can be used as performance measures.

Evaluation of Practice in Care (EPIC)

From 1989 to 1992, there was a 210 percent increase in Medicare expenditures for home health services. This increase in utilization has generated policy interest in measures to control expenditures without compromising quality. Medicare home health has been the subject of considerable research, but the actual practice of home health care has not been extensively examined. This study will: (1) analyze "episodes" of care under the Medicare home health benefit, (2) assess the actual practice of care, (3) determine the extent to which there is variation in practice between acute and long-term care patients, and (4) uncover the factors accounting for that variation. The study will also examine decision-making processes between patients, providers and physicians. The events that take place during a visit and between visits as "actual practice" have never been measured. Furthermore, the function of decision-making by various parties has not been observed in "actual practice". This effort to understand issues surrounding regional and practice variations of home health care delivery will aid the Department of Health and Human Services and the industry in combating fraud and abuse, as well as contribute valuable data to a future prospective payment system.

Evaluation of the District of Columbia's 1115 Waiver for Children with Special Health Care Needs

This project, co-sponsored by ASPE and HCFA's Office of Research and Demonstrations (ORD) is an evaluation of the District of Columbia's 1115 waiver demonstration. The District's waiver is the first approved demonstration to integrate acute and long-term care services for SSI eligible children with disabilities in a single capitated payment system. The study analyzed enrollment data and documented the experiences of the District, the health plan, providers, and children and their families. The study will be used to inform both State and Federal policy makers who increasingly regard managed care as a means of containing growing health care expenditures. The first report is now available on the HHS website: http://aspe/hhs.gov/daltcp/reports/dc-yr1 es.htm.

Evaluation of the Oregon Medicaid Reform Demonstration

The disability supplement to the existing Health Care Financing Administration (HCFA) evaluation of the Oregon Medicaid Reform Demonstration attempts to add a disability focus to the Statewide evaluation. This supplement will focus on the experiences of disabled children and adults (physically disabled, mentally retarded, or developmentally disabled) who are enrolled in the Oregon Health Demonstration. The disability supplement will examine cost and utilization data, and will link this data to functional data collected by State agencies and managed care plans. In addition, the supplement will conduct a survey of consumers and providers to examine issues of satisfaction, access, quality, health status and functioning. See PIC ID 6166 and the 6289 series.

Long Term Care Microsimulation Model

The Long-Term Care Financing Model is a resource which has been extensively used by ASPE to project future long- term care utilization and expenditures and simulate various long term care policy options. These include expansions of public financing, such as those proposed during health care reform, as well as changes to Medicaid and Medicare. The model has also been used extensively to study private sector policy options, such as the impact of further growth on private long-term care insurance and the impacts of changing trends in disability rates on long-term care use and expenditures. Recent data on disability rates, nursing home use, and home care use will be used to update existing portions of the model. In addition, the model will be expanded to include acute care use, thereby increasing the Assistant Secretary for Planning and Evaluation's (ASPE's) ability to simulate a wide range of policy options. ASPE will use this computer model for projections and policy simulation and a series of policy simulations from the revised model will be presented in reports. In addition to its previous long-term care policy uses, the revised model will enable ASPE to address acute care issues, such as the combined burden of acute and long-term care spending on the elderly. Since the model simulates the income and assets of the population, including pension and Social Security payments, the model will also be used to study other aging-related issues, such as the impact of changes in employer-sponsored health insurance for retirees.

Longitudinal Study of Welfare Reform and Its Implications for Persons with Disabilities

This project will explore how welfare reform affects the well-being of persons with disabilities. Relevant questions to be addressed in this study include: How will welfare reform affect the well-being of adult TANF recipients with disabilities? What types of accommodations are being made to increase the work capacity of individuals with disabilities? Are persons with disabilities receiving appropriate job training that would enable them to move into the workforce? How will the well- being of children or adults with disabilities be affected if their primary caregiver has to work? How do families that contain persons with disabilities adapt to the new welfare environment? What types of changes in support systems occur to maintain the medical and other care needs of dependents with disabilities? What role do programs for persons with disabilities, such as early intervention programs and Supplemental Security Income (SSI), play following welfare reform?

Managed Delivery Systems for Medicare Beneficiaries with Disabilities and Chronic Illnesses

This project will study the experiences of elderly Medicare beneficiaries with disabilities and chronic illnesses in a managed delivery system (MDS) at four separate sites. An MDS is broadly defined as a health care system that integrates the financing and/or delivery of primary, acute and long-term care of persons for the purpose of controlling costs and improving access to, and coordination of, services across a continuum of providers. The specific goals of the study are to: (1) foster a better understanding of the unique characteristics and health/long-term care needs of elderly persons with disabilities and chronic illnesses among health plan administrators, providers and policymakers; (2) assess how managed care delivery systems meet the needs of this population and the factors that promote or impede success; and (3) describe the health care experiences of disabled elderly Medicare beneficiaries in MDS.

Medicare Home Health Practice Variations

The main goal of this study is to examine how patient, provider, agency and market/regulatory forces relate to variations in Medicare home health care practices and outcomes. Three key questions form the basis of the study: (1) What is the actual practice of home health care in terms of amount, type and decision-making? (2) How are decisions about care made in light of the Health Care Financing Administration's (HCFA) Medicare home health care coverage rules? and (3) What elements of practice are associated with long lengths of stay in the home health benefit? The study will use a range of quantitative and qualitative methods to address these questions, including longitudinal data collection on samples of home health agencies and home health patients at those agencies, focus groups, case studies and analyses of secondary data.

Medicare Post-Acute Care: Quality Measurement

This project will specify performance measures that can be used to determine the cost-effectiveness of post-acute care (PAC) services. The specific measures and data elements will apply to patient conditions that are prevalent within and across PAC settings. In addition, this project will identify the data collection methods that could be used with respect to these elements. Finally, this project will identify issues that need to be considered in applying these measures, including whether there is the need to engage in validity and reliability testing, and, if so, how.

Monitoring the Health Outcomes for Disabled Medicare Beneficiaries

The Balanced Budget Act (BBA) of 1997 mandated major changes in home health payment requiring the implementation of a Prospective Payment System (PPS) by October 1999 (later delayed until October 2000) and an Interim Payment System (IPS) prior to the implementation of PPS. It also contained changes in eligibility and coverage for home health services. These changes, while intended to reduce Medicare home health costs. run the risk of reducing beneficiaries' access to appropriate care and adversely affecting health outcomes, especially for beneficiaries needing the most care. Disabled Medicare beneficiaries are most vulnerable. The purpose of this project is to study the impact of recent payment policy changes on disabled Medicare beneficiaries' satisfaction and quality of life with a view toward formulating inferences that will inform national home health care policy for the disabled. The study will build on a research project recently funded by the Home Care Research Initiative of The Robert Wood Johnson Foundation that examines the direct and indirect effects of the BBA changes. The main focus is to examine BBA impacts on Medicare beneficiaries' access to care, costs, satisfaction, and quality of care.

Outcomes and Costs Associated with Medicare Post-Acute Services in Skilled Nursing Facilities, Rehabilitation Hospitals/Units, and Home Health Settings

This project will study the cost-effectiveness of Medicare post-acute care services for Medicare beneficiaries with certain conditions, within and across post-acute care settings and over episodes of care. The study will examine the: (1) demographic and health-related characteristics of Medicare beneficiaries who use post-acute services following a hospital stay to examine how much overlap there is in the patient populations treated by each provider type and across provider types; (2) patterns of service use and costs associated with the treatment of similar patients in each setting and across episodes of care; (3) outcomes for similar Medicare beneficiaries by each post-acute provider type and across episodes including those in which multiple providers are used; (4) relationship between outcomes for similar patients and differences in the mix and intensity of services provided, and level of reimbursement across post-acute care providers and episodes of care; and (5) core measures that are most useful to incorporate into on-going reporting requirements to monitor outcomes in each post-acute care setting and across episodes of care.

Personal Assistance Services "Cash and Counseling" Demonstration/Evaluation

This study will employ a classical experimental research design (i.e. random assignment of participants to treatment and control groups) in order to test the effects of "cashing out" Medicaid-funded personal assistance services for the disabled. Arkansas and New York are expected to participate in the demonstration, with an option to expand to include New Jersey and Florida. Control group members will receive "traditional" benefits in the form of case-managed home and community- based services where payments for services are made to vendors. Treatment group members will receive a monthly cash payment in an amount roughly equal to the cash value of the services that they would have received under the traditional program. It is hypothesized that cash payments will foster greater client autonomy and that, as a result, consumer satisfaction (particularly among disabled persons under age 65) will be greater. It is also hypothesized that States will save Medicaid monies (mostly in administrative expenses) from cashing out benefits.

Private Payers Serving Disabled Individuals and Research Synthesis on Managed Care for Persons with Disabilities

This project serves two major purposes: (1) examine the experiences of disabled persons in managed care plans sponsored by selected large employers, and (2) synthesize the results of all components of the Office of the Assistant Secretary for Planning and Evaluation (ASPE) research plans on managed care and disability and other relevant research in order to analyze their implications for policy development. The employer-based portion of the project will: (1) develop a methodology for identifying individuals with disabilities from the health care databases maintained by several large employers and health insurers; and (2) track the impact of managed care enrollment on disabled participants and their access to appropriate services, service utilization patterns, health care expenditures and quality of care. The policy synthesis will use the information gathered in the employer-based part of the project in conjunction with Medicaid evaluations, Department of Health and Human Services (HHS) research and other relevant information in order to draw lessons for policy research on several issues. These issues include: (1) the performance of managed care in serving people with disabilities compared to fee- for-service plans; (2) how, and to what extent, managed care plans can provide comprehensive services to this population in a financially viable manner; (3) the development of risk adjustment and risk sharing in order to provide incentives to clinically appropriate and cost-effective care; and (4) the policies and practices most likely to contribute to an appropriate balance between clinical and financial success.

Research on Employment Supports for People with Disabilities

The goal of this contract is to provide information to help improve the employment rate of adults with disabilities. This includes: (1) gathering descriptive data about public and private sector employment programs, (2) examining successful employment supports, and (3) investigating factors affecting the ability to work. The products from this study will benefit the disabled and those interested in improving employment opportunities for people with significant disabilities.

State Activities in Serving Persons with Disabilities in Managed Care Arrangements

The goal of this project is to obtain four papers from the National Academy for State Health Policy (NASHP) and link them to the DALTCP's managed care and disability website. Three of these papers have been previously prepared by NASHP, and require updating and reformatting. The fourth paper, analyzing trends in the State Medicaid managed care programs related to disability, will require analysis of previously collected State level data. DALTCP intends, through this project, to build a collaborative relationship with NASHP as a technical assistance and case study resource for the managed care and disability research agenda within the Office of the Assistant Secretary for Planning and Evaluation. The specific objectives of this task order are as follows: (1) to re-analyze current managed care work and to glean specific information about disability policy and practice in the areas of elderly, dual eligibles, emerging practices/policies, and NASHP's State survey; and (2) to develop the appropriate mechanisms to link the NASHP web page to ASPE's web page.

Synthesis and Analysis of Medicare Hospice Benefit

The rapid rise in Medicare hospice expenditures, particularly on behalf of nursing home residents, has drawn the attention of a wide variety of health policymakers and the Office of the Inspector General (OIG). The OIG has advanced recommendations to modify how Medicare and Medicaid will pay for these services. However, a larger study is needed to examine key hospice trends nationally and in selected States. Additional information on the Medicare hospice benefit, including trends in utilization and expenditures, who is covered, and where, will help inform health policymakers as they consider alternative hospice benefit and payment designs. This project will describe trends and issues with the Medicare hospice benefit, particularly with respect to nursing home residents who elect this benefit. Information will be gathered through a review of the literature, discussion with key informants, and an analysis of claims, assessment and provider data. This project will: (1) examine trends in Medicare and Medicaid hospice and non-hospice utilization and expenditures for hospice and other similar beneficiaries; and (2) compare the quality of care for hospice beneficiaries.

Health Policy

Access and Utilization of New Antidepressant and Antipsychotic Medications

The proposed project involves a collaboration with the National Institute of Mental Health (NIMH). Very little is known about how and why decisions are made regarding insurance coverage for many of the newer antidepressant and antipsychotic medications. The proposed study will provide important insight and knowledge from multiple perspectives (and with regard to multiple programs) concerning the often complex processes related to access, utilization and coverage of newer psychotropic medications. This new knowledge will serve to inform the department in efforts to evaluate existing and proposed policies.

An Inventory of Federal HIV-Related Databases

This project will develop an inventory of major Federally sponsored HIV-related databases. The inventory will describe the relevant databases and review their potential applications for administrative, clinical research, epidemiologic, financing, policymaking, or program administration purposes. It will also identify key research questions that could be addressed by these databases and identify opportunities for cross-agency collaboration in data collection or analysis. The project will produce a final report including an annotated inventory, as well as the relevant database assessments that point to key research issues and opportunities for interagency collaboration and cross-cutting analyses.

Assessing Core Capacity for Infectious Disease Surveillance

This project will assess the capacity of the infectious disease surveillance system in the United States. The purpose is to identify major gaps in infectious disease surveillance preparedness and to develop an investment framework to address the gaps identified. This multi-part study included a comprehensive literature review, interviews with infectious disease experts, two expert panel meetings, and site visits to three public health jurisdictions. The final investment plan will include detailed information on specific investment strategies that will ensure adequate capacity to identify and understand infectious disease threats.

Assessment of Approaches to Evaluating Telemedicine Programs and Projects

This project will collect information on current and planned evaluations of telemedicine activities; assess the purpose and methods of such evaluations and the relevance of the resulting or potential findings to federal policy and programs; and develop a conceptual framework for designing such evaluations. Information will be collected through literature searchers, interviews and document review at Federal agencies, and site visits to ongoing telemedicine projects. The purpose of the study is to develop a better understanding of how telemedicine evaluations can be designed to better inform and facilitate Federal program and policy decisions.

Comparative Analysis of Decliners of Employer-Based Health Insurance

This study will compare health care use of uninsured decliners to uninsured and insured workers. One theory for why certain people decline offered health insurance is that it is not a good deal for them--especially young, single, relatively low wage workers. To test this theory, we will compare health care use for workers who decline employer offered insurance to other uninsured workers and to insured workers using the NHIS and controlling fro age, health status, income and other factors that are related to health care use.

Consequences and Cost of Intimate Partner Violence

This project will apply the methodology developed in "The Cost of Domestic Violence to the Health Care System" (PIC ID No. 4528) to prevalence and other data related to violence committed by adult intimate partners. The study will document the incidence of violence against women by intimate partners, estimate economic costs of related injuries and develop preliminary recommendations for reducing incidence and related injuries. It will form the basis for a report to Congress, authorized under the Crime Act. This project will be jointly funded by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) and the Centers for Disease Control and Prevention (CDC). See also PIC 4528.

PERFORMER: University of CA, San Francisco, Institute for Health and Aging
San Francisco CA

Construction of an Integrated Measure of the Burden of Disease

The burden of disease in a population consists of the morbidity and disability experienced by its members, their psychological perception of the adequacy and effectiveness of the care they receive, and resources expended for health maintenance. The essence of medical care is to determine the balance among these components that will most enhance overall health. The objective of the proposed project is to develop and evaluate analytic techniques that will permit: (1) the construction of an integrated measure of the burden of disease based on the explicit assessment of what trade-offs are currently accepted; and (2) identify changes in strategies to optimize the mix.

Consumer Protection in Private Insurance: State Implementation and Enforcement Experience

This project will attempt to assess the major sources of consumer dissatisfaction with health plans, based on the complaints that are filed. It will also assess implementation of two or three selected consumer protections in a few states that have had such protections in place for several years, such as the ER "prudent layperson" standard and direct access to OB/Gyn, and anti-gag provisions. The project would look at how state health and insurance departments, state attorney general offices implement/enforce existing legislation relevant to state consumer protection laws. A task-order contractor would compile and categorize the nature of consumer complaints about health plans from as many sources of complaints as possible. The contractor will also inquire about related issues, such as: how do States handle complaints from consumers in ERISA- regulated plans? Are complaints being used to improve health plan operations?

Consumer Protection in Public Health Programs

The Consumer Protection Workgroup of the Secretary's Quality Initiative has been working over the past year to identify ways in which the beneficiaries and participants in all Department programs could be assured protections at least equal to those identified in the Consumer bill of Rights and Responsibilities. This project will look at standards for care that service providers must follow as well as other consumer protection issues as they arise in the Public Health Service programs. Specifically, it will fund an expert workshop and paper that would bring together researchers, state representatives, consumer representatives and others to provide outside expert guidance to the workgoup about the need to modify or strengthen consumer protections in both direct and block grant-funded programs, and provide recommendations for possible program changes. As funds allow, this allocation will also be used to provide seed money for other projects identified by the workgroup.

Developing a Framework for Domestic Infectious Diseases Surveillance

The purpose of this study is to develop an analytic framework that can be used to help create consensus on core capacities needed at each level of government for effective national infectious diseases surveillance. Emphasis will be placed on several areas including: (1) defining the relative roles of each level of government, and of the public and private sectors; (2) analyzing resource issues with particular attention to sources of funding, and to categorical versus integrated funding streams; (3) translating surveillance activities into meaningful public health responses; (4) evaluating surveillance activities; and (5) identifying training needs. The study will take into account the rapidly changing environment, especially the role of local health departments, and the changing nature of infectious diseases. The work will consist of: (1) collecting and analyzing data and information from the literature and from experts; (2) using this information to develop an initial framework describing what is needed for effective surveillance; and (3) establishing an expert panel which will use the framework as a tool to reach consensus on the minimum core capabilities needed at each level of government, and the relative roles of the public and private sector for more effective national infectious diseases surveillance.

Employer Decision Making in Health Care Coverage

Employers, particularly larger employers, face a complex array of decisions in developing a health care benefits package for their employees. This project would use a combination of in-house resources and a task-order contract to put together case studies on employers. It will identify employers taking interesting approaches to issues relevant issues surrounding health benefits, and then choose the case study targets. For example, one purchaser has adopted a multi-year contracting strategy which involves a number of give-backs and set-asides tied to the plans ability to reduce absenteeism and produce productivity. This study would examine this and other similar arrangements for strengths, weaknesses and possible implications for use by the Medicare and Medicaid programs.

Evaluating the Effects of Direct-to-Consumer Advertising on Consumers

The goal of this project is to improve our understanding of direct-to-consumer (DTC) advertising. The relation of this kind of advertising to aspects of public health will be examined through a survey of selected consumers and the Food and Drug Administration (FDA) Center for Drug Evaluation and Research's (CDER) analysis of that survey. This analysis will yield an initial broad description of some possible associations between DTC advertising and consumer knowledge, attitudes and behaviors. The survey and CDER's descriptive analysis will lay the foundation for the long- term task of determining what effects DTC advertising may have on overall consumer knowledge, attitudes and behaviors concerning prescription drugs and the overall effects of this practice on the public health.

	Office of the Assistant Secretary for Planning and Evaluation

	Policy Information Center

Office of the Assistant Secretary for Planning and Evaluation

Policy Information Center

Chapter III

Compendium of HHS Agency FY 1999

Evaluations Completed and In Progress

OFFICE OF THE ASSISTANT SECRETARY FOR PLANNING AND EVALUATION

Fiscal Year 1999 Evaluation Reports

In-Progress Evaluations